Global Community Hepatitis Policy Report

2014

A civil society response to information submitted by governments for the first World Health Organization hepatitis policy report © World Hepatitis Alliance, 2014

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@Hep_Alliance Global Community Hepatitis Policy Report

Table of Contents

Foreword 4

Acknowledgements 5

Executive Summary 6

Chapter 1: Introduction: Why We Need a Unified Global Response to Viral Hepatitis 8

Chapter 2: Global Hepatitis Priorities: Five Key Issues Raised by Civil Society Survey Findings 18

Chapter 3: Global Findings 24

Chapter 4: African Region 29

Chapter 5: Region of the Americas 65

Chapter 6: Eastern Mediterranean Region 93

Chapter 7: European Region 107

Chapter 8: South-East Asia Region 189

Chapter 9: Western Pacific Region 217

Annex A: Study Methodology and Limitations 251

Annex B: World Hepatitis Alliance 2014 Survey of Civil Society Stakeholders 253

Annex C: Findings for All Civil Society Survey Items 262

Annex D: World Health Assembly Resolution 67.6 266 Table Contents of

3 Foreword

In her foreword to the 2013 Global Policy safe water, safe food, harm reduction, Report on the Prevention and Control of universal childhood vaccination – should Viral Hepatitis in WHO Member States, be happening anyway because it is part World Health Organization Director- of a well‑functioning health system. We General Margaret Chan wrote that viral need also to develop innovative funding hepatitis is “responsible for a widely mechanisms and to use existing resources, prevalent and growing disease burden”, programmes and infrastructure cleverly. adding that “no country, rich or poor, is spared.” In human terms, that translates Most important of all, when we are short into 1.5 million people dying every year, of both human and financial resources, the same as from AIDS and significantly we need to work together. The new more than from tuberculosis or malaria. hepatitis resolution specifically calls on Yet for many years, with the exception governments to work with civil society of scaling up hepatitis B vaccination, and this report shows how infrequently almost nothing was done at a global that happens. This is not simply about level. So much death and misery. So little governments failing to engage. action. Inexplicable. The different elements of civil society, and patient groups in particular, are So it was patient groups that stepped not nearly numerous or strong enough. into this vacuum. We established World This must change. The World Hepatitis Hepatitis Day in 2008. We galvanised Alliance is committed to strengthening governments to adopt the first ever World civil society but we need the support Health Assembly resolution on viral and encouragement of governments in hepatitis in 2010 and then another, stronger doing this. If as a world we need to be resolution this year. We persuaded WHO smart to tackle viral hepatitis effectively, to undertake the Global Policy Report it is imperative that civil society is fully and provided financing for it. That report, involved and also has the capacity to be however, gave only the government view fully involved. That is the key message on policy in each country. We wanted also of this ground-breaking report. to solicit the views of civil society to give a fuller, more rounded picture of what is happening across the world to prevent new infections and help the 400 million of us living with chronic viral hepatitis. The result is this report.

What is clear is that not enough is Charles Gore happening. Very few countries have President, World Hepatitis Alliance comprehensive national hepatitis strategies and there is a scarcity of global resources. In such an environment we are going to have to be smart. We need to emphasise how much of hepatitis prevention – safe blood, safe injections,

What is clear is that not enough is happening. Very few countries have comprehensive national hepatitis strategies and there is a scarcity of global resources. Foreword

4 Global Community Hepatitis Policy Report

Acknowledgements

The World Hepatitis Alliance would like to thank all of the organisations that took the time to respond to our survey. Many of you are working with extremely limited resources and we appreciate that completing the survey adds an extra burden to your daily work. We assure you that the results of your efforts are of global importance.

This report was written by Jeffrey V. Lazarus, Kelly Safreed- Harmon and Ida Sperle from CHIP, the Centre for Health and Infectious Disease Research, a World Health Organization (WHO) Collaborating Centre at Rigshospitalet, University of Copenhagen, Denmark. The authors designed, implemented and analysed the survey in a six-month period in order to have results ready for World Hepatitis Day 2014. The Alliance is pleased to have continued our collaboration with them, and is grateful for their hard work and commitment to hepatitis as an urgent global public health priority.

Charles Gore, the president of the World Hepatitis Alliance, oversaw the entire process of developing this report, and also provided valuable input regarding its structure and content. Hilary Campbell and Dylan O’Sullivan of the Alliance coordinated the production of the report and commented on its content, while Bridie Taylor assisted with the database of respondents. The Alliance Board Members Christopher Malco, Theobald Owusu-Ansah, Ammal Mokhtar, Dalibor Ruzic, Humayun Kabir and Gerardo Obregon were instrumental in reaching out to Alliance members regarding the report.

Raul Bender and his team prepared an interactive online version of the report available at http://global-report.worldhepatitisalliance.org/en/.

Finally, this report is a response to the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States published by the World Health Organization. We applaud WHO for raising the profile of hepatitis within the Secretariat and among Member States. Acknowledgements

5 Executive Summary

The 2014 Global Community Hepatitis Policy Report is a civil The global burden of disease society response to information provided by governments for the World Health Organization’s 2013 Global Policy Report from the five major types of viral on the Prevention and Control of Viral Hepatitis in WHO Member States. The World Hepatitis Alliance asked civil society hepatitis – A, B, C, D and E – organisations to review the information their governments submitted for the 2013 WHO report and to comment on its urgently demands an intensified accuracy using a 25-point survey instrument. The survey also asked civil society organisations to write short statements about response. As the World Health what they considered to be key aspects of the policy response Assembly’s passage of viral to viral hepatitis in their countries. Ninety-five organisations from 58 countries and one special hepatitis resolutions WHA 63.18 administrative region responded to the World Hepatitis Alliance’s request. Seventy-six organisations were able to in 2010 and WHA 67.6 in 2014 comment on their governments’ responses from the 2013 report. The other 18 organisations responded from countries where reflects, civil society is helping the government had provided no information for the 2013 report. to define a new era in the They instead provided short statements. Almost 30% of respondents to the civil society survey identified response to viral hepatitis. themselves as hepatitis patient groups, and another 16% identified themselves as nongovernmental direct service providers. However, the World Hepatitis Forty-two percent of respondents were from countries in the European region, with considerably less representation of Alliance is concerned about countries in other regions. Most respondents were from either civil society being insufficiently high-income countries (41%) or upper-middle-income countries (22%). The following survey items were most commonly identified involved at the national level. as points on which civil society respondents agreed with their governments’ responses:

>> the existence of a national strategy or plan for the prevention and control of viral hepatitis; >> the existence of a national hepatitis A vaccination policy; >> injection safety in health care settings; and >> infection control for blood products.

The following survey items were most commonly identified as points on which civil society respondents disagreed with their governments’ responses:

>> whether the government has a viral hepatitis prevention and control programme that targets specific populations; >> viral hepatitis surveillance; and >> disease registration and reporting.

The World Hepatitis Alliance is particularly concerned about five key issues raised by civil society survey findings:

Encouraging the participation of diverse >> There appears to be considerable disagreement between actors in new forms of partnership is governments and civil society organisations about how national responses to viral hepatitis are being managed. of paramount importance because the >> There does not appear to be a sufficient level of partnership response to viral hepatitis must take into between government and civil society actors in many account many different types of public countries, and civil society actors may not have appropriate health and development issues. input into government hepatitis strategies and policies. Executive Summary Executive

6 Global Community Hepatitis Policy Report

>> Far too few countries have national viral hepatitis strategies, which are the foundation of an effective response. Even where official strategies are in place, the question remains of whether a strategy is actually guiding a unified national response. >> The shortcomings of existing viral hepatitis surveillance systems have the potential to undermine efforts to address this group of diseases at the national, regional and global level. >> While recent hepatitis C treatment advances are greatly welcomed, there is the danger that excitement about the new drugs will draw attention and funds away from essential viral hepatitis prevention priorities.

Quantitative and qualitative findings from the 2014 Global Community Hepatitis Policy Report lead the World Hepatitis Alliance to make the following recommendations to governments:

>> Establish robust monitoring mechanisms to track viral hepatitis activities and key performance indicators nationally. Monitoring outputs should be widely disseminated, and special efforts should be made to share information with civil society stakeholders. >> Engage more directly with civil society, including hepatitis patient groups, and help foster the creation of new hepatitis patient groups where none exist. >> Develop comprehensive multisectoral national viral hepatitis strategies, drawing on WHO and the World Hepatitis Alliance for technical support. Sufficient funding must be allocated to implement those strategies. >> Integrate the implementation of national viral hepatitis strategies with national public health agendas, while at the same time monitoring specific hepatitis-related outcomes. >> Introduce or improve national viral hepatitis surveillance systems. >> Issue evidence-based guidance on hepatitis prevention and establish consensus about which aspects of viral hepatitis prevention should be prioritised based on the national epidemiological context. >> Recognise and seek to overcome barriers that deter members of most-at-risk populations from accessing hepatitis prevention and treatment services and commodities. >> Ensure access to prevention and treatment services for everyone in need without discrimination.

Encouraging diverse actors to participate in new forms of partnership is of paramount importance because the response to viral hepatitis must take into account many different types of public health and development issues. All voices need to be heard if the global community is to make real progress on viral hepatitis, one of the most complex health threats of the twenty-first century. Executive Summary

7 Introduction: Why We Need a Unified Global Response to Viral Hepatitis 1

Main Messages

Civil society is helping to Governments and define a new era in the global the international community response to viral hepatitis. must improve their efforts.

The burden of disease from the five major types of viral Efforts at the national and subnational levels must be hepatitis – A, B, C, D and E – urgently demands the world’s tailored to address the diverse vaccination, awareness, attention. The complexity of viral hepatitis virtually ensures prevention, screening and treatment needs of people in that this group of diseases will not be brought under control different settings. International actors can play an important by science alone. Instead, people with many different role in this regard by providing government and civil society kinds of expertise must work from within and outside of stakeholders with tools and resources that can be adapted the medical and public health establishments to translate to fit a wide range of epidemiological and social situations. technical knowledge into practical solutions. To support informed decision-making, viral hepatitis As the World Health Assembly’s passage of viral hepatitis monitoring and reporting activities must be greatly resolutions WHA 63.18 in 2010 and WHA 67.6 in 2014 reflects, expanded and strengthened in many countries. Furthermore, civil society is helping to define a new era in the global monitoring and reporting need to be systematised globally, response to viral hepatitis. However, the World Hepatitis with all countries collecting data in accordance with the same Alliance is concerned about civil society being insufficiently indicators of the hepatitis disease burden as well as indicators involved at the national level. of progress toward prevention and treatment goals. Chapter 1: Introduction

8 Global Community Hepatitis Policy Report

Governments can address Building a unified global viral hepatitis more response to hepatitis requires effectively with the help of building relationships among strong civil society partners. diverse stakeholders.

In recent decades, civil society actors have made invaluable The World Hepatitis Alliance seeks to ensure that a unified contributions to the global response to public health issues global response to viral hepatitis is manifested in the such as reproductive health, HIV and cancer. Involvement of comprehensive national strategies that all countries are such a nature is our only hope for overcoming the immense being encouraged to develop. A solid strategic foundation barriers to viral hepatitis prevention and control. exists upon which countries can build. The components of this foundation are put forth in the World Health Within the civil society realm, the special role of hepatitis Assembly viral hepatitis resolutions and in the World Health patient groups needs to be recognised. Patient groups are Organization (WHO) viral hepatitis strategic framework.1,2,3 uniquely qualified to propose and help implement solutions to problems facing viral hepatitis patients and those who As these documents reflect, we already know what to do in are at high risk of infection. many regards in order to prevent new infections and to reduce suffering and death from viral hepatitis. The challenge is From a pragmatic standpoint, it is smart for governments to apply this knowledge – which in many parts of the world and other key stakeholders to welcome the involvement will involve overcoming formidable barriers relating to and advocacy efforts of hepatitis patient groups and their complacency, ignorance, stigma and resource limitations. allies. From a human rights standpoint, giving the members In light of these barriers, the World Hepatitis Alliance of these groups a voice in the policy discourse recognises believes that building a unified global response to hepatitis their right to participate in decision-making about the health is fundamentally about building relationships between issues that affect them. stakeholders at all levels – globally, nationally and locally.

It is hoped that the World Health Organization, through its global headquarters and its regional and country offices, will serve as an important facilitator of relationships between government and civil society representatives. WHO can also contribute to a unified global response to viral hepatitis by issuing much-needed policy and technical guidance.

All voices need to be heard if the global community is 1: Chapter to make real progress on viral hepatitis, one of the most complex health threats of the twenty-first century. Introduction

1. World Health Organization. Sixty-third World Health Assembly. Viral Hepatitis: WHA 63.18. Geneva, Switzerland, 21 May 2010. Available at: http://apps.who.int/gb/ebwha/ pdf_files/WHA63-REC1/WHA63_REC1-P2-en.pdf. 2. World Health Organization. Sixty-seventh World Health Assembly. Agenda Item 12.3: WHA 67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. Available at: http://apps.who. int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf. 3. World Health Organization. Prevention and control of viral hepatitis infection: framework for global action. Geneva, Switzerland, 2012. Available at: http://www.who.int/csr/ disease/hepatitis/GHP_Framework_En.pdf?ua=1.

9 Introduction continued

The development of direct-acting antiviral The global response to viral hepatitis is entering a new era – but not the one that might be suggested by the flurry of interest agents has revolutionised [hepatitis C] in new hepatitis C drugs with much higher cure rates. treatment by offering genuine prospects for the first comprehensive cure of a Recent treatment advances are indeed remarkable, especially considering that the virus targeted by these drugs was identified chronic viral infection in humans. less than three decades ago. But there is an enormous difference between pharmaceutical companies creating a product that can Raymond T. Chung and Thomas F. Baumert, cure a disease and afflicted people obtaining the drugs, care and writing in The New England Journal of Medicine1 support that they need in order to regain their health.

Excitement about the “medical triumph” of direct-acting antivirals, as a headline in The New England Journal of Medicine proclaimed The cost of the interferon and ribavirin it, threatens to overshadow health system shortcomings that may prevent many people with chronic hepatitis C from being treated treatment regimen is very expensive in successfully. Factors potentially limiting access to treatment Mongolia. ... It is common for people who go far beyond the high cost of the new regimens. Furthermore, receive such treatment [for hepatitis C] there is also insufficient awareness around the world about the need to intensify efforts to prevent all types of viral hepatitis to incur out-of-pocket costs of more and to challenge hepatitis-related stigma and discrimination. than US$ 20,000. Mongolia is a low- Thus, while the World Hepatitis Alliance enthusiastically income country [and] nearly 30% of the welcomes the great progress in relation to hepatitis C, its member ... population is living below the poverty organisations are focusing on a much broader array of issues. line of US$ 2 per day. Because of these The question of who will be able to afford the new drugs is looming large in many countries, while elsewhere there is concern that not brutal realities, odds are really stacked even the highly imperfect standard-of-care treatment for hepatitis C against Mongolians, and it is no surprise – pegylated interferon and ribavirin – is sufficiently available. that Mongolia has the highest liver cancer Meanwhile, hepatitis B – which cannot be cured – poses a greater mortality rate in the world. threat than hepatitis C in some countries, yet receives even less attention. To the limited extent that it has been priortised, the Mongolian respondent to the World Hepatitis main focus has been on the three childhood vaccination doses. Alliance 2014 civil society survey The critical role of birth dose vaccination in preventing perinatal hepatitis B transmission has been widely overlooked, as has been the importance of treatment regimens that can reduce the risk of hepatitis B-related liver cancer.

How World Hepatitis Day contributes to a unified global response

World Hepatitis Day was launched in 2008 in response to co-coordinated by hepatitis patient groups and their partners concern about low awareness of viral hepatitis and lack of are designed to address specific national and community-level willingness to make it a political priority on par with other needs and priorities. While World Hepatitis Day events often major communicable diseases. From the outset, World have a national and local focus, they collectively contribute Hepatitis Day has generated widespread public and media to a unified global response by showing policy-makers that interest, as well as support from governments, communities in different countries and regions are confronting nongovernmental organisations and supranational bodies. many of the same key issues.

In May 2010 the World Health Assembly passed resolution The theme for World Hepatitis Day 2014, “Hepatitis: think WHA 63.18 on viral hepatitis. The resolution provides official again,” guided the development of eight posters featuring endorsement of World Hepatitis Day, with 28 July designated ten key messages. The messages were designed to encourage as the date for national and international awareness-raising people to consider different aspects of viral hepatitis such efforts calling attention to various aspects of viral hepatitis. as prevention, treatment and stigma. One of the 2014 posters Thousands of World Hepatitis Day events have taken place in appears above. World Hepatitis Day posters from 2014 dozens of countries over the years, ranging from ministerial and earlier years appear on the page opposite.

Chapter 1: Introduction meetings to rock concerts. Numerous events spearheaded or

10 Global Community Hepatitis Policy Report

World Hepatitis Day posters 2008–2014

Hepatitis A and hepatitis E are known more for causing short- People with many different kinds of expertise term discomfort than severe disease. Yet they jointly claim must work from within and outside of the 160,000 lives per year, primarily in resource-limited countries, where they can easily spread through contaminated food and medical and public health establishments to water. Furthermore, even mild illness from either of these viruses translate technical knowledge into practical can impose a financial burden on households because of lost solutions for communities and individuals. productivity. Considerable suffering would be prevented with ongoing access to safe water and adequate sanitation. The World Hepatitis Alliance seeks to highlight civil society Recognising that this situation is unacceptable, civil society perspectives in this 2014 report – the first of its kind. Civil society actors are compelled to work in new ways to influence the stakeholders are relative newcomers to the global public health arena, response to viral hepatitis on a global scale. This is the “new and their roles are still being defined in many intergovernmental era” that should be celebrated – one defined by something more and national forums, including those involving the World Health important than any single biomedical advance. The complexity Organization. To ensure that their voices are heard, the 2014 Global of viral hepatitis virtually ensures that this group of diseases will Community Hepatitis Policy Report has been planned as a civil not be brought under control by science alone. Instead, people society response to information provided by governments for the with many different kinds of expertise must work from within 2013 hepatitis policy report published by WHO. That document, the and outside of the medical and public health establishments Global Policy Report on the Prevention and Control of Viral Hepatitis to translate technical knowledge into practical solutions for in WHO Member States, is a welcome resource, but it only utilises communities and individuals. information provided by governments. A full and accurate picture of the policy response to hepatitis at the country level requires In 2010, the World Health Assembly approved resolution additional input from stakeholders with diverse perspectives. WHA 63.18 calling on the World Health Organization (WHO) and Member States to intensify efforts against viral hepatitis.2 The basis for the 2014 Global Community Hepatitis Policy Report WHA 63.18 addressed some of the key concerns of hepatitis is a survey of World Hepatitis Alliance member organisations (patient patient groups that worked through the World Hepatitis groups) and other civil society actors, including nongovernmental Alliance and through their national governments to ensure organisations, academic institutions and medical associations. that the World Health Assembly considered their perspectives. Each organisation was asked to review the information that its The resolution spurred promising changes at WHO, but few government submitted for the 2013 WHO report. The survey asked governments acted on the valuable strategic and technical respondents to comment on the accuracy of the published information guidance that the agency offered. The World Hepatitis Alliance and furthermore invited them to provide a more in-depth analysis and other concerned parties consequently re-engaged key of key national hepatitis policy issues. Organisations based in Member States. In May 2014, the passage of World Health countries where governments did not submit information for Assembly resolution 67.6 on viral hepatitis represented the 2013 WHO report were asked to comment generally on how an effort to compel governments to make their commitment their countries are addressing hepatitis. The survey was sent to to addressing viral hepatitis more tangible.3 approximately 800 organisations worldwide as well as being distributed online and via social media. Ninety-five responses

The World Hepatitis Alliance welcomes the progress seen in were received. (See Annex A for details of the study methodology.) 1: Chapter recent years, but it is concerned about civil society thus far being relegated to a fairly small role in the response to viral hepatitis at the national level. The road ahead is simply too A unified response – one involving hepatitis difficult for conventional leaders to navigate on their own. patient groups and other civil society Introduction A unified response – one involving hepatitis patient groups, other community and civil society stakeholders, medical stakeholders – is our only hope of bringing professionals, researchers, donors and the private sector about the myriad changes that will be – is our only hope of bringing about the myriad changes that will be required in order to greatly reduce suffering and death required in order to greatly reduce suffering from all types of viral hepatitis. and death from all types of viral hepatitis.

11 Introduction continued

1.1. What is the purpose of this report?

This report is envisioned as a resource and tool for all stakeholders involved in the policy response to hepatitis, including policy- makers, public health administrators, advocates, researchers, donors and intergovernmental agencies. It is intended to facilitate dialogue between civil society actors and other stakeholders at the community, national, regional and global levels. Additionally, the report is intended to support efforts to have viral hepatitis prioritised more by national and global leaders.

The following objectives further guided the development of the report:

>> Identifying gaps and shortcomings in national responses to viral hepatitis; Figure 1. Interactive online tool for linking government information >> Promoting government accountability for explicit and implicit with civil society assessments of the information. commitments expressed in the 2013 global hepatitis policy report; and >> Conveying civil society priorities and patient perspectives to decision-makers and other stakeholders. Box 1. Hepatitis A and hepatitis E >> Hepatitis A and hepatitis E outbreaks are most likely to This report is organised as follows. The second chapter of the report occur in settings where access to safe water and adequate presents the World Hepatitis Alliance’s views on key findings from sanitation is limited. the civil society survey and concludes with recommendations >> The World Health Organization estimates that 119 million based on the findings. The third chapter of the report provides a cases of hepatitis A occur every year, causing 31 million global overview of all survey findings. Chapters four through nine cases of symptomatic illness.9 present findings organised by geographical region. The six regions are Africa, the region of the Americas, the Eastern Mediterranean, >> There is no treatment for hepatitis A. Although a safe and Europe, South-East Asia and the Western Pacific. The regional effective vaccine has been introduced, it is not incorporated chapters also summarise findings from each individual survey that into routine immunisation programmes in all countries. was submitted. The study methodology is described in Annex A, >> Hepatitis A most commonly causes relatively mild disease, and the survey instrument can be found in Annex B. Additional with gastrointestinal and flu-like symptoms persisting for global summary data are presented in tables in Annex C. In Annex D, one to three weeks. It can take several weeks or months the full text of World Health Assembly resolution 67.6 is provided. for people to recover fully, and thus hepatitis A has a considerable impact on work productivity and earnings. The World Hepatitis Alliance has created an interactive online tool for linking what governments reported about hepatitis policy >> Hepatitis A occasionally causes more severe disease, issues (the 2013 WHO report findings) with what civil society and older people are at higher risk of developing severe survey respondents said in their surveys about the accuracy disease. Hepatitis A also can cause acute liver failure, of their governments’ information (the findings presented which is a life-threatening condition. in this report). Visitors to the report website — http://global- >> According to Global Burden of Disease estimates, about report.worldhepatitisalliance.org/en/ — can see at a glance the 103,000 deaths in 2010 were attributable to hepatitis A.10 points of agreement and disagreement between government and civil society organisations in each country for which both >> Hepatitis E is believed to infect 20 million people each year, sets of information are available, and can also read civil society with 3.4 million cases resulting in symptomatic illness.11 organisations’ comments about what their governments >> Most people with symptomatic hepatitis E experience reported (Figure 1). mild disease, with symptoms such as nausea, vomiting and fever lasting for one to two weeks. >> A small proportion of hepatitis E infections result in acute 1.2. What is the burden of disease from liver failure and death. Pregnant women and infants are at viral hepatitis? highest risk of death from hepatitis E. >> According to Global Burden of Disease estimates, The five major types of viral hepatitis contribute in very different hepatitis E caused 57,000 deaths in 2010.12 ways to the overall burden of disease. >> A vaccine for hepatitis E was licensed in China in 2012. Hepatitis A and hepatitis E are known for causing sudden It is not yet available in other countries, and there is outbreaks as a result of food or water becoming contaminated. no clear consensus regarding the role of vaccination 4,5

Chapter 1: Introduction The largest outbreaks have infected many thousands of people. in hepatitis E prevention worldwide.

12 Global Community Hepatitis Policy Report

Box 2. Hepatitis B and hepatitis D

>> Modes of transmission for hepatitis B include mother-to- develop liver cancer.14 Chronic hepatitis B is the leading child transmission at birth, sexual contact, the transfusion cause of liver cancer, which in turn is the second most of infected blood products, the use of contaminated common cause of cancer death.15,16 needles in health care settings, and the sharing of injection >> According to the World Health Organization, 240 million equipment among people who inject drugs. people worldwide have chronic hepatitis B.17 Another source >> A safe and highly effective hepatitis B vaccine became puts this figure at 350 million.18 available in 1982. It has been introduced in infant >> Global Burden of Disease estimates indicate that hepatitis B immunisation programmes in more than 180 countries, caused 786,000 deaths in 2010: 17% from acute infection, but coverage is uneven. The World Health Organization 40% from cirrhosis and 43% from liver cancer.19 Another estimates that 79% of infants born in 2012 received the source concluded that mortality may be somewhat lower, recommended three doses of hepatitis B vaccine.13 with an estimated 235,000 deaths annually caused by >> There is no cure for chronic hepatitis B. Infants and children cirrhosis secondary to hepatitis B and 328,000 deaths are much more likely to develop chronic hepatitis B than are annually caused by liver cancer secondary to hepatitis B.20 people who become infected in adulthood. >> Between 15 and 20 million people may be co-infected >> Chronic hepatitis B may be asymptomatic for years or even with hepatitis B and hepatitis D, but the reliability of these decades while causing extensive liver damage. Cirrhosis estimates is uncertain.21 and liver cancer are both serious long-term outcomes. >> Co-infection with hepatitis D appears to put people who >> According to one published source, up to 40 percent of have hepatitis B at considerably higher risk of cirrhosis, people who acquire hepatitis B neonatally will eventually liver cancer and death.22,23,24

Box 3. Hepatitis C >> Hepatitis C disease was known as “non-A, non-B hepatitis” For everyone else, infection with the hepatitis C virus for more than a decade after it was first recognised in the becomes a chronic condition. People with chronic hepatitis C 1970s. The hepatitis C virus was not definitively identified are at high risk of developing cirrhosis and liver cancer. until 1989. >> Antiviral treatment can cure chronic hepatitis C, but not >> Hepatitis C is transmitted primarily through exposure to everyone is responsive to the treatment regimens that are infected blood. In resource-limited countries, exposure currently available. The newest regimens are associated frequently occurs in health care settings, e.g. as a result of with the highest cure rates, but access to these regimens unsafe injection practices or insufficient screening of blood is limited in many countries. products. In high-income countries, the use of contaminated >> According to the World Health Organization, between injecting equipment by people who inject drugs is a major 130 million and 150 million people are chronically infected transmission pathway. Other routes of transmission include with hepatitis C.26 tattooing, sexual contact involving blood, and mother-to- child transmission at birth. >> Global Burden of Disease estimates indicate that hepatitis C caused 499,000 deaths in 2010: 3% from acute infection, >> No vaccine exists for hepatitis C, nor is one likely to be 58% from cirrhosis and 39% from liver cancer.27 Another developed in the near future. source calculated somewhat lower mortality levels, >> In 15 to 45 percent of people who acquire hepatitis C, concluding that 366,000 deaths annually are caused by the virus will be cleared by the body within six months of either cirrhosis or liver cancer secondary to hepatitis C.28 infection; these people are cured without any treatment.25 Chapter 1: Chapter

Hepatitis B is transmitted through blood and other body fluids. Hepatitis C is spread primarily through infected blood. Unlike Although the virus is extremely infectious, it only causes chronic hepatitis B, it is curable. People who do not have access to disease in some cases, most commonly when acquired in infancy hepatitis C treatment or who do not respond to treatment Introduction or early childhood. No cure exists for chronic hepatitis B, may experience long-term liver damage leading to the same and disease progression can lead to cirrhosis, liver cancer outcomes that occur with the progression of hepatitis B and death.6 Some cases of hepatitis B infection are complicated disease – cirrhosis, liver cancer and death.8 by co-infection with hepatitis D, a distinct virus that only strikes people who already have hepatitis B.7 Other key points about the five major types of viral hepatitis are presented in Boxes 1–3.

13 Introduction continued

1.3. How must governments and the international There are at least six major reasons for why governments need community improve their response? strong civil society partners to help them address hepatitis:

An essential foundation for an effective global response to 1. Members of civil society can raise awareness about viral viral hepatitis is a national hepatitis strategy in every country hepatitis, and in some situations can do so more effectively – no country can consider itself to not be affected in one way than government agencies. or another by viral hepatitis. The 2013 Global Policy Report 2. Members of civil society can offset resource limitations on the Prevention and Control of Viral Hepatitis in WHO by contributing lay and professional health resources. Member States indicated that fewer than 40% of the 126 governments that submitted information appear to have such 3. Members of civil society can draw on firsthand knowledge a strategy. A follow-up questionnaire by the WHO Global of community dynamics to share strategic insights about Hepatitis Programme suggested that in fact just 17 have what types of hepatitis interventions are likely to be the comprehensive strategies.29 most successful. 4. Members of civil society are ideally positioned to monitor It is imperative to remedy this situation as quickly as possible, and challenge hepatitis-related stigma as it manifests and the World Health Organization has a vital role to play in helping in various health care and community settings. governments develop comprehensive national strategies. There is also much work to be done to improve the implementation 5. Members of civil society have opportunities to develop of existing national strategies, as reflected in the observations of trusting relationships with marginalised groups that may some of the civil society organisations contributing to this report. not respond to government-driven hepatitis control efforts. Efforts at the national and subnational level must be tailored These groups include immigrants, indigenous people, to address the diverse vaccination, awareness, prevention, prisoners and people who inject drugs. screening and treatment needs of people in different settings. 6. Members of civil society can carry out advocacy among International actors can play an important role in this regard government actors and the general public to win support by providing government and civil society stakeholders with for measures that government health officials would otherwise tools and resources that can be adapted to fit a wide range be unable to implement successfully. of epidemiological and social situations.

Only by measuring progress – or the lack thereof – can Within the civil society realm, the special role of hepatitis patient governments and the international community make informed groups needs to be recognised. The World Hepatitis Alliance brings decisions about how to allocate limited resources. Monitoring and together 181 patient groups based in 69 countries. Time and again, reporting activities need to be greatly expanded and strengthened patient groups have demonstrated that they are uniquely qualified in many countries. Furthermore, monitoring and reporting need to propose and help implement solutions to problems facing viral to be systematised globally, with all countries collecting data hepatitis patients and those who are at high risk of infection. in accordance with the same indicators of the hepatitis disease burden as well as indicators of progress toward prevention Patient groups often have detailed knowledge of patients’ needs, and treatment goals. along with experience providing peer education and other essential services. They are eager to share their expertise by partnering with Another key to improving the response to viral hepatitis is governments and other stakeholders at the community, provincial to integrate the expertise of civil society organisations into and national levels. Patient groups furthermore can serve as a government initiatives. Governments should seek to foster strong conduit for bringing the insights and priorities of the most affected government and civil society coalitions that include not only populations – including marginalised populations – into the patient groups and activists, but also other civil society actors dialogue about how governments and international actors should such as foundations, medical societies, academic institutions, be addressing hepatitis. the private sector, and nongovernmental organisations (NGOs) working in the field of hepatitis. It is important to reach out From a pragmatic standpoint, it is smart for governments and to civil society actors with synergistic interests. Depending other key stakeholders to welcome the involvement and advocacy on the setting, this might include, for example, antenatal care efforts of hepatitis patient groups and their allies. From a human clinics, advocacy groups working to protect the interests of people rights standpoint, giving the members of these groups a voice who inject drugs, or HIV service providers with large caseloads in the policy discourse recognises their right to participate of patients who are coinfected with HIV and hepatitis. in decision-making about the health issues that affect them, which is a component of the right to health (Box 4).

1.4. Why is civil society involvement so important? 1.5. What are the next steps in charting the course for a unified global response? In recent decades, civil society actors have made invaluable contributions to the global response to public health issues such The World Hepatitis Alliance seeks to ensure that a unified global as reproductive health, HIV and cancer. In some ways, they have response to viral hepatitis is manifested in the comprehensive even helped to shape fundamental public health paradigms. national strategies that all countries are being encouraged to develop Chapter 1: Introduction Involvement of such a nature is our only hope for overcoming in a timely manner. A solid strategic foundation exists upon which the immense barriers to viral hepatitis prevention and control. all countries can build. The components of this foundation are put

14 Global Community Hepatitis Policy Report

forth in World Health Assembly resolutions WHA 63.18 and WHA Indeed, the section of resolution WHA 67.6 that is directed at 67.6 and in the WHO viral hepatitis strategic framework.31, 32, 33 governments itemises 16 key actions that could potentially have an enormous impact on hepatitis prevention and treatment (Box 5). As the resolutions and strategic framework reflect, we already The challenge is to apply this knowledge – which in many parts know what to do in many regards in order to prevent new of the world will involve overcoming formidable barriers relating infections and to reduce suffering and death from viral hepatitis. to complacency, ignorance, stigma and resource limitations.

Box 4. United Nations Committee on Economic, Social and Cultural Rights, General Comment 14, the Right to the Highest Attainable Standard of Health ...The Committee interprets the right to health, as defined in housing, healthy occupational and environmental conditions, article 12.1, as an inclusive right extending not only to timely and and access to health-related education and information, including appropriate health care but also to the underlying determinants on sexual and reproductive health. A further important aspect is of health, such as access to safe and potable water and adequate the participation of the population in all health-related decision- sanitation, an adequate supply of safe food, nutrition and making at the community, national and international levels.30

Box 5. World Health Assembly resolution WHA 67.6 The following text is excerpted from World Health Assembly 10. ... include hepatitis B vaccine for infants, where appropriate, resolution WHA 67.6, the full text of which appears in Annex D. in national immunisation programmes, working towards This resolution, approved in May 2014, calls on World Health full coverage; 35 Organization Member States to: 11. ... make special provision in policies for equitable access to prevention, diagnosis and treatment for populations 1. ... develop and implement coordinated multisectoral national affected by viral hepatitis, particularly indigenous people, strategies for preventing, diagnosing, and treating viral migrants and vulnerable groups, where applicable; hepatitis based on the local epidemiological context; 12. ... consider, as necessary, national legislative mechanisms for 2. ... enhance actions related to health promotion and prevention the use of the flexibilities contained in the Agreement of viral hepatitis, while stimulating and strengthening on Trade-Related Aspects of Intellectual Property Rights in immunisation strategies, including for hepatitis A, based order to promote access to specific pharmaceutical products; on the local epidemiological context; 13. ... consider, whenever necessary, the use of administrative 3. ... promote the involvement of civil society in all aspects and legal means in order to promote access to of preventing, diagnosing and treating viral hepatitis; preventive, diagnostic and treatment technologies 4. ... put in place an adequate surveillance system for against viral hepatitis; viral hepatitis in order to support decision-making 14. ... implement comprehensive hepatitis prevention, diagnosis on evidence-based policy; and treatment programmes for people who inject drugs, 5. ... strengthen the system for collection of blood from low-risk, including the nine core interventions,36 as appropriate, voluntary, non-remunerated donors, for quality-assured in line with the WHO, UNODC, UNAIDS technical guide screening of all donated blood to avoid transmission of HIV, for countries to set targets for universal access to HIV hepatitis B, hepatitis C and syphilis, and for good transfusion prevention, treatment and care for injecting drug users,37 practices to ensure patient safety; and in line with the global health sector strategy on HIV/ 6. ... strengthen the system for quality-assured screening AIDS, 2011–2015, and the United Nations General Assembly of all donors of tissues and organs to avoid transmission resolution 65/277, taking into account the domestic context, of HIV, hepatitis B, hepatitis C and syphilis; legislation and jurisdictional responsibilities; 7. ... reduce the prevalence of chronic hepatitis B infection as 15. ... aim to transition by 2017 to the exclusive use, where proposed by WHO regional committees, in particular by appropriate, of WHO prequalified or equivalent safety- enhancing efforts to prevent perinatal transmission through engineered injection devices including reuse-prevention the delivery of the birth dose of hepatitis B vaccine; syringes and sharp injury prevention devices for therapeutic 1: Chapter injections and develop related national policies; 8. ... strengthen measures for the prevention of hepatitis A and E, in particular the promotion of food and drinking 16. ... review, as appropriate, policies, procedures and practices

water safety and hygiene; associated with stigmatization and discrimination, including Introduction the denial of employment, training and education, as well as 9. ... strengthen infection control in health care settings through travel restrictions, against people living with and affected all necessary measures to prevent the reuse of equipment by viral hepatitis, or impairing their full enjoyment of the designed only for single use, and cleaning and either highest attainable standard of health. high-level disinfection or sterilization, as appropriate, of multi-use equipment;

15 Introduction continued

In light of these barriers, the World Hepatitis Alliance believes that building a unified global response to hepatitis is fundamentally Box 6. Recent and forthcoming guidance from about building relationships between stakeholders at all levels the World Health Organization – globally, nationally and locally. Some World Hepatitis Alliance member organisations have set notable precedents in this regard >> Prevention and Control of Viral Hepatitis Infection: by establishing a dialogue with governmental decision-makers Framework for Global Action (2012) in their countries and communities. Some of these organisations >> Guidance on prevention of viral hepatitis B and C are even participating in formal processes to develop hepatitis among people who inject drugs (2012) policies, guidelines and programmes. These efforts need to continue, and in countries where civil society actors are not >> WHO Position Paper on Hepatitis A Vaccines (2012) providing input, political and public health leaders need to do >> Guidelines for the Screening, Care and Treatment more to foster civil society engagement. of Persons with Hepatitis C Infection (2014) It is hoped that WHO, through its global headquarters and its >> Guidelines for the Screening, Care and Treatment of regional and country offices, will serve as an important facilitator Persons with Hepatitis B Infection (forthcoming 2014) of relationships between government and civil society >> Screening Guidelines for Hepatitis B and Hepatitis C representatives. WHO can also contribute to a unified global (forthcoming) response to viral hepatitis by issuing much-needed policy and technical guidance (Box 6). Just as importantly, WHO should seek greater civil society involvement in the deliberations that shape its viral hepatitis agenda.

Activities such as the March 2014 “global partners meeting” convened by the WHO Global Hepatitis Programme show great promise. More than 100 civil society representatives from around While these observations suggest a possible limitation of the the world participated in this two-day event in Geneva. Meeting report findings, they are put forth here in order to call attention attendees identified new opportunities for collaboration between to a larger concern. Do patient groups and other civil society WHO and civil society partners, and the Call to Action to Scale Up organisations in countries heavily affected by viral hepatitis have Global Hepatitis Response resulting from the meeting articulates the means to participate in global civil society? For that matter, a number of civil society priorities in relation to prevention, do they have the means to engage with their own governments? treatment, advocacy and evidence-informed decision-making.34 What resources might they need? And what of countries that appear to have only sporadic or no civil society activity relating Finally, an important consideration for all stakeholders responding to viral hepatitis? How can the voices of the people most affected to viral hepatitis is the composition of “civil society.” It is not enough by viral hepatitis be brought into the discourse in these countries? to welcome and encourage the most visible civil society actors in the hepatitis policy discourse. Who is not being represented? And why? The World Hepatitis Alliance encourages all readers to be attentive to these questions as they consider the report’s findings and as they The World Hepatitis Alliance is especially mindful of these continue to work toward key viral hepatitis goals. It is anticipated questions in light of findings presented in this very report. that some readers will disagree with some of the information The survey that provides the basis for the report was e-mailed provided, just as civil society organisations have indicated in to approximately 800 civil society organisations, with at least survey responses that they disagree with some of the information one organisation approached in virtually every country of the provided by governments for the 2013 WHO report. Disagreements world. (It was also distributed in other ways – see Annex A for are potentially important opportunities for relationship-building. information about the methodology.) Yet in spite of extensive Ideally they will provide an impetus for key actors in the response to outreach to encourage the submission of surveys, the report hepatitis to critically examine the available evidence, reflect on their only contains responses from 95 organisations representing assumptions, consider other points of view, and affirm shared goals. fewer than 60 countries. Forty-one percent of the surveys are from organisations based in high-income countries, and 42% By challenging each other within the context of a respectful dialogue, are from organisations based in the European region. government and civil society stakeholders have the potential to forge a new type of partnership globally. Establishing a partnership that One can only speculate about reasons for the lack of a response encourages the full participation of diverse actors is of paramount to the survey in many countries, but it is not difficult to see how importance because the response to viral hepatitis must take into resource limitations might have played a role. Most notably, account many different types of public health and development the World Hepatitis Alliance did not have sufficient funding to issues. Safe water and sanitation, prenatal care, infant immunisation, conduct the survey in any language other than English. It would be adherence to universal precautions in health care facilities, the unrealistic to expect many civil society organisations in countries societal response to illegal drug use, health care standards for where English is not widely spoken to have the means to report on incarcerated populations, stigma and discrimination, changing the governmental response to hepatitis via an English-language immigration and travel patterns, the pricing of pharmaceutical survey. Even in low- and middle-income countries where products... these are only some of the issues that come into play. language was not a barrier to responding to the survey, a lack All voices need to be heard if the global community is to make real of staff or volunteer capacity may have discouraged engagement progress on viral hepatitis, one of the most complex health threats Chapter 1: Introduction among some organisations. of the twenty-first century.

16 Global Community Hepatitis Policy Report

Chapter 1 References

1. Chung RT, Baumert TF. Curing Chronic Hepatitis C – The Arc of a Medical Triumph. 21. Pascarella S, Negro F. Hepatitis D virus: an update. Liver International, 2011; 31:7–21. New England Journal of Medicine, 2014; 370:1576–1578. 22. Fattovich G et al. Influence of hepatitis delta virus infection on morbidity and 2. World Health Organization. Sixty-third World Health Assembly. Viral Hepatitis: mortality in compensated cirrhosis type B. The European Concerted Action WHA 63.18. Geneva, Switzerland, 21 May 2010. Available at: http://apps.who.int/ on Viral Hepatitis (EuroHep). Gut, 2000; 46:420–426. gb/ebwha/pdf_files/WHA63-REC1/WHA63_REC1-P2-en.pdf. 23. Cross TJ et al. The increasing prevalence of hepatitis delta virus (HDV) infection 3. World Health Organization. Sixty-seventh World Health Assembly. Agenda Item in South London. Journal of Medical Virology, 2008; 80:277–282. 12.3: WHA 67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. Available at: 24. Tamura I et al. Risk of liver cirrhosis and hepatocellular carcinoma in subjects http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf. with hepatitis B and delta virus infection: a study from Kure, Japan. 4. World Health Organization. Hepatitis A. Fact Sheet N. 328. Geneva, Switzerland, Journal of Gastroenterology and Hepatology, 1993; 8:433–436 . 2013. Available at: http://www.who.int/mediacentre/factsheets/fs328/en/. 25. World Health Organization. Guidelines for the screening, care and treatment 5. World Health Organization. Hepatitis E. Fact Sheet N. 280. Geneva, Switzerland, of persons with hepatitis C infection. Geneva, Switzerland, 2014. Available at: 2013. Available at: http://www.who.int/mediacentre/factsheets/fs280/en/. http://apps.who.int/iris/bitstream/10665/111747/1/9789241548755_eng. pdf?ua=1&ua=1. 6. World Health Organization. Hepatitis B. Fact Sheet N. 204. Geneva, Switzerland, 2013. Available at: http://www.who.int/mediacentre/factsheets/fs204/en/. 26. World Health Organization. Hepatitis C. Fact Sheet N. 164. Geneva, Switzerland, 2014. Available at: http://www.who.int/mediacentre/factsheets/fs164/en/. 7. World Health Organization, Department of Communicable Disease Surveillance and Response. Hepatitis Delta. Geneva, Switzerland, 2001. Available at: 27. Lozano R et al. Global and regional mortality from 235 causes of death for 20 age http://www.who.int/csr/disease/hepatitis/whocdscsrncs20011/en/. groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet, 2012, 380(9859):2095–2128. 8. World Health Organization. Hepatitis C. Fact Sheet N. 164. Geneva, Switzerland, 2014. Available at: http://www.who.int/mediacentre/factsheets/fs164/en/. 28. Perz JF et al. The contributions of hepatitis B virus and hepatitis C virus infections to cirrhosis and primary liver cancer worldwide. Journal of Hepatology, 2006; 9. World Health Organization. Prevention and control of viral hepatitis infection: 45:529–38. framework for global action. Geneva, Switzerland, 2012. Available at: http://www. who.int/csr/disease/hepatitis/GHP_Framework_En.pdf?ua=1. 29. Personal communication, Hande Harmanci to Charles Gore, 24 March 2014.

10. Lozano R et al. Global and regional mortality from 235 causes of death for 20 age 30. United Nations Committee on Economic, Social and Cultural Rights. groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease General Comment 14, The Right to the Highest Attainable Standard of Health. Study 2010. Lancet, 2012; 380(9859):2095–2128. E/C.12/2000/4. 2000. Available at: http://tbinternet.ohchr.org/_layouts/ treatybodyexternal/Download.aspx?symbolno=E%2fC.12%2f2000%2f4&Lang=en. 11. Rein DB et al. The global burden of hepatitis E virus genotypes 1 and 2 in 2005. Hepatology, 2012; 55:988–997. 31. World Health Organization. Sixty-third World Health Assembly. Viral Hepatitis: WHA 63.18. Geneva, Switzerland, 21 May 2010. Available at: 12. Lozano R et al. Global and regional mortality from 235 causes of death for 20 age http://apps.who.int/gb/ebwha/pdf_files/WHA63-REC1/WHA63_REC1-P2-en.pdf. groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet, 2012; 380(9859):2095–2128. 32. World Health Organization. Sixty-seventh World Health Assembly. Agenda Item 12.3: WHA 67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. Available at: 13. World Health Organization. Global immunization data, February 2014. Geneva, http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf. Switzerland, 2014. Available at: http://www.who.int/immunization/monitoring_ surveillance/Global_Immunization_Data.pdf?ua=1. 33. World Health Organization. Prevention and control of viral hepatitis infection: framework for global action. Geneva, Switzerland, 2012. Available at: 14. Chu CM et al. Natural history of chronic hepatitis B virus infection in adults with http://www.who.int/csr/disease/hepatitis/GHP_Framework_En.pdf?ua=1. emphasis on the occurrence of cirrhosis and hepatocellular carcinoma. Journal of Gastroenterology and Hepatology, 2000; 15:25–30. 34. World Health Organization. Call to Action to Scale Up Global Hepatitis Response. Global Partners’ Meeting on Hepatitis, March 2014, Geneva, Switzerland. 15. Kew MC. Epidemiology of chronic hepatitis B virus infection, hepatocellular carcinoma, and hepatitis B virus-induced hepatocellular carcinoma. Pathologie 35. World Health Organization. Sixty-seventh World Health Assembly. Agenda Item Biologie, 2010; 58:273–277. 12.3: WHA 67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf. 16. Stewart B, Wild C. World Cancer Report 2014. IARC, France 2014. 36. Needle and syringe programmes; opioid substitution therapy and other drug 17. World Health Organization. Prevention and control of viral hepatitis infection: dependence treatment; HIV testing and counselling; antiretroviral therapy;

framework for global action. Geneva, Switzerland, 2012. Available at: 1: Chapter prevention and treatment of sexually transmitted infections; condom programmes http://www.who.int/csr/disease/hepatitis/GHP_Framework_En.pdf?ua=1. for people who inject drugs and their sexual partners; targeted information, 18. Te HS, Jensen DM. Epidemiology of hepatitis B and C viruses: a global overview. education and communication for people who inject drugs and their sexual Clinics in Liver Disease, 2010; 14:1–21. partners; vaccination, diagnosis and treatment of viral hepatitis; prevention, Introduction diagnosis and treatment of tuberculosis. 19. Lozano R et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease 37. WHO, UNODC, UNAIDS technical guide for countries to set targets for universal Study 2010. Lancet, 2012; 380(9859):2095–2128. access to HIV prevention, treatment and care for injecting drug users. Geneva: World Health Organization; 2009. 20. Perz JF et al. The contributions of hepatitis B virus and hepatitis C virus infections to cirrhosis and primary liver cancer worldwide. Journal of Hepatology 2006; 45:529–38.

17 Global Hepatitis Priorities: Five Key Issues Raised by Civil Society Survey Findings 2

In this chapter, the World Hepatitis Alliance offers insights 2.1. Disagreement between governments about how some of the most notable findings from the 2014 and civil society organisations survey of civil society stakeholders should inform the global response to viral hepatitis. There appears to be considerable disagreement between governments and civil society organisations about some aspects For the survey, 76 civil society organisations reviewed a total of how national responses to viral hepatitis are being managed. of 25 items of information reported by their governments for the 2013 World Health Organization (WHO) Global Policy Report What does the evidence indicate? on the Prevention and Control of Viral Hepatitis in WHO Member Approximately half of 76 civil society respondents thought that States. Regarding each item, civil society respondents indicated their governments had reported inaccurate information for at least whether they thought the government reporting was accurate or five of 25 survey items, as described in Chapter 3. Some of the inaccurate. (They could also choose to take no position.) These civil most common areas of disagreement included the existence of society organisations represented 46 countries. A quantitative government hepatitis programmes targeting specific populations; analysis of responses to the 25 items provided the basis for part hepatitis surveillance; and disease registration and reporting. of the findings presented in this report. Other findings are drawn For example, 33% of survey respondents indicated that they from qualitative data, which were collected from the 76 civil society thought their governments had provided inaccurate information organisations and from 19 additional civil society organisations in response to the following 2013 question to governments: in countries where government information was not available. Does your government have a viral hepatitis prevention and (Details can be found in Chapters 3–9 and in Annex A.) control programme that includes activities targeting specific populations? If yes, please indicate which populations.

Why is the World Hepatitis Alliance concerned? Comments provided by civil society survey respondents suggest more than one possible explanation for why some government information was characterised as inaccurate – but most explanations present cause for concern. At best, it appears that some instances of disagreement might be attributable to civil society respondents recognising improvements that occurred after governments reported to WHO, because the government data were collected between July 2012 and February 2013 while the civil society data were collected approximately one year later. In other cases, one can speculate that inadequate communication between government and civil society The World Hepatitis Alliance stakeholders might have left civil society survey respondents recommends that governments put in misinformed about government policies and programmes. It is also conceivable that in relation to some reporting topics, place robust monitoring mechanisms government and civil society representatives might characterise so that they are fully informed of viral the viral hepatitis situation in their country differently because they interpret key concepts differently. Finally, in some cases hepatitis activities and key performance the explanation could simply be that governments did indeed indicators nationally. provide inaccurate information to WHO in 2013.

Regardless of how specific instances of disagreement came about, the quantitative and qualitative findings taken together suggest the overall conclusion that civil society does not appear to be properly engaged with national governments in a number of countries. This effort to assess the level of disagreement only takes into account data from the 46 countries where governments reported to WHO in 2013 and civil society organisations reported to the World Hepatitis Alliance in 2014. In many other countries, it was not possible to analyse civil society perspectives on what governments claim to be doing in response to hepatitis. Thus, the disconnect between government and civil society might actually be much more extensive worldwide.

Disagreement between governments and civil society organisations regarding how viral hepatitis is being handled at the national level seems likely to be a symptom of insufficient civil society engagement, which is the focus of the next section. Global Hepatitis Priorities Chapter Hepatitis 2: Global

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What is the way forward? The World Hepatitis Alliance therefore is alarmed to see that The World Hepatitis Alliance recommends that governments put so few governments appear to collaborate with civil society. in place robust monitoring mechanisms so that they are fully Furthermore, even in countries where it is agreed that such informed of viral hepatitis activities and key performance collaboration takes place, little is known about whether civil indicators nationally. Governments should ensure that the society organisations are satisfied with the outcomes. information they collect is widely disseminated, especially to civil society. There is also an obvious need for governments What is the way forward? to engage more directly with civil society. The World Hepatitis Alliance recommends that governments engage and work with civil society. Given the importance in particular of patient groups and the comparative under- resourcing of those groups that this report has highlighted in part 2.2. Civil society engagement through the low response rates, the Alliance recommends that governments actively seek them out and promote them. Much needs to change in order for civil society stakeholders Where no patient groups exist, governments should work with to become full partners in the response to viral hepatitis in the Alliance to foster their creation. Good examples of successful many countries. engagement between governments and patient groups can be found in France, where such engagement is a legal requirement, What does the evidence indicate? and in Australia, where hepatitis patient groups are supported In 2013, the governments of 60 countries reported to WHO by the government at both the national and state level. that they collaborated with in-country civil society groups to develop and implement viral hepatitis prevention and control programmes.1 In ten of those countries, one or more civil society respondents indicated that to their knowledge, the government 2.3. The existence of written national strategies information was not accurate, as reported in Annex C. In other for viral hepatitis words, the civil society survey findings raise the question of whether the number of governments collaborating with civil Information from civil society organisations reinforces the society might be considerably lower. World Hepatitis Alliance’s concern that many countries lack the necessary strategic foundation for a comprehensive response Why is the World Hepatitis Alliance concerned? to viral hepatitis. Tremendous improvements are needed at the national and community level in relation to many aspects of viral What does the evidence indicate? hepatitis prevention and control. It is difficult to imagine those In 2013, 37% of 126 reporting governments indicated to WHO improvements occurring without strong partnerships between that their countries had written national strategies or plans that government and civil society in all countries affected by viral focused exclusively or primarily on the prevention and control of hepatitis. As discussed in Chapter 1, civil society has the potential viral hepatitis.2 The 2014 civil society survey asked respondents to make unique and valuable contributions. Furthermore, it is the whether or not they thought this information was accurate. Sixty right of civil society participants to have a voice in the decision- civil society respondents (79%) indicated that to their knowledge, making processes that determine government hepatitis strategies, the 2013 government information was accurate, as reported in policies and programmes. Chapter 3 and Annex C. Therefore, it is possible that even less than 37% of governments have written national strategies or plans for viral hepatitis. When the WHO Global Hepatitis Programme asked about this issue in a questionnaire, responses indicated that there were comprehensive strategies in only 17 countries.3

Why is the World Hepatitis Alliance concerned? In light of the burden of disease from viral hepatitis, it is flatly unacceptable for governments to not have strategies

or plans in place to guide national responses. This has been 2: Chapter recognised by the World Health Assembly: the very first clause of the viral hepatitis resolution approved by this body in May 2014 urges WHO Member States “to develop and implement

coordinated multisectoral national strategies for preventing, Global Hepatitis Priorities diagnosing, and treating viral hepatitis based on the local epidemiological context.”4

Calls for national viral hepatitis strategies may be met with resistance in some quarters because of concerns about the drawbacks of vertical disease programming. Such concerns are valid, and it is important to clarify that the creation and implementation of a national viral hepatitis strategy are not envisioned as activities that should take place apart from the rest of the national public health agenda. Indeed, integrating the hepatitis response with other components of the public

19 Global Hepatitis Priorities continued

health agenda is highly advisable. At the same time, national strategies specifically addressing viral hepatitis are necessary in order to remedy the greatly inadequate response to this group of diseases to date. The existence of national strategies can promote accountability, especially when strong monitoring mechanisms are employed.

The World Hepatitis Alliance urges the global community to recognise that a functional national viral hepatitis strategy is something more than words in a document. Civil society survey responses from Austria and Mongolia are instructive in this regard. In 2013, the governments of both countries reported to WHO that written national viral hepatitis strategies or plans existed in their countries. However, in a civil society survey submission, a representative of the Austrian Society of Gastroenterology and Hepatology commented about the government claim:

This is probably accurate, but it is not widely known. Even I myself as a citizen of Austria working in the field for years have never seen this strategy/plan nor has it ever been communicated openly. 2.4. Surveillance A civil society survey from Mongolia’s Onom Foundation commented regarding the same point: Surveillance is an absolutely essential tool for understanding the burden of disease and planning an effective strategic response It all exists on paper but not a lot of actions are happening. to all forms of viral hepatitis. Hepatitis B vaccination is the one part being done quite well. Other points do not have enough funding and there are not What does the evidence indicate? real orchestrated efforts that we can see. In 2013, the governments of 104 countries reported to WHO that they had routine surveillance for viral hepatitis.5 In 19 of those As these statements reflect, simply drafting a national strategy countries, one or more civil society respondents indicated that is far from sufficient. Strategies must incorporate costed to their knowledge, the government information was not accurate, implementation plans. Also, progress must be tracked throughout as reported in Chapter 3 and Annex C. implementation using clearly defined metrics. Progress or the lack thereof must be shared with all concerned stakeholders. There are also instances of civil society survey respondents agreeing with government reports that routine hepatitis What is the way forward? surveillance exists, while adding comments regarding surveillance The World Hepatitis Alliance recommends that governments limitations. For example, the German Liver Foundation noted, make use of technical support from WHO and other bodies, “No differentiation between acute and chronic hepatitis C.” including the Alliance, to begin at once the development of Associazione EpaC in Italy wrote, “There is a registry for acute comprehensive multisectoral national viral hepatitis strategies. hepatitis, but not all local health district departments adhere Funding for a strategy needs to be secured early, and proper to this system.” The Hiroshima University Institute of Biomedical accountability and monitoring established. Any strategy needs to and Health Sciences in Japan reported, “Although we have make full use of existing resources such as those provided by HIV a national surveillance system for viral hepatitis, the rate or cancer programmes and also needs to be integrated into other of reporting from medical doctors for acute hepatitis cases public health strategies. At the same time, it is imperative that is insufficient. Government should have a policy for raising even when viral hepatitis strategies are implemented in a fully awareness among all medical doctors regarding the importance integrated manner, outcomes related solely to hepatitis should be of surveillance.” monitored in order to gauge progress on national and global viral hepatitis goals and targets. Why is the World Hepatitis Alliance concerned? Without knowing the national disease burden or transmission patterns, it is impossible for governments to make informed decisions about how to allocate resources for hepatitis prevention and treatment. It is also impossible to tailor hepatitis control A functional national viral hepatitis strategies to the segments of the population that are most at risk. The ramifications of a country having poor viral hepatitis strategy is something more than words surveillance extend beyond that specific country. The net effect in a document. of widespread surveillance shortcomings is the undermining of strategic efforts at the regional and global level.

Global Hepatitis Priorities Chapter Hepatitis 2: Global The viral hepatitis surveillance issues documented in the 2014 civil society survey findings are not surprising.

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Regarding hepatitis C, a 2013 review article commented that “despite increasing morbidity and mortality ... surveillance is incomplete, out of date and in some countries non-existent.”6 World Health Assembly resolution WHA 67.6, approved in May 2014, notes that “most” of the 194 Member States of the World Health Organization “lack adequate surveillance systems for viral hepatitis to enable them to take evidence-based policy decisions.”7 In the resolution, one of the 16 measures that Member States are urged to take is putting in place adequate surveillance (Box 5, p13).

What is the way forward? The World Hepatitis Alliance recommends that all countries have functional hepatitis surveillance systems. Countries with systems already in place are advised to introduce enhanced surveillance of the hepatitis B and hepatitis C viruses, such as the European Centre for Disease Prevention and Control began implementing in 2010.8 Enhanced hepatitis B and hepatitis C surveillance should include the reporting of acute and chronic cases. Furthermore, standardized case definitions, including a definition for late presentation, are needed. The current dearth of surveillance and the heterogenieity in existing surveillance systems, coupled with varying national case definitions of hepatitis, severely hinders efforts to interpret data.

2.5. Viral hepatitis prevention

Qualitative data from a large number of civil society survey respondents call attention to the significance of viral hepatitis prevention activities worldwide and the need to intensify these efforts.

What does the evidence indicate? Multiple aspects of viral hepatitis prevention were highlighted in statements from civil society survey respondents. Some examples:

>> The hepatitis B vaccine is available in most hospitals, although the accessibility and availability of this vaccine in the rural areas is poor. Another challenge is the vaccination schedule (0, 1, 6), which makes follow-up difficult for clients. There is a >> Harm reduction programmes must not only be sustained, general lack of knowledge about mother-to-child transmission but urgently scaled up and expanded to provide adequate of hepatitis B and its prevention among care providers. coverage and a wide range of services including needle — Comfort Foundation, Ghana and syringe programmes. >> There is no government protocol, guideline or standard — Union C, Nepal operating procedure on prevention of hepatitis transmission >> The Department of Health has a free hepatitis B vaccine 2: Chapter for any target population. Even health workers with all the programme for infants [birth to age one]. But since the risks and job hazards are not protected by any government Philippines is an archipelago, bringing vaccine to far-flung policy on post-exposure prophylaxis. provinces poses a challenge. We can see this because of the — Chagro-Care Trust and Elohim Foundation, Nigeria

increase in the prevalence of hepatitis B. We believe strict Global Hepatitis Priorities >> There are many small blood banks selling blood which has implementation and monitoring would solve this problem. never been screened. Only reputable labs screen blood for — Yellow Warriors Society, Philippines both hepatitis B and hepatitis C. — The Health Foundation, Pakistan Why is the World Hepatitis Alliance concerned? >> The highest-incidence groups for hepatitis C in Germany are Given the global prevalence of viral hepatitis and the lack of drug users and men who have sex with men. But no prevention awareness about the nature of the threat, the World Hepatitis programmes are established for either... Also, there are no Alliance is extremely concerned about the limited scope of most specific hepatitis B programmes for migrants coming from types of hepatitis prevention efforts. Recent excitement about highly endemic countries. a new hepatitis C treatment with high cure rates should not draw — Deutsche Leberhilfe e.V., Germany attention away from the imperative to prevent this disease.

21 Global Hepatitis Priorities continued

Nor should “treatment as prevention” seduce the global 2.6. Recommendations community into diverting meagre viral hepatitis prevention resources to the provision of overly expensive hepatitis C drugs. The World Hepatitis Alliance urges all stakeholders in the response to viral hepatitis to take note of the findings from its At the same time, the Alliance cautions against basing policy 2014 survey of civil society stakeholders. The Alliance makes decisions and resource allocation decisions on an unhelpful the following recommendations based on its analysis of survey “prevention versus treatment” paradigm. Ultimately what findings and other evidence: matters more than providing access to any specific viral hepatitis prevention or treatment intervention is making systemic >> Establish robust monitoring mechanisms to track viral improvements that will give public health officials and civil society hepatitis activities and key performance indicators nationally. partners flexibility in how they address viral hepatitis on an Monitoring outputs should be widely disseminated, and ongoing basis. All stakeholders must have access to the necessary special efforts should be made to share information with data and resources to make informed decisions about how to civil society stakeholders. respond in a coordinated manner to changing disease patterns >> Introduce or improve national viral hepatitis and how to apply new knowledge strategically. surveillance systems. What is the way forward? >> Engage more directly with civil society, including hepatitis The World Hepatitis Alliance recommends that all governments patient groups. Help foster the creation of new hepatitis groups, issue evidence-based guidance on hepatitis prevention and that they including patient groups and other groups, where none exist. share this guidance with all stakeholders. In the absence of national >> Develop comprehensive multisectoral national viral hepatitis guidance, global guidance from the World Health Organization strategies, drawing on WHO, the World Hepatitis Alliance should be utilised. Depending on a country’s epidemiological context, and others for technical support. Sufficient funding must the following may be considered viral hepatitis prevention priorities: be allocated to implement the strategies. >> Including hepatitis B vaccine in national immunisation >> Integrate the implementation of national viral hepatitis programmes, including provision of a birth dose. strategies with national public health agendas, while at the same time monitoring specific hepatitis-related outcomes. >> Recommending hepatitis B vaccination to travelers to regions with high hepatitis B prevalence. >> Issue evidence-based guidance on hepatitis prevention and share this guidance with all stakeholders. >> Promoting and enabling safe injection practices in health care settings. >> Establish consensus about which aspects of viral hepatitis prevention should be prioritised based on the national >> Conducting campaigns to reduce the number epidemiological context. of unnecessary injections. >> Recognise and seek to overcome barriers that deter members >> Improving the safety of blood and blood products. of most-at-risk populations from accessing hepatitis >> Implementing harm reduction interventions for people prevention and treatment services and commodities. who inject drugs. >> Ensure access to hepatitis prevention and treatment Efforts also must recognise the barriers that deter members of for everyone in need without discrimination. most-at-risk populations from accessing prevention and treatment services and commodities, and must include provisions for overcoming the barriers. This could mean, for example, educating Global Hepatitis Priorities Chapter Hepatitis 2: Global people in rural communities about the importance of vaccination, or ensuring equitable access to treatment for people who inject drugs.

22 Global Community Hepatitis Policy Report

Chapter 2 References

1. World Health Organization. Global policy report on the prevention and control 6. Hagan LM, Schinazi RF. Best strategies for global HCV eradication. of viral hepatitis in WHO member states. Geneva, Switzerland, 2013. Liver International, 2013; 33:68–79. http://www.who.int/csr/disease/hepatitis/global_report/en/. 7. World Health Organization. Sixty-seventh World Health Assembly. 2. World Health Organization. Global policy report on the prevention and control Agenda Item 12.3: WHA 67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. of viral hepatitis in WHO member states. Geneva, Switzerland, 2013. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf. http://www.who.int/csr/disease/hepatitis/global_report/en/. 8. European Centre for Disease Prevention and Control. Surveillance. 3. Personal communication, Hande Harmanci to Charles Gore, 24 March 2014. Annual Epidemiological Report 2013. Reporting on 2011 surveillance data and 2012 epidemic intelligence data. Stockholm: ECDC; 2013. 4. World Health Organization. Sixty-seventh World Health Assembly. Agenda Item 12.3: WHA 67.6 Hepatitis. Geneva, Switzerland, 24 May 2014. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R6-en.pdf.

5. World Health Organization. Global policy report on the prevention and control of viral hepatitis in WHO member states. Geneva, Switzerland, 2013. http://www.who.int/csr/disease/hepatitis/global_report/en/. Chapter 2: Chapter Global Hepatitis Priorities

23 Global Findings 3

This chapter presents global findings from the World Hepatitis 3.1. Respondents Alliance’s 2014 civil society survey in two sections. Ninety-five organisations from 58 countries1 and one special The first section provides an overview of respondents. administrative region responded to the World Hepatitis Alliance’s The second section describes the extent to which respondents 2014 civil society survey. The governments of 46 countries agreed or disagreed with what their governments reported about provided information for the 2013 WHO global policy report, hepatitis policies and programmes for the 2013 World Health and thus the 76 respondents based in those countries were able Organization (WHO) Global Policy Report on the Prevention to comment on the accuracy of their governments’ responses. and Control of Viral Hepatitis in WHO Member States. The governments of 12 countries did not provide information It also notes the issues associated with the greatest amount for the 2013 report.2 The 18 respondents based in those countries of agreement and disagreement. instead commented on their governments’ responses to viral hepatitis by writing short statements about key issues. One Civil society survey respondents based in countries where additional respondent provided a short statement about how viral governments did not submit information for the 2013 WHO global hepatitis is being addressed by the Special Administrative Region policy report did not have any information to review and hence did of Hong Kong, which was not invited to submit information for not complete this component of the survey. They only completed the WHO global policy report because it is part of China. a survey component in which respondents were invited to write Information about respondents is presented in Table 3.1. brief statements discussing the policy response to viral hepatitis in their countries. Excerpts from these statements are presented in the first part of the Africa, Europe and Western Pacific chapters of this report to highlight key areas of concern. The full text of all respondents’ statements can be found in the individual respondent entries in the second part of all regional chapters.

Chapter Findings 3: Global 2 Eleven of the 12 countries did not submit information for the 2013 WHO global policy report. One other country, Taiwan (Chinese Taipei), was not invited to submit information because it is not a WHO Member State.

24 Global Community Hepatitis Policy Report

Table 3.1. Respondents to the World Hepatitis Alliance’s 2014 civil society survey (N=95)

Type of respondent (#)

Country NGO – hepatitis hepatitis – NGO group patient NGO – direct service provider NGO – other society Medical Private foundation Other response No Civil society survey (#) respondents African region Cameroon 1 1 Democratic Republic of the Congo 1 1 Gambia 1 1 Ghana 3 1 1 1 Mali 1 1 Mauritius 1 1 Nigeria 5 3 2 Togo 1 1 Uganda 4 2 2 Region of the Americas Argentina 2 1 1 Canada 3 1 1 1 Mexico 1 1 United States of America 4 1 3 Eastern Mediterranean region Egypt 1 1 Jordan 1 1 Lebanon 1 1 Pakistan 2 1 1 Yemen 1 1 European region Albania 1 1 Austria 1 1 Belarus 1 1 Belgium 2 2 Bulgaria 2 2 Denmark 3 1 1 1 Estonia 1 1 France 2 1 1

Georgia 1 1 3: Chapter Germany 2 1 1 Greece 2 1 1

Hungary 1 1 Global Findings Israel 1 1 Italy 1 1 Latvia 1 1 Netherlands 1 1 Norway 1 1

25 Global Findings continued

Type of respondent (#)

Country NGO – hepatitis hepatitis – NGO group patient NGO – direct service provider NGO – other society Medical Private foundation Other response No Civil society survey (#) respondents European region (continued) Poland 2 1 1 Portugal 1 1 Romania 1 1 Russian Federation 1 1 Serbia 1 1 Spain 1 1 Switzerland 1 1 The former Yugoslav Republic of Macedonia 2 1 1 Ukraine 3 2 1 United Kingdom of Great Britain and Northern Ireland 3 2 1 South-East Asia region Bangladesh 2 1 1 India 2 1 1 Indonesia 1 1 Myanmar 1 1 Nepal 1 1 Thailand 2 1 1 Western Pacific region Australia 1 1 Chinaa 4 3 1 Japan 3 1 2 Mongolia 1 1 New Zealand 1 1 Philippines 1 1 Taiwan (Chinese Taipei) 1 1

a One of the four civil society respondents from China was Asiahep Hong Kong Limited, which assessed the hepatitis response of the Special Administrative Region of Hong Kong rather than the hepatitis response of the Chinese government. Chapter Findings 3: Global

26 Global Community Hepatitis Policy Report

FigureFigure 3.1. 3.1 Types of organisations submitting survey responses (N=95) Almost 30% of respondents to the civil society survey identified themselves as hepatitis patient groups, and another 16% identified themselves as nongovernmental direct service providers (Figure 3.1). 1% Eleven percent identified themselves as medical societies. 14% No response Other Sixty-three percent of respondents were either voting or non- 28% voting members of the World Hepatitis Alliance at the time they NGO: hepaiis paient group submitted their surveys (data not shown). 8% Response levels by region are presented in Table 3.2, along Private Types of with response levels by income group. foundaion organisaions submiing survey 11% responses (N=95) 3.2. Highlights relating to civil society agreement or Medical society disagreement with what governments reported 16% The civil society survey contained 25 items based on the NGO: direct information that governments provided for the 2013 WHO global service provider policy report. For each item, civil society stakeholders were asked to consider the government response to one or more questions 22% about national hepatitis policies and programmes, and to select NGO: other one of the following three statements: To our knowledge, this information is accurate; To our knowledge, this information is not accurate; or We take no position regarding this statement.

Detailed findings for all civil society survey items are presented in Annex C. In sum, approximately half of all civil society respondents thought that the information from their governments was accurate for 18 or more of the 25 items. Regarding the proportions of respondents who marked items as “not accurate,” approximately half thought that the information from their governments was not accurate for five or more items.

Table 3.2. Responses received by region and income groupa (N=95)

Upper-middle Lower-middle High-income Low-income Other income income

Africa (N=18) 0 (0%) 1 (1.1%) 9 (9.5%) 8 (8.4%) 0 (0%) Americas (N=10) 7 (7.4%) 3 (3.2%) 0 (0%) 0 (0%) 0 (0%) Eastern Mediterranean (N=6) 0 (0%) 2 (2.1%) 4 (4.2%) 0 (0%) 0 (0%) Europe (N=40) 27 (28.4%) 9 (9.5%) 1 (1.1%) 3 (3.2%) 0 (0%) South-East Asia (N=9) 0 (0%) 2 (2.1%) 3 (3.2%) 4 (4.2%) 0 (0%) Western Pacific (N=12) 5 (5.3%) 4 (4.2%) 2 (2.1%) 0 (0%) 1b (1.1%) All regions (N=95) 39 (41.1%) 21 (22.1%) 19 (20.0%) 15 (15.8%) 1 (1.1%) Chapter 3: Chapter a Source for income group classifications: World Bank 2013 data (http://data.worldbank.org/about/country-classifications/country-and-lending-groups). b One survey response was received from Taiwan (Chinese Taipei), which is not included in World Bank income group classifications. Global Findings

27 Global Findings continued

The following survey items were most commonly identified as points The following survey items were most commonly identified on which civil society respondents agreed with their governments’ as points on which civil society respondents disagreed with responses: item 1.1, regarding the existence of a national strategy their governments’ responses: item 1.3, regarding whether or plan for the prevention and control of viral hepatitis; item 4.1, the government has a viral hepatitis prevention and control regarding the existence of a national hepatitis A vaccination policy; programme that includes activities targeting specific populations; item 4.6, regarding injection safety in health care settings; and item 3.1, regarding viral hepatitis surveillance; and item 3.3, item 4.8, regarding infection control for blood products. Further regarding disease registration and reporting. Further details details are presented in Table 3.3. are presented in Table 3.4.

Table 3.3. Survey items eliciting the highest levels of agreement from civil society respondents (N=76)

In your country, is there a written national strategy or plan that focuses exclusively or primarily on the prevention and control of viral hepatitis? 1.1 60 (78.9%) If yes, is it exclusive for viral hepatitis or does it also address other diseases? Please indicate components of the strategy or plan. Is there a national hepatitis A vaccination policy? If yes, what groups does 4.1 59 (77.6%) the policy address? Is there a national policy on injection safety in health care settings? If yes, what type of syringes does the policy recommend for therapeutic injections? 4.6 59 (77.6%) Are single-use or auto-disable syringes, needles and cannulas always available in all health care facilities? Is there a national infection control policy for blood banks? Are all donated blood units (including family donations) and blood products 4.8 nationwide screened for hepatitis B? 64 (84.2%) Are all donated blood units (including family donations) and blood products nationwide screened for hepatitis C?

Table 3.4. Survey items eliciting the highest levels of disagreement from civil society respondents (N=76)

Does your government have a viral hepatitis prevention and control 1.3 programme that includes activities targeting specific populations? 25 (32.9%) If yes, please indicate which populations. Is there routine surveillance for viral hepatitis? If yes, is there a national surveillance system for the following types of acute hepatitis? A, B, C. 3.1 22 (28.9%) Is there a national surveillance system for the following types of chronic hepatitis? B, C. Are liver cancer cases registered nationally? 3.3 Are cases of HIV/hepatitis co-infection registered nationally? 25 (32.9%) How often are hepatitis disease reports published? Chapter Findings 3: Global

28 African Region 4

Global Community Hepatitis Policy Report

4 African Region

1 Cameroon • Positive-Generation

2 Democratic Republic of the Congo 5 3 • Encadrement des Personnes Infectées par l’Hépatite 7 Gambia 4 1 3 9 • Hope Life International Charitable 8 2 4 Ghana • Comfort Foundation Ghana 6 • Long Life Africa • Theobald Hepatitis B Foundation

5 Mali • SOS Hépatites Mali

6 Mauritius • Hep Support

7 Nigeria • Beacon Youth Movement • Chagro-Care Trust • Elohim Foundation This chapter presents African region findings from the World • GAMMUN Centre for Care and Development Nigeria Hepatitis Alliance’s 2014 civil society survey in three sections. • LiveWell Initiative The first section provides an overview of respondents. Togo The second section describes the extent to which respondents 8 • Association Sauvons l’Afrique Des Hépatites agreed or disagreed with what their governments reported about hepatitis policies and programmes for the 2013 World Health 9 Uganda Organization (WHO) Global Policy Report on the Prevention • Action For Rural Transformation and Control of Viral Hepatitis in WHO Member States. It also notes • Cancer and AIDS Relief Organization the issues associated with the greatest amount of agreement and disagreement. The third section highlights some of the qualitative • Giving Hope Foundation findings from respondents based in countries where governments • The National Organization for People Living did not submit information for the 2013 WHO global policy report. with Hepatitis B

Table 4.1. African region respondents to the World Hepatitis Alliance’s 2014 civil society survey (N=18)

Type of respondent (#)

Country Civil society survey respondents (#) NGO – hepatitis hepatitis – NGO patient group NGO – direct service provider NGO – other society Medical Private foundation Other No response

Cameroon 1 1

Democratic Republic of the Congo 1 1 4: Chapter Gambia 1 1 Ghana 3 1 1 1 African Region Mali 1 1 Mauritius 1 1 Nigeria 5 3 2 Togo 1 1 Uganda 4 2 2

31 African Region continued

4.1. Respondents Almost 40% of respondents identified themselves as hepatitis Eighteen organisations from nine countries in the African region patient groups, and another 28% identified themselves as responded to the World Hepatitis Alliance’s 2014 civil society nongovernmental direct service providers (Figure 4.1). survey. The governments of three of those countries provided information for the 2013 WHO global policy report, and thus Eighty-nine percent of respondents were either voting or non- the seven respondents based in those countries were able to voting members of the World Hepatitis Alliance at the time comment on the accuracy of their governments’ responses. they submitted their surveys (data not shown). The governments of the other six countries did not provide information for the 2013 report; the eleven respondents based Half of respondents were based in lower-middle-income in those countries instead commented on their governments’ countries, and almost half were based in low-income countries. responses to viral hepatitis by writing short statements about One respondent was based in an upper-middle-income country key issues. Additional information about respondents is presented (Figure 4.2). in Table 4.1. on previous page.

Figure 4.1. Types of organisations submitting survey responses, African Figure 4.2. Responses received by income group,a African region (N=18) Figure 4.2 region (N=18) Figure 4.1 5% 6% 11% No response Upper-middle-income Other 39% NGO: hepaiis paient group Types of Responses 44% organisaions received by Low-income 17% a NGO: other submiing survey income group, responses, African African region region (N=18) 50% (N=18) Lower-middle- income

28% a NGO: direct service provider Source for income group classifications: World Bank 2013 data (http://data.worldbank.org/about/country-and-lending-groups).

Table 4.2. Survey items eliciting the highest levels of agreement from civil society respondents, African region (N=7)

# (%) of respondents who indicated agreement with their governments’ Question(s) addressed by governments Survey item response(s) by selecting “to our for 2013 WHO global policy report knowledge, this information is accurate” Is there a designated governmental unit/department responsible only for coordinating and/or carrying out viral hepatitis-related activities? 1.2 If yes, what is its name? 7 (100%) How many people work full-time (or how many full-time equivalent staff) on hepatitis-related activities in all government agencies/bodies? Is there a national hepatitis A vaccination policy? 4.1 7 (100%) If yes, what groups does the policy address? Chapter Region 4: African

32 Global Community Hepatitis Policy Report

4.2. Highlights relating to civil society agreement or The following survey items were most commonly identified as disagreement with what governments reported points on which civil society respondents in the African region agreed with their governments’ responses: item 1.2, regarding The civil society survey contained 25 items based on the the existence of a designated governmental unit/department information that governments provided for the 2013 WHO global responsible for viral hepatitis-related activities and the number policy report. For each item, civil society stakeholders were asked of government staff working on hepatitis-related activities, to consider the government response to one or more questions and item 4.1, regarding the existence of a national hepatitis A about national hepatitis policies and programmes, and to select vaccination policy. Further details are presented in Table 4.2. one of the following three statements: To our knowledge, this information is accurate; To our knowledge, this information The following survey items were most commonly identified as is not accurate; or We take no position regarding this statement. points on which civil society respondents in the African region disagreed with their governments’ responses: item 1.3, regarding Detailed findings for all civil society survey items are presented whether the government has a viral hepatitis prevention and in Annex C. In sum, almost half of all civil society respondents control programme that includes activities targeting specific thought that the information from their governments was accurate populations; item 3.2, regarding hepatitis case definitions and for 20 or more of the 25 items. Regarding the proportions of the reporting of deaths; item 3.3, regarding disease registration respondents who marked items as “not accurate,” more than half and reporting; and item 3.4, regarding the reporting and investigation thought that the information from their governments was not of hepatitis outbreaks. Further details are presented in Table 4.3. accurate for at least four items.

Table 4.3. Survey items eliciting the highest levels of disagreement from civil society respondents, African region (N=7)

# (%) of respondents who indicated disagreement with their governments’ Question(s) addressed by governments Survey item response(s) by selecting “to our for 2013 WHO global policy report knowledge, this information is not accurate” Does your government have a viral hepatitis prevention and control 1.3 programme that includes activities targeting specific populations? 5 (71.4%) If yes, please indicate which populations. Are there standard case definitions for hepatitis infections?

Are deaths, including from hepatitis, reported to a 3.2 central registry? 3 (42.9%) What percentage of hepatitis cases are reported as “undifferentiated” or “unclassified” hepatitis?

Are liver cancer cases registered nationally?

3.3 Are cases of HIV/hepatitis co-infection registered nationally? 4 (57.1%) How often are hepatitis disease reports published?

Are hepatitis outbreaks required to be reported to the government? If yes, are they further investigated?

3.4 Is there adequate laboratory capacity nationally to support viral 3 (42.9%) hepatitis outbreak investigations and other surveillance activities? Chapter 4: Chapter African Region

33 African Region continued

4.3. Qualitative findings from countries where government Both Long Life Africa and Comfort Foundation Ghana also noted that information is lacking the hepatitis B vaccine is not sufficiently available in rural health care settings. Long Life Africa suggested that this problem may contribute to high hepatitis B prevalence rates in rural parts of Ghana. Civil society survey respondents based in countries where governments did not submit information for the 2013 WHO global According to Uganda’s National Organization for People Living with policy report did not have any information to review and hence Hepatitis B, “The Ugandan government introduced HBsAg vaccine did not complete the component of the survey discussed in the in the extended programme of immunisation for infants in 2002. preceding section. They only completed a survey component in However, this programme does not cover the vaccination of adults which respondents were invited to write brief statements discussing and at-risk population. Mothers are also still reluctant to take their the policy response to viral hepatitis in their countries. Respondents babies for immunisation.” were encouraged to focus on one or more of five topics: national Respondents from several countries called attention to the role coordination; awareness-raising, partnerships and resource and needs of the health workforce in relation to viral hepatitis. mobilisation; evidence-based policy and data for action; prevention Encadrement des Personnes Infectées par l’Hépatite noted that of transmission; and screening, care and treatment. the Democratic Republic of the Congo does not have nearly enough The purpose of this section is to present some excerpts that are hepatology specialists. Hep Support in Mauritius wrote: generally reflective of the concerns of respondents in the African Doctors are not well informed about viral hepatitis and its region. The following data represent only the views of the 11 management. ... We cannot refer to people diagnosed with viral civil society survey respondents that did not have government hepatitis as “patients” – they are just told they are positive and left information to review (four from Uganda, three from Ghana, and to themselves. one each from the Democratic Republic of the Congo, the Gambia, Ghana and Mauritius). The full text of all respondents’ statements Association Sauvons l’Afrique Des Hépatites of Togo noted the can be found later in this chapter. absence of national clinical guidelines for the management of viral hepatitis and suggested that health professionals do not have Theobald Hepatitis B Foundation in Ghana and Action for Rural sufficient competence in this area of health care. Transformation in Uganda both wrote about the need for better efforts to raise awareness about viral hepatitis. Hope Life International in the Gambia called on that country’s government to enlist the Ministry of Health and the World Health According to Theobald Hepatitis B Foundation, about one-third Organization to organise training workshops for health workers who of Ghanaians living with viral hepatitis are unaware of their status. staff hepatitis programmes. The organisation stated: From Uganda, Action for Rural Transformation wrote: Culturally and linguistically appropriate educational messages and materials are required to make appropriate hepatitis B information Health facilities and health staff have not been adequately prepared available to Ghana’s diverse population. Because people access for case management. A comprehensive policy for management of information in different ways, information must be available in hepatitis B virus has yet to be approved. a variety of formats. At the same time, this organisation observed that there has been Action for Rural Transformation expressed the following concern some progress in protecting health workers from hepatitis B, about the situation in Uganda: with the Ugandan Ministry of Health procuring hepatitis B vaccine for health workers as well as encouraging health workers to use The people who commonly serve as resources for raising awareness universal precautions. The Ministry of Health was reported to also about issues in communities – health workers, politicians, and be backing efforts to phase out the re-use of syringes and introduce cultural and religious leaders – themselves have very little factual auto-disabling syringes at all levels of care in public and private information on viral hepatitis. National booklets developed for health facilities health education have not been translated into local languages for information dissemination. On a related note, another Ugandan organisation went into some detail about the progress it has observed in that country. Giving Hope Survey respondents from Ghana and Uganda presented a complex Foundation wrote: picture regarding how much progress is being made on hepatitis B vaccination in those countries. According to Long Life Africa in Ghana, The biggest challenge for civil society organizations involved in that country’s Ministry of Health introduced a policy incorporating hepatitis is that there has been little involvement from the Ministry hepatitis B vaccination into the childhood immunization programme of Health (MoH), and we have found it hard to carry out some in 2002. Long Life Africa characterized this as “a step in the right national activities that require MoH endorsement. The MoH has direction, but woefully inadequate.” The organisation explained: cited lack of personnel and resources for its lack of interest. But because of continued outreach and advocacy, there has been Only children born after 2002 are protected against the disease, growing interest and involvement from the MoH since late 2013. ... while the vast majority of the youth who are the future leaders In 2014, we have seen increased interest around viral hepatitis in of this nation are left to die. Uganda. The President of Uganda, during the National Resistance According to Comfort Foundation Ghana, hepatitis B screening and Movement Day on 26 January, made special mention of the need vaccination outside of the childhood immunisation programme is to raise awareness regarding this preventable illness. The MoH generally not covered by health insurance. The organisation wrote: together with other stakeholders is planning to hold a series of events across the country to commemorate World Hepatitis Screening is only covered and prescribed at hospitals for patients Day 2014. ... With continued advocacy, 2014 is promising to be suspected to be reactive to hepatitis B or hepatitis C. Hepatitis B a breakthrough year with regard to hepatitis in Uganda.

Chapter Region 4: African immunoglobulin G and hepatitis B monovalent vaccine for babies born to hepatitis B-reactive mothers are also not covered.

34 Global Community Hepatitis Policy Report Cameroon

Positive-Generation*

NGO – health (hepatitis, AIDS, tuberculosis, sexual and reproductive health) and human rights Yaoundé, Cameroon www.camerounaids.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Cameroon reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 68.0% thought to not be accurate for 32.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 2.1, 3.1, 3.2, 3.3, 3.5, 4.1, 4.2, 4.3, 1.3, 2.2, 3.4, 4.4, 4.5, 4.10, 5.2 and 5.5. 4.6, 4.7, 4.8, 4.9, 5.1, 5.3 and 5.4.

Survey comments from Positive-Generation:

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 5.5. No drug for treating hepatitis B is on the Lamivudine is used in the national HIV protocol. this information national essential medicines list or subsidised by is not accurate. the government. The following drugs for treating hepatitis C are on the national essential medicines list or subsidised by the government: pegylated interferon and lamivudine.

Statement from Positive-Generation >> Care. This is also very expensive and regarding key hepatitis policy issues is only 30% funded by the government. in Cameroon: Most patients prefer to be cared for traditionally because it is also The main problems related to testing, considered a mystical disease by those care and treatment of viral hepatitis who are not diagnosed in the hospital. nationally are: >> Treatment. It is long, arduous and expensive, so patients need patience >> Screening. The vaccine remains for both themselves and their friends expensive (7000 CFA Francs each dose and family members. The major per week) given the very low standard problem with treatment is ignorance of living of the population. No one has on the part of the patient about access or the disease is discovered the illness. Very often the patient already in an advanced state. abandons the treatment due to a lack of financial means. Chapter 4: Chapter African Region

* World Hepatitis Alliance member.

35 Democratic Republic of the Congo

Encadrement des Personnes Infectées par l’Hépatite (EPIH)*

NGO – hepatitis patient group Goma, Democratic Republic of the Congo

SURVEY HIGHLIGHTS

The Government of the Democratic Republic of the Congo did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore Encadrement des Personnes Infectées par l’Hépatite could not comment on government information for this report.

The organisation provided the following What should be the government’s What should be the roles and general statement regarding key hepatitis role in bringing about these changes? responsibilities of other stakeholders policy issues in the Democratic Republic What responsibilities should the at the community, national and of the Congo: government have? international levels? >> The government should establish >> At their respective levels, other What are the greatest problems with the a national hepatitis programme that stakeholders must respect and national response to viral hepatitis? promotes the following: enforce treaties and resolutions. >> Lack of mechanisms for enhancing They should sensitise decision- −− Strengthen screening and early hepatitis B and hepatitis C screening. makers such as government officials, treatment to stop transmission. representatives of foundations, and >> Lack of appropriate sanitation −− Information on the prevention of benefactors. Stakeholders must screening for hepatitis. hepatitis to assist in the adoption make funds available to fight this >> Very insufficient number of responsible behaviour. disease. They must also fight against of hepatology specialists. discrimination in speeches and through −− Early treatment, support and the distribution of funds allocated to >> No access to medicines. assist people. four priority public health diseases: >> Officials should give the population −− Destigmatization and the fight malaria, tuberculosis, HIV and hepatitis. necessary information about the against discrimination in order dangers of hepatitis. to promote the implementation of What evidence exists to support your prevention combined with screening organisation’s viewpoint? and treatment for other diseases. What needs to change? >> World newspapers. −− Train professionals in different cross- >> The whole health care system must cultural approaches to counselling. >> Reports on campaigns in schools, be reformed. the university, churches and markets. −− Improve the link between awareness, prevention, screening and care. >> The interventions of national and international radio and television stations (RFI, TRNC, Okapi, Kivu ONE). Chapter Region 4: African

* World Hepatitis Alliance member.

36 Global Community Hepatitis Policy Report Gambia

Hope Life International Charitable (HLI)*

NGO – charitable hepatitis group Banjul, the Gambia www.hopelifeinternational.org

SURVEY HIGHLIGHTS

The Government of the Gambia did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore Hope Life International Charitable could not comment on government information for this report.

The organisation provided the following What should be the government’s >> Implement programmes to reduce viral general statement regarding key hepatitis role in bringing about these changes? hepatitis infections in the communities. policy issues in the Gambia: What responsibilities should the >> Develop, expand, and support outreach government have? services for clients with a higher risk of Awareness-raising, partnerships acquiring viral hepatitis. and resource mobilisation. Some of the >> National governments should greatest problems with this component of recognize viral hepatitis as an urgent >> Support the government’s efforts to the national response to viral hepatitis are public health issue and prioritise reduce stigma and discrimination as follows: hepatitis. Governments should collect against viral hepatitis in the complete and accurate data on the community. >> The government does not prioritise screening of donated blood and >> Fund treatment and care for people fighting viral hepatitis like it does institute or strengthen blood screening living with viral hepatitis in the HIV/‌AIDS despite the increasing programmes in the country. community. hepatitis infection rate. >> The government has not established >> Liaise with WHO to provide technical >> The government does not designate the goal of eliminating hepatitis B. support to ensure that national any department or unit to carry out >> The government should provide full governments are able to conduct viral hepatitis-related activities, such support to health care institutions effective surveillance and publish as prevention and control. and NGOs working on viral hepatitis national incidence and prevalence >> There are few health care institutions/ activities in terms of funding, technical statistics. NGOs that are carrying out viral support and moral support. >> Implement awareness-raising hepatitis activities in the country. >> The government should provide a link programmes to reduce stigma and >> The government does not have a between health care institution/NGOs prevent infection. viral hepatitis prevention and control and World Health Organization (WHO) >> Cooperate and partners with member programme that includes activities country representative programmes on and suppliers to ensure the affordable targeting health-care workers. hepatitis activities. supply of auto-disable syringes and a >> The government through the Ministry of timeline for their mandatory use in all What needs to change? Health and WHO should organise training national healthcare systems. workshops for health care workers who >> The government needs to provide a work in hepatitis programmes. The evidence exists to support our conductive atmosphere to healthcare >> The government should designate a organisation based on information institutions and NGOs that are carrying out department or unit to work and gather gathered from other colleagues working viral hepatitis activities in the country. information on liver cancer cases in the Ministry, hospitals and from our >> The government needs to realise the registered nationally as well as publish daily activities. The Gambian government magnitude of the problem that viral hepatitis disease reports monthly. has really done well in the provision of hepatitis poses for communities and health facilities but more needs to be done. >> The government should employ needs to encourage and support health and train new staff to handle viral care institutions and NGOs to fight it. hepatitis activities. >> The government needs to designate >> The government should have a national a department or unit responsible policy for hepatitis vaccination. solely for carrying out viral hepatitis activities. What should be the roles and >> The government needs to employ responsibilities of other stakeholders 4: Chapter and train new staff to handle viral at the community, national and hepatitis activities. international levels? >> Adequate information needs to

be provided on the viral hepatitis >> Increase access to hepatitis C treatment African Region prevention and control programme. and care for higher-risk individuals and groups in the community. >> The government needs to be more committed in fighting hepatitis. >> Improve access to the viral hepatitis treatment continuum.

* World Hepatitis Alliance member.

37 Ghana

Comfort Foundation Ghana*

NGO – direct service provider Tamale, Ghana

SURVEY HIGHLIGHTS

The Government of Ghana did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore Comfort Foundation Ghana could not comment on government information for this report.

The organisation provided the following There are a lot of misconceptions Screening, care and treatment general statement regarding key hepatitis about hepatitis B among the public. policy issues in Ghana: Unfortunately, civil society organisations Current situation: (CSOs) and other health professionals Prevention of transmission often give varied information about National Health Insurance is available for the causes and transmission of viral consultations and basic care, but most Current situation: hepatitis, thus causing fear and panic of the medications for viral hepatitis among patients and the public, leading are not covered. The treatment options Ghana has a National Health Insurance to stigmatization. and outcomes are not well explained to Scheme (NHIS). Hepatitis B vaccination patients by care providers or prescribers. of babies is part of the Expanded Little work is done on research and One of the consequences of this is Programme of Immunization. Babies statistics on prevalence of hepatitis B and that many chronic hepatitis B patients from 6 weeks onwards receive the C infections in the country. In general, receive treatment thinking they will be pentavalent vaccine (diphtheria, polio, the government and CSOs/NGOs are cured. Due to misconceptions about viral tetanus, hepatitis B, influenza type B). less active in the area of viral hepatitis, hepatitis, patients and their relatives The coverage of this programme is good because of the limited funds available for need a lot of counselling in order to be in all regions of the country. its prevention. able to know and accept their condition. Counsellors are often not available. Unfortunately, hepatitis B screening What needs to change? and vaccination outside this programme There is a lack of detailed knowledge about is not covered by the health insurance. >> Everyone should have access to hepatitis B and C among caregivers in local Screenings are only covered and hepatitis B and C screening under hospitals. In many cases, equipment for prescribed at hospitals for patients the nation’s health insurance scheme. further investigations is not available suspected to be reactive to hepatitis B and/ to them. The country as a whole only >> Hepatitis B vaccination should be or C. Hepatitis B immunoglobulin G and has a very small number of specialists in covered by the nation’s insurance, hepatitis B monovalent vaccine for babies hepatology. Due to stigmatization, viral preferably for every citizen. If this is not born to hepatitis B reactive mothers are hepatitis patients sometimes do not find realistic, it should be open to at least all also not covered by NHIS. their way to proper care. The formation family members/close contacts of the of patient groups remains a challenge for person with hepatitis B. The hepatitis B vaccine is available in the same reason. In Ghana, the preference most hospitals, although the accessibility >> Although major international funds for local herbal treatment by the public and availability of this vaccine in the rural for prevention of viral hepatitis are not for various sicknesses is high. This is also areas is poor. Another challenge is the available, the government should take the case for viral hepatitis. This exposes vaccination schedule (0,1,6), which makes the initiative to develop a strong agenda patients to further liver damage. follow-up difficult for clients. There is a for the prevention of viral hepatitis. general lack of knowledge about mother- What needs to change? >> The risk of getting hepatitis B to-child transmission of hepatitis B and and C could be reduced if proper its prevention among care providers >> In-service trainings and workshops education campaigns are carried out. (administration of immunoglobulin should be organized periodically on Collaboration of government and civil and monovalent vaccine immediately viral hepatitis for caregivers and CSOs society organisations is required after birth). by government and other alliances. >> On a national and international level the prevention of viral hepatitis should be given the same attention and funds as that of malaria, HIV, tuberculosis, etc. >> Stakeholders should form hepatitis alliances on a national level, to be able to have more impact on the national hepatitis agenda. Chapter Region 4: African

* World Hepatitis Alliance member.

38 Global Community Hepatitis Policy Report Ghana

Long Life Africa*

type of organisation unknown Accra, Ghana www.longlifeafrica.com

SURVEY HIGHLIGHTS

The Government of Ghana did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore Long Life Africa could not comment on government information for this report.

The organisation provided the following Besides, most of these vaccines can only Furthermore, ignorance about the general statement regarding key hepatitis be found in some prestigious hospitals in condition remains a major challenge. policy issues in Ghana: urban areas, while those hospitals in rural Research conducted by Long Life Africa areas do not have access to these vaccines. revealed that about 70% of senior high According to the Ghana demographic Records available to us revealed that there students have no knowledge about health survey, hepatitis B virus is very is a high prevalence rate among the rural this condition and this seems to be the endemic in Ghana particularly in the Upper population due to lack of vaccines in these situation among the general population. East Region where it is believed that about areas coupled with the fact that there are The Ministry of Health and the Ghana 21% of the population is hepatitis-B positive. no treatment guidelines for this condition. Health Service seem to be doing poorly Currently it is circulated in the media and Patients who are diagnosed with hepatitis in this regard. This apathy and lukewarm many other places that about four million B are left with no option other than to buy attitude from government has compelled Ghanaians are hepatitis-B positive. This medications at exorbitant prices, while Long Life Africa to enter into partnership information could be quite true since there in contrast HIV treatment is completely with community radio networks are inadequate data on this condition in free. Long Life Africa has constantly to intensify campaigns in communities the country. appealed to the Ministry of Health, Ghana and schools. AIDS commission and National Health In Ghana the Ministry of Health has a policy Authority to look into this situation and In addition, Long Life Africa is collaborating that incorporated the condition into the make an effort to arrest the situation. with various district assembles to provide childhood immunization programme in To date, nothing seems to be happening free hepatitis B screening and vaccination 2002. This is a step in the right direction in this regard. for junior high schools in the country. but woefully inadequate. The inadequacy The aim of this exercise is to protect those of this policy is that only children born without the virus and to refer those with after 2002 are protected against the the virus for immediate treatment. disease, while the vast majority of the youth who are the future leaders of this nation are left to die. Chapter 4: Chapter African Region

* World Hepatitis Alliance member.

39 Ghana

Theobald Hepatitis B Foundation*

NGO – hepatitis patient group Accra, Ghana www.theobaldhepb.org

SURVEY HIGHLIGHTS

The Government of Ghana did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore Theobald Hepatitis B Foundation could not comment on government information for this report.

The organisation provided the following Knowledge of hepatitis B among Written educational materials, support general statement regarding key hepatitis health and human service providers groups and peer training programmes are policy issues in Ghana: promotes the delivery of quality care just a few ways to help promote a healthy and vaccination, creates awareness lifestyle and prevent disease progression. Viral hepatitis, a silent and underestimated and changes practices and attitudes. public health problem worldwide, The government together with other We believe these things can be achieved is particularly endemic in Sub-Saharan stakeholders should advocate for through the collaborative efforts Africa and Ghana. Thousands of stressing the need for education among of the following: Ghanaians live with viral hepatitis. healthcare providers on viral hepatitis About a third of Ghanaians living with as this disease is just as fatal as other >> Government, ministries and viral hepatitis are unaware of their status communicable diseases such as HIV, other stakeholders must be and are not receiving care and treatment malaria and tuberculosis. involved in the allocation of for the condition. funds for awareness campaigns. Culturally and linguistically appropriate >> Inclusion of co-operate organisations Raising awareness about hepatitis is educational messages and materials are and public and private institutions crucial to effectively fight social stigma, required to make appropriate hepatitis in the awareness programme. stem the tide of new infections, and ensure B information available to Ghana’s that testing, information, counselling and diverse population. Because people >> Inclusion of health insurance treatment reach those in need. access information in different ways, and other stakeholders in the information must be available in a variety awareness programme. We believe that educating the general of formats through traditional, news media >> Inclusion of awareness campaign public regarding hepatitis B, including and technology. programmes at the various how it is transmitted, prevented and community-based health planning treated, will result in more people reducing Breaches in infection control can result services, district health facilities or eliminating their risk, getting screened, in healthcare-associated transmission and regional health facilities across diagnosed and vaccinated. By raising of hepatitis B. An increase in awareness, the nation. awareness about the disease, public understanding and adherence to proper education will also reduce the stigma infection control practices will prevent and discrimination associated with such transmission. hepatitis B. In addition to becoming knowledgeable regarding hepatitis B, newly diagnosed persons need appropriate information to maintain a healthy lifestyle. Examples include avoiding alcohol and certain medications, proper diet and exercise. Chapter Region 4: African

* World Hepatitis Alliance member.

40 Global Community Hepatitis Policy Report Mali

SOS Hépatites Mali*

NGO – hepatitis patient group Bamako, Mali

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Mali reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 20.0% thought to not be accurate for 48.0% the government information for 32.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.2, 2.2, 4.1, 4.4 and 4.8. 1.1, 1.3, 2.1, 3.1, 3.2, 3.3, 3.4, 3.5, 4.2, 4.5, 4.3, 4.7, 4.9, 4.10, 5.1, 5.2, 5.4 and 5.5. 4.6 and 5.3.

Survey comments from SOS Hépatites Mali:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.2 There is no designated governmental A focal point has been appointed in the Ministry this information unit/‌department responsible solely for coordinating of Health. is accurate. and/or carrying out viral hepatitis-related activities. It is not known how many people work full-time on hepatitis-related activities in all government agencies/bodies.

2.2 The government collaborates with the The government does collaborate with CSOs, but following in-country civil society group to develop does not support them technically or financially. and implement its viral hepatitis prevention and control programme: SOS Hepatitis.

4.1 There is a national hepatitis A vaccination policy. Included in the hepatitis B immunisation programme for children.

4.4 There is a national policy specifically Yes, at least the national immunisation

targeting mother-to-child transmission programme for children takes this into account. 4: Chapter of hepatitis B (Annex B). African Region

* World Hepatitis Alliance member.

41 Mali

SOS Hépatites Mali continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.8 There is a national infection control policy for The only structure that does this in Mali are the this information blood banks. All donated blood units (including blood banks during blood donations. But from is accurate. family donations) and blood products nationwide national policy. are screened for hepatitis B and hepatitis C

××To our knowledge, 1.1 There is no written national strategy or plan that In Mali a national strategy and plan are not this information focuses exclusively or primarily on the prevention written – no plan or national programme is not accurate. and control of viral hepatitis. that takes into account the fight against viral hepatitis.

1.3 The government does not have a viral hepatitis No doesn’t exist, nothing in this direction has prevention and control programme that includes been done. activities targeting specific populations.

2.1 The government did not hold events for World No the government does not organise, only SOS Hepatitis Day 2012 and has not funded other Hépatites while the ministers participate. viral hepatitis public awareness campaigns since January 2011.

3.1 There is no routine surveillance for viral Formal routine surveillance does not exist. hepatitis. Chapter Region 4: African

42 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 3.2 There are no standard case definitions for No centralised data on national level, except this information hepatitis. Hepatitis deaths are not reported the national centre for blood transfusions. is not accurate. to a central registry. Of the hepatitis B and hepatitis C cases, 15%–20% and 4.98%, respectively, are reported as “undifferentiated” or “unclassified” hepatitis

3.3 Liver cancer cases and cases with HIV/ No, only SOS Hépatites Mali, in collaboration hepatitis coinfection are registered nationally. with the blood transfusion centre and Gabriel The government publishes hepatitis disease Touré hospital, publicly present the cases on reports annually. 28th July.

3.4 It is not known whether hepatitis outbreaks are No, only blood banks do this during blood required to be reported to the government. There is donations. adequate laboratory capacity nationally to support investigation of viral hepatitis outbreaks and other surveillance activities.

3.5 It is not known whether there is a national No nothing in this direction. public health research agenda for viral hepatitis, or whether viral hepatitis serosurveys are conducted regularly.

5.3 People testing for both hepatitis B and hepatitis But SOS Hépatites and blood banks regularly do C register by name; the names are kept confidential this. But people are not taken up/supported after within the system. Hepatitis B and hepatitis C tests their test. are not free of charge for all individuals, but they are free of charge for blood donors. Hepatitis B and hepatitis C tests are compulsory for blood donors. Chapter 4: Chapter African Region

43 Mali

SOS Hépatites Mali continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no 4.3 It is not known what percentage of newborn But I know that in some health centres, position regarding infants nationally in a given recent year received the registers contain the statistics of children this statement. the first dose of hepatitis B vaccine within 24 hours vaccinated against hepatitis especially of birth or what percentage of one-year-olds (ages hepatitis B. 12–23 months) in a given recent year received three doses of hepatitis B vaccine.

5.1 It is not known how health professionals obtain However there is a network of professionals the skills and competencies required to effectively created by seven hepatitis specialists. care for people with viral hepatitis. There are no national clinical guidelines for the management of viral hepatitis. There are national clinical guidelines for the management of HIV, which include recommendations for coinfection with viral hepatitis.

5.2 The government does not have national Nothing has been done officially in Mali apart policies relating to screening and referral to care from the actions of SOS Hépatites Mali who fight for hepatitis B or hepatitis C. for that.

5.4 Publicly funded treatment is not available for But that doesn’t exist. hepatitis B or hepatitis C.

Statement from SOS Hépatites Mali Scale up and implement programme regarding key hepatitis policy issues against hepatitis and care of patients. in Mali: Strengthening capacities/support Information, communication, orphans, widows and widowers sensisbilisation populations for prevention of hepatitis. against hepatitis. Create a dynamic database to track Advocacy/lobbying for the Mali the evolution of hepatitis in Mali. Government to develop a national programme against viral hepatitis and build partnership relations with the World Health Organization and other organisations around the world. Chapter Region 4: African

44 Global Community Hepatitis Policy Report Mauritius

Hep Support*

NGO – hepatitis patient group Vacoas, Mauritius

SURVEY HIGHLIGHTS

The Government of Mauritius did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore Hep Support could not comment on government information for this report.

The organisation provided the following screen people for viral hepatitis. Television In my opinion, HepSupport has done general statement regarding key hepatitis programmes, radio and written media a lot for awareness and screening – Elisa policy issues in Mauritius: should also be involved in order to help test, viral load and genotyping. Patients achieve large-scale awareness. just ask “what else?” Treatment is given There is no national response to to a very few “and selective.” There are Hepatitis C. A central or regional hepatology unit no established criteria (to our knowledge) must be set up where NGOs could share set up for giving treatment to patients Hepatitis B is being taken care of – the work, where anyone can get any suffering from hepatitis C in government vaccination of newborns, school children, information about viral hepatitis. hospitals. Only a very few are being chosen pregnant women, medical professionals, each year, and at times no one is chosen. dialysis patients. Nothing as such has been Doctors in hospitals and dispensaries done to deal with Hepatitis C; only blood should be trained specifically so that Private treatment is expensive and is not donors are being screened. they become fully conversant with affordable to most people who have viral hepatitis and are prepared to viral hepatitis. There is no register for any viral hepatitis- refer appropriate cases of viral hepatitis positive people. We cannot refer to people to hepatology units. diagnosed with viral hepatitis as “patients” – they are just told they are positive and Government should accept help left to themselves. There is no hepatology from NGOs, from corporate social unit. Doctors are not well informed about responsibility providers, through Ministry viral hepatitis and its management. People of Finance, should give more attention coinfected with HIV and viral hepatitis are to those projects. not being made aware of the consequences. Nothing is being done to destigmatise The World Health Organizataion (WHO) people who have viral hepatitis. should help those involved NGOs to address WHO guidelines. The Government should set up a national awareness campaign covering all regions HepSupport has been celebrating at risk, most firms, students at all levels, World Hepatitis Day for many years paramedicals, and dentists. and there are lots of newspaper articles, radio programmes (interactive), Government should involve NGOs to have and television programmes. access to these places, to deliver talks and Chapter 4: Chapter African Region

* World Hepatitis Alliance member.

45 Nigeria

Beacon Youth Movement*

NGO – direct service provider Lafia, Nasarawa State, Nigeria www.bymngo.com.weebly

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Nigeria reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 36.0% thought to not be accurate for 4.0% the government information for 60.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 3.4, 4.1, 4.2, 4.4, 4.7, 4.10 and 5.5 4.6. 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 3.5, 4.3, 4.5, 4.8, 4.9, 5.1, 5.2, 5.3 and 5.4.

Survey comments from Beacon Youth Movement:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is no written national strategy or plan that There is no national strategy or plan available this information focuses exclusively or primarily on the prevention to civil society organization working in Nigeria is accurate. and control of viral hepatitis. yet. But information going round is that government has set up a committee but no feedback on this matter yet to the various CSOs working on Hepatitis.

1.2 There is no designated governmental unit/ To my knowledge, this data is right because the department responsible solely for coordinating government has not been involving the various and/or carrying out viral hepatitis-related stakeholders working on hepatitis like CSOs. activities. It is not known how many people work Thereby not knowing those staff or various full-time on hepatitis-related activities in all departments working to confront viral hepatitis government agencies/bodies. in Nigeria.

3.4 Hepatitis outbreaks are required to be reported The information is correct. Despite the fact that to the government and are further investigated. we are not actively involved in the whole process. There is inadequate laboratory capacity nationally to support investigation of viral hepatitis outbreaks and other surveillance activities.

4.4 There is no national policy that specifically The information is accurate information on targets mother-to-child transmission of hepatitis B. this matter but involvement of CSOs is poor. Chapter Region 4: African

* World Hepatitis Alliance member.

46 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.7 Official government estimates of the number This information is correct because no research this information and percentage of unnecessary injections has being carried out to ascertain the number is accurate. administered annually in healthcare settings of unnecessary injections administered but were not known. involvement of the various stakeholders will help to give more accurate data.

××To our knowledge, 4.6 There is a national policy on injection safety The majority of health care settings lack most of this information in health-care settings, which recommends auto- the materials listed by the Nigerian Government. is not accurate. disable syringes for therapeutic injections. It is not known whether single-use or auto-disable syringes, needles and cannulas are always available in all health-care facilities.

--We take no 1.3 The government has a viral hepatitis prevention Records and research available to our position regarding and control programme that includes activities organisation indicate that many health this statement. targeting the following specific population: care personnel are not benefiting from this health-care workers (including health-care programme due to a lack of vaccines in the waste handlers). various departments or units.

2.1 Information was not provided on whether Not one single time has the government ever the government held events for World Hepatitis involved the various CSOs working on hepatitis Day 2012 or funded other viral hepatitis public in any activities to mark World Hepatitis Day awareness campaigns since January 2011. or any programme to confront hepatitis in Nigeria either through partnership or funding.

2.2 Information was not provided on whether the Because they know the area they are lacking government collaborates with in-country civil – that is why no information was provided. society groups to develop and implement its viral hepatitis prevention and control programme. Chapter 4: Chapter African Region

47 Nigeria

Beacon Youth Movement continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no 3.1 There is routine surveillance for viral hepatitis. The CSOs were not involved in this whole process. position regarding Information was not provided about which specific Therefore, making it sound new to us. this statement. types of acute and chronic hepatitis are monitored by surveillance systems.

3.2 There are standard case definitions for We are so ignorant of these matters. hepatitis. Deaths, including from hepatitis, are reported to a central registry. Information was not provided on the percentage of hepatitis cases reported as “undifferentiated “or “unknown” hepatitis.

3.3 Liver cancer cases are registered nationally. We are not actively involved nor has data on this Information was not provided on whether cases been provided to CSOs. with HIV/hepatitis coinfection are registered nationally. The government publishes hepatitis disease reports monthly.

3.5 Information was not provided on whether No response from the government because there is a national public health research agenda the CSOs are not actively involved. for viral hepatitis. Viral hepatitis serosurveys are not conducted regularly.

4.3 Information was not provided regarding No government policy is in place regarding the percentage of newborn infants nationally the prevention of new cases of infected mothers in a given recent year who had received the first to their babies through the administration dose of hepatitis B vaccine within 24 hours of birth of the first dose, thereby fuelling the rate or the percentage of one-year-olds nationally at which infection is increasing. (ages 12–23 months) in a given recent year who had received three doses of hepatitis B vaccine. Chapter Region 4: African

48 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no 4.5 There is a specific national strategy and/or The CSOs working on viral hepatitis in position regarding policy/guidelines for preventing hepatitis B and Nigeria are not aware of this strategy because this statement. hepatitis C infection in health-care settings. It is not the government has not involved CSOs in known whether health care workers are vaccinated this process. against hepatitis B prior to starting work that might put them at risk of exposure to blood.

4.8 There is a national infection control policy for Just a few of the blood banks screen for Hepatitis blood banks. All donated blood units (including B and hepatitis C. Most of them only screen for family donations) and blood products nationwide HIV and syphilis. are screened for hepatitis B. It is not known whether all donated blood units (including family donations)and blood products nationwide are screened for hepatitis C.

4.9 It is not known whether there is a national No information as it relates to the policies policy relating to the prevention of viral hepatitis of those who inject drugs. among people who inject drugs.

5.1 Health professionals obtain the skills and In order to effectively combat this viral infection, competencies required to effectively care for all stakeholders like the CSOs working on people with viral hepatitis through schools for hepatitis need to be trained alongside the medical health professionals (pre-service education), personnel because health workers alone cannot on-the-job training and postgraduate training. combat hepatitis. There are national clinical guidelines for the management of viral hepatitis, but information was not provided on whether these guidelines include recommendations for cases with HIV coinfection. Information was not provided on whether there are national clinical guidelines for the management of HIV, which include recommendations for coinfection with viral hepatitis.

5.2 It is not known whether the government has Non-involvement of CSOs has caused a delay national policies relating to screening and referral in referrals thereby making the infected most to care for hepatitis B or hepatitis C. at times confused as to the next step to take 4: Chapter toward the management of viral hepatitis in Nigeria. Thereby increasing the complications of this infection. African Region

49 Nigeria

Beacon Youth Movement continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no 5.3 People testing for both hepatitis B and hepatitis Testing for hepatitis B and hepatitis C is not free position regarding C register by name; the names are kept confidential in Nigeria. A database is in place but no action this statement. within the system. Hepatitis B and hepatitis C has been taken to implement the data at hand. tests are not free of charge. Information was not provided on whether hepatitis B or hepatitis C tests are compulsory for members of any specific group.

5.4 Publicly funded treatment is not available for Not aware because we are not involved hepatitis B or hepatitis C. in the process.

Statement from Beacon Youth Awareness is very key to the reduction of Resource mobilisation has been another Movement regarding key hepatitis any infectious disease in the world. Here burden to the actualization of free hepatitis policy issues in Nigeria: in Nigeria, awareness is very low, which generation due to funding issues. World has helped to fuel the spread of the virus. Hepatitis Day has not been celebrated Hepatitis-related issues have raised a lot Policies on hepatitis are not in place and by most CSOs because no monetary of concern when it comes to awareness, therefore there is no implementation assistance is being offered in helping sensitization, partnership and resources of any kind to fight the high burden to fight hepatitis in Nigeria. mobilisation in Nigeria. in Nigeria.

The Nigerian Government has turned Partnership is a very important issue deaf ears to the rate at which hepatitis when it comes to tackling hepatitis and is spreading by not identifying and other health-related problems because mobilising resources at both the federal of the huge burden it has in the society. and state level to tackle hepatitis through Partnership of various stakeholders will budgeting a specific percentage of the be very key because it will help to confront yearly budget to fight viral hepatitis the burden of viral hepatitis within a in Nigeria. short period of time. But the issue here in Nigeria has a lot of devastating effects Over the years, the issue of partnership because of lack of partnership between the has become so problematic that there Nigerian Government and other relevant is no recognition of other relevant shareholders have slowed down progress stakeholders: the various CSOs working on awareness and reduction of viral to tackle the infection at the local and hepatitis in Nigeria. regional levels. Chapter Region 4: African

50 Global Community Hepatitis Policy Report Nigeria

Chagro-Care Trust*

NGO – direct service provider and hepatitis patient group Jalingo, Nigeria

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Nigeria reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 84.0% thought to not be accurate for 16.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 2.1, 2.2, 3.1, 3.4, 3.5, 4.1, 4.2, 4.4, 1.3, 3.2, 3.3 and 4.3. 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from Chagro-Care Trust:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 2.1 Information was not provided on whether Most World Hepatitis Day events are organized this information the government held events for World Hepatitis by patient groups, professional groups is accurate. Day 2012 or funded other viral hepatitis public and NGOs. awareness campaigns since January 2011.

2.2 Information was not provided on whether the There is little or no government collaboration government collaborates with in-country civil with civil society, especially at the national level. society groups to develop and implement its viral At the state level, some state governments have hepatitis prevention and control programme. engaged civil society on creating awareness, like Taraba State and few other states in the country.

3.1 There is routine surveillance for viral hepatitis. There is no deliberate effort by government to Information was not provided about which specific conduct surveillance activities on viral hepatitis. types of acute and chronic hepatitis are monitored by surveillance systems.

3.5 Information was not provided on whether there Most data on viral hepatitis are obtained from is a national public health research agenda for NGOs, patients groups and academic studies. 4: Chapter viral hepatitis. Viral hepatitis serosurveys are not conducted regularly. African Region

* World Hepatitis Alliance member.

51 Nigeria

Chagro-Care Trust continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.2 The government has not established the goal There is no strategic framework, guidelines this information of eliminating hepatitis B. or tools available. is accurate.

4.4 There is no national policy that specifically This is sad to note – despite interventions to targets mother-to-child transmission of hepatitis B. prevent mother-to-child transmission of HIV, nothing is being done regarding viral hepatitis.

××To our knowledge, 1.3 The government has a viral hepatitis prevention Although this is a global policy, it is not being this information and control programme that includes activities practised in our country. Health workers or other is not accurate. targeting the following specific population: vulnerable groups are not protected by any policy health-care workers (including health-care like post‑exposure prophylaxis. waste handlers).

3.2 There are standard case definitions No standard case definitions exist as a national for hepatitis. Deaths, including from hepatitis, protocol, except at some hospitals that choose are reported to a central registry. Information to document such cases. was not provided on the percentage of hepatitis cases reported as “undifferentiated” or “unknown” hepatitis.

3.3 Liver cancer cases are registered nationally. This does not exist in the country. If any at all, Information was not provided on whether cases they are mostly academic studies of individuals. with HIV/hepatitis co-infection are registered nationally. The government publishes hepatitis disease reports monthly.

4.3 Information was not provided regarding the The government has a policy for infant percentage of newborn infants nationally in a vaccination and these are documented in all given recent year who had received the first dose designated health facilities across the nation. of hepatitis B vaccine within 24 hours of birth or the percentage of one-year-olds nationally (ages 12–23 months) in a given recent year who had received three doses of hepatitis B vaccine. Chapter Region 4: African

52 Global Community Hepatitis Policy Report

Statement from Chagro-Care Trust Evidence-based policy and data It is our belief that the network will regarding key hepatitis policy issues for action. There is no evidence-based strengthen civil society capacity to deliver in Nigeria: policy from government on data. There more evidence-based and sustainable is no framework of action on sentinel or interventions that meet the needs of the National coordination. There is no system prevalence studies available in the country. populace. However, government too has in place in Nigeria for coordination of Most data on hepatitis in the country are a role to play, as recently done by the activities either by government or civil obtained from NGOs, patients groups or setting up of a technical working group organisations working on viral hepatitis. academic studies from individuals. on viral hepatitis in the country. But this Until two years ago, when a group of effort should go beyond rhetoric to action. NGOs initiated the formation of a national Prevention of transmission. There are coordinating body for all civil society no government protocols, guidelines Government’s engagement with civil groups and patients groups working on or standard operating procedures on society and patient groups working viral hepatitis in Nigeria. A structure prevention of transmission for any target on viral hepatitis is very weak and poor and framework for a national network population or group. Even health workers at best. The government needs to engage was recently set up and strengthened with all the risks and job hazards are civil society in a more pragmatic manner, in Abidjan during the first Pan African not protected by any government policy devoid of any sentiments or bias, in hepatitis workshop. Civil Society Alliance on post‑exposure prophylaxis. developing a national framework of action Against Viral Hepatitis (CiSAVHiN) was on viral hepatitis. formed to coordinate all patients groups Screening, care and treatment. There are and NGOs working on viral hepatitis in the no protocols from government on What needs to change is the government’s country. An interim leadership comprising screening, care and treatment of viral approach, especially at the national of the National Coordinator, Deputy or chronic hepatitis. This is posing a big level. Until recently, the government has National Coordinator, General Secretary challenge, as it allows room for all manner not shown any commitment to the fight and four other portfolios were appointed of unethical practices and sharp practices against viral hepatitis in the country. Most to steer the leadership of the organisation by all and sundry in the name of hepatitis government policies exist only on paper, and to coordinate actions leading up to treatment, which is detrimental to the but are not working documents, despite registration with relevant government health and well-being of people living with the government signing the World Health agencies and the World Hepatitis Alliance. chronic hepatitis in the country. Assembly 2010 Hepatitis Resolution.

At the government level, there is no policy Other comments: Due to the lack of funding on viral hepatitis in place to guide coordination of actions activities in the country, most NGOs and activities on viral hepatitis The absence or lack of a framework and patients groups are incapacitated in the country. on national coordination, standard in carrying out activities to mitigate operating procedures or guidelines the scourge of viral hepatitis across the Awareness-raising, partnerships and on prevention of transmission, guidelines country, despite the seemingly very high resource mobilisation. There is no on treatment and care on viral hepatitis, incidence and prevalence of the disease clear policy or guideline on awareness- leaves much to be desired. A lot in the country. raising on viral hepatitis in Nigeria. Most of activities are going on but mostly awareness-raising events are left in the uncoordinated and as a result are not hands of patients groups, NGOs, and in most cases evidence‑based, or in line professional associations such as the with best practices. Society of Gastroenterologists. Most awareness activities are uncoordinated Civil society has risen to the challenge and lack depth and focus, due largely to recently by setting up a national alliance lack of resources and poor support from that would be responsible for coordinating government and donors. all NGOs and patients groups working on hepatitis in the country. The network Partnerships are rare, except for a few is named “Civil Society Alliance on Viral instances where some pharmaceuticals Hepatitis in Nigeria.” offer support to organisations on awareness-raising.

Resource mobilisation is a big challenge. 4: Chapter Only in a few instances do patients groups or professional associations receive support on their activities.

African Region Support from individuals on awareness- raising is not very common in the country.

53 Nigeria

Elohim Foundation*

NGO – direct service provider and hepatitis patient group Abuja FCT, Nigeria www.elohimfoundation.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Nigeria reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 84.0% thought to not be accurate for 16.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 2.1, 2.2, 3.1, 3.4, 3.5, 4.1, 4.2, 4.4, 1.3, 3.2, 3.3 and 4.3. 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from Elohim Foundation:

Information reported by government (2012–2013) Civil society respondent comments (2014)

3.5 Information was not provided on whether there Most data on viral hepatitis are obtained from is a national public health research agenda for NGOs, patients groups and academic studies. viral hepatitis. Viral hepatitis serosurveys are not conducted regularly. Chapter Region 4: African

* World Hepatitis Alliance member.

54 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.2 The government has not established the goal There is no strategic framework, guidelines this information of eliminating hepatitis B. or tools available. is accurate.

××To our knowledge, 1.3 The government has a viral hepatitis prevention This policy though shown in the Global Policy, but this information and control programme that includes activities is not existing or being practiced. Health workers is not accurate. targeting the following specific population: or other vulnerable groups are not protected by health-care workers (including health-care any policy like post‑exposure prophylaxis. waste handlers).

3.2 There are standard case definitions No standard case definitions exist, as a national for hepatitis. Deaths, including from hepatitis, protocol, except at some hospitals that choose are reported to a central registry. Information to document such cases. was not provided on the percentage of hepatitis cases reported as “undifferentiated” or “unknown” hepatitis.

4.3 Information was not provided regarding the The government has a policy for infant

percentage of newborn infants nationally in a vaccination and these are documented in all African Region given recent year who had received the first dose designated health facilities across the nation. of hepatitis B vaccine within 24 hours of birth or the percentage of one-year-olds nationally (ages 12–23 months) in a given recent year who had received three doses of hepatitis B vaccine.

55 Nigeria

Elohim Foundation continued

Statement from Elohim Foundation Evidence-based policy and data Government’s engagement with civil regarding key hepatitis policy issues for action. There is no evidence-based society and patient groups working in Nigeria: policy from government on data. There on viral hepatitis is very weak and is no framework of action on sentinel or poor at best. The government needs to National coordination. There is no system prevalence studies available in the country. engage civil society in a more pragmatic in place in Nigeria for coordination of Most data on hepatitis in the country are manner, devoid of any sentiments or activities either by government or civil obtained from NGOs, patients groups or bias, in developing a national framework organisations working on viral hepatitis. academic studies from individuals. of action on viral hepatitis. Until two years ago, when a group of NGOs initiated the formation of a national Prevention of transmission. There are What needs to change is the government’s coordinating body for all civil society no government protocols, guidelines approach, especially at the national groups and patients groups working on or standard operating procedures on level. Until recently, the government has viral hepatitis in Nigeria. A structure prevention of transmission for any target not shown any commitment to the fight and framework for a national network population or group. Even health workers against viral hepatitis in the country. was recently set up and strengthened with all the risks and job hazards are not Most government policies exist only in Abidjan during the first Pan African protected by any government policy on on paper, but are not working documents, hepatitis workshop. Civil Society Alliance post-exposure prophylaxis. despite the government signing Against Viral Hepatitis (CiSAVHiN) was the World Health Assembly 2010 formed to coordinate all patients groups Screening, care and treatment. There Hepatitis Resolution. and NGOs working on viral hepatitis in the are no protocols from government on country. An interim leadership comprising screening, care and treatment of viral Due to the lack of funding on viral hepatitis of the National Coordinator, Deputy or chronic hepatitis. This is posing a big activities in the country, most NGOs National Coordinator, General Secretary challenge, as it allows room for all manner and patients groups are incapacitated and four other portfolios were appointed of unethical practices and sharp practices in carrying out activities to mitigate to steer the leadership of the organisation by all and sundry in the name of hepatitis the scourge of viral hepatitis across the and to coordinate actions leading up to treatment, which is detrimental to the country, despite the seemingly very high registration with relevant government health and well-being of people living with incidence and prevalence of the disease agencies and the World Hepatitis Alliance. chronic hepatitis in the country. in the country.

At the government level, there is no policy Other comments: in place to guide coordination of actions and activities on viral hepatitis in the country. The absence or lack of a framework on national coordination, standard operating Awareness-raising, partnerships and procedures or guidelines on prevention of resource mobilisation. There is no transmission, guidelines on treatment and clear policy or guideline on awareness- care on viral hepatitis, leaves much to be raising on viral hepatitis in Nigeria. Most desired. A lot of activities are going on but awareness-raising events are left in the mostly uncoordinated and as a result are hands of patients groups, NGOs, and not in most cases evidence-based, or in professional associations such as the line with best practices. Society of Gastroenterologists. Most awareness activities are uncoordinated Civil society has risen to the challenge and lack depth and focus, due largely to recently by setting up a national alliance lack of resources and poor support from that would be responsible for coordinating government and donors. all NGOs and patients groups working on hepatitis in the country. The network Partnerships are rare, except for a few is named “Civil Society Alliance on Viral instances where some pharmaceuticals Hepatitis in Nigeria.” offer support to organisations on awareness-raising. It is our belief that the network will strengthen civil society capacity to deliver Resource mobilisation is a big challenge. more evidence-based and sustainable Only in a few instances do patients groups interventions that meet the needs of the or professional associations receive populace. However, government too has support on their activities. a role to play, as recently done by the setting up of a technical working group Support from individuals on awareness- on viral hepatitis in the country. But this raising is not very common in the country. effort should go beyond rhetoric to action. Chapter Region 4: African

56 Global Community Hepatitis Policy Report Nigeria

GAMMUN Centre for Care and Development Nigeria*

NGO – direct service provider Akwanga, Nigeria

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Nigeria reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 84.0% thought to not be accurate for 4.0% the government information for 12.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 2.1, 2.2, 3.1, 3.4, 3.5, 4.1, 4.2, 4.4, 3.3. 1.3, 3.2 and 4.3. 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from GAMMUN Centre for Care and Development Nigeria:

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no 1.3 The government has a viral hepatitis prevention We are not aware of this position by government. position regarding and control programme that includes activities this statement. targeting the following specific population: health-care workers(including health-care waste handlers).

Statement from GAMMUN Centre The government should show serious Local Action Committee: will coordinate for Care and Development Nigeria political will in ensuring that all line local/grassroots interventions. regarding key hepatitis policy issues ministries have a desk officer in charge in Nigeria: of Hepatitis. At the national, state and Civil society organisations at all levels local government levels, there should should be involved as they are closer The government of Nigeria just like other be a National Agency for the Control of to the people and have different ways governments gives little priority to viral Hepatitis, State Agency for the Control of of encouraging community involvement hepatitis. This situation, like HIV during its Hepatitis and Local Action Committee for and participation in activities. early phase, will sooner or later become the Control of Hepatitis respectively. endemic, killing many people and placing a greater burden on orphans before the National Agency: will coordinate national government’s attention is drawn to it. interventions.

The government’s attitude to viral State Agency: will coordinate state‑level hepatitis would need to change to prioritise interventions. this as important as other infections like HIV, tuberculosis and malaria. Chapter 4: Chapter African Region

* World Hepatitis Alliance member.

57 Nigeria

LiveWell Initiative*

NGO – direct service provider Lagos, Nigeria www.livewellng.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Nigeria reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 60.0% thought to not be accurate for 12.0% the government information for 28.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 3.3, 3.5, 4.1, 4.2, 4.4, 4.6, 4.7, 1.3, 3.1 and 3.4. 2.1, 2.2, 3.2, 4.3, 4.5, 4.8 and 5.5. 4.9, 4.10, 5.1, 5.2, 5.3 and 5.4.

LiveWell Initiative provided no comments about survey items.

Statement from LiveWell Initiative other communication tools, poor funding Screening, care and treatment. Screening regarding key hepatitis policy issues and the high level of poverty among is a very important component of in Nigeria: the people. Government and stakeholders hepatitis detection, treatment and care, can help by generating awareness and this should be done among high-risk National coordination. The greatest through electronic and print media, and by populations and the general population at problems with coordination have to improving on policy. Thereafter, the health large. The major challenges with screening do with funding and the huge size of system can implement based on policy. have to do with cost, since there is little the population. Having been recently As is being done here at LiveWell Initiative, or no availability of free screening tests. appointed the Deputy National community leaders should be recognised Government should provide funding Coordinator for the Hepatitis Alliance as major stakeholders and they should and should work in partnership with in Nigeria1; however it is a herculean be carried along, to facilitate stakeholder organisations like LWI, which provide all task amalgamating the organisations. engagement and ownership. of the above services in an ethical and Government needs to throw its weight process-driven manner. Communities behind organisations; however the first Evidence-based policy and data should surrender themselves for thing is for government to put in place for action. This is essential for informing screening, for early detection, prevention a policy on hepatitis, and thereafter to and driving the direction of policy. To build and treatment where necessary while put in place a monitoring and evaluation up evidence-based data for hepatitis, government should formulate policy, body, to ensure that programme targets strict guidelines need to be followed, ensure the strengthening of such policy are met and exceeded. In addition, for with algorithms and organisations which and facilitate implementation thereof sustainability, local and international work on hepatitis should work together in through regulation, and should generate communities need to support unison. Data gathering should be ethical, awareness through the use of the the initiatives. and a quarterly data analysis should be electronic and print media. conducted. Hepatitis disease sufferers Awareness-raising, partnerships should form cohort groups where they and resource mobilisation. There is will benefit from a win-win hepatitis study. a strong need to raise awareness on hepatitis through the sensitisation of Prevention of transmission. Condom communities, health talks, screening and social marketing and coinfection with HIV care. The greatest problems with creating should be foremost on the mind. awareness have to do with high levels of illiteracy, poor use of pictorials and Chapter Region 4: African

* World Hepatitis Alliance member. 1. This statement refers to the director of LiveWell Initiative serving as deputy national coordinator of the Hepatitis Alliance in Nigeria. 58 Global Community Hepatitis Policy Report Togo

Association Sauvons l’Afrique Des Hépatites*

NGO – hepatitis patient group Lomé, Togo www.ongasadh.org

SURVEY HIGHLIGHTS

The Government of Togo did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore Association Sauvons l’Afrique Des Hépatites could not comment on government information for this report.

The organisation provided the following Evidence-based policy and data Screening, care and treatment. Health general statement regarding key hepatitis for action. There is no systematic care professionals do not have sufficient policy issues in Togo: monitoring of viral hepatitis. There competences to effectively treat people is no standard case definition for with viral hepatitis. There are no national National coordination. There is hepatitis. Hepatitis deaths are not clinical guidelines for the management of no national strategy or plan to fight against reported to a central registry. Among viral hepatitis. viral hepatitis and therefore, there is no hepatitis B and hepatitis C cases, <8% programme/service focusing on viral and <3% respectively are presented The government must screen people hepatitis. We need a national strategy as “undifferentiated” or “unclassified” at risk and adopt a large-scale national that will lead to a national programme. hepatitis. Liver cancer cases and cases policy. Availability of essential drugs for It suits the government to mobilise the of HIV/hepatitis B coinfection are recorded the management of hepatitis at the central resources needed to develop a national nationally. In 2011, our organisation began and peripheral level needs to improve. Test plan/strategy that will lead to the to conduct screening campaigns within the must be made accessible and available creation of a programme to promote the population. We want partners in hospitals such as: markers of hepatitis creation of organisations. International and the Government to get involved and B viral load and other for better support. organisations must put pressure on allow a struggle worthy. Skills training and continuing health care our leaders to create programmes. education is needed. In that respect, drugs The community has a responsibility Prevention of transmission. Poor access must be subsidised to make it accessible to assist the Government in the fight to vaccines against hepatitis A and B for to patients living with hepatitis. Partners against the disease. the population. High cost of vaccines. must put pressure on Governments and Newborns do not receive their first provide support. The community comes Awareness-raising, partnerships and dose of vaccine against hepatitis B relay to the government. resource mobilisation. In the area of within 24 hours. Availability of vaccines awareness we have a serious problem: to the capital not within the country financial resources, on-site inspection, at an affordable cost. Routine vaccination lack of advertising posters (showing of newborns at D0 as the World indigenous, posters in local language). Health Organization advocated in our We are limited by our means. (We are regions. The government should opt for working on our own funds.) We do a large‑scale vaccination (systematic not have a partner, only the World vaccination of newborns Jo not to Health Organization. 6th week) and especially those at risk. As partners, support the government We need the Government involved and civil society to relay action on the to provide technical and financial support. ground. As organisations, they must ensure that information on prevention of disease transmission spreads, working with the media to disseminate information to the population. Chapter 4: Chapter African Region

* World Hepatitis Alliance member.

59 Uganda

Action for Rural Transformation (ART)

Community-based organisation Moyo, Uganda

SURVEY HIGHLIGHTS

The Government of Uganda did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore Action for Rural Transformation could not comment on government information for this report.

The organisation provided the following Resourced civil society organisations Screening, care and treatment. Screening general statement regarding key hepatitis should work hand-in-hand with the kits for hepatitis B surface antigen are policy issues in Uganda: government to move to the grassroots. being supplied but most often are in short supply, thus delaying or denying access National coordination. At the national Local NGOs and community-based to screening. Reagents for hepatitis B level, coordination has been very slow, organisations could help in sensitisation but core anti-agent test and liver function probably limited by resources. The lack resources. tests are not available in most general constraints to the coordination are related and district hospitals. to the involvement and engagement of University/medical school study centres players such as: could be established in areas with The drug in use is lamivudine, which high prevalence, such as the West Nile is restricted for case management of HIV. >> Lack of central government support here in Uganda, to help in the study Authorities are reluctant to allow its use and funding. No government institution of this disease. for management of Hepatitis B for fear has been assigned to handle this highly of resistance. prevalent disease. Prevention of transmission. Since 2002, efforts by the Ministry of Health to reduce Civil society should provide funding >> Limited donor support for Hepatitis B hepatitis B infection in the country are for training/retraining health activities in the affected regions. being addressed although at a slow pace workers to enable them to improve >> Health facilities and health workers in the following ways: in case management. have not been adequately prepared for case management. A comprehensive >> Vaccination of children with pentavalent LL Sources policy for management of Hepatitis B vaccine that protects children against virus has yet to be approved. hepatitis B has been introduced in all http://www.monitor.co.ug/ the health facilities. SpecialReports/Hepatitis-B- >> The Ministry of Health, NGOs and slowly-eating-up-West-Nile/- community-based organisations >> The Ministry of Health has procured /688342/1947904/-/69kkuuz/-/index. should be supported to carry out vaccine for more at-risk populations, html capacity assessment and plan especially health workers. accordingly. >> Information, education and http://www.researchgate.net/ communication materials have been publication/6768126_Hepatitis_B_ Awareness-raising, partnerships developed by the health education infection_among_health_workers_in_ and resource mobilisation. A national department, but they are inadequate Uganda_evidence_of_the_need_for_ task force for Hepatitis B has not been in number and not translated into health_worker_protection National established, yet this is very important local languages. coordination in steering awareness campaigns at the >> The Ministry of Health is encouraging national, regional and district levels. The http://ugandaharmreduction.wordpress. health workers to use universal people who commonly serve as resources com/2014/01/15/mps-quiz-minister-on- precautions in patient management. for raising awareness about issues in hepatitis-b-prevalence/ communities – health workers, politicians, >> Phased out re-use of syringes by and cultural and religious leaders – introducing auto-disabling syringes http://vaccinenewsdaily.com/ themselves have very little factual in all levels of care in public and africa/321496-hepatitis-b-outbreak- information on viral hepatitis. National private facilities. continues-in-uganda/ booklets developed for health education >> National medical stores are to take have not been translated into local the lead in procuring reagents languages for information dissemination. for hepatitis screening. No clear partnership exists from national to grassroot levels, and integration However this has not fully addressed of Hepatitis B activities at various the challenges of patients who are exposed levels is still poor in regard to resource and those with active disease as most mobilisation and awareness‑raising. facilities cannot do a baseline investigation for decision-making regarding initiation There is a need for collaboration of treatment. No specific standard at the international level and for engaging treatment guideline has been developed government to continue to provide for case management. leadership to address this problem. Chapter Region 4: African

60 Global Community Hepatitis Policy Report Uganda

Cancer and AIDS Relief Organization (CARO)*

Community-based organisation for infected and affected people with hepatitis B infection (direct service provider) Kampala, Uganda

SURVEY HIGHLIGHTS

The Government of Uganda did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore the Cancer and AIDS Relief Organization could not comment on government information for this report.

The organisation provided the following The existing evidence about hepatitis B in Other stakeholders’ responsibilities: general statement regarding key hepatitis Kasese District is based on data collected policy issues in Uganda: by the Cancer and AIDS Relief Organisation >> The community should promote from March 2011 to December 2013: sensitisation programmes by Awareness raising, partnerships and distributing information, education resource mobilisation. In Uganda, most >> Have tested 1,951 people for Hepatitis and communication materials people are ignorant about viral hepatitis B surface Antigen (HBsAg); out of for information dissemination. due to lack of information, myths and these, 1,705 tested negative and 242 >> Civil society organisations shall misconceptions associating it with tested HBsAg positive. Among those collaborate with the government poisoning, no partners in place to avert who tested positive, only 78 people in mobilisation and service delivery. vice. High costs limit service delivery due could afford to raise funds for hepatitis to mass poverty across the country. B profile monitoring tests which >> At the national level, the government determine initiation of treatment. shall support hepatitis B activities by There is a need to create awareness about Out of those clients who tested developing implementation policies/ hepatitis B, advocate for the formulation Hepatitis B envelope Antigen (HBeAg) guidelines and allocating resources of effective guidelines and policies positive and or with abnormal liver while advocating and providing to address hepatitis B issues, urgent function tests, 42 are on treatment technical support on hepatitis B at mobilisation of partners and funding for hepatitis B viral infection, whereas all levels and integrating it into existing opportunities to support hepatitis B those who tested HBeAg-negative are health systems. service delivery to communities. being monitored. >> The international community shall provide >> Have vaccinated 835 clients against logistics to support service delivery. In bringing about these changes, the hepatitis B viral infection out government will be responsible for: of 1,705 clients. Screening, care and treatment. In Uganda, >> Developing friendly policies and >> Have treated nine patients with chronic chronic hepatitis B infection, defined as measures regarding hepatitis B. hepatitis B viral infection persistence of hepatitis B surface antigen for more than six months, has been >> Collecting baseline data on the >> Have provided hospice care to 75 demonstrated in 10% of the population prevalence of hepatitis B to influence patients with severe pain controlled but with a varying distribution due to the World Health Organization on oral morphine; out of these, four limited knowledge and data issues about to prioritise and integrate its patients had cancer and HIV, 56 had hepatitis B virus in regions in the country management into the health system. cancer only and 15 other causes. (ATIC newsletter, volume 6, issue 6, Hepatocellular carcinoma and liver >> Building the capacity of health care November 2009). cirrhosis were leading with 29 patients. providers and other stakeholders Thirty-three patients out of 75 died. in the management of hepatitis B. Hepatitis B screening services are not sufficiently accessible to most-at-risk >> Mobilising and allocating funds Prevention of transmission. There populations, which include all children, to combat hepatitis B. is a need to strengthen advocacy and sexually active adults and adolescents, partnerships for equitable access to quality discordant couples, people with HIV, Other stakeholders’ responsibilities: hepatitis B information about screening, diabetic patients, health care providers, which is the entry to prevention and other house contacts with carriers and public >> The community should actively services, as well as effective treatment of safety workers with occupational be involved in disseminating infected persons with hepatitis B so as to risks, disabled persons, prisoners hepatitis B information. eliminate further transmission. and pregnant mothers. >> National-level task forces should

be formed to collaborate and The role of the government in bringing The proportions which are tested hepatitis 4: Chapter network with service providers about these changes includes accessing B positive fail to meet funds for carrying and the community, provide expertise affordable testing kits, drugs and vaccines out other profile tests to fit in the criterion and logistics to support service delivery to the clients and building the capacity for treatment initiation which impacts

and integrate hepatitis activities into of health care providers about viral on their immune responses. African Region the existing health care system. hepatitis B infection. >> The international community should provide expertise and logistics to support service delivery.

* World Hepatitis Alliance member.

61 Uganda

Cancer and AIDS Relief Organization continued

Despite the approval of treatment for Other stakeholders’ responsibilities: hepatitis B viral infection by FDA like the injectable alpha interferon’s, orally >> The community shall promote administered ART, the patients have sensitisation programmes by always failed to meet the cost of treatment distributing information, education leading to progression of cirrhosis and and communication materials for hepatocellular carcinoma due to high information dissemination. viral loads. >> Civil society organisations shall collaborate with the government There is need for addressing the gaps/ in mobilisation and service delivery. challenges that inhibit Hepatitis B prevention at the international, national, >> At the national level, the government district and community level through shall support hepatitis B activities by advocacy, collaboration, sensitisation developing implementation policies/ and capacity-building. guidelines and allocating resources while advocating and providing The role of the government in bringing technical support on hepatitis B about these changes includes accessing at all levels. affordable testing kits, drugs and >> The international community vaccines; building the capacity of health shall provide logistics to support care providers about viral hepatitis; service delivery. and creating awareness on hepatitis B viral infection. Chapter Region 4: African

62 Global Community Hepatitis Policy Report Uganda

Giving Hope Foundation (GHF)*

NGO – hepatitis patient group Kampala, Uganda www.givinghope-foundation.org

SURVEY HIGHLIGHTS

The Government of Uganda did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore Giving Hope Foundation could not comment on government information for this report.

The organisation provided the following There have been inquiries and calls In 2014, we have seen increased interest general statement regarding key hepatitis from the parliament and other security around viral hepatitis in Uganda. policy issues in Uganda: organisations for the Ministry of Health The President of Uganda, during the to make a statement and combat the National Resistance Movement Day Giving Hope Foundation (GHF) growing cases of hepatitis in Uganda that on 26 January, made special mention is an indigenous not-for-profit have not been sufficiently attended to. of the need to raise awareness regarding nongovernmental organisation based this preventable illness. in Kampala, Uganda. GHF aims at restoring The biggest challenge for civil society hope among vulnerable children and organisations involved in hepatitis is that The Ministry of Health together with other communities that have been affected there has been little involvement from stakeholders is planning to hold a series by poverty, abuse, violence, disease the Ministry of Health, and we have found of events across the country to raise and other natural calamities. it hard to carry out some national activities awareness; screen and set up support that require its endorsement. The Ministry for hepatitis patients; and commemorate To mark World Hepatitis Day in 2011, of Health has cited lack of personnel World Hepatitis Day on July 28, 2014. Minister of State for Health – General and resources for its lack of interest. There is a need to integrate hepatitis Duties Hon. Dr. Richard Nduhuura made But because of continued outreach and activities with other similar government a communication to commemorate World advocacy, there has been growing interest efforts like HIV/AIDS, tuberculosis and Hepatitis Day. The minister committed and involvement from the Ministry malaria programmes. to health promotion and education, of Health since late 2013. routine immunisation, and vaccination Donor agencies like the World Health of health workers and medical students, Government has a role in supporting Organization, Clinton Health Initiative, Scaling up of sanitation and provision the work and efforts of civil society UNICEF, USAID and foreign embassies need of safe water practices, early screening, organisations because we actually to come on board to support the efforts infection prevention and control of health carry out activities that are meant of civil society organisations in raising care waste management and control of all to be performed by the government. awareness, vaccinations, treatment and non‑communicable diseases. Government also needs to be more open support for hepatitis patients in Uganda. and reduce the bureaucratic process With continued advocacy, 2014 is promising An awareness walk was held through of acquiring information and access to be a breakthrough year with regard Kampala city to commemorate the day to key personnel. to hepatitis in Uganda. and many Ugandans including health practitioners joined the cause. Since civil society organisations work to support the efforts of government In 2012, following a series of planning in Uganda, their roles include: meetings for World Hepatitis Day, there was an outbreak of the Ebola >> Playing positive roles as strengthening haemorrhagic fever (Sudan ebolavirus) the voices of the vulnerable and in Kibaale District (midwestern Uganda). enhancing their participation in The Ministry of Health confirmed this development processes. outbreak on 28 July 2012 following weeks >> Representing and actively advocating of speculation about the cause of a strange for the interest of their members disease that had many people fleeing including hepatitis advocacy and their homes. Because of this outbreak, the support for patients among others. Ministry of Health turned its attention and focused all of its resources to this cause; >> Influencing political agenda-setting consequently, World Hepatitis Day was not and putting forward those social needs celebrated in 2012. that represent the general demands 4: Chapter of the population like including In 2013, there was another outbreak in communicable diseases like viral July which forced the Ministry of Health to hepatitis on the national agenda. allocate resources again to the emergency. African Region The national celebration was rescheduled for a later date, but did not take place due to insecurity in the capital city.

* World Hepatitis Alliance member.

63 Uganda

The National Organization for People Living with Hepatitis B (NOPLHB)*

NGO – hepatitis patient group Kampala, Uganda www.freetocharities.org.uk/noplhb/

SURVEY HIGHLIGHTS

The Government of Uganda did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore the National Organization for People Living with Hepatitis B could not comment on government information for this report.

The organisation provided the following The Government should also extend There is a need to conduct health general statement regarding key hepatitis the partnerships to include HIV and economic studies to encourage support policy issues in Uganda: antenatal initiatives. Hepatitis can be for diagnosis, prevention and treatment easily combined with HIV initiatives as this for viral hepatitis cases. Mothers should Awareness-raising, partnerships and would save infrastructure costs and also also be sensitised about the importance resource mobilisation. Currently the would ensure easier implementation of of immunisation programmes. awareness of the general public about policies. The Ministry of Health should hepatitis is very poor. Even among health review HMIS to include hepatitis for proper The Government should design proper care workers, the specialists seem to data collection. guidelines to address diagnosis and be better informed than the general treatment challenges and provide physicians and other ancillary workers. Screening, care and treatment. Lack of affordable sources of diagnostics. Furthermore there is a lot of stigma and awareness, clear guidelines and referral This would reduce cost of diagnosis misconception attached to viral hepatitis system for testing, the diagnosis rate of and in turn increase the diagnosis rate. among the general public. Policy-makers hepatitis B and hepatitis C infections are are aware of the issues but seem to be very low. Hence the majority of cases tied down due to other priorities and lack present at a late stage, sometimes with of funding. There is therefore a need for complications. The high cost of hepatitis public awareness campaigns through the B and hepatitis C diagnosis is another use of traditional communication channels factor contributing to lack of diagnosis. spearheaded by the Government. Generally 30% of hepatitis B cases and 45% to 70% of hepatitis C cases are eligible The Ministry of Health should start for treatment. However, 85% to 90% of awareness programmes for health care hepatitis B cases receive treatment while workers through workshops and health only 1% to 5% of hepatitis C cases get economic studies to inform policy makers treated. This disparity is mainly due to the that acting on hepatitis can save the unaffordability of hepatitis C treatment. economy more than Government would Treatment for viral hepatitis is generally spend. Collaboration exists among the out-of-pocket. No government support National Organization for People Living or private insurance for treating viral with Hepatitis B, Uganda Gastroenterology hepatitis exists. The Ugandan government Society and Giving Hope Foundation, and introduced HBsAg vaccine in the extended all are working towards the development of programme of immunisation for infants awareness and policies. The Government in 2002. However, this programme does should leverage existing partnerships. not cover the vaccination of adults and at-risk population. Mothers are also still reluctant to have their babies immunized. Chapter Region 4: African

* World Hepatitis Alliance member.

64 Region of the Americas 5

Global Community Hepatitis Policy Report

5 Region of the Americas

1 Argentina • Fundación HCV Sin Fronteras • Hepatitis Rosario

2 Canada • Action Hepatitis Canada/Action Hépatites Canada • AIDS Kootenay Outreach Support Society (ANKORS) • Hep C Support Group

3 Mexico 2 • Fundación Mexicana para la Salud Hepática

4 United States of America • Hep Free Hawaii 4 • Hepatitis B Foundation • Hep C Connection • San Francisco Hepatitis C Task Force

3 This chapter presents the region of the Americas findings from the World Hepatitis Alliance’s 2014 civil society survey in two sections.

The first section provides an overview of respondents. The second section describes the extent to which respondents agreed or disagreed with what their governments reported about hepatitis policies and programmes for the 2013 World Health Organization (WHO) Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. 1 It also notes the issues associated with the greatest amount of agreement and disagreement.

5.1. Respondents

Ten organisations from four countries in the region of the Americas responded to the World Hepatitis Alliance’s 2014 civil society survey. The governments of all of those countries provided information for the 2013 WHO global policy report, and thus all respondents were able to comment on the accuracy of their governments’ responses. Additional information about respondents is presented in Table 5.1.

Table 5.1. Region of the Americas respondents to the World Hepatitis Alliance’s 2014 civil society survey (N=10)

Type of respondent (#) Chapter 5: Chapter

Country Region of the Americas Civil society survey respondents (#) hepatitis – NGO patient group NGO – direct service provider NGO – other society Medical Private foundation Other

Argentina 2 1 1

Canada 3 1 1 1

Mexico 1 1

United States of America 4 1 3

67 Region of the Americas continued

Figure 5.1. Types of organisations submitting survey responses, FigureFigure 5.2 5.2. Responses received by income group,a region of the Americas (N=10) region of the Americas (N=10) Figure 5.1 10% Other 30% Upper-middle- 30% income 10% NGO: hepaiis Private paient group foundaion Types of organisaions Responses submiing survey received by a responses, income group, region of the region of the Americas Americas (N=10) (N=10) 70% 10% High-income NGO: direct 40% service provider NGO: other

a Source for income group classifications: World Bank 2013 data (http://data.worldbank.org/about/country-and-lending-groups).

Thirty percent of respondents identified themselves as hepatitis The following survey items were most commonly identified patient groups, and another 10% identified themselves as as points on which civil society respondents in the region nongovernmental direct service providers (Figure 5.1). of the Americas agreed with their governments’ responses: item 3.3, regarding disease registration and reporting, Eighty percent of respondents were either voting or non-voting and item 4.1, regarding the existence of a national hepatitis A members of the World Hepatitis Alliance at the time they vaccination policy. Further details are presented in Table 5.2. submitted their surveys (data not shown). The following survey items were most commonly identified Seventy percent of respondents were based in high-income as points on which civil society respondents in the region of countries and the remainder were based in upper-middle-income the Americas disagreed with their governments’ responses: countries (Figure 5.2). item 1.2, regarding the existence of a designated governmental unit/department responsible for viral hepatitis-related activities and the number of government staff working on hepatitis-related activities; item 1.3, regarding whether the government has a 5.2. Highlights relating to civil society agreement viral hepatitis prevention and control programme that includes or disagreement with what governments reported activities targeting specific populations; item 2.1, regarding World Hepatitis Day activities and viral hepatitis awareness campaigns; The civil society survey contained 25 items based on the item 2.2, regarding government collaboration with civil society information that governments provided for the 2013 WHO global groups; and item 4.2, regarding the goal of eliminating hepatitis B. policy report. For each item, civil society stakeholders were asked Further details are presented in Table 5.3. to consider the government response to one or more questions about national hepatitis policies and programmes, and to select one of the following three statements: To our knowledge, this information is accurate; To our knowledge, this information is not accurate; or We take no position regarding this statement.

Detailed findings for all civil society survey items are presented in Annex C. In sum, half of all civil society respondents thought that the information from their governments was accurate for 19 or more of the 25 items. Regarding the proportions of respondents who marked items as “not accurate,” more than half thought that the information from their governments was not accurate for at least six items. Region of the Americas the Chapter of 5: Region

68 Global Community Hepatitis Policy Report

Table 5.2. Survey items eliciting the highest levels of agreement from civil society respondents, region of the Americas (N=10)

Are liver cancer cases registered nationally?

3.3 Are cases of HIV/hepatitis co-infection registered nationally? 9 (90.0%)

How often are hepatitis disease reports published?

Is there a national hepatitis A vaccination policy? 4.1 9 (90.0%) If yes, what groups does the policy address?

Table 5.3. Survey items eliciting the highest levels of disagreement from civil society respondents, region of the Americas (N=10)

Is there a designated governmental unit/department responsible only for coordinating and/or carrying out viral hepatitis-related activities? If yes, what is its name? 1.2 4 (40.0%) How many people work full-time (or how many full-time equivalent staff) on hepatitis-related activities in all government agencies/bodies?

Does your government have a viral hepatitis prevention and 1.3 control programme that includes activities targeting specific 3 (30.0%) populations? If yes, please indicate which populations.

Did your government hold events for World Hepatitis Day 2012?

2.1 Has your government funded any public viral hepatitis awareness 3 (30.0%) campaigns since January 2011, other than World Hepatitis Day?

Does your government collaborate with any civil society group within your country (such as patient groups or national or local 2.2 nongovernmental organisations) to develop and implement 3 (30.0%) its viral hepatitis prevention and control programme? If yes, please name major partners.

Has your government established the goal of eliminating 5: Chapter 4.2 5 (50.0%) hepatitis B? If yes, in what timeframe? Region of the Americas

69 Argentina

Fundación HCV Sin Fronteras*

NGO – hepatitis patient group Pinamar, Argentina www.hepatitisc2000.com.ar

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Argentina reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 76.0% thought to not be accurate for 16.0% the government information for 8.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 3.1, 3.3, 3.4, 4.1, 4.3, 2.2, 4.2, 4.7 and 5.1. 3.2 and 3.5. 4.4, 4.5, 4.6, 4.8, 4.9, 4.10, 5.2, 5.3, 5.4 and 5.5.

Survey comments from Fundación HCV Sin Fronteras:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is a written national strategy or plan that Only hepatitis C, and prevention information this information is focuses exclusively on the prevention and control of is scarce. accurate. viral hepatitis. It includes components for raising awareness, surveillance, vaccination, prevention in general, prevention of transmission in health-care settings, treatment and care, and coinfection with HIV.

2.1 The government held events for World Hepatitis July 28, 2012, the government participates in Day 2012 and has funded other viral hepatitis public the first celebration. In 2013 made a little action awareness campaigns since January 2011 (Annex A). in their offices, as it plans for this year 2014.

3.3 Liver cancer cases and cases with HIV/hepatitis The amount of information received is very low. coinfection are registered nationally. The government publishes hepatitis disease reports annually.

4.5 There is a specific national strategy and/ This national strategy is not always respected or policy/guidelines for preventing hepatitis B around the country. and hepatitis C infection in health-care settings. Health-care workers are vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood.

4.6 There is a national policy on injection safety This national strategy is not always respected in health-care settings, which recommends single- around the country. use syringes for therapeutic injections. Single-use or auto-disable syringes, needles and cannulas are always available in all health-care facilities.

5.2 The government has national policies relating These policies are still insufficient. to screening and referral to care for hepatitis B and hepatitis C. Region of the Americas the Chapter of 5: Region

* World Hepatitis Alliance member. 70 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.4 Publicly funded treatment is available for Is accurate, just do not know how much money this information is hepatitis B and hepatitis C. The following groups the government intended for treatments. accurate. are eligible: all people without social coverage. The government spends 40 million pesos (US$ 8.8 million) annually on publicly funded treatment for hepatitis B and hepatitis C.

5.5 The following drugs for treating hepatitis B Since 2014 also included telaprevir are on the national essential medicines list or and boceprevir for hepatitis C. subsidised by the government: pegylated interferon, lamivudine, entecavir and tenofovir. The following drugs for treating hepatitis C are included on the national essential medicines list or subsidised by the government: pegylated interferon and ribavirin.

××To our knowledge, 2.2 The government collaborates with the Fundación HCV Sin Fronteras participates on this information is following in-country civil society group to develop the honorary Advisory Committee of the National not accurate. and implement its viral hepatitis prevention and Hepatitis Programme, and is working with the control programme: Fundación HCV Sin Fronteras. Ministry of Health.

4.2 The government has not established the goal The government introduced free universal of eliminating hepatitis B. hepatitis B vaccination with success, as well as advertising campaigns for vaccination.

5.1 Health professionals obtain the skills and There are also guidelines on hepatitis B competencies required to effectively care for and hepatitis C conducted in 2012. people with viral hepatitis through on the-job training and postgraduate training. There are national clinical guidelines for the management of viral hepatitis, which include recommendations for cases with HIV coinfection. There are national clinical guidelines for the management of HIV, which include recommendations for coinfection with viral hepatitis. Chapter 5: Chapter

Statement from Fundación HCV Health professionals do not fully comply The government should do more Sin Fronteras regarding key hepatitis with mandatory reporting of cases of biosecurity education campaigns in the Region of the Americas policy issues in Argentina: hepatitis B and hepatitis C. The information health centres. Missing policies aimed reported cases of hepatitis is poor. at at-risk or vulnerable groups. The government does not conduct prevention The difficulties are bureaucratic, and information campaigns for hepatitis C, centralising information is also missing It is serious that our government does not works with his participation in campaigns cases are diagnosed in the field of private have a policy of screening for hepatitis B by civil society or medical associations. health. The government is working and hepatitis C. A national and international No hits on hepatitis C in diffusion media. to improve this information but in level should promote detection of hepatitis The government should carry out prevention our opinion the work is very slow. and join forces to gather resources to make campaigns, information, and especially tests in at-risk populations. hepatitis C screening. Missing strategies for the prevention of transmission of hepatitis C.

71 Argentina

Hepatitis Rosario*

Support group for chronic viral hepatitis patients and their families and friends Rosario, Argentina www.hepatitis-c.com.ar

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Argentina reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 56.0% thought to not be accurate for 36.0% the government information for 8.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 3.3, 4.1, 4.2, 4.3, 4.5, 4.6, 4.8, 4.9, 1.3, 2.1, 2.2, 3.1, 3.2, 3.4, 3.5, 4.4 and 4.7. 1.2 and 5.4. 4.10, 5.1, 5.2, 5.3 and 5.5.

Survey comments from Hepatitis Rosario:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.3 Liver cancer cases and cases with HIV/ Public hospitals give information. this information is hepatitis coinfection are registered nationally. accurate. The government publishes hepatitis disease reports annually.

4.3 Nationally, 94.4% of newborn infants Yes, we do well with hepatitis A and hepatitis B in a given recent year received the first dose until age 11. After this is the problem. of hepatitis B vaccine within 24 hours of birth and 92.5% of one-year-olds (ages 12–23 months) in a given recent year received three doses of hepatitis B vaccine.

4.5 There is a specific national strategy and/ Health workers are vaccinated. or policy/guidelines for preventing hepatitis B and hepatitis C infection in health-care settings. Health-care workers are vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood.

4.8 There is a national infection control policy Yes, in blood banks they screen for hepatitis. for blood banks. All donated blood units (including family donations) and blood products nationwide are screened for hepatitis B and hepatitis C.

4.9 There is no national policy relating to the Nor do they even know who injects drugs. prevention of viral hepatitis among people who inject drugs. Region of the Americas the Chapter of 5: Region

* World Hepatitis Alliance member.

72 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.2 The government has national policies relating Yes, there is a national programme but it this information is to screening and referral to care for hepatitis B is bad, incomplete, bureaucratic to the point accurate. and hepatitis C. of exaggeration and therefore does not serve to detect the ill. It is a disgrace. Those who are ill do not know. The government does not pay much attention to this. It does very little. Their bureaucracy makes it difficult for them to tell the public that they do anything.

5.3 People testing for both hepatitis B and hepatitis C People are free to be tested. But they do not know register by name; the names are kept confidential they should do it. As I’ve said, there is no good within the system. Hepatitis B and hepatitis C tests health policy for hepatitis. are free of charge for all individuals and are not compulsory for members of any specific group.

5.5 The following drugs for treating hepatitis B Yes, but we remind you that only very few people are on the national essential medicines list or who have hepatitis are detected. In the province subsidised by the government: pegylated interferon, of Buenos Aires, which has 16 million inhabitants, lamivudine, entecavir and tenofovir. The following there are 66 cases of ongoing hepatitis drugs for treating hepatitis C are included on the treatment. A shame. national essential medicines list or subsidised by the government: pegylated interferon and ribavirin.

××To our knowledge, 1.3 The government has a viral hepatitis prevention The government controls HIV very well. this information is and control programme that includes activities Very little importance is given to hepatitis. not accurate. targeting the following specific populations: That is our fight. To report what the government health-care workers (including health-care waste does not report. They are complicit in the silence handlers), people living with HIV and the uninsured. of the evolution of the disease. There is not good public health policy.

2.1 The government held events for World Hepatitis There are only 12 Argentinian groups. It is very Day 2012 and has funded other viral hepatitis difficult to reach the government and get them public awareness campaigns since January 2011 to listen to us. The 12 groups manage the (Annex A). campaigns. The government only does a small amount of vaccination against hepatitis B. There s a lack of education, prevention, information and, logically, treatments. Chapter 5: Chapter

2.2 The government collaborates with the Fundación HCV Sin Fronteras is like a mother following in-country civil society group to develop of the Argentinian groups. The government Region of the Americas and implement its viral hepatitis prevention and collaborates too little. People develop badly control programme: Fundación HCV Sin Fronteras. and do not know they have hepatitis.

73 Argentina

Hepatitis Rosario continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 3.1 There is routine surveillance for viral hepatitis. There is vaccination for hepatitis A and B, this information is There is a national surveillance system for the not massive, but pretty good. There is no not accurate. following types of acute hepatitis: A, B, C, D and E, information about the existence of hepatitis and for the following types of chronic hepatitis: C. When a patient arrives at a public hospital, B, C and D. it normally follows. This is the problem. When they arrive, what happens is people do not know they have this silent disease and will develop in darkness/ignorance.

3.2 There are standard case definitions for Confirmed statistics do not exist anywhere in hepatitis. Deaths, including from hepatitis, Argentina. It is assumed that 1,000,000 people are reported to a central registry. Information are infected with hepatitis B and hepatitis C, was not provided regarding the percentage of but this is data taken from the blood banks. hepatitis cases reported as “undifferentiated” Therefore it is not accurate. or “unknown” hepatitis.

3.4 Hepatitis outbreaks are required to be reported I am overwhelmed by the government’s to the government and are further investigated. disinterest in keeping statistics. There is adequate laboratory capacity nationally to support investigation of viral hepatitis outbreaks and other surveillance activities.

3.5 There is a national public health research All newborns are vaccinated against hepatitis B agenda for viral hepatitis. Viral hepatitis and again when they turn 11 years old. It seems serosurveys are conducted regularly; the target the rest does not interest them. We are the groups population is children. Information was not that report this. provided regarding when the last serosurvey was carried out.

4.4 There is a national policy specifically targeting No, we are fighting to get statistics. mother-to-child transmission of hepatitis B (Annex B).

4.7 Official government estimates of the number All disposable material is used. and percentage of unnecessary injections administered annually in health-care settings are not known. Region of the Americas the Chapter of 5: Region

74 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no position 1.2 There is a designated governmental unit/ National Hepatitis, HIV and STI Programme regarding this department responsible solely for coordinating exists. It works with lots of bureaucracy statement and/or carrying out viral hepatitis-related and does not reach the majority of people. activities. This programme is part of the AIDS and STD Directorate. Information was not provided regarding how many staff members this office has. There are eight full-time equivalent staff members who work on hepatitis-related activities in all government agencies/bodies.

5.4 Publicly funded treatment is available for I do not know what they do. We were never told. hepatitis B and hepatitis C. The following groups are eligible: all people without social coverage. The government spends 40 million pesos (US$ 8.8 million) annually on publicly funded treatment for hepatitis B and hepatitis C.

Statement from Hepatitis Rosario The government has all responsibility and The evidence shows that people in general regarding key hepatitis policy issues should produce statistics for all of Argentina. will only learn about chronic viral hepatitis in Argentina: In order to vaccinate, prevent, screen and give thanks to the work of helping organisations. treatments for all. And not thanks to information from The main problem is ignorance. They do governments. Our work is not paid for by not do timely diagnosis for then subsequent Our role is to collaborate. But in reality if we anyone. And our main collaborators are timely treatment. exist, it is because governments do not fulfil doctors and hepatologists. their functions globally. Health policy must be changed so that people have access to prevention, screening and treatment. Chapter 5: Chapter Region of the Americas

75 Canada

Action Hepatitis Canada/Action Hépatites Canada

NGO – national coalition of hepatitis B and hepatitis C organisations Victoria, British Columbia, Canada http://www.actionhepatitiscanada.ca

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Canada reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 56.0% thought to not be accurate for 44.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.3, 3.1, 3.3, 3.4, 3.5, 4.1, 4.4, 4.6, 4.7, 1.1, 1.2, 2.1, 2.2, 3.2, 4.2, 4.3, 4.5, 4.9, 5.4 4.8, 4.10, 5.1, 5.2 and 5.3. and 5.5.

Survey comments from Action Hepatitis Canada/Action Hépatites Canada:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.3 The government has a viral hepatitis prevention However, the level at which prevention and control this information is and control programme that includes activities programmes are delivered is far from adequate accurate. targeting the following specific populations: and there lacks coordination between federal and health-care workers (including health-care waste provincial governments for whom this is a shared handlers), people who inject drugs, migrants, responsibility. The federal government shows prisoners, the homeless, people living with HIV, little leadership and in fact hampers efforts by low-income populations, indigenous people, some provinces especially in the areas of harm ethnocultural populations and youth. reduction. No consistency from one institution to another either federally or provincially. No needle exchanges in prisons. Condoms, bleach and other harm measures not always readily available as they should be. It can be difficult for prisoners to access a doctor or a nurse. Consequently, HIV, hepatitis B and hepatitis C infection rates remain quite high in the prison system despite being preventable infections.

3.4 Hepatitis outbreaks are reported to local Hepatitis B is a reportable disease as is public health authorities and are further hepatitis C and reported to Health Canada. investigated only at the local level. There is Reporting parameters should be expanded; adequate laboratory capacity nationally to support the details required are currently limited so investigation of viral hepatitis outbreaks and other important indicators such as genotype and surveillance activities. access to treatment are not consistently monitored. There should be systematic HIV, hepatitis B and hepatitis C testing at annual check-ups particularly for those at risk either because of lifestyle or age group (baby boomers) who may have been infected and do not know.

3.5 There is a national public health research Insufficient funding both federally and agenda for viral hepatitis. Viral hepatitis provincially/territorially (for non-pharmaceutical serosurveys are conducted regularly; the target research topics and areas). Greater overall population is the general population. The last coordination needed nationally. Lack of serosurvey was carried out from 2009 to 2011. transparency as to how federal funds are used. More psycho-social focused research funding needed, including community-based research. Need for a coordinated national knowledge dissemination and sharing mechanism with sufficient and reliable financial support from provincial, territorial and federal governments. Region of the Americas the Chapter of 5: Region

76 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.4 There is a national policy specifically targeting The Public Health Agency of Canada (PHAC) this information is mother-to-child transmission of hepatitis B. recommends infants born to hepatitis B-positive accurate. mothers receive the appropriate dose of hepatitis B vaccine within 12 hours of birth and one at one month of age. The third needle is given at six months of age. Immune globulin is also given at birth. PHAC recommends that all pregnant women be routinely screened for hepatitis B. Nothing noted about counselling. PHAC does not recommend pregnant women be routinely screened for hepatitis C.

5.1 Health professionals obtain the skills and Hepatitis B and hepatitis C training and competencies required to effectively care for continuing education are available to various people with viral hepatitis through schools levels of healthcare providers in a variety of of health professionals (pre-service education), formats. Training needs to be mandatory for on-the-job training and post-graduate training. emergency room staff and nurses. More efforts There are national clinical guidelines for the are required to improve enrolment and uptake management of viral hepatitis, which include of knowledge. recommendations for cases with HIV coinfection.

××To our knowledge, 1.1 There is a written national strategy or plan The Public Health Agency of Canada (PHAC) this information is that focuses primarily on the prevention and did a national consultation in 2008 and released not accurate. control of viral hepatitis, and also integrates a report in 2009 in the form of a framework other diseases. It includes components for which was coined as a renewed public health raising awareness, surveillance, vaccination, response to address hepatitis C. prevention in general, prevention of transmission via injecting drug use, prevention of transmission (http://publications.gc.ca/collections/ in health-care settings, treatment and care, collection_2010/aspc-phac/HP40-44-2009- and coinfection with HIV. eng.pdf) PHAC often refers to this framework as a national strategy but in effect it is not a national strategy which PHAC representatives have publicly acknowledged. Canada has yet to have a written national strategy which the medical and civil society communities have been requesting Health Canada to create. Provincial funding has been relatively stable and supportive in some instances, but in others has been inadequate or non-existent. Federal funding has been inconsistent, and delays in renewing funding agreements has been an ongoing problem putting at risk the very existence of many organisations. PHAC has not lived up to 5: Chapter its ongoing funding promise made by the Minister of Health in 2008. Resources are still scarce and difficult to access. Strong resistance at the federal level to the concept of harm reduction. Region of the Americas

77 Canada

Action Hepatitis Canada/Action Hépatites Canada continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 1.2 There is a designated governmental unit/ At the federal government level, there is not this information is department responsible solely for coordinating a single designated unit solely responsible not accurate. and/or carrying out viral hepatitis-related for coordinating and carrying out viral hepatitis activities. The name of this office was not provided. activities. It is an integrated approach to It is not known how many people work full-time sexually transmitted and blood-borne infections, on hepatitis-related activities in all government and many departments are involved. The Centre agencies/bodies. for Communicable Diseases and Infection Control plays a coordinating role. Treatment and care is delivered by the provincial governments who have responsibility for health care. It is presently a patchwork of inconsistent services from province to province.

2.1 The government held events for World Hepatitis World Hepatitis Day events held by civil society Day 2012 but has not funded other viral hepatitis have been supported by the Public Health Agency public awareness campaigns since January 2011. of Canada since 2009 up until and including 2013. See http://whdcanada.org

2.2 The government collaborates with the This list should be more extensive as the Public following in-country civil society groups to develop Health Agency of Canada (PHAC) has funded and implement its viral hepatitis prevention many more civil society groups and has renewed and control programme: Canadian Society for the funding for the next three years. No new International Health, Canadian AIDS treatment groups however may be funded until PHAC Information Exchange and University of British completes its reforms. Columbia Hepatitis Services.

3.2 There are standard case definitions for National acute and chronic definitions are used, hepatitis. Deaths, including from hepatitis, are but a case definition for resolved infection reported to a central registry. Of hepatitis cases, is required. 0%–10.0% is reported as “undifferentiated” or “unclassified” hepatitis.

4.2 The government has established the goal of Hepatitis B vaccine programmes are supposed eliminating hepatitis B but information was not to be publicly funded across Canada which provided about a specific timeframe for this goal. is not the case in all provinces as some Canadians must pay and others do not have to. Greater consistency is needed both in terms of availability for all children and public coverage. Region of the Americas the Chapter of 5: Region

78 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 4.3 Information was not provided on the Publicly-funded hepatitis B vaccination this information is percentage of newborn infants nationally in a given programmes are available in all provinces and not accurate. recent year who received the first dose of hepatitis territories. The age at which vaccinations are B vaccine within 24 hours of birth or the percentage offered varies from region to region. The Public of one-year-olds nationally (ages 12–23 months) Health Agency of Canada (PHAC) recommends in a given recent year who received three doses universal hepatitis B vaccination; schedule of hepatitis B vaccine. varies from region to region. PHAC recommends hepatitis B vaccination specifically for those at risk (e.g. health care workers, people who use drugs, newcomers to Canada). PHAC recommends pre-exposure prophylaxis for individuals at risk of hepatitis A infection or at risk of greater severity of hepatitis A infection. The combined hepatitis A/hepatitis B vaccine is recommended to children scheduled for hepatitis B vaccine who have an indication for hepatitis A virus and for groups at risk of either type of hepatitis.

4.5 There is a specific national strategy and/ Health-care settings and correctional or policy/guidelines for preventing hepatitis B facilities have up-to-date and enforced infection and hepatitis C infection in health-care settings. control policies. Personal services settings Health-care workers are vaccinated against (body art, beauty, acupuncturist facilities) hepatitis B prior to starting work that might put need to be regulated across the nation and them at risk of exposure to blood. control/enforcement measures put into place. In a few locations, the personal services settings industry is creating training and testing for practitioners, and some cities are working to develop more stringent control/enforcement measures as well as public education.

4.9 There is a national policy relating to This is an opportunity to treat, prevent and the prevention of viral hepatitis among people educate a very high-risk population in relation who inject drugs. to viral hepatitis and other infectious diseases, as well as drug treatment strategies including methadone. No consistency from one institution to another either federally or provincially. No needle exchanges in prisons. Condoms, bleach and other harm reduction measures not always readily available as they should be. It can be difficult for prisoners to access a doctor or a nurse. Consequently, HIV, hepatitis B and hepatitis C infection rates remain quite high in the prison

system despite being preventable infections. 5: Chapter

5.4 Publicly funded treatment is available for Hepatitis B treatment and hepatitis C treatment Region of the Americas hepatitis B and hepatitis C. All Canadian residents are generally available but not uniformly in all are eligible for this. The amount spent by the Canadian regions or in all correctional settings. government on such treatment for hepatitis B More specialists are needed and waiting time and hepatitis C is not known. needs to be reduced. Individuals perceived as at risk of re-infection need to be treated along with supports and services that help ensure preventing re-infection. Cost for treatment disparities need to be reduced or eliminated.

79 Canada

Action Hepatitis Canada/Action Hépatites Canada continued

Information reported by government (2012–2013) Civil society respondent comments (2014) ××To our knowledge, The following drugs for treating hepatitis B are on Drug approval process is good but more consistency this information is the national essential medicines list or subsidised in coverage and access among provinces would not accurate. by the government: interferon alpha, pegylated be desirable. Sometimes drugs can receive a fast interferon, lamivudine, adefovir dipivoxil, entecavir track review by Health Canada. In general, once and telbivudine. The following drugs for treating approved by Health Canada provinces can be very hepatitis C are on the national essential medicines slow to review them and approve them for their own list or subsidised by the government: pegylated formulary. Each province makes its own decisions, interferon, ribavirin, boceprevir and telaprevir. leading to inequities across Canada. Eligibility criteria established by provinces are not always based on medical recommendations and are usually more restrictive, creating access issues for some individuals who would benefit from treatment. One national drug plan would be desirable.

Statement from Action Hepatitis performance of the Canadian federal, which provides a snapshot of the burden Canada/Action Hépatites Canada provincial and territorial governments. of hepatitis B and hepatitis C and the regarding key hepatitis policy issues The following year, updates were made to the socio-economic costs in Canada. in Canada: report card. The report card can be consulted (The briefing note can be consulted here: at : http://www.actionhepatitiscanada.ca/ http://www.actionhepatitiscanada.ca/wp- Action Hepatitis Canada has been calling wp-content/uploads/2012/07/Hepatitis- content/uploads/2012/07/Briefing-Note- on Canadian federal, provincial and territorial Strategy-Report-Card.pdf. final-2.pdf.) Effective medicines and control governments to adopt measures that address strategies are available to dramatically the international and national viral hepatitis Monitoring of government responses reduce suffering and deaths caused by these epidemic from a public health perspective. to our initial national Six Asks indicated diseases and yet federal, provincial and More specifically, the Coalition urges the that there remained much to be achieved territorial governments have not put forth Canadian government to adopt a fully-funded as we approached the original 2012 deadline. concerted efforts to fight hepatitis B and coordinated national strategy for both hepatitis C by providing adequate funding hepatitis B and hepatitis C by 2012 that: In looking at the national situation just prior and national policy to ensure success. to the 2012 deadline , three priority areas were >> Promotes prevention of hepatitis B identified for which we asked that concrete There are many factors that contribute and C through expanded education, measures be implemented before the end to the burdens of hepatitis B and hepatitis C, immunisation and harm reduction of 2012. These priority areas are: and those living with and affected by hepatitis programmes all across Canada. B and hepatitis C not only suffer from the >> Increasing awareness and preventing disease but also stigmatisation, shame and >> Improves access to comprehensive care hepatitis B and hepatitis C infections anguish. The magnitude of the impact on and treatment programmes in all areas among at-risk populations. human lives and to society can be minimised of the country. and/or avoided at lower costs with the >> Improving access to health care >> Increases knowledge and innovation correct management strategies initiated and drug coverage. through interdisciplinary research and today. Healthy outcomes for individuals can surveillance to reduce the burden of >> Supporting communities and groups be achieved as well as solutions to the key hepatitis B and hepatitis C on Canadians. through stable funding for prevention, determinants through enhanced cross- education, care and support. sectorial collaborations, increased funding >> Creates awareness about risk factors, and prioritised spending. stigma and the need for testing among the general population and at-risk groups. While new, very effective drugs have been In a July 2012 letter, we asked our elected developed, they are not yet available to all >> Builds capacity through training government officials to provide leadership Canadians who desperately need them. In the and recruitment of qualified in addressing the issues and gaps identified United States, the Centers for Disease Control health professionals. in Action Hepatitis Canada’s briefing note and Prevention urges people born between and strengthen the delivery of hepatitis B >> Supports communities and community- 1945 and 1965 to be tested, noting that roughly and hepatitis C healthcare to reach the entire based groups in developing, delivering 75% of people with the disease are baby population, particularly the most vulnerable and evaluating peer-driven and boomers. Canada has no plans to follow the and difficult-to-reach. This leadership has yet focused initiatives. lead of the United States and urge all baby to be seen. At the 3rd Canadian Symposium boomers to be tested. The Public Health on Hepatitis C Virus held in Toronto February Agency of Canada is currently reviewing its As a way to obtain a snapshot of the state 7, 2014, the request to the federal government options, and a report is to be completed that of the nation with respect to these “Six Asks,” for a national strategy was once again made to “will help shape our future hep C screening the Coalition prepared a report card in the government of Canada’s representatives guidelines.” Canada should not drag its feet. July 2011 which identifies what is being by attending participants from both the Our baby boomers are no less at risk. successfully achieved as well as gaps that medical and civil society communities. Region of the Americas the Chapter of 5: Region must be addressed and uses this information Action Hepatitis Canada produced a to develop a grade reflecting the current “Briefing Note: Hepatitis B & Hepatitis C”

80 Global Community Hepatitis Policy Report Canada

AIDS Kootenay Outreach Support Society (ANKORS)*

NGO – direct service provider Nelson, British Columbia, Canada ankors.bc.ca

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Canada reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 96.0% thought to not be accurate for 4.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 3.4, 3.5, 4.1, 4.2, 1.2. 4.3, 4.4, 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

The AIDS Kootenay Outreach Support Society did not provide any comments about survey items. The respondent also did not provide a statement regarding key hepatitis policy issues in Canada. Chapter 5: Chapter Region of the Americas

* World Hepatitis Alliance member.

81 Canada

Hep C Support Group*

NGO – hepatitis patient group Robson, British Columbia, Canada

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Canada reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 56.0% thought to not be accurate for 36.0% the government information for 8.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 2.1, 2.2, 3.1, 3.3, 3.4, 4.3, 4.5, 4.7, 4.10, 1.2, 1.3, 3.2, 3.5, 4.1, 4.2, 4.4, 4.6 and 4.9. 4.8 and 5.5. 5.1, 5.2, 5.3 and 5.4.

The Hep C Support Group did not provide any comments about survey items.

Statement from the Hep C Support Evidence-based policy and data for Prevention of transmission. Local Group regarding key hepatitis policy action. All governments are not doing government should be involved and health issues in Canada: enough or paying for treatment for those workers need more training. who were infected through the blood National coordination. Very poorly set up. supply. We are left out in the cold, in hopes Screening, care and treatment. we soon all die off. Treatment options too I cannot find any evidence that they Awareness-raising, partnerships and expensive for most people who suffer, are doing anything. resource mobilisation. Not enough done as stigma has put them in a bad financial in this area. situation. Put more funding into action rather then statistics. Region of the Americas the Chapter of 5: Region

* World Hepatitis Alliance member.

82 Global Community Hepatitis Policy Report Mexico

Fundación Mexicana para la Salud Hepática*

Private foundation Mexico City, Mexico http://www.fundhepa.org.mx

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Mexico reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was --The respondent took no position on thought to be accurate for 24.0% the government information for 8.0% of items. of items. Survey points marked “accurate”: Survey points marked “take no position”: 3.1, 3.3, 3.4, 3.5, 4.1 and 4.6. 3.2 and 4.3. ××The government information was \\The respondent did not select an answer thought to not be accurate for 32.0% for 36.0% of items. of items. Survey points for which no answer Survey points marked “not accurate”: was selected: 1.1, 1.2, 1.3, 2.1, 2.2, 4.2, 4.4 and 4.7. 4.5, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from Fundación Mexicana para la Salud Hepática:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.1 There is routine surveillance for viral hepatitis. The Mexican government does not have specific this information is There is a national surveillance system for the programmes dedicated exclusively to the prevention accurate. following types of acute hepatitis: A, B, C and D, and control of viral hepatitis. The government does but not for any type of chronic hepatitis. vaccinate against Hepatitis B and screens blood in blood banks, but those measures are not part of comprehensive strategies.

3.3 Information was not provided on whether liver The Mexican health system cannot provide cancer cases are registered nationally. Cases with those as a whole. Their different institutions HIV/hepatitis coinfection are not registered (Instituto Mexicano del Seguro Social, Instituto nationally. The government publishes hepatitis de Seguridad y Servicios Sociales de los disease reports annually. Trabajadores del Estado, Secretaría de Salud, Seguro Popular) can provide separate data.

There is no specific report for hepatitis.

3.4 Hepatitis outbreaks are required to be reported The outbreaks reported area basically to the government and are further investigated. hepatitis A. There is a national network Information was not provided on whether there is of laboratories. adequate laboratory capacity nationally to support investigation of viral hepatitis outbreaks and other surveillance activities. Chapter 5: Chapter

4.1 Information was not provided on whether there Vaccination for Hepatitis A is not a public policy

is a national policy on hepatitis A vaccination. in Mexico. Region of the Americas

4.6 Information was not provided on whether There is a policy about injection safety and there is a national policy on injection safety biologics disposal for the whole health system. in health-care settings, or whether single-use or auto-disable syringes, needles and cannulas are always available in all health-care facilities.

* World Hepatitis Alliance member.

83 Mexico

Fundación Mexicana para la Salud Hepática continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 1.1 Information was not provided on whether there The Mexican Government does not have a written this information is is a written national strategy or plan that focuses national strategy or plan focused on any aspect not accurate. exclusively or primarily on the prevention and of viral hepatitis. control of viral hepatitis.

1.2 Information was not provided on whether there The Mexican Government does not have is a designated governmental unit/department a designated unit/department responsible responsible solely for coordinating and/or carrying solely for coordinating and/or carrying out out viral hepatitis-related activities, or how many viral hepatitis-related activities. people work full-time on hepatitis-related activities in all government agencies/bodies.

1.3 Information was not provided on whether The Mexican government does not have the government has a viral hepatitis prevention specific programmes dedicated exclusively and control programme that includes activities to the prevention and control of viral targeting specific populations. hepatitis. The government does vaccinate against Hepatitis B and screens blood in blood banks but those measures are not part of comprehensive strategies.

2.1 Information was not provided on whether In all World Hepatitis Day Events since 2011 the government held events for World Hepatitis the Government has not been present. Day 2012 or funded other viral hepatitis public awareness campaigns since January 2011.

2.2 Information was not provided on whether There is no formal collaboration with civil society; the government collaborates within country civil some sporadic activities at the state level. society groups to develop and implement its viral hepatitis prevention and control programme.

4.2 Information was not provided on whether the Hepatitis B vaccination has been in place since government has established the goal of eliminating 1998. In 2012 almost 18 million children were hepatitis B. vaccinated. Fundación Mexicana para la Salud Hepática was the main force behind the approval of the vaccine in 1998.

4.4 Information was not provided on whether There is no specific programme. there is a national policy that specifically targets mother-to-child transmission of hepatitis B. Region of the Americas the Chapter of 5: Region

84 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no position 3.2 There are standard case definitions for There is a classification but that category regarding this hepatitis. Deaths, including from hepatitis, is mixed with hepatic diseases. All kinds statement. are reported to a central registry. Of the hepatitis of hepatitis viruses are mixed together. cases, 10.2% are reported as “undifferentiated” or “unclassified” hepatitis.

\\No response 4.5 Information was not provided on whether there There are initiatives for general precautions but selected is a specific national strategy and/or not a specific programme dedicated to preventing policy/guidelines for preventing hepatitis B hepatitis in health-care settings. and hepatitis C infection in health-care settings, or whether health-care workers are vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood.

4.8 Information was not provided on whether there The government does vaccinate against is a national infection control policy for blood banks hepatitis B and screens blood for hepatitis and whether all donated blood units (including B and hepatitis C in blood banks, family donations) and blood products nationwide but those measures are not part of are screened for hepatitis B and hepatitis C. comprehensive strategies.

4.9 Information was not provided on whether There is no national policy regarding the issue. there is a national policy relating to the prevention of viral hepatitis among people who inject drugs.

4.10 Information was not provided on whether There are guidelines focused on hepatitis A. the government has guidelines that address how hepatitis A and hepatitis E can be prevented through food and water safety.

5.1 Information was not provided on how health Health professionals specialised during professionals obtain the skills and competencies their residence and attending to congresses. required to effectively care for people with viral There are guidelines for hepatitis C and HIV; hepatitis. Information was not provided on both include coinfection. whether there are national clinical guidelines for the management of viral hepatitis and for the management of HIV, and whether the latter 5: Chapter include recommendations for coinfection with viral hepatitis. Region of the Americas

5.3 Information was not provided on whether The tests are performed free only when you people testing for hepatitis B or hepatitis C register donate blood in blood banks (hepatitis B and by name, and whether hepatitis B or hepatitis C hepatitis C). No name is captured and there tests are free of charge for all individuals or is no compulsory testing for any group. compulsory for members of any specific group.

85 Mexico

Fundación Mexicana para la Salud Hepática continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

\\No response 5.4 Information was not provided on whether Hepatitis B is covered in Instituto Mexicano selected publicly funded treatment is available for del Seguro Social and Instituto de Seguridad hepatitis B or hepatitis C and, if so, who is eligible y Servicios Sociales de los Trabajadores del for this. Estado (50% of the population) with access to entecavir. Seguro popular (people without social security) does not cover hepatitis B.

Hepatitis C is covered in Instituto Mexicano del Seguro Social and Instituto de Seguridad y Servicios Sociales de los Trabajadores del Estado with access to pegylated interferon, no access to boceprevir. Telaprevir has not been launched in Mexico.

Seguro Popular formally included in 2012 hepatitis C as part of the coverage, but only one hospital is providing interferon treatment. Of course, no access to boceprevir or other new drugs.

Seguro Popular only covers people under age 50.

5.5 Information was not provided on whether any Hepatitis B is covered in Instituto Mexicano drug for treating hepatitis B and hepatitis C is on del Seguro Social and Instituto de Seguridad the national essential medicines list or subsidised y Servicios Sociales de los Trabajadores del by the government. Estado (50% of the population) with access to entecavir. Seguro popular (people without social security) does not cover hepatitis B.

Seguro Popular formally included in 2012 hepatitis C as part of the coverage, but only one hospital is providing interferon treatment. Of course, no access to boceprevir or other new drugs.

Seguro Popular only covers people under age 50.

Statement from Fundación Mexicana Hepatitis C in Mexico should be treated The role of civil society would be to para la Salud Hepática regarding key in a similar fashion. We should have a monitor the implementation of public hepatitis policy issues in Mexico: national programme and a council making policy and collaborate to raise awareness sure that the response against hepatitis among the general population. There is The Mexican health system works in iscoordinated among different institutions also a critical role to make sure patients silos – different parts do not communicate in Mexico. adhere to treatment to make sure that and do not coordinate. In the case of investment is not wasted. This could HIV/AIDS, there is a National Council The role of Government would be to create be done by support groups backed against AIDS that helps as a governance this programme and council, making sure by governments (federal and state) body to coordinate activities. In this that the decisions taken by this body are as well as pharmaceutical companies. council, civil society organisations mandatory. The Government should also Region of the Americas the Chapter of 5: Region have representation. provide high-level representatives for the discussions.

86 Global Community Hepatitis Policy Report United States

Hep Free Hawaii*

NGO – coalition Honolulu, Hawaii www.hepfreehawaii.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of the United States reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 76.0% thought to not be accurate for 24.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.2, 3.3, 3.5, 4.1, 3.1, 3.4, 4.9, 4.10, 5.2 and 5.3. 4.2, 4.3, 4.4, 4.5, 4.6, 4.7, 4.8, 5.1, 5.4 and 5.5.

Hep Free Hawaii did not provide any comments about survey items. The respondent also did not provide a statement regarding key hepatitis policy issues in the United States. Chapter 5: Chapter Region of the Americas

* World Hepatitis Alliance member.

87 United States

Hepatitis B Foundation*

Biomedical research and disease advocacy organisation Doylestown, Pennsylvania, United States www.hepb.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of the United States reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on the thought to be accurate for 80.0% thought to not be accurate for 8.0% government information for 12.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.2, 3.3, 3.5, 4.1, 4.3, 4.4, 3.1 and 4.2. 3.4, 4.6 and 4.7. 4.5, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from the Hepatitis B Foundation:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 2.2 The government collaborates with the following The United States Centers for Disease Control this information is in-country civil society groups to develop and and Prevention is officially working with Hep accurate. implement its viral hepatitis prevention and control B United, a national coalition of community programme: Viral Hepatitis Action Coalition (VHAC), coalitions across the country working to reduce National Viral Hepatitis Roundtable and Asia and hepatitis B infection and liver cancer. Pacific Alliance to Eliminate Viral Hepatitis.

4.4 There is a national policy specifically targeting All pregnant women in the United States are mother-to-child transmission of hepatitis B. required to be tested for hepatitis B to ensure that appropriate post-exposure prophylaxis is provided to their newborns within the first 12 to 24 hours after delivery.

5.2 The government has national policies relating To clarify, the government has national to screening and referral to care for hepatitis B “recommendations” relating to screening and and hepatitis C. referral to care. They are not policies, in that they do not need to be followed – they are intended to guide practice.

××To our knowledge, 3.1 There is routine surveillance for viral hepatitis. To the best of our knowledge, there is no national this information is There is a national surveillance system for the surveillance system for chronic hepatitis B. not accurate. following types of acute hepatitis: A, B, C and D. There are smaller, targeted federally funded There is a national surveillance system for the surveillance programmes for chronic hepatitis B, following types of chronic hepatitis: B and C. in strategic areas of the country (i.e. New York City, Philadelphia, Massachusetts). Region of the Americas the Chapter of 5: Region

* World Hepatitis Alliance member.

88 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 4.2 The government has established the goal The government has responded to the viral this information is of eliminating hepatitis B but information was hepatitis epidemic with the Viral Hepatitis Action not accurate. not provided about a specific timeframe for Plan that was initiated in 2011 through 2013. this goal. A renewal of this three-year plan is currently underway with release expected in May 2014. The goal is to ultimately eliminate viral hepatitis, but the specific objectives for the next three years are to improve viral hepatitis prevention and ensure that infected persons are identified and provided care and treatment; and to improve coordination of viral hepatitis activities and promote collaborations.

Statement from the Hepatitis B procedures, screening recommendations) for chronic hepatitis B and hepatitis C, Foundation regarding key hepatitis which has led to a lack of routine screening so that these diseases will not be policy issues in the United States: at the primary care level; having a underestimated. Other stakeholders, health care system that does not offer including those involved in health care, Viral hepatitis B and C continue appropriate access to health care for non-profit research and public health to be seriously under-diagnosed and the highest risk and most underserved should collaborate to make hepatitis B under-estimated diseases in the United communities; and disease-related and hepatitis C screening and linkage States. Up to 70% of infected individuals stigmatisation. Having enforceable policies to care a priority – this should include remain undiagnosed. Less than 15% in place would help to improve routine improving infrastructure in high-risk of people with chronic hepatitis B receive viral hepatitis screening and linkage communities, delivering education treatment. These lapses are due to a to care. Additionally, the government to providers and community members, number of factors, including: translating should be responsible for developing and working to reduce socio-economic policy into practice (reimbursement an enhanced, national surveillance system barriers to these services. Chapter 5: Chapter Region of the Americas

89 United States

Hep C Connection*

NGO – hepatitis patient group Denver, Colorado, United States www.hepc-connection.org

SURVEY HIGHLIGHTS

Survey comments from Hep C Connection:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.1 There is routine surveillance for viral hepatitis. The chronic surveillance system is for a limited this information is There is a national surveillance system for the number of states and cities. accurate. following types of acute hepatitis: A, B, C and D. There is a national surveillance system for the following types of chronic hepatitis: B and C.

5.4 Publicly funded treatment is not available To an extent it is through Medicaid. for hepatitis B or hepatitis C.

agencies and specific activities that will such as Hep C Connection, should continue Statement from the Hep C help identify patients with the virus, to try to implement specific strategies Connection regarding key hepatitis provide linkage to care, increase providers in their own communities that have policy issues in the United States: who treat, and develop awareness about been identified in the Health and Human viral hepatitis. The plan is ambitious given Services action plan. The United States The United States Health and Human that our federal budget does not provide Centers for Disease Control and Prevention Services agency has spent a lot of time a lot of financial resources to implement it. viral hepatitis budget is roughly and resources creating a viral hepatitis The federal government should increase US$ 29,000,000, which is a pittance action plan and then updating it with funding; however, that is unlikely to compared to HIV funding and the overall results. The plan involves many federal happen. Other stakeholders, non-profits federal government budget. Region of the Americas the Chapter of 5: Region

* World Hepatitis Alliance member.

90 Global Community Hepatitis Policy Report United States

San Francisco Hepatitis C Task Force*

NGO – city task force San Francisco, California, United States http://sfhepc.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of the United States reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 36.0% thought to not be accurate for 24.0% the government information for 40.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 2.2, 4.1, 4.2, 4.8, 4.10, 5.2 1.3, 2.1, 3.4, 5.1, 5.4 and 5.5. 3.1, 3.2, 3.3, 3.5, 4.3, 4.4, 4.5, 4.6, and 5.3. 4.7 and 4.9.

Survey comments from the San Francisco Hepatitis C Task Force:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is a written national strategy or plan The United States Health and Human Services this information is that focuses exclusively on the prevention and (HHS) department has an action plan regarding accurate. control of viral hepatitis. It includes components viral hepatitis. for raising awareness; surveillance; vaccination; prevention in general; prevention of transmission of viral hepatitis via injecting drug use; health- care transmission prevention; treatment and care; and coinfection with HIV.

××To our knowledge, 1.3 The government has a viral hepatitis prevention Although there is an HHS action plan, funding this information is and control programme that includes activities for activities is insufficient. State viral hepatitis not accurate. targeting the following specific populations: coordinators are poorly funded. health-care workers (including health-care waste handlers); people who inject drugs; migrants; prisoners; the homeless; people living with HIV; low-income populations; the uninsured; immigrants and refugees; people born between 1945 and 1965; Asian-Americans; military veterans; and people who have chronic hepatitis C and live in areas underserved by treatment specialists.

2.1 The government held events for World Very little other than a presidential proclamation Hepatitis Day 2012. It has funded other viral has been done. hepatitis public awareness campaigns since January 2011 (Annex A). Chapter 5: Chapter

5.1 Health professionals obtain the skills and Medical training may exist, but is inadequate.

competencies required to effectively care Region of the Americas for people with viral hepatitis through schools of health professionals (pre-service education), on-the-job training, post-graduate training and continuing medical education. There are national clinical guidelines for the management of viral hepatitis. These guidelines include recommendations for cases of HIV coinfection.

* World Hepatitis Alliance member.

91 United States

San Francisco Hepatitis C Task Force continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 5.4 Publicly funded treatment is not available Some types of public funding – generally at the this information is for hepatitis B or hepatitis C. state level – cover treatment. not accurate.

5.5 The following hepatitis B drugs are included To our knowledge, the United States does not on the national essential medicines list or are have a national list. subsidised by the government: interferon alpha, pegylated interferon, lamivudine, adefovir dipivoxil, entecavir, telbivudine and tenofovir. The following hepatitis C drugs are included on the national essential medicines list or are subsidised by the government: interferon alpha, pegylated interferon, ribavirin, boceprevir and telaprevir.

--We take no position 3.1 There is routine surveillance for viral hepatitis. Surveillance in the United States is inadequate. regarding this There is a national surveillance system for the statement. following types of acute hepatitis: A, B, C and D. There is a national surveillance system for the following types of chronic hepatitis: B and C.

3.5 There is not a national public health research No national public health research agenda agenda for viral hepatitis. Viral hepatitis is accurate. serosurveys are conducted regularly; the target populations are children over the age of six and the general population. The last serosurvey was carried out in 2011.

Statement from the San Francisco >> evidence-based policy and data Services department does not even have Hepatitis C Task Force regarding for action; a website maintained specifically for key hepatitis policy issues in the viral hepatitis. >> prevention of transmission; United States: >> screening, care and treatment Legislative action has been sorely lacking. The San Francisco Hepatitis C Task Force State coordinators, who could play a vital feels the United States does not adequately role in the national response, also have Totally inadequate resources are available address any of the following topics: tiny budgets. Other stakeholders such to direct at viral hepatitis. Funding for as task forces like ourselves are ready the national response to viral hepatitis >> national coordination; and willing to work on viral hepatitis needs to be greatly expanded. Currently, issues at all levels. >> awareness-raising, partnerships the United States Health and Human and resource mobilisation; Region of the Americas the Chapter of 5: Region

92 Eastern Mediterranean Region 6

Global Community Hepatitis Policy Report

Eastern Mediterranean 6 Region

1 Egypt • Egyptian Liver Research Institute and Hospital

2 Jordan • Friends of Liver Disease Patients Society 3 3 Lebanon 2 4 • Soins Infirmiers et Développement Communautaire 1 4 Pakistan • Pakistan Society for Study of Liver Diseases 5 • The Health Foundation

5 Yemen • Yemen Gastroenterology and Hepatology Society

This chapter presents Eastern Mediterranean region findings 6.1. Respondents from the World Hepatitis Alliance’s 2014 civil society survey in two sections. Six organisations from five countries in the Eastern Mediterranean region responded to the World Hepatitis Alliance’s 2014 civil The first section provides an overview of respondents. society survey. The governments of all of those countries The second section describes the extent to which respondents provided information for the 2013 WHO global policy report, agreed or disagreed with what their governments reported and thus all respondents were able to comment on the accuracy about hepatitis policies and programmes for the 2013 World of their governments’ responses. Additional information about Health Organization (WHO) Global Policy Report on respondents is presented in Table 6.1. the Prevention and Control of Viral Hepatitis in WHO Member States. It also notes the issues associated with the greatest amount of agreement and disagreement.

Table 6.1 Eastern Mediterranean region respondents to the World Hepatitis Alliance’s 2014 civil society survey (N=6)

Type of respondent (#)

Country Chapter 6: Chapter Civil society survey respondents (#) hepatitis – NGO patient group NGO – direct service provider NGO – other society Medical Private foundation Other

Egypt 1 1 Eastern Mediterranean Region Jordan 1 1 Lebanon 1 1 Pakistan 2 1 1 Yemen 1 1

95 Eastern Mediterranean Region continued

Figure 6.1. Types of organisations submitting survey responses, Figure 6.2. Responses received by income group,a Eastern Mediterranean Figure 6.2 Eastern Mediterranean region (N=6) region (N=6) Figure 6.1 17% 17% NGO: hepaiis Other paient group 33% Upper-middle- Types of income organisaions Responses submiing survey received by 17% responses, 17% income group,a Private NGO: direct foundaion Eastern service Eastern Mediterranean provider Mediterranean region (N=6) region (N=6) 67% Lower-middle- 17% 17% income Medical NGO: other society

a Source for income group classifications: World Bank 2013 data (http://data.worldbank.org/about/country-and-lending-groups).

Half of respondents identified themselves as nongovernmental The following survey items were most commonly identified organisations (Figure 6.1). Among the remaining respondents, as points on which civil society respondents in the Eastern one identified itself as a medical society and another as a Mediterranean region agreed with their governments’ responses: private foundation. item 1.2, regarding the existence of a designated governmental unit/department responsible for viral hepatitis-related activities One-third of respondents were either voting or non-voting and the number of government staff working on hepatitis-related members of the World Hepatitis Alliance at the time they activities; item 3.2, regarding hepatitis case definitions and submitted their surveys (data not shown). the reporting of deaths; item 3.3, regarding disease registration and reporting; item 3.4, regarding the reporting and investigation Two-thirds of respondents were based in lower-middle-income of hepatitis outbreaks; and item 3.5, regarding a national viral countries. The remainder were based in upper-middle-income hepatitis research agenda and viral hepatitis serosurveys. countries (Figure 6.2). Further details are presented in Table 6.2.

The following survey items were most commonly identified as points on which civil society respondents in the Eastern 6.2. Highlights relating to civil society agreement Mediterranean region disagreed with their governments’ or disagreement with what governments reported responses: item 1.1, regarding the existence of a national strategy or plan for the prevention and control of viral hepatitis; The civil society survey contained 25 items based on the item 2.1, regarding World Hepatitis Day activities and viral information that governments provided for the 2013 WHO global hepatitis awareness campaigns; item 2.2, regarding government policy report. For each item, civil society stakeholders were asked collaboration with civil society groups; and item 3.1, regarding to consider the government response to one or more questions viral hepatitis surveillance. Further details are presented about national hepatitis policies and programmes, and to select in Table 6.3. one of the following three statements: To our knowledge, this information is accurate; To our knowledge, this information is not accurate; or We take no position regarding this statement.

Detailed findings for all civil society survey items are presented in Annex C. In sum, half of all civil society respondents thought that the information from their governments was accurate for 19 or more of the 25 items. Regarding the proportions of respondents who marked items as “not accurate,” one-third thought that the information from their governments was not accurate for at least 10 items. Eastern Mediterranean Region Mediterranean Chapter 6: Eastern

96 Global Community Hepatitis Policy Report

Table 6.2. Survey items eliciting the highest levels of agreement from civil society respondents, Eastern Mediterranean region (N=6)

# (%) of respondents who indicated agreement with their governments’ Question(s) addressed by governments for 2013 WHO global Survey item response(s) by selecting “to our policy report knowledge, this information is accurate” Is there a designated governmental unit/department responsible only for coordinating and/or carrying out viral hepatitis-related activities? 1.2 If yes, what is its name? 6 (100%) How many people work full-time (or how many full-time equivalent staff) on hepatitis-related activities in all government agencies/bodies? Are there standard case definitions for hepatitis infections? Are deaths, including from hepatitis, reported to a central registry? 3.2 6 (100%) What percentage of hepatitis cases are reported as “undifferentiated” or “unclassified” hepatitis? Are liver cancer cases registered nationally? 3.3 Are cases of HIV/hepatitis co-infection registered nationally? 6 (100%) How often are hepatitis disease reports published? Are hepatitis outbreaks required to be reported to the government? If yes, are they further investigated? 3.4 6 (100%) Is there adequate laboratory capacity nationally to support viral hepatitis outbreak investigations and other surveillance activities? Is there a national public health research agenda for viral hepatitis? 3.5 Are viral hepatitis serosurveys conducted regularly? If yes, how often? 6 (100%) When was the last one carried out? Please specify the target populations.

Table 6.3. Survey items eliciting the highest levels of disagreement from civil society respondents, Eastern Mediterranean region (N=6)

# (%) of respondents who indicated disagreement with their governments’ Question(s) addressed by governments for 2013 WHO global Survey item response(s) by selecting “to our policy report knowledge, this information is not accurate” In your country, is there a written national strategy or plan that focuses exclusively or primarily on the prevention and control of viral hepatitis?

1.1 2 (33.3%) 6: Chapter If yes, is it exclusive for viral hepatitis or does it also address other diseases? Please indicate components of the strategy or plan. Did your government hold events for World Hepatitis Day 2012?

2.1 Has your government funded any public viral hepatitis awareness 3 (50.0%) Eastern Mediterranean Region campaigns since January 2011, other than World Hepatitis Day? Does your government collaborate with any civil society group within your country (such as patient groups or national or local nongovernmental 2.2 2 (33.3%) organisations) to develop and implement its viral hepatitis prevention and control programme? If yes, please name major partners. Is there routine surveillance for viral hepatitis? If yes, is there a national surveillance system for the following types of acute hepatitis? A, B, C. 3.1 4 (66.7%) Is there a national surveillance system for the following types of chronic hepatitis? B, C.

97 Egypt

Egyptian Liver Research Institute and Hospital

NGO – direct patient services, social awareness and continuing medical education Dakahlia, Egypt www.liver-ri.org.eg

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Egypt reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 88.0% thought to not be accurate for 8.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.2, 3.3, 3.4, 3.5, 3.1 and 5.2. 4.4. 4.1, 4.2, 4.3, 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.3, 5.4 and 5.5.

The Egyptian Liver Research Institute and Hospital (ELRIAH) did not provide any comments about survey items.

Statement from ELRIAH regarding key What should be the government’s Evidence: hepatitis policy issues in Egypt: role in bringing about these changes? What responsibilities should the A study was conducted through a project Awareness-raising faces many obstacles, government have? titled “Changing Behavioural Aspects some of them due to social factors such as Leading to Hepatitis C Endemicity through >> Increasing the budget set for illiteracy, poverty, and ignorance spread in Developing Educational and Multi-media prevention and treatment. many rural areas in Egypt which leads to Tools, Grant No. 1774,” that was supported wrong practices causing the transmission >> Increasing the number of health care financially by the Science and Technology of hepatitis and increasing its prevalence organisations providing awareness, Development Fund, Egypt. in Egypt. Other obstacles are governmental, treatment, screening, and care. like budgetary issues, and coordination This study aimed to assess the level of >> Establishing more partnerships with among NGOs as partners in raising behavioural development in order to create NGO organisation and sharing duties community awareness. On a national scale, a positive environment for the adoption of and responsibilities with them. lack of health awareness among people the recommended behaviours. The study of the rural areas, and their overestimating >> Focusing mainly on rural was conducted over one year from Jan. or underestimating such diseases, as many underserved communities. 2011 until Jan. 2012. Knowledge, attitude consequences such as the withdrawal of the and behaviour of 540 hepatitis C patients >> Improving awareness through all patient, social trend to ignore the periodical and 102 of their contacts were assessed means of media and communications. examination, this resulting in the quick and the level of behavioural development silent spread of infection. was determined. The study revealed that The roles and responsibilities of other the majority of patients and contacts knew What needs to change? stakeholders in the community should be that hepatitis C infection is dangerous with the implementation of the governmental perceived concern for early diagnosis and >> Increasing the number of awareness strategies and guidelines side-by-side treatment. More than 75% knew the correct campaigns all over Egypt, especially with supervision and monitoring the modes of transmission. The assessment rural poor areas. wrong practices of health practitioners showed positive attitudes towards the >> Implementation of strict rules on or organisations or the individuals recommended practices with intention health care units and practitioners not to take preventive actions, continual to adopt those practices. Strategies of applying infection control guidelines, improvement, less infection prevalence creating opportunities to continue the to eliminate infection prevalence. as a long-term result. recommended behaviours should be adopted together with the reinforcement >> Increasing the budget for treatment of social support. (World Academy of and awareness. Science, Engineering and Technology >> Establishing more partnerships International Journal of Medical Science with national NGOs under organised and Engineering Vol:7 No:12, 2013.) governmental coordination to share duties and responsibilities. Eastern Mediterranean Region Mediterranean Chapter 6: Eastern

98 Global Community Hepatitis Policy Report Jordan

Friends Of Liver Disease Patients Society*

NGO – hepatitis patient group Amman, Jordan https://www.facebook.com/pages/Friends-of-liver-disease-patients-society/273264735076

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Jordan reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 76.0% thought to not be accurate for 16.0% the government information for 8.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 3.2, 3.3, 3.4, 3.5, 4.1, 4.2, 4.3, 2.1, 2.2, 3.1 and 4.5. 1.3 and 5.3. 4.4, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.2, 5.4 and 5.5.

The Friends of Liver Disease Patients Society did not provide any comments about survey items. The respondent also did not provide a statement regarding key hepatitis policy issues in Jordan. Chapter 6: Chapter Eastern Mediterranean Region

* World Hepatitis Alliance member. 99 Lebanon

Soins Infirmiers et Développement Communautaire*

NGO – direct service provider for people with HIV, people with hepatitis B, and people who use drugs Beirut, Lebanon www.idc-lebanon.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Lebanon reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The respondent took no position on thought to be accurate for 68.0% the government information for 32.0% of items. of items. Survey points marked “accurate”: Survey points marked “take no position”: 1.2, 1.3, 2.2, 3.1, 3.2, 3.3, 3.5, 4.4, 1.1, 2.1. 3.4, 4.1, 4.2, 4.3, 4.7 and 5.1. 4.5, 4.6, 4.8, 4.9, 4.10, 5.2, 5.3, 5.4 and 5.5.

Survey comments from Soins Infirmiers et Développement Communautaire:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 2.2 The government collaborates with the This collaboration needs to be strengthened. this information following in-country civil society groups to develop is accurate. and implement its viral hepatitis prevention and control programme: the Lebanese Red Cross, SIDC, Hep B and Lebanese Scouts.

4.6 There is a national policy on injection safety It is not only for hepatitis prevention. in health-care settings. It is not known what types All hospitals and medical settings are of syringes the policy recommends for therapeutic implementing universal precautions. injections. Single use or auto-disable syringes, needles and cannulas are always available in all healthcare facilities.

5.3 People testing for both hepatitis B and hepatitis The names are confidential but the patient needs C register by name; the names are kept confidential to go monthly to the Ministry of Health to take within the system. Hepatitis B and hepatitis C his medication. He has a card that indicates tests are not free of charge and not compulsory his status. for members of any specific group.

--We take no 1.1 There is a written national strategy or plan that There is a National Programme for hepatitis B position regarding focuses exclusively on the prevention and control and hepatitis C, but we do not have the strategic this statement. of viral hepatitis. It includes components for raising plan and details of it. awareness, surveillance, vaccination, prevention in general, prevention of transmission via injecting drug use, prevention of transmission in health- care settings, treatment and care, and co infection with HIV. Eastern Mediterranean Region Mediterranean Chapter 6: Eastern

* World Hepatitis Alliance member. 100 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no 2.1 The government did not hold events for World To our knowledge, the programme is position regarding Hepatitis Day 2012 and has not funded other implementing awareness-raising activities this statement. viral hepatitis public awareness campaigns since and training workshops. However we cannot January 2011. tell to what extent it is active or not.

3.4 Hepatitis outbreaks are required to be reported We have a concern about hepatitis C infection to the government and are further investigated. among drug users that is well known by the There is adequate laboratory capacity nationally government even if there is no specific data to support outbreak investigations and other on that but these cases are reported. However, surveillance activities for hepatitis A, hepatitis B we cannot say that there is a national response and hepatitis C, but not for hepatitis E. to prevent or to take action with this regards.

Statement from Soins Infirmiers et Responses to questions: What should be the roles and responsibilities Développement Communautaire of other stakeholders at the community, regarding key hepatitis policy issues What are the greatest problems national and international levels? in Lebanon: with the national response to >> Discuss and/or develop viral hepatitis? a national strategy. National coordination. For us the >> The national programme should coordination should be made differently >> Involvement in conducting studies be more active and the Ministry of and an advisory committee should be to know about the response. Health should invest more to have a formed from NGOs and other sectors well-established national strategy. >> Developing a referral system. that are involved in the hepatitis B and hepatitis C field of work. What needs to change? What evidence exists to support Awareness-raising, partnerships your organisation’s viewpoint? >> An active participation of NGOs among and resource mobilisation. More activities other stakeholders in the response. >> We do not have documents – what should be done including awareness-raising we have is that by observing our for the public and for specific groups >> A specific interventions and patients not able to be adherent to and engagement to do activities for considerations for vulnerable groups the medications, not able to receive vulnerable populations. such as people who use drugs and in the hepatitis B vaccine free of charge people in prison and detention settings. and not able to cover the fees of their Evidence-based policy and data >> Sharing of information. CD4 and viral load. All of these issues for action. There is a need to conduct for us are crucial for reporting and to integrated bio-behavioural surveillance take action. studies or any other study that can give a What should be the government’s real context of hepatitis B and hepatitis C, role in bringing about these changes? especially among other hepatitis infections. What responsibilities should the government have? Prevention of transmission. We are >> The Ministry is responsible to assure noticing that among men who have sex a comprehensive package of treatment 6: Chapter with men (MSM) we have hepatitis B and care for patients and to activate the patients, and among drug users we have national programme. hepatitis C patients. Eastern Mediterranean Region Screening, care and treatment. The treatment is available by the Ministry of Health however the regular tests PCR and other are not covered and this could be an obstacle for the adherence of the treatment.

101 Pakistan

The Health Foundation*

NGO – direct service provider Karachi, Pakistan http://thehealthfoundation.org/

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Pakistan reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 60.0% thought to not be accurate for 40.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.2, 1.3, 3.2, 3.3, 3.5, 4.1, 4.2, 4.3, 4.6, 1.1, 2.1, 2.2, 3.1, 3.4, 4.4, 4.5, 4.8, 4.10 4.7, 4.9, 5.2, 5.3, 5.4 and 5.5. and 5.1.

Survey comments from The Health Foundation:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.3 The government has a viral hepatitis prevention The provincial government is working in this information and control programme that includes activities collaboration with other NGOs and civil society is accurate. targeting the following specific populations: organisations (CSOs) for the said activity. health-care workers (including health-care waste These NGOs/CSOs cater to different target groups handlers), people who inject drugs, prisoners and including the ones mentioned in the statement. people living with HIV.

3.1 There is routine surveillance for viral hepatitis. There is no surveillance for any type of Hepatitis There is a national surveillance system for acute done be it hepatitis A, hepatitis B, hepatitis C or hepatitis A, but not for any type of chronic hepatitis. hepatitis E.

3.3 Liver cancer cases are not registered nationally, The first statement is not correct but the but cases with HIV/hepatitis coinfection are. government has published one hepatitis disease The government has published one hepatitis report that described a national hepatitis disease report that described a national hepatitis prevalence study conducted in 2008. prevalence study conducted in 2008.

5.3 People testing for both hepatitis B and There is no open access to their names. The rest hepatitis C register by name, and there is open I agree with. access to their names. Hepatitis B and hepatitis C tests are not free of charge and not compulsory for members of any specific group.

××To our knowledge, 1.1 There is no written national strategy or plan that There is a national strategy exclusively for this information focuses exclusively or primarily on the prevention hepatitis B and hepatitis C in Pakistan at all is not accurate. and control of viral hepatitis. provincial levels.

2.1 The government held events for World The provincial hepatitis programmes do Hepatitis Day 2012 and has funded other viral celebrate World Hepatitis Day but they do not hepatitis public awareness campaigns since fund any other viral hepatitis public awareness. January 2011 (Annex A). Eastern Mediterranean Region Mediterranean Chapter 6: Eastern

* World Hepatitis Alliance member.

102 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 2.2 The government does not collaborate with Since we are working in Sindh at the moment the this information in-country civil society groups to develop and Hepatitis Chief Minister Programme has signed is not accurate. implement its viral hepatitis prevention a memorandum of understanding to provide and control programme. us with treatment for hepatitis C (conventional interferon 3MIU+ribavirin) and hepatitis B (tab entacavir 0.5mg) as well as hepatitis B vaccine (both adult and paediatric dose). We have a strong partnership with this provincial government initiative (the Hepatitis Prevention and Control Program, Sindh) since 2011 and every month we submit our reports to them regarding the stock provided.

4.8 There is a national infection control policy There are many small blood banks selling blood for blood banks. All donated blood units (including which has never been screened. Only reputable family donations) and blood products nationwide labs screen blood for both hepatitis B and are screened for hepatitis C, but not for hepatitis B. hepatitis C.

4.10 The government has guidelines that address If there are guidelines, they have never been how hepatitis A and hepatitis E can be prevented implemented and we have never heard of them. through food and water safety.

Statement from The Health Foundation Responses to questions: What should be the roles and regarding key hepatitis policy issues responsibilities of other stakeholders in Pakistan: What are the greatest problems with at the community, national and the national response to viral hepatitis? international levels? National coordination. There is no >> The greatest problem is the mind-set >> NGOs/CSOs can help in raising national coordination. NGOs/CSOs of the people. The majority of Pakistanis awareness and mobilisation are not being recognised for the work are from a low socio-economic of the communities. being done in any field. There is always background and they think that getting a factor of mistrust among us CSOs >> Government can ensure that standards an injection will make them better at a and the government. are met for supply/demand for fast pace and they can in turn not miss vaccination, treatment and cold-chain a single day as they are on daily wages. Awareness-raising, partnerships and maintenance. resource mobilisation. The media does What needs to change? >> Media can play a vital role in ensuring not play any role in awareness-raising, viral hepatitis awareness (small TVCs even though it can be the best source >> Injection practices, the role of the every few hours on all channels) to raise awareness among the masses. media to create awareness, behaviour 6: Chapter change communication of the general What evidence exists to support Evidence-based policy and data population. your organisation’s viewpoint? for action. No such data exists.

What should be the government’s >> WHO EMRO | Prevention Eastern Mediterranean Region Screening, care and treatment. Screening role in bringing about these changes? and control of hepatitis is not encouraged in public-sector hospitals What responsibilities should the >> A review of hepatitis viral infections in due to a lack of funds. Our routine government have? Pakistan immunisation is well below the standard >> The government can play a vital role percentage. So many children miss their >> 18m hepatitis patients in Pakistan by providing us with reliable date pentavalent vaccine which has hepatitis B and conducting hepatitis surveys >> A Silent Storm: Hepatitis C in Pakistan vaccine in it. Birth dose and administration nationwide. It can also make a central of HBIG (in case the mother has hepatitis >> Prevalence of Hepatitis B & C hepatitis data repository that would be B) at the time of birth is not given in in Pakistan a good resource and free for all NGOs public as well as many private hospitals. and civil society organisations (CSOs) Treatment guidelines are not followed in to access. the majority of the cases.

103 Pakistan

Pakistan Society for Study of Liver Diseases

Medical society Karachi, Pakistan www.psssid.org.pk

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Pakistan reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 56.0% thought to not be accurate for 44.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.2, 2.2, 3.1, 3.2, 3.3, 3.5, 4.1, 4.5, 4.6, 1.1, 1.3, 2.1, 3.4, 4.2, 4.3, 4.4, 4.8, 4.10, 5.1 4.7, 4.9, 5.3, 5.4 and 5.5. and 5.2.

Survey comments from the Pakistan Society for Study of Liver Diseases:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.5 There is a specific national strategy and/or There is vaccination of health workers, but not this information is policy/guidelines for preventing hepatitis B before starting work. Also, vaccination is not accurate. and hepatitis C infection in health-care settings. carried out uniformly. Health-care workers are vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood.

××To our knowledge, 1.3 The government has a viral hepatitis prevention Special population groups like the ones this information is and control programme that includes activities mentioned are specifically not taken care not accurate. targeting the following specific populations: of in the national hepatitis control programmes. health-care workers (including health-care waste handlers), people who inject drugs, prisoners and people living with HIV.

2.1 The government held events for World In general such events are held and sponsored Hepatitis Day 2012 and has funded other viral mostly by civil society organisations like hepatitis public awareness campaigns since medical societies. January 2011 (Annex A).

3.1 There is routine surveillance for viral There are some surveillance programs run hepatitis. There is a national surveillance system by concerned organisations but not by the for acute hepatitis A, but not for any type of government itself. chronic hepatitis.

4.2 The government has not established the goal There has been a reasonably robust national of eliminating hepatitis B. programme for hepatitis B vaccination for many years.

4.8 There is a national infection control policy for There is a national policy for blood banks, which blood banks. All donated blood units (including is poorly implemented. There is more routine family donations) and blood products nationwide testing of blood donations for hepatitis B rather are screened for hepatitis C, but not for hepatitis B. than hepatitis C. Eastern Mediterranean Region Mediterranean Chapter 6: Eastern

104 Global Community Hepatitis Policy Report

Statement from the Pakistan Society Awareness-raising. Very little direct Prevention of transmission. The area for Study of Liver Diseases regarding governmental effort and resource is of hepatitis B vaccination is going key hepatitis policy issues in Pakistan: being spent in public awareness. More well. However a birth dose needs governmental and NGO partnerships need to be introduced as soon as possible. National Coordination. With devolution to developed. of health as a provincial subject, the central Screening, care and treatment. A good coordination of programs has suffered. Evidence-based policy. The need for number of patients are being treated. To some extent these issues of national further evidence is critical. There are very However, record-keeping is poor and coordination are being addressed by the few surveillance programs to calculate the therefore outcomes of treatment are formation of a technical advisory group true ongoing impact of these infections. not accurately measured. for viral hepatitis at the national level, with the involvement of all provincial programme managers ensured. Chapter 6: Chapter Eastern Mediterranean Region

105 Yemen

Yemen Gastroenterology and Hepatology Society

Private foundation Sanaa City, Yemen

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Yemen reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 88.0% thought to not be accurate for 8.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 3.4, 4.1 and 4.7. 4.6. 3.5, 4.2, 4.3, 4.4, 4.5, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

The Yemen Gastroenterology and Hepatology Society did not provide any comments about survey items. The respondent also did not provide a statement regarding key hepatitis policy issues in Yemen. Eastern Mediterranean Region Mediterranean Chapter 6: Eastern

106 European Region 7

Global Community Hepatitis Policy Report

7 European Region

17 6 7 21 15 16 27 3 10 18 26 4 8 12 20 14 5 19 23 9 11 24 2 1 22 25 13

1 Albania 14 Italy • Aksion Plus • Associazione EpaC

2 Austria 15 Latvia • Österreichische Gesellschaft für Gastroenterologie • Hepatīta Biedrība und Hepatologie 16 Netherlands 3 Belarus • De Regenboog Groep (The Rainbow Group) • Together against Hepatitis 17 Norway 4 Belgium • Norwegian Society for Infectious Diseases • Carrefour Hépatites • Vlaams Hepatitis Contactpunt 18 Poland • Department of Infectious Diseases, Wroclaw Medical University 5 Bulgaria • Polish Association for the Study of the Liver • HepActive • National Association for Fighting Hepatitis – Hepasist 19 Portugal • Portuguese Board of Hepatology 6 Denmark • CHIP 20 Romania • Baylor Black Sea Foundation • Roskilde Sygehus

• Sex & Samfund (Danish Family Planning Association) 21 Russian Federation • United against Hepatitis 7 Estonia • Estonian Society of Gastroenterology 22 Serbia • Association HRONOS 8 France • Association Française pour l’Etude du Foie 23 Spain • Institut de Santé Publique, d’Epidémiologie et de • ASSCAT Développement, Bordeaux School of Public Health 24 Switzerland • Swiss Experts in Viral Hepatitis 9 Georgia • Georgian Harm Reduction Network 25 The former Yugoslav Republic of Macedonia • Healthy Options Project Skopje 10 Germany • Deutsche Leberhilfe e.V. • HEPTA Chapter 7: Chapter • Deutsche Leberstiftung/German Liver Foundation 26 Ukraine • Government Institution “L.T. Malaya Therapy National Institute 11 Greece of the National Academy of Medical Sciences of Ukraine”

• Hellenic Foundation of Gastroenterology and Nutrition European Region • Hellenic Liver Association “Prometheus” • International HIV/AIDS Alliance in Ukraine • Public Organization “Gay-Alliance” 12 Hungary • Májbetegekért Alapítvány 27 United Kingdom of Great Britain and Northern Ireland • The Hepatitis C Trust Israel 13 • The Hepatitis C Trust (Scotland) • Hetz – Israel Association for the Health of the Liver • Waverley Care

109 European Region continued

This chapter presents European region findings from the World Organization (WHO) Global Policy Report on the Prevention Hepatitis Alliance’s 2014 civil society survey in three sections. and Control of Viral Hepatitis in WHO Member States. It also notes the issues associated with the greatest amount of agreement and The first section provides an overview of respondents. disagreement. The third section highlights some of the qualitative The second section describes the extent to which respondents findings from respondents based in countries where governments agreed or disagreed with what their governments reported about did not submit information for the 2013 WHO global policy report. hepatitis policies and programmes for the 2013 World Health

Table 7.1. European region respondents to the World Hepatitis Alliance’s 2014 civil society survey (N=40)

Type of respondent (#)

Country Civil society survey respondents (#) hepatitis – NGO patient group NGO – direct service provider NGO – other society Medical Private foundation Other

Albania 1 1 Austria 1 1 Belarus 1 1 Belgium 2 2 Bulgaria 2 2 Denmark 3 1 1 1 Estonia 1 1 France 2 1 1 Georgia 1 1 Germany 2 1 1 Greece 2 1 1 Hungary 1 1 Israel 1 1 Italy 1 1 Latvia 1 1 Netherlands 1 1 Norway 1 1 Poland 2 1 1 Portugal 1 1 Romania 1 1 Russian Federation 1 1 Serbia 1 1 Spain 1 1 Switzerland 1 1 The former Yugoslav Republic 2 1 1 of Macedonia Ukraine 3 2 1

European Region Chapter European 7: United Kingdom of Great Britain 3 2 1 and Northern Ireland

110 Global Community Hepatitis Policy Report

7.1. Respondents To our knowledge, this information is accurate; To our knowledge, this information is not accurate; or We take Forty organisations from 27 countries in the European region no position regarding this statement. responded to the World Hepatitis Alliance’s 2014 civil society survey. The governments of 23 of those countries provided Detailed findings for all civil society survey items are presented information for the 2013 WHO global policy report, and thus in Annex C. In sum, approximately half of all civil society the 35 respondents based in those countries were able to respondents thought that the information from their governments comment on the accuracy of their governments’ responses. was accurate for 18 or more of the 25 items. Regarding the The governments of the other four countries did not provide proportions of respondents who marked items as “not accurate,” information for the 2013 report; the five respondents based approximately half thought that the information from their in those countries instead commented on their governments’ governments was not accurate for at least five items. responses to viral hepatitis by writing short statements about key issues. Additional information about respondents is presented The following survey items were most commonly identified in Table 7.1. as points on which civil society respondents in the European region agreed with their governments’ responses: item 1.1, Almost forty percent of respondents identified themselves as regarding the existence of a national strategy or plan for the hepatitis patient groups, and another 18% identified themselves prevention and control of viral hepatitis; item 4.6, regarding as nongovernmental direct service providers (Figure 7.1). injection safety in health care settings; item 4.8, regarding Fifteen percent identified themselves as medical societies. infection control for blood products; and item 5.5, regarding the inclusion of hepatitis B drugs and hepatitis C drugs on Forty-five percent of respondents were either voting national essential medicines lists and in government-subsidised or non-voting members of the World Hepatitis Alliance programmes. Further details are presented in Table 7.2 overleaf. at the time they submitted their surveys (data not shown). The following survey items were most commonly identified as Almost two-thirds of respondents were based in high-income points on which civil society respondents in the European region countries. Another 23% were based in upper-middle-income disagreed with their governments’ responses: item 3.1, regarding countries (Figure 7.2). viral hepatitis surveillance; item 3.3 regarding disease registration and reporting; item 5.2, regarding screening and referral to care for hepatitis B and hepatitis C; item 5.3, regarding hepatitis B 7.2. Highlights relating to civil society agreement and hepatitis C testing; and item 5.4, regarding publicly funded or disagreement with what governments reported treatment for hepatitis B and hepatitis C. Further details are presented in Table 7.3 overleaf. The civil society survey contained 25 items based on the information that governments provided for the 2013 WHO global policy report. For each item, civil society stakeholders were asked to consider the government response to one or more questions about national hepatitis policies and programmes, and to select one of the following three statements:

Figure 7.1. Types of organisations submitting survey responses, Figure 7.2. Responses received by income group,a European region (N=40) Figure 7.2 European region (N=40) Figure 7.1 7% 13% Low-income Other 5% Lower-middle-income 8% 38% Private Types of NGO: hepaiis foundaion paient group Responses

organisaions 7: Chapter received by submiing survey 23% income group,a Upper-middle- responses, income 15% European region

Medical European region European Region society (N=40) (N=40) 65% 10% High-income NGO: other 18% NGO: direct a Source for income group classifications: World Bank 2013 data service provider (http://data.worldbank.org/about/country-and-lending-groups).

111 European Region continued

Table 7.2. Survey items eliciting the highest levels of agreement from civil society respondents, European region (N=35)

# (%) of respondents who indicated agreement with their governments’ Question(s) addressed by governments for 2013 WHO global Survey item response(s) by selecting “to our policy report knowledge, this information is accurate” In your country, is there a written national strategy or plan that focuses exclusively or primarily on the prevention and control of viral hepatitis? 1.1 29 (82.9%) If yes, is it exclusive for viral hepatitis or does it also address other diseases? Please indicate components of the strategy or plan. Is there a national policy on injection safety in health care settings? If yes, what type of syringes does the policy recommend for 4.6 therapeutic injections? 29 (82.9%) Are single-use or auto-disable syringes, needles and cannulas always available in all health care facilities? Is there a national infection control policy for blood banks? Are all donated blood units (including family donations) and blood 4.8 products nationwide screened for hepatitis B? 32 (91.4%) Are all donated blood units (including family donations) and blood products nationwide screened for hepatitis C? Which hepatitis B drugs and hepatitis C drugs are included on the 5.5 29 (82.9%) national essential medicines list or are subsidised by the government?

Table 7.3. Survey items eliciting the highest levels of disagreement from civil society respondents, European region (N=35)

# (%) of respondents who indicated disagreement with their governments’ Question(s) addressed by governments for 2013 WHO global Survey item response(s) by selecting “to our policy report knowledge, this information is not accurate” Is there routine surveillance for viral hepatitis? If yes, is there a national surveillance system for the following types of acute hepatitis? A, B, C. 3.1 11 (31.4%) Is there a national surveillance system for the following types of chronic hepatitis? B, C. Are liver cancer cases registered nationally? 3.3 Are cases of HIV/hepatitis co-infection registered nationally? 18 (51.4%) How often are hepatitis disease reports published? Does your government have a national policy relating to screening 5.2 11 (31.4%) and referral to care for hepatitis B? For hepatitis C? Please answer the following questions about hepatitis B and hepatitis C testing in your country. • When testing, do people register by name? 5.3 • If people register by name, are their names kept confidential within 12 (34.3%) the system, or is there open access to the names? • Is the test free of charge for all individuals? • Is the test free of charge for members of any specific group? • Is the test compulsory for members of any specific group? Is publicly funded treatment available for hepatitis B? If yes, who is eligible? Is publicly funded treatment available for hepatitis C? 5.4 11 (31.4%) If yes, who is eligible?

European Region Chapter European 7: How much does the government spend on publicly funded treatment for hepatitis B and hepatitis C?

112 Global Community Hepatitis Policy Report

7.3. Qualitative findings from countries Multiple respondents highlighted viral hepatitis screening issues. where government information is lacking The Hellenic Foundation of Gastroenterology and Nutrition (Greece) wrote: Civil society survey respondents based in countries where governments did not submit information for the 2013 WHO There is no national screening policy for viral hepatitis, global policy report did not have any information to review and not even official recommendations from any governmental body. hence did not complete the component of the survey discussed in the preceding section. They only completed a survey The Baylor Black Sea Foundation reported that in Romania, component in which respondents were invited to write brief viral hepatitis screening is not “standardised, funded or statements discussing the policy response to viral hepatitis in [addressed] in special recommendations”. their countries. Respondents were encouraged to focus on one or more of five topics: national coordination; awareness-raising, The Norwegian Society for Infectious Diseases commented on partnerships and resource mobilisation; evidence-based policy a lack of national screening policies for hepatitis B or hepatitis C, and data for action; prevention of transmission; and screening, other than a policy addressing pregnancy. Even in this regard the care and treatment. respondent suggested that the existing approach is insufficient:

The purpose of this section is to present some excerpts that Testing of mothers belonging to defined risk groups is are generally reflective of the concerns of respondents in the recommended. Unfortunately, there is not always adherence European region. The following data represent only the views to this recommendation. Mothers with hepatitis B also exist of the five civil society survey respondents that did not have outside of the defined risk groups. As a result, babies at risk government information to review (two from Greece and one of mother-to-child transmission may fail to receive vaccination each from Norway, Portugal and Romania). The full text of all and immunoglobulin, and subsequently may become infected. respondents’ statements can be found later in this chapter. For the same reason, mothers with high-level hepatitis B viraemia may not receive recommended antiviral therapy Two respondents remarked on governmental failure to in pregnancy to reduce risk of transmission to their children. mount a comprehensive national response to viral hepatitis. The government should consider introducing a policy of routine The Portuguese Board of Hepatology wrote: hepatitis B testing for all pregnant women , as is already the case with HIV. There is no national coordination. The Ministry of Health has no organisation to deal specifically with hepatitis. Barriers to viral hepatitis treatment also received attention. The Hellenic Foundation of Gastroenterology and Nutrition The Baylor Black Sea Foundation wrote: (Greece) expressed concern about the lack of reimbursement for laboratory tests that patients are advised to undergo after Presently, in Romania there is no comprehensive approach they have been diagnosed with hepatitis B or hepatitis C. to tackling hepatitis B and hepatitis C. Existing efforts, especially financial efforts, go towards treatment and The respondent also wrote: only treatment. There is a delay in the availability and reimbursement of Respondents brought up different types of viral hepatitis new [viral hepatitis treatment regimens]. Even when the new prevention issues. The Hellenic Liver Association “Prometheus” agents may be available, they are only reimbursed through a (Greece) wrote: bureaucratic process based on approval for individual patients.

The increase in prevalence among people who inject The Norwegian Society for Infectious Diseases wrote: drugs is the result of underperforming harm reduction programmes. The government does not seem to invest The government of Norway provides treatment for hepatitis B in harm reduction programmes. and hepatitis C free of charge, but does not have clear policies regarding when treatment is indicated. The Norwegian Society for Infectious Diseases called attention to another aspect of viral hepatitis prevention: The Baylor Black Sea Foundation (Romania) wrote:

The Norwegian government has only included hepatitis B Access to treatment has improved in the past few years.

vaccination in the child vaccination programme for children There is a clear referral system that patients need to follow 7: Chapter born into families in which at least one parent is not from in order to acquire access to treatment. Funding is not very a low-prevalence country. The most important measure for transparent, nor is decision-making in regard to the choice prevention of transmission of hepatitis B would be to include of drug regimen, especially in hepatitis C cases.

hepatitis B vaccination in the child vaccination programme European Region for all children. Of 53 countries in the WHO European region, only five other countries besides Norway have not included hepatitis B vaccination in the child vaccination programme for all children.

113 Albania

Aksion Plus

NGO – direct service provider Tirana, Albania www.aksionplus.net

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Albania reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 76.0% thought to not be accurate for 20.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 3.1, 3.4, 4.1, 4.2, 4.3, 4.6, 4.7, 2.2, 3.3, 3.5, 4.4 and 4.5. 3.2. 4.8, 4.9, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

Aksion Plus did not provide any comments about survey items.

Statement from Aksion Plus regarding key The hepatitis approach is included as the capital, Tirana. This practice should hepatitis policy issues in Albania: a coinfection with HIV/AIDS. National be extended to other cities as well. response/law/strategy. For instance, in the Aksion Plus opioid One of the key issues is to provide substitution therapy centre in Korca, treatment for hepatitis B and hepatitis C We will organise a workshop with the a city in the south, half of the clients have to drug users and other vulnerable groups governmental health structures in order hepatitis b and hepatitis C. outside of the health insurance scheme. to better address the hepatitis treatment For those who are out of the health system, and referral system. We are closely working with the Dutch it is impossible to get free treatment. NGO Correlation Network to address Prisons are also part of this process but some of the most urgent issues related At the same time, there is not a national the situation seems a bit improved in terms to the hepatitis threat among vulnerable strategy for hepatitis B vaccination. of surveillance and treatment. groups: drug users, Roma individuals In collaboration with the Institute of and sex workers. Public Health, we were able to provide There is regular bio-behavioural free vaccines for our opioid substitution surveillance conducted with the most therapy clients and staff at our centres. vulnerable groups but it is mainly targeting European Region Chapter European 7:

114 Global Community Hepatitis Policy Report Austria

Österreichische Gesellschaft für Gastroenterologie und Hepatologie*

Medical society Vienna, Austria www.oeggh.at

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Austria reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 76.0% thought to not be accurate for 16.0% the government information for 8.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 3.2, 3.4, 3.5, 4.1, 4.3, 4.4, 3.1, 3.3, 5.1 and 5.5. 2.2 and 4.2. 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.2, 5.3 and 5.4.

Survey comments from Österreichische Gesellschaft für Gastroenterologie und Hepatologie (ÖGGH):

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is a written national strategy or plan that This is probably accurate but it is not widely this information focuses primarily on the prevention and control of known and even I myself as a citizen of Austria is accurate. viral hepatitis, and also integrates other diseases. working in the field for years have never seen It includes components for raising awareness, this national strategy or plan nor has it ever been surveillance, vaccination, prevention in general, communicated openly. If one would try hard, one prevention of transmission via injecting drug use, could probably find and get it. prevention of transmission in health-care settings, treatment and care, and coinfection with HIV.

1.2 There is no designated governmental To my knowledge, nobody works full-time unit/department responsible solely for on hepatitis-related activities in any coordinating and/or carrying out viral government body. hepatitis-related activities. It is not known how many people work full-time on hepatitis-related activities in all government agencies/bodies.

1.3 The government has a viral hepatitis prevention Again, as above, this programme is not even and control programme that includes activities known to specialists in the field in any detail targeting the following specific populations: but it could probably be found if one would health-care workers (including health-care waste be actively chasing it. handlers), people who inject drugs and people living with HIV.

2.1 The government did not hold events for This is probably true but it would also not be World Hepatitis Day 2012 and has not funded other effective if they would, considering that World viral hepatitis public awareness campaigns since Hepatitis Day is in the middle of the Austrian January 2011. holiday season with nobody around. Chapter 7: Chapter

4.5 There is a specific national strategy and/or But to my knowledge, this programme is only policy/guidelines for preventing hepatitis B voluntary, not mandatory. No policy exists European Region and hepatitis C infection in health-care settings. on what to do with infected healthcare workers. Health-care workers are vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood.

* World Hepatitis Alliance member.

115 Austria

Österreichische Gesellschaft für Gastroenterologie und Hepatologie continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.10 Information was not provided on whether There are probably guidelines regarding this information the government has guidelines that address how food safety, which is very good in Austria. is accurate. hepatitis A and hepatitis E can be prevented Also, infection control reporting in the past through food and water safety. has been repeatedly successful in finding and controlling the rare outbreaks that have occurred.

5.4 Publicly funded treatment is available for Every Austrian resident who is insured (and even hepatitis B and hepatitis C. Information was not the ones who are not insured) is eligible for provided on who is eligible for this. The amount treatment including reimbursement. spent by the government on publicly funded treatment for hepatitis B and hepatitis C is not known.

××To our knowledge, 3.1 There is routine surveillance for viral hepatitis. There is an inefficient system, which has been this information There is a national surveillance system for the improved recently by shifting the reporting from is not accurate. following types of acute hepatitis: A, B, C, D and E, the physicians to the Virology Laboratories. and for the following types of chronic hepatitis: There is, however, no information on the clinical B, C and D. scenario available and no distinction between acute or chronic hepatitis possible. Also, this is not routine surveillance in a strict sense but just opportunistic surveillance, finding cases by chance if the treating physician decides to order a test.

3.3 Liver cancer cases and cases with HIV/ Cancer in general and HIV infections are hepatitis coinfection are registered nationally. registered nationally. I have never in the last The government publishes hepatitis disease 22 years in my practice seen a single monthly reports monthly. hepatitis disease report. If they are published, nobody of interest gets to see them.

5.1 Health professionals obtain the skills and The Austrian Guidelines are joint guidelines competencies required to effectively care for with the Germans as well as the Swiss and they people with viral hepatitis through schools for do of course contain recommendations about health professionals (pre-service education). how to treat HIV/hepatitis C coinfection. There are national clinical guidelines for the management of viral hepatitis, but they do not include recommendations for cases with HIV coinfection. There are national clinical guidelines for the management of HIV, which include recommendations for coinfection with viral hepatitis. European Region Chapter European 7:

116 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 5.5 The following drugs for treating hepatitis B We have all treatment options available, this information are on the national essential medicines list or which in addition to the ones listed also include is not accurate. subsidised by the government: interferon alpha, peginterferon, telbivudine, entecavir, telaprevir, lamivudine and tenofovir. The following drugs boceprevir. Sofosbuvir is available in Austria but for treating hepatitis C are on the national essential reimbursement is currently negotiated, so it is at medicines list or subsidised by the government: the moment only reimbursed for the most urgent interferon alpha and ribavirin. cases (approved on a case-by-case basis).

--We take no 2.2 The government collaborates with in country There might be a collaboration with the position regarding civil society groups to develop and implement its Austrian branch of the European Liver this statement. viral hepatitis prevention and control programme. Patients Association but there is definitely Information was not provided about the identity no collaboration with the Austrian Society of civil society partners. of Gastroenterology and Hepatology, the only professional medical association dealing with viral hepatitis. I have been Secretary General (4 years) and head of the liver disease working party (4 years) of this society and never had any contact with the Austrian government regarding viral hepatitis prevention and control.

4.2 The government has not established the goal That I do not know, but they offer nationwide of eliminating hepatitis B. hepatitis B vaccination to children and adolescents at least born after 1997, and screening for all mother-to-be, so there is a good programme that comes close to eradicating hepatitis B in native Austrians. This does not cover screening of immigrants, which is the true population at risk for hepatitis B in Austria.

Statement from ÖGGH regarding key In Austria, we do not have universal Since the largest number of infected hepatitis policy issues in Austria: screening for hepatitis C but there people in Austria belongs to the immigrant is opportunistic screening in many communities, at least voluntary screening Prevention of transmission is taken care hospitals at admission. Screening for for these people should be offered together of quite well in Austria: screening of blood elevated liver enzymes is done for all with awareness campaigns specifically products is universal and well controlled, male citizens at age 18 when examined targeting these groups. Screening of transmission in the hospital or other for eligibility for the military service prison inmates (even short-term inmates) health care settings is rare. Hepatitis B and followed up if enzymes are elevated. should be universally applied. vaccination is performed in all children For female residents, hepatitis B screening since 1997 (unless they actively refuse). is carried out during any pregnancy in the Once detected, laboratories are mandated The biggest source of transmission “mother-child-pass” examinations, which to transmit positive results of hepatitis B is intravenous drug use, but also here are coupled to financial incentives (child and hepatitis C testing to a central state

information campaigns and generous support after birth). No screening of any agency that makes sure individuals are 7: Chapter needle exchange programmes are organised sort is available for female informed of their diagnosis: so once available. In addition, screening is offered residents who never become pregnant. infection is detected, loss to follow-up at several low-barrier contact points for In a low-prevalence country for chronic is rare.

people who inject drugs (PWID). Since viral hepatitis like Austria (prevalence European Region awareness campaigns for safe sex are may be 0.5%), universal screening does being conducted in the context of HIV not seem to be cost-effective but screening transmission, this is also taking care of risk groups would be advisable. of hepatitis B transmission.

117 Belarus

Together against Hepatitis*

NGO – hepatitis patient group Minsk, Belarus http://by-hepatit.net/ http://www.antihep.by/

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Belarus reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 36.0% thought to not be accurate for 12.0% the government information for 52.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 3.1, 3.3, 4.1, 4.2, 4.5, 4.10, 5.2 and 5.5. 5.1, 5.3 and 5.4. 1.2, 1.3, 2.1, 2.2, 3.2, 3.4, 3.5, 4.3, 4.4, 4.6, 4.7, 4.8 and 4.9.

Survey comments from Together against Hepatitis:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.3 Liver cancer cases and cases with Statistics on viral hepatitis are not this information HIV/hepatitis coinfection are registered publicly available. is accurate. nationally. The government publishes hepatitis disease reports monthly and annually.

××To our knowledge, 5.1 Health professionals obtain the skills Awareness about viral hepatitis, especially about this information and competencies required to effectively care hepatitis C and modern approaches to treatment, is not accurate. for people with viral hepatitis through schools can be described as insufficient. Often health of health professionals (pre-service education), professionals (even infectious disease doctors) on-the-job training and post-graduate training. do not know that hepatitis C can be treated and There are national clinical guidelines for the advise their patients incorrectly about the cost, management of viral hepatitis. These guidelines success of treatment and the therapy itself. include recommendations for cases of HIV coinfection. This situation is typical for the provinces and small towns. Specialists from related health areas (maternity staff, dentists, therapists etc.) are very poorly informed about viral hepatitis. Despite the existence of well-designed and strict regulations, their implementation is weak.

5.3 People testing for both hepatitis B and hepatitis C Confidentiality is alleged. Patients report cases register by name; the names are kept confidential when infectionists call at home or at work and within the system. Hepatitis B and hepatitis C provide information to the family, colleagues tests are free of charge for all individuals and are and third parties without their knowledge. compulsory for members of some specific groups To get tested for hepatitis free of charge (PCR), but these groups were not identified. a doctor’s referral is needed.

5.4 Publicly funded treatment is available for hepatitis Patients with chronic hepatitis B and chronic B and C. Information was not provided on who is hepatitis C need to pay for the treatment eligible for publicly funded treatment for hepatitis B. from their own resources. Public medicine Publicly funded treatment for hepatitis C is available provides two first injections of pegylated only to people with acute infection(not those with interferon (dual therapy), doctor consultations chronic infection). Information was not provided and free blood tests during the therapy time on the amount spent by the government on such (on doctor’s referral). treatment for hepatitis B and hepatitis C. European Region Chapter European 7:

* World Hepatitis Alliance member.

118 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no 2.1 The government held events for World Hepatitis In Belarus, in 2012, the action took place mostly position regarding Day 2012. It has funded other viral hepatitis on the Internet. General information about viral this statement. public awareness campaigns since January 2011 hepatitis was presented on the website of the (Annex A). Centre for Hygiene and Epidemiology and some other medical institutions. Information was given about all viral hepatitis, without separating into A, B, C, D and E and without specific instructions for health workers and patients.

2.2 The government collaborates with the The target groups of the NGO Positive Movement following in-country civil society groups to develop are people living with HIV and people who use and implement its viral hepatitis prevention and drugs. The organisation’s activities are not control programme: NGO “Positive Movement” targeted specifically for hepatitis and do not and Belarusian Red Cross. cover other groups of patients. Belarusian Red Cross has no special programme for viral hepatitis either. In Belarus, hepatitis is captured only partially in the framework of HIV/AIDS programmes. Until April 2014, there were no NGOs in Belarus that dedicated their activities specifically to viral hepatitis.

3.5 Information was not provided on whether To our knowledge, there is no national public there is a national public health research agenda health research agenda for viral hepatitis. for viral hepatitis. Viral hepatitis serosurveys are conducted regularly; the target populations are people who inject drugs, men who have sex with men, pregnant women, people living with HIV, health-care workers, members of the military and prisoners. Information was not provided on when the last serosurvey was carried out.

4.6 There is a national policy on injection safety We have no information on the implementation in health-care settings. The policy recommends of this policy. single-use syringes for therapeutic injections. Single-use or auto-disable syringes, needles and cannulas are always available in all health-care facilities.

4.8 There is a national infection control policy This requirement exists, but there is no freely for blood banks. All donated blood units (including available information on its implementation.

family donations) and blood products nationwide 7: Chapter are screened for hepatitis B and hepatitis C. European Region

119 Belarus

Together against Hepatitis continued

Statement from Together against Officials should recognise the scale Evidence: Hepatitis regarding key hepatitis of the epidemic in the country. A national policy issues in Belarus: programme should be developed with Patients during three years (survey), the participation of patient NGOs. Patient reports from the patient web-forum, There is no national strategy for viral education about hepatitis is needed. research reports, materials from the hepatitis prevention. State regulations infection specialists’ conference. are badly implemented in the health care Regarding prevention of transmission, system. More informational work with stronger measures should be taken in this health care professionals, especially in field to implement legal requirements. the regions, is required. Ways to increase Providing materials in sufficient quantities the availability of hepatitis treatment (disposable gloves and instruments, should be found. Officials of the Ministry sterilisers) to all medical institutions of Health should be better informed about is required, especially in regions. the viral hepatitis situation in the country. European Region Chapter European 7:

120 Global Community Hepatitis Policy Report Belgium

Carrefour Hépatites*

NGO – hepatitis patient group Vaux-sur-Sûre, Belgium www.hepatites.be

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Belgium reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 64.0% thought to not be accurate for 36.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.4, 4.1, 4.2, 4.3, 4.6, 3.1, 3.2, 3.3, 3.5, 4.4, 4.5, 4.9, 5.3 and 5.4. 4.7, 4.8, 4.10, 5.1, 5.2 and 5.5.

Survey comments from Carrefour Hépatites:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.3 The government has a viral hepatitis prevention Hepatitis A and hepatitis B vaccination is free but this information and control programme that includes activities not compulsory for those aged 0–13 since 1992. is accurate. targeting the following specific populations: health-care workers (including health-care waste handlers), newborns and unvaccinated adolescents.

5.1 Health professionals obtain the skills and But no guidelines! competencies required to effectively care for people with viral hepatitis through schools of health professionals (pre-service education), on-the-job training and post-graduate training. There are national clinical guidelines for the management of viral hepatitis. These guidelines include recommendations for cases of HIV coinfection.

5.5 The following drugs for treating hepatitis B But refunds/reimbursements are limited and are on the national essential medicines list or restrictive – discriminatory. subsidised by the government: interferon alpha, pegylated interferon, lamivudine, adefovir dipivoxil, entecavir and tenofovir. The following drugs for treating hepatitis C are on the national essential medicines list or subsidised by the government: interferon alpha, pegylated interferon,

ribavirin, boceprevir and telaprevir. 7: Chapter European Region

* World Hepatitis Alliance member.

121 Belgium

Carrefour Hépatites continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 3.5 There is no national public health research There is never any “public” investigation in this information agenda for viral hepatitis. Viral hepatitis Belgium! There has been one initiative from is not accurate. serosurveys are conducted regularly; the target Schering-Plough (MSD) and two from the CHAC! population is the general population. The last serosurvey was carried out in 2006.

4.5 There is a specific national strategy and/or The second sentence is accurate. policy/guidelines for preventing hepatitis B and hepatitis C infection in health-care settings. Health-care workers are vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood.

Carrefour Hépatites did not provide a statement regarding key hepatitis policy issues in Belgium. European Region Chapter European 7:

122 Global Community Hepatitis Policy Report Belgium

Vlaams Hepatitis Contactpunt*

NGO – hepatitis patient group Sint Truiden, Belgium www.hepatitisc.be

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Belgium reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 84.0% thought to not be accurate for 12.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.2, 3.3, 3.4, 3.5, 4.2, 3.1, 4.1 and 5.3. 4.9. 4.3, 4.4, 4.5, 4.6, 4.7, 4.8, 4.10, 5.1, 5.2, 5.4 and 5.5.

Survey comments from Vlaams Hepatitis Contactpunt:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is no written national strategy or plan that A national strategy/plan is in progress. this information focuses exclusively or primarily on the prevention is accurate. and control of viral hepatitis.

1.2 There is no designated governmental A national reference centre is available unit/department responsible solely for (https://nrchm.wiv-isp.be) for laboratory activities. coordinating and/or carrying out viral hepatitis- related activities. It is not known how many people work full-time on hepatitis-related activities in all government agencies/bodies.

3.3 Liver cancer cases and cases with We have a national register of HIV containing HIV/hepatitis coinfection are registered nationally. hepatitis C coinfection information. The government publishes hepatitis disease reports annually.

4.10 It is not known whether the government The KCE (federal competence centre for has guidelines that address how hepatitis A healthcare) developed a study on Hepatitis A and hepatitis E can be prevented through food transmission. Guidelines are thus available for this and water safety. pathogen https://kce.fgov.be/sites/default/files/ page_documents/d20081027388.pdf.

××To our knowledge, 3.1 There is routine surveillance for viral hepatitis. The information in the first sentence is accurate. 7: Chapter this information There is a national surveillance system for the Regarding the second sentence, the information is not accurate. following types of acute hepatitis: A, B and C, is accurate for hepatitis B through the but not for any type of chronic hepatitis. notification system. The notification system also

includes hepatitis A but not hepatitis C. European Region

* World Hepatitis Alliance member.

123 Belgium

Vlaams Hepatitis Contactpunt continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 5.3 People testing for both hepatitis B and hepatitis C This is a question with multiple answers. HBV this information register by name; the names are kept confidential and HCV tests are free of charge. The register is not accurate. within the system. Hepatitis B and hepatitis C tests is not by name. are free of charge for all individuals and are not compulsory for members of any specific group.

Statement from Vlaams Hepatitis offered us an opportunity for feedback federal). This is a slowly progressing Contactpunt regarding key hepatitis and suggestions. The hepatitis C plan step which requires to convince different policy issues in Belgium: had shortcomings in the Belgian policy authorities. The coming elections restrain that needed to be solved. On the one these activities. The Belgian federal government has hand, it provided a thorough screening written a national plan for 2014-2018 of the risk groups, on the other hand it We hope that the national hepatitis C plan in collaboration with a group of hepatologists also had to approve make new medicines will be put into action this year anyway and governmental organisations. for the Belgian patients. Unfortunately, and we will be here on a regular basis The involvement of patients’ associations the plan still needs approval from the to remind the Ministers of Social Affairs was asked to read the proposals and this different authorities (regional and (federal government) of this urgent matter. European Region Chapter European 7:

124 Global Community Hepatitis Policy Report Bulgaria

HepActive*

NGO – hepatitis patient group Sofia, Bulgaria www.hepactive.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Bulgaria reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 36.0% thought to not be accurate for 40.0% the government information for 24.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 2.2, 4.2, 4.8, 5.1, 5.2, 5.4 and 5.5. 1.3, 2.1, 3.1, 3.2, 3.3, 3.4, 3.5, 4.1, 4.3, 4.5, 4.6, 4.7, 4.10 and 5.3. 4.4 and 4.9.

Survey comments from HepActive:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.2 The government has established the goal of The vaccination with vaccine against hepatitis B this information eliminating hepatitis B but does not have a specific has been mandatory since 1992. is accurate. timeframe for this.

××To our knowledge, 2.1 The government held events for World Hepatitis As far as we know, until now there is not any this information Day 2012 but has not funded other viral hepatitis government activity dedicated to World Hepatitis is not accurate. public awareness campaigns since January 2011. Day in any year.

3.1 There is routine surveillance for viral hepatitis. There is no routine surveillance of any type There is a national surveillance system for the of viral hepatitis (neither chronic nor acute). following types of acute hepatitis: A, B, C, D and E, but not for any type of chronic hepatitis.

--We take no 4.3 Nationally, 98.6% of newborn infants in a given The vaccination is mandatory but we cannot say position regarding recent year received the first dose of hepatitis B whether the given percentages are valid or not. this statement. vaccine within 24 hours of birth and 96% of one-year-olds (ages 12–23 months) in a given recent year received three doses of hepatitis B vaccine.

Statement from HepActive regarding key screening programmes, most of the especially for chronic hepatitis patients. hepatitis policy issues in Bulgaria: general practitioners are not familiar And last but not least – Bulgaria is on the with hepatitis – we need educational bottom when it comes to new treatments.

First of all, Bulgaria health policy programmes for them. We get those three or four years after 7: Chapter is not including ALT/AST in annual other European countries. screening tests. This is a cheap but During the treatment, the patient effective tool to determine people with needs to stay in hospital for three days

liver problems. Also, there are no free only for blood tests – we need some European Region screening laboratories, no long-term serious changes in our hospital policies,

* World Hepatitis Alliance member.

125 Bulgaria

National Association for Fighting Hepatitis – Hepasist*

NGO – hepatitis patient group Sofia, Bulgaria www.hepasist.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Bulgaria reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 64.0% thought to not be accurate for 32.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.4, 4.3, 4.5, 4.6, 3.2, 3.3, 3.5, 4.1, 4.4, 4.9, 4.10 and 5.3. 4.2. 4.7, 4.8, 5.1, 5.2, 5.4 and 5.5.

Survey comments from National Association for Fighting Hepatitis – Hepasist:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is no written national strategy or plan that Though there is no strategy thus far, there is this information focuses exclusively or primarily on the prevention already a written proposal and it is submitted is accurate. and control of viral hepatitis. to the Ministry of Health for adoption.

1.3 The government has a viral hepatitis prevention There is such an activity written in the hepatitis and control programme that includes activities plan submitted to the Ministry of Health. targeting the following specific population: health-care workers (including health-care waste handlers).

2.2 The government collaborates with the To our knowledge only Hepasist is involved in the following in-country civil society groups to develop working group. We do not know how and whether and implement its viral hepatitis prevention and Hepactive is involved in the work. control programme: Hepasist National Association to Fight Hepatitis and Hepactive Association to Fight Hepatitis.

3.1 There is routine surveillance for viral hepatitis. There is monitoring of cases, but there There is a national surveillance system for the is no register where this information is following types of acute hepatitis: A, B, C, D and E, officially stored. but not for any type of chronic hepatitis.

3.4 Hepatitis outbreaks are required to be reported It is possible to screen the population in a case to the government and are further investigated. of an epidemic outbreak, but this only applies There is adequate laboratory capacity nationally for hepatitis A. to support outbreak investigations and other surveillance activities for hepatitis A, hepatitis B, and hepatitis C, but not for hepatitis E. European Region Chapter European 7:

* World Hepatitis Alliance member.

126 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.3 Nationally, 98.6% of newborn infants in a given The programme is since 1992. this information recent year received the first dose of hepatitis B is accurate. vaccine within 24 hours of birth and 96% of one- year-olds (ages 12–23 months) in a given recent year received three doses of hepatitis B vaccine.

4.5 There is a specific national strategy and/or This is specially marked in the proposal policy/guidelines for preventing hepatitis B for the national hepatitis plan. and hepatitis C infection in health-care settings. Health-care workers are vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood.

5.2 The government does not have national This is also included and stressed policies relating to screening and referral to care in the hepatitis plan. for hepatitis B or hepatitis C.

5.4 Publicly funded treatment for hepatitis The drugs are available and the National Health Band hepatitis C is available to all people with Insurance Fund should have outlined their health insurance. Information was not provided expenditures on them in their annual budget. on the amount spent by the government on There is a fiscal report, but it is not accessible such treatment. for everyone.

××To our knowledge, 3.2 There are standard case definitions for In a case when someone died from cirrhosis this information hepatitis. Deaths, including from hepatitis, the autopsy says “death from cirrhosis” but is not accurate. are reported to a central registry. Less than 5% it is never specified whether it was caused of hepatitis cases are reported as “undifferentiated” by hepatitis and what kind. or “unclassified” hepatitis.

4.1 There is a national hepatitis A vaccination policy. In the case of an outbreak the government does not have the capacities to react. Should there be a crisis situation, they tend to turn to NGOs for assistance.

4.4 There is a national policy specifically targeting Since 2014, there is no more testing for pregnant mother-to-child transmission of hepatitis B (Annex B). women for hepatitis B. 7: Chapter European Region

127 Bulgaria

National Association for Fighting Hepatitis – Hepasist continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 5.3 People testing for both hepatitis B and The Ministry of Health only gives 500 tests for this information hepatitis C register by name; the names are kept free, though there is a lot more demand. There are is not accurate. confidential within the system. Hepatitis B and centres where these tests are administered but hepatitis C tests are not free of charge for all they end quickly and it is not clear why. individuals, but are free of charge for injecting drug users, men who have sex with men, prisoners and sex workers. Hepatitis B and hepatitis C tests are not compulsory for members of any specific group.

Statement from National Association for >> Institutions supporting the accessible for the patients; to support Fighting Hepatitis – Hepasist regarding development and implementation of the patient and professional organisations. key hepatitis policy issues in Bulgaria: the proposed national hepatitis plans; >> Media to provide unbiased coverage work on improving access to treatment of the developments in the field and National coordination is missing in for hepatitis and revaccination for to raise awareness among the general Bulgaria. The governmental structures hepatitis B; introducing plans for public of the dangers of hepatitis and receive partial information on acute hepatitis A vaccination for children benefits of early screening. hepatitis, and the information is and high-risk groups. spread by word-of-mouth. There are >> Doctors conducting diagnostics no follow-up data on what happens Altogether, we stress the lack of and treatment; put pressure on the to those diagnosed with acute hepatitis adequate data on hepatitis in Bulgaria government to develop a hepatitis and whether they receive treatment. and access to quality and timely register and later register new patients There are no specific data on mortality treatment and care. As mentioned in the system; raise awareness among from acute or chronic hepatitis. above, information is mainly spread their patients of the disease and the The responsibilities for conducting by word-of-mouth, which is based on need and benefits of early testing. screenings, diagnostics, treatment one’s perceptions of the environment. and continuous care services need to >> Patient organisations informal At any given moment there is no be clearly distributed among the relevant support for patients; presenting useful certainty of how many people are stakeholders. The government needs information in a user-friendly manner diagnosed, how many are in critical to take the leading role as a unifier of to the general public; advocating for condition, how many are on treatment all the stakeholders and needs to adopt the rights and interests of patients in and what type of treatment, and so and support the national hepatitis plan. regards to access to treatment and care; on. We observe and learn from the Regardless of the political majority and collating and sharing best-practice case good experiences and practices of the leadership in the country, the essence examples from the international scene. international community and do our of the plan should be preserved as a best to bring those good examples >> Industry to deliver new therapies long-term investment in social health. to Bulgaria. to the Bulgarian market; to make The roles of the stakeholders are treatment and medicines financially (as we see them): European Region Chapter European 7:

128 Global Community Hepatitis Policy Report Denmark

CHIP

Center for Health and Infectious Disease Research Copenhagen, Denmark www.chip.dk

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Denmark reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 68.0% thought to not be accurate for 24.0% the government information for 8.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 3.4, 4.1, 4.2, 1.2, 3.5, 4.5, 4.10, 5.1 and 5.2. 4.3 and 4.6. 4.4, 4.7, 4.8, 4.9, 5.3, 5.4 and 5.5.

Survey comments from CHIP:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.1 There is routine surveillance for viral hepatitis. Statens Serum Institute is responsible for this. this information There is a national surveillance system for the is accurate. following types of acute hepatitis: A, B and C, and for the following types of chronic hepatitis: B and C.

3.3 Liver cancer cases and cases with HIV/ This information is captured in different hepatitis coinfection are registered nationally. databases: liver cancer in “Cancerregistret” The government publishes hepatitis disease at Statens Serum Institute. The Serum Institute reports annually. also publishes an annual report on acute and chronic viral hepatitis diagnosed in the past year. There is a national database for chronic hepatitis B and C called DANHEP, which also has information on HIV co-infection.

4.2 The government has not established the goal Does eliminated mean no new HBV infections? of eliminating hepatitis B. Many HBV infections are “imported” by people from high prevalence countries. HBV cannot be eradicated completely in the individual person.

××To our knowledge, 3.5 There is no national public health research It’s correct that there is no national research this information agenda for viral hepatitis. Viral hepatitis agenda for viral hepatitis. National hepatitis is not accurate. serosurveys are conducted regularly; the target serosurveys have not been carried out. A local populations are people who inject drugs, pregnant survey in a specific part of Denmark (Funen) women and children of infected mothers. has been carried out. Information was not provided on when the last serosurvey was carried out. Chapter 7: Chapter

4.5 There is a specific national strategy and/or Sundhedsstyrelsen (Danish Health and Medicines European Region policy/guidelines for preventing hepatitis B Authority) recommends vaccination against HBV and hepatitis C infection in health-care settings. in healthcare workers with a significant risk of Health-care workers are vaccinated against HBV exposure, but to my knowledge few (if any?) hepatitis B prior to starting work that might offer free HBV vaccination. For example, at the put them at risk of exposure to blood. largest hospital in Denmark HBV vaccination is not offered to all who are at risk of HBV infection.

129 Denmark

CHIP continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 4.10 The government has guidelines addressing In the guidelines from Sundhedsstyrelsen this information how hepatitis A and hepatitis E can be prevented on prevention of viral hepatitis, prevention is not accurate. through food and water safety. of hepatitis A is described in detail, but this is not the case for hepatitis E, for which only distribution, natural history and diagnostics are described in a few lines.

5.1 Health professionals obtain the skills and The last statement on guidelines is correct. competencies required to effectively care for The knowledge and skills regarding viral people with viral hepatitis through schools hepatitis among Danish health care workers of health professionals (pre-service education), (doctors and nurses) are in general very limited. on-the-job training and post-graduate training. There are national clinical guidelines for the management of viral hepatitis, which include recommendations for cases with HIV coinfection.

5.2 The government does not have national Guidelines on who should be screened for HBV policies relating to screening and referral to care and HCV, and if positive, referral to specialist for hepatitis B or hepatitis C. department are described in Sundhedstyrelsen’s “Vejledning om HIV, HBV og HCV”.

--We take no 4.3 Nationally, 90% of newborn infants in a given Assume that they are children of an HBV infected position regarding recent year received the first dose of hepatitis B mother. I have not seen the Danish numbers, this statement. vaccine within 24 hours of birth and 64% of one- but they look likely to be correct. year-olds (ages 12–23 months) in a given recent year received three doses of hepatitis B vaccine.

4.6 There is a national policy on injection safety The last statement is correct. Unsure about in health-care settings, but it is not known what the first one. type of syringes it recommends for therapeutic injections. Single-use or auto-disable syringes, needles and cannulas are always available in all healthcare facilities.

Statement from CHIP regarding key than half of all drug users diagnosed with The Danish Ministry of Health (via hepatitis policy issues in Denmark: hepatitis C are followed by a specialist Sundhedsstyrelsen) has for many years hospital department. Studies from other published guidelines on who and how In Denmark most people are diagnosed countries have shown that decentralised to screen for viral hepatitis, but there with hepatitis C by the general practitioners (in the centres for drug abusers) has been no evaluation of awareness, or in the municipal centres for drug evaluation and treatment of hepatitis C adherence and cost-effectiveness of these users. Further evaluation of the infection have in general been positive. It is recommendations. This is pertinent since and possibly HCV treatment is the recommended that similar research based it is estimated that only about half all responsibility of hospital infectious initiatives are developed in Denmark HBV and HCV infected in Denmark have disease or gastroenterology departments. and supported economically by national been diagnosed. Again, nationally funded This physical barrier is often difficult to and municipal funds. research based studies should further overcome especially for former or current investigate this. drug users. It is estimated that fewer European Region Chapter European 7:

130 Global Community Hepatitis Policy Report Denmark

Roskilde Sygehus

Medical society Roskilde, Denmark

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Denmark reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 96.0% thought to not be accurate for 4.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 3.4, 3.5, 5.2. 4.1, 4.2, 4.3, 4.4, 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.3, 5.4 and 5.5.

Roskilde Sygehus did not provide any comments about survey items.

Statement from Roskilde Sygehus regarding key hepatitis policy issues in Denmark:

Our government should do more to support vulnerable youth, e.g. children who lose one or both of their parents, so that they do not become criminals, drug abusers and hepatitis-C infected. This should be done in Denmark, but we should also support this work in other countries. Chapter 7: Chapter European Region

131 Denmark

Sex & Samfund (Danish Family Planning Association)

NGO – Sexual and reproductive health and rights advocacy organisation Copenhagen, Denmark www.sexogsamfund.dk

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Denmark reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 68.0% thought to not be accurate for 4.0% the government information for 28.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.3, 2.1, 2.2, 3.1, 3.3, 3.4, 4.1, 4.2, 4.4, 4.3. 1.2, 3.2, 3.5, 4.6, 4.7, 5.1 and 5.5. 4.5, 4.8, 4.9, 4.10, 5.2, 5.3 and 5.4.

Survey comments from Sex & Samfund (Danish Family Planning Association):

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 4.3 Nationally, 90% of newborn infants in a given Only as a temporary change in the national children’s this information recent year received the first dose of hepatitis B vaccination programme because of a shortage in the is not accurate. vaccine within 24 hours of birth and 64% of one- original DiTeKiPolHib vaccine. Otherwise it is only year-olds (ages 12–23 months) in a given recent children of women in specific target groups that are year received three doses of hepatitis B vaccine. offered the hepatitis B vaccine.

Sex & Samfund did not provide a statement regarding key hepatitis policy issues in Denmark. European Region Chapter European 7:

132 Global Community Hepatitis Policy Report Estonia

Estonian Society of Gastroenterology

Medical society Tartu, Estonia

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Estonia reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 68.0% thought to not be accurate for 28.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.2, 3.5, 4.2, 4.3, 4.4, 3.1, 3.3, 3.4, 5.1, 5.2, 5.4 and 5.5. 4.1. 4.5, 4.6, 4.7, 4.8, 4.9, 4.1 and 5.3.

Survey comments from the Estonian Society of Gastroenterology:

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 3.1 There is routine surveillance for viral hepatitis. Chronic viral hepatitis B and hepatitis C this information There is a national surveillance system for the surveillance only specific population groups is not accurate. following types of acute hepatitis: A, B, C, D and E, (for example pregnant women, prisoners, etc.), and for the following types of chronic hepatitis: blood donors screening for hepatitis B and B, C and D. hepatitis C.

3.3 Liver cancer cases are not registered nationally, Hepatocellular cancer cases are but cases with HIV/hepatitis coinfection are. The registered nationally. government publishes hepatitis disease reports monthly and annually.

3.4 Hepatitis outbreaks are required to be reported Hepatitis E surveillance is possible also. to the government and are further investigated. There is adequate laboratory capacity nationally to support outbreak investigations and other surveillance activities for hepatitis A, hepatitis B and hepatitis C, but not for hepatitis E.

5.1 Health professionals obtain the skills and National clinical guidelines for the management competencies required to effectively care for of hepatitis B and hepatitis C include people with viral hepatitis through schools of recommendations for coinfection cases (HCV/ health professionals (pre-service education). HIV, HBV/HCV, HBV/HIV). There are national clinical guidelines for the management of viral hepatitis, but it is not known whether they include recommendations for cases with HIV coinfection. Chapter 7: Chapter

5.2 The government has national policies relating Only for screening for hepatitis B. European Region to screening and referral to care for hepatitis B and hepatitis C.

133 Estonia

Estonian Society of Gastroenterology continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 5.4 Publicly funded treatment for hepatitis B With limitations for hepatitis B and hepatitis C, this information and hepatitis C is available to people covered by not all available drugs are 100% reimbursed. is not accurate. the Estonian Health Insurance Fund. Information was not provided on the amount spent by the government on such treatment.

5.5 The following drugs for treating hepatitis B For hepatitis B, peginterferon alpha2a is 100% are on the national essential medicines list or reimbursed, entecavir is only 50% reimbursed. subsidised by the government: interferon alpha For hepatitis C, peginterferon alpha 2a and 2b, and pegylated interferon. The following drugs for and ribavirin 100% reimbursed, telaprevir and treating hepatitis C are on the national essential boceprevir are reimbursed 100% only for patients medicines list or subsidised by the government: with advanced fibrosis (F3-F4). interferon alpha, pegylated interferon and ribavirin.

The Estonian Society of Gastroenterology did not provide a statement regarding key hepatitis policy issues in Estonia. European Region Chapter European 7:

134 Global Community Hepatitis Policy Report France

Association Française pour l’Etude du Foie

Medical society Paris, France www.afef.asso.fr

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of France reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 76.0% thought to not be accurate for 24.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 1.3, 2.2, 3.2, 4.1, 4.2, 4.3, 4.4, 4.5, 2.1, 3.1, 3.3, 3.4, 3.5 and 5.3. 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.2, 5.4 and 5.5.

Association Française pour l’Etude du Foie (AFEF) did not provide any comments about survey items.

Statement from Association Française pour l’Etude regarding key hepatitis policy issues in France:

Waiting for the first national report on hepatitis B and hepatitis C published on 19 May 2014 by ANRS-AFEF. Chapter 7: Chapter European Region

135 France Institut de Santé Publique, d’Epidémiologie et de Développement, Bordeaux School of Public Health

Academic institution Bordeaux, France www.isped.u-bordeaux2.fr

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of France reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 76.0% thought to not be accurate for 20.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.2, 3.1, 3.2, 3.4, 3.5, 4.2, 4.4, 3.3, 4.1, 4.3, 4.7 and 5.3. 2.1. 4.5, 4.6, 4.8, 4.9, 4.10, 5.1, 5.2, 5.4 and 5.5.

The Institut de Santé Publique, d’Epidémiologie et de Développement (ISPED) did not provide any comments about survey items.

Statement from ISPED regarding viral What should be the government’s What evidence exists to support your hepatitis screening, care and treatment role in bringing about these changes? organisation’s viewpoint? in France: What responsibilities should the >> ANRS website. government have? What are the greatest problems with >> Co-funding within a public/ this component of the national response private partnership. to viral hepatitis? >> Lack of data and evidence in the field. What should be the roles and responsibilities of other stakeholders What needs to change? at the community, national and international levels? >> Organisation of information system (ongoing with HEAPTER study cohort). >> Collaboration (see above). European Region Chapter European 7:

136 Global Community Hepatitis Policy Report Georgia

Georgian Harm Reduction Network

NGO – advocacy, prevention services and patient support groups Tbilisi, Georgia www.hrn.ge

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Georgia reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 4.0% thought to not be accurate for 40.0% the government information for 56.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 5.1. 1.1, 1.3, 2.1, 2.2, 3.4, 3.5, 5.2, 5.3, 5.4 1.2, 3.1, 3.2, 3.3, 4.1, 4.2, 4.3, 4.4, 4.5, 4.6, and 5.5. 4.7, 4.8, 4.9 and 4.10.

Survey comments from the Georgian Harm Reduction Network:

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 1.1 There is no written national strategy or plan that Written national programme has been submitted this information focuses exclusively or primarily on the prevention to the Ministry of Health in August 2013. In March is not accurate. and control of viral hepatitis. 2014, three-day workshop was dedicated to elaboration of the action plan.

1.3 The government does not have a viral hepatitis Control programme (including treatment) running prevention and control programme that includes in prison system since March 1 2014 (adopted activities targeting specific populations. in June 2013).

2.1 The government held events for World Hepatitis This is Georgian Harm Reduction Network campaign Day 2012 but has not funded other viral hepatitis that runs since 2011. We do not know of government- public awareness campaigns since January 2011. organised events.

2.2 The government collaborates with the Formal partners of government are not the following in-country civil society groups to develop organisations mentioned in the governmental and implement its viral hepatitis prevention account but: Georgian Harm Reduction Network, and control programme: Bemoni Public Union, Georgian Community Advisory Board, Health Centre for Information and Counseling on Research Union, Medecins du Monde–France, Reproductive Health Tanadgoma, and Curatio Open Society Foundations. International Foundation.

3.4 Hepatitis outbreaks are required to be reported There might be a capacity, but this is not what to the government and are further investigated. government is doing. We also doubt that reported There is adequate laboratory capacity nationally cases are further investigated. to support investigation of viral hepatitis outbreaks 7: Chapter and other surveillance activities. European Region

3.5 There is no national public health research Georgian National Centre for Disease Control agenda for viral hepatitis. Viral hepatitis and Public Health together with US Centres serosurveys are not conducted regularly. for Disease Control (CDC) and CDC Foundation are putting together study design for updated prevalence study.

137 Georgia

Georgian Harm Reduction Network continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 5.2 The government has national policies relating In 2011–2012, national screening centre conducted this information to screening and referral to care for hepatitis B HCV screening and no referral was practiced. Even is not accurate. and hepatitis C. PCR tests were not conducted. Which means that those screened are not diagnosed.

5.3 People testing for both hepatitis B and hepatitis Anti-HCV tests are available in army screening C register by name; the names are kept confidential programme. Global Fund-funded interventions within the system. Hepatitis B and hepatitis C offer free anti-HCV to people who inject drugs. tests are not free of charge for all individuals, Medecins du Monde–France also covers people but they are free of charge for pregnant women who inject drugs. and blood donors. Hepatitis B and hepatitis C tests are compulsory for blood donors.

5.4 Publicly funded treatment is not available Global Fund funding is incorporated in state for hepatitis B or hepatitis C. programmes. Therefore we can conclude that HIV coinfected patients are treated (110 per year). Also prison treatment programme will treat 1,000 prisoners in two years.

5.5 The following drugs for treating hepatitis B We have inquired about the Essential Medicines are on the national essential medicines list or List but did not get it from the Georgian National subsidised by the government: interferon alpha, Centre for Disease Control and Public Health or pegylated interferon, lamivudine, adefovir dipivoxil from the Ministry of Health. They say there is a and tenofovir. The following drugs for treating list, but we cannot find it. Even if there were, at the hepatitis C are on the national essential medicines moment nothing is subsidised by government. list or subsidised by the government: interferon alpha, pegylated interferon, ribavirin, boceprevir and telaprevir.

Statement from the Georgian Harm What should be the government’s What evidence exists to support your Reduction Network regarding viral role in bringing about these changes? organisation’s viewpoint? hepatitis screening, care and treatment What responsibilities should the in Georgia: government have? >> National treatment programme document What are the greatest problems with this >> Everything is written and developed. >> Studies component of the national response to There should be commitment from viral hepatitis? the government that they will make >> Accounts in media, when government relevant budget allocations for commits to universal access of HCV >> Treatment programme is drafted, treatment of patients with pegylated treatment etc. budgeted, management is modelled, interferon alpha 2A and alpha 2B and >> Public procurement tender and costs are calculated. Only thing left direct engagement in new direct-acting documentations and decision minutes is to adopt and fund this programme. antiviral price negotiations. Instead the Georgian government talks about international response and donor What should be the roles and money investments in elimination responsibilities of other stakeholders programme. at the community, national and international levels? What needs to change? >> Patient groups and NGOs collaborate >> The Georgian government needs to with international counterparts allocate around EUR 5 million in order to ensure non-discrimination to screen 5,000 people and treat 2,400 inclusion of the patients in treatment European Region Chapter European 7: patients during the first year. And then programmes. These stakeholders also scale up the treatment. conduct treatment literacy activities.

138 Global Community Hepatitis Policy Report Germany

Deutsche Leberhilfe e.V.*

NGO – hepatitis patient group (addresses all liver diseases) Cologne, Germany www.leberhilfe.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Germany reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 92.0% thought to not be accurate for 8.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.2, 3.4, 3.5, 4.1, 4.2, 3.3 and 5.2. 4.3, 4.4, 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.3, 5.4 and 5.5.

Survey comments from Deutsche Leberhilfe e.V.:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 2.2 The government does not collaborate The government has started after we have this information with in-country civil society groups to develop produced a national strategy paper. We are now is accurate. and implement its viral hepatitis prevention in first discussion with representatives of the and control programme. Ministry of Health.

3.2 There are standard case definitions for It is true that there is a central registry but in hepatitis. Deaths, including from hepatitis, real life it is not working well. So we do not have are reported to a central registry. Information in Germany a very correct overview of hepatitis- was not provided on the percentage of related mortality. hepatitis cases reported as “undifferentiated” or “unknown” hepatitis.

4.5 There is a specific national strategy and/ Yes, for those who are employed by a hospital, or policy/guidelines for preventing hepatitis B vaccination is reimbursed but not very often and hepatitis C infection in health-care settings. proactively offered. Those who are not hospital Health-care workers are vaccinated against employees (e.g., cleaning staff) have difficulties hepatitis B prior to starting work that might put to get vaccination reimbursed or to be informed. them at risk of exposure to blood. Hepatitis B vaccination is also recommended for health-care waste handlers.

5.1 Health professionals obtain the skills and But hepatitis is only a minor little part competencies required to effectively care for in the education in university. people with viral hepatitis through schools of health professionals (pre-service education)

and on-the-job training. There are national clinical 7: Chapter guidelines for the management of viral hepatitis, which include recommendations for cases with HIV coinfection. European Region

* World Hepatitis Alliance member.

139 Germany

Deutsche Leberhilfe e.V. continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 3.3 Liver cancer cases are registered nationally, To our knowledge there are in some counties liver this information but cases with HIV/hepatitis coinfection are not. cancer registries but not a proper national one. is not accurate. The government publishes hepatitis disease As far as I know, only two counties out of 16 have reports annually. good registries.

5.2 The government has national policies relating We are not aware that there is a hepatitis B to screening and referral to care for hepatitis B, screening policy in place. Vaccination yes, but not for hepatitis C. but not screening.

Statement from Deutsche Leberhilfe e.V. Ministry of Health that there is a high need from highly endemic countries. The BzGA regarding key hepatitis policy issues of individualised awareness strategies for (Bundeszentrale für gesundheitliche in Germany: better prevention and better diagnosis. Aufklärung) claims they run programmes but in fact NGOs like Deutsche Leberhilfe, National coordination. At this time, Evidence-based policy and data Aidshilfe or Leberstiftung are the only national coordination is not good. for action. The Robert Koch Institute ones who roll out prevention programmes. The German national hepatitis action (a central scientific institution serving Everything is paid by private donations group initiative (including the leading the Federal Ministry of Health) has started and with no financial support from physicians and NGOs but not government several minor projects to have better data. the government. representatives) has developed an action/ But although the first publications appeared strategy paper which was launched in 2013 in 2013, there have been no follow-up Screening, care and treatment. Of all and presented to the Ministry of Health. efforts to initiate programmes, which are hepatitis cases in Germany, a maximum One of the recommendations is to create a especially needed for high-risk groups. of 25% are diagnosed. Out of this only national hepatitis task force to coordinate 20% have received treatment. The total hepatitis-related activities and implement Prevention of transmission. The highest treatment rate is less than 5%. Because as needed strategies. incidence groups in Germany for hepatitis mentioned above only private initiatives C are people who inject drugs and men care for more screening there is no Awareness-raising, partnerships who have sex with men. However, expectation to increase this number. and resource mobilisation. no prevention programmes have been On the other hand we have excellent Awareness strategies in the different established for either group (e.g., harm physicians in clinic and private sector for hepatitis risk groups is key but not been reduction in prison). Also, regarding all hepatitis cases. The treatment success started by the government. In vain we hepatitis B, there are no specific rate is close to pivotal clinical studies. have discussed several times with the programmes for e.g. migrants coming European Region Chapter European 7:

140 Global Community Hepatitis Policy Report Germany

Deutsche Leberstiftung/German Liver Foundation

Foundation Hannover, Germany www.deutsche-leberstiftung.de

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Germany reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 72.0% thought to not be accurate for 24.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.3, 2.1, 3.1, 3.2, 3.4, 4.3, 4.4, 4.5, 4.6, 1.2, 2.2, 3.3, 4.1, 4.2 and 5.2. 3.5. 4.7, 4.8, 4.9, 4.10, 5.1, 5.3, 5.4 and 5.5.

Survey comments from the Deutsche Leberstiftung/German Liver Foundation:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.1 There is routine surveillance for viral hepatitis. No differentiation between acute and chronic this information There is a national surveillance system for the hepatitis C. is accurate. following types of acute hepatitis: A, B, C, D and E, and for chronic hepatitis C.

5.5 The following drugs for treating hepatitis B Outdated – Sofosbuvir is available. are on the national essential medicines list or subsidised by the government: interferon alpha, pegylated interferon, lamivudine, adefovir dipivoxil, entecavir, telbivudine and tenofovir. The following drugs for treating hepatitis C are on the national essential medicines list or subsidised by the government: interferon alpha, pegylated interferon, ribavirin, boceprevir and telaprevir.

The Deutsche Leberstiftung/German Liver Foundation did not provide a statement regarding key hepatitis policy issues in Germany. Chapter 7: Chapter European Region

141 Greece

Hellenic Foundation of Gastroenterology and Nutrition

Private foundation Athens, Greece www.eligast.gr

SURVEY HIGHLIGHTS

The Government of Greece did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore the Hellenic Foundation of Gastroenterology and Nutrition could not comment on government information for this report.

The organisation provided the following There are barriers not only to screening, There is a delay in the availability and general statement regarding hepatitis but also to patients’ initial evaluation, reimbursement of new [viral hepatitis screening, care and treatment in Greece: as no PCR tests for hepatitis B or treatment regimens]. Even when the new hepatitis C (HBV DNA, HCV RNA, agents may be available, they are only There is no national screening HCV genotype) are reimbursed. reimbursed through a bureaucratic process policy for viral hepatitis, not even based on approval for individual patients. official recommendations from any governmental body. European Region Chapter European 7:

142 Global Community Hepatitis Policy Report Greece

Hellenic Liver Association ‘Prometheus’*

NGO – hepatitis patient group Athens, Greece http://helpa-prometheus.gr/

SURVEY HIGHLIGHTS

The Government of Greece did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore the Hellenic Liver Association “Prometheus” could not comment on government information for this report.

The organisation provided the following Evidence-based policy and data On the other hand, the Greek CDC has general statement regarding key hepatitis for action. In Greece, unlike other countries implemented awareness campaigns for policy issues in Greece: of the European Union, there are no HIV. Unfortunately, hepatitis has been representative epidemiological studies neglected as a disease. Prevention of transmission. of the population that could give us valid Unfortunately, in Greece there is an information about the state of health There should be an annual effort to have increase in the prevalence of viral hepatitis, of citizens. NGOs work in cooperation with the Greek especially among vulnerable groups. CDC. All related institutions should implement The only effective measure was the During the last three months, the National awareness campaigns so as during the whole establishment of compulsory vaccination Organization of Health Services in Greece year media should constantly broadcast in newborns in 1987. Furthermore, since 1992 in cooperation with the National Technical hepatitis awareness messages. there has been [screening of blood products] University of Athens and the University which has prevented the transmission of Peloponnese started a registry project. of hepatitis C through transfusions. They will create a register tracing all patients living with hepatitis B and C, and will try In addition, according to the annual report to calculate the cost of their treatment. of the National Centre for Documentation and Information on Drugs, there has Furthermore, the Medical School of Athens been an increase in the prevalence of in collaboration with all of the medical Hepatitis C among people who inject schools of Greece and Panteion University drugs (69.3% in 2011 to 73.4% in 2012). will start a national epidemiological study In addition, according to the same report, of hepatitis B and hepatitis C. The study in 2012 only 81 people who inject drugs will be conducted on a random sample (PWID) got vaccinated for Hepatitis A, of 6,000 people aged 18. and 173 for hepatitis B. Awareness-raising, partnerships Also, the increase of HIV prevalence and resource mobilisation. Activities in 2010 among PWID added an extra focused on increasing awareness about problem, since 99% of the newly infected viral hepatitis among policy-makers, HIV cases had already been diagnosed health professionals, and the public with hepatitis C. have only been conducted by NGOs. Unfortunately, government has Unfortunately, the increase in not implemented awareness campaigns prevalence among PWID is the result or other similar actions. of underperforming harm reduction programmes. The government does Disappointing is the fact that the not seem to “invest” in harm reduction department of hepatitis within the programmes. Waiting lists in substitution Greek Centre for Disease Control (CDC) programmes remain extremely high – (KEELPNO) lacks funding. The Greek CDC, 2.5 years in Athens. Needle exchange which is the most acceptable and well- is very poor. Approximately, 400,000 known institution, and the one responsible syringes have been distributed during for implementing national awareness the past year, whereas the actual campaigns for hepatitis, has not carried need is approximately 2,000,000. out any related activities.

There are no drug consumption rooms 7: Chapter in Athens or other facilities that promote safe injection. European Region

* World Hepatitis Alliance member.

143 Hungary

Májbetegekért Alapítvány*

Foundation Budapest, Hungary www.majbeteg.hu

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Hungary reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 88.0% thought to not be accurate for 12.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 1.3, 2.2, 3.1, 3.2, 3.3, 3.4, 3.5, 4.1, 2.1, 4.2 and 5.5. 4.3, 4.4, 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3 and 5.4

Survey comments from the Májbetegekért Alapítvány:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.2 There is no designated governmental unit/ There are 30 hepatitis centrums in Hungary, this information department responsible solely for coordinating where hepatitis-infected patients are is accurate. and/or carrying out viral hepatitis- related being treated. activities. It is not known how many people work full-time on hepatitis-related activities in all government agencies/bodies.

2.2 The government collaborates with the The correct name of the foundation following in-country civil society group to develop is Májbetegekért Alapítvány (Foundation and implement its viral hepatitis prevention and for Patients with Liver Disease). control programme: Májmoly Foundation.

3.3 Liver cancer cases are registered nationally, The government does not publish hepatitis but cases with HIV/hepatitis coinfection are not. disease reports weekly. The government publishes hepatitis disease reports weekly.

4.9 It is not known whether there is a national There is not a national policy relating to the policy relating to the prevention of viral hepatitis prevention of viral hepatitis among people among people who inject drugs. who inject drugs.

5.2 It is not known whether the government has The government does not have national policies national policies relating to screening and referral relating to screening and referral to care for to care for hepatitis B or hepatitis C. hepatitis B or hepatitis C. European Region Chapter European 7:

* World Hepatitis Alliance member.

144 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.4 Publicly funded treatment is available for Treatment for hepatitis B is available for this information hepatitis B and hepatitis C, but information was everybody, pegilated interferon + ribavirin. is accurate. not provided on who is eligible for such treatment. Treatment for hepatitis C is available for almost The amount spent by the government on publicly everybody. Direct-acting antiviral treatment funded treatment for hepatitis B and hepatitis C for hepatitis C is based on Priority Index which is not known. counted in the National Hepatitis Registry (www.hepreg.hu).

××To our knowledge, 2.1 It is not known whether the government held The government had not held events for this information events for World Hepatitis Day 2012 or has funded World Hepatitis Day, but in Budapest three is not accurate. other viral hepatitis public awareness campaigns organisations, Májbetegekért Alapítvány, ÖVEM since January 2011. and VIMOR (one foundation and two patient associations) have organised the Hungarian Hepatitis Day together since 2011.

4.2 The government has not established the goal There is a hepatitis B vaccination policy. of eliminating hepatitis B. Every child born after 1986 gets the vaccination at age 14.

5.5 It is not known whether any drug for treating National health insurance is financing hepatitis B or hepatitis C is on the national essential the treatment. medicines list or subsidised by the government.

Májbetegekért Alapítvány did not provide a statement regarding key hepatitis policy issues in Hungary. Chapter 7: Chapter European Region

145 Israel

Hetz – Israel Association for the Health of the Liver*

NGO – hepatitis patient group Kibbutz Tzora, Israel www.hetzliver.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Israel reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 48.0% thought to not be accurate for 52.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.2, 3.5, 4.1, 4.2, 4.3, 4.5, 4.6, 4.7, 4.8, 1.1, 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 3.4, 4.4, 4.9, 5.1, 5.2 and 5.5. 4.10, 5.3 and 5.4.

Survey comments from Hetz – Israel Association for the Health of the Liver:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.2 The government has not established the goal There is a vaccination plan for hepatitis B this information of eliminating hepatitis B. but not a screening plan. is accurate.

××To our knowledge, 4.4 There is a national policy specifically targeting The Hetz Association is struggling for this this information mother-to-child transmission of hepatitis B (Annex B). in the parliament. is not accurate.

4.9 There is a national policy relating to the The Hetz Association is working on this issue. prevention of viral hepatitis among people who inject drugs.

Statement from Hetz – Israel Association >> The government’s role is to adopt, >> Physicians should agree on the optimal for the Health of the Liver regarding key fund and implement a national plan for care path for patients, including what hepatitis policy issues in Israel: eradication of hepatitis. The government the role of the family physician is, should (1) appropriately fund the and other health professionals. The greatest problem is the lack of implementation of the plan, starting a national plan for the eradication with screening of at-risk populations, Evidence supporting our viewpoint: of hepatitis, which includes a national (2) formally appoint a person whose screening programme that focuses role will be to lead coordination of >> New local analysis proves hepatitis C on screening at-risk populations. the implementation, (3) work closely screening is cost-effective. with the patient association and the physician association in drafting the >> The viral time-bomb: Local What needs to change? plan and implementing it, (4) formally hepatologists agree that hepatitis C support World Hepatitis Day by complications will increase steeply >> The adoption and funding for initiating activities and campaigns to in the next five to ten years, which implementation of a national plan raise awareness about the importance of will lead to a steep increase in health for eradicating hepatitis by the being tested and treated, (5) financially expenditure on cirrhosis, liver cancer Israeli government, which should support the patient association. and liver transplants. mainly include: (1) the establishment of a national hepatitis registry, (2) >> New parliamentary research report screening programme, (3) programme Other roles and responsibilities: supports compensation of patients for eradicating hepatitis in prisons, who acquired the virus in government (4) programme focusing on people >> Parliament should be more active in health facilities. who inject drugs, (5) clear measures addressing hepatitis, passing relevant >> Free testing offered during World of success such as increasing the laws (such as compensation for patients Hepatitis Day 2013 resulted in many number of diagnosed patients and who acquired the virus in government newly diagnosed patients – proving increasing the number of patients hospitals) and demanding that the value of media campaigns and receiving treatment. government acts vigorously to eradicate it.

European Region Chapter European 7: accessible testing services.

* World Hepatitis Alliance member.

146 Global Community Hepatitis Policy Report Italy

Associazione EpaC*

NGO – hepatitis patient group Vimercate, Italy www.epac.it

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Italy reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 72.0% thought to not be accurate for 28.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.2, 2.1, 3.1, 3.4, 3.5, 4.1, 4.2, 4.3, 4.4, 4.5, 1.1, 1.3, 2.2, 3.2, 3.3, 4.9 and 5.3. 4.6, 4.7, 4.8, 4.10, 5.1, 5.2, 5.4 and 5.5.

Survey comments from Associazione EpaC:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.2 There is no designated governmental unit/ There is just a department taking care this information department responsible solely for coordinating of prevention of infectious diseases. is accurate. and/or carrying out viral hepatitis-related activities. Information was not provided on how many people work full-time on hepatitis-related activities in all government agencies/bodies.

2.1 The government held events for World Hepatitis To be more clear and honest, the government Day 2012 but has not funded other viral hepatitis never take any hepatitis public awareness public awareness campaigns since January 2011. activity and they held events for World Hepatitis Day just under pressure of patient association and scientific associations. Also because World Hepatitis Day has not yet been officially approved by any Italian government although we have asked for this several times.

3.1 There is routine surveillance for viral hepatitis. Yes there is only a registry for acute There is a national surveillance system for the hepatitis, but not all local health district following types of acute hepatitis: A, B, C, D and E, departments adhere to this system. In any case, but not for any type of chronic hepatitis. this surveillance do not provide any information on the real number of patients we have with hepatitis B and hepatitis C, how many new diagnoses each year, and so on. It is a very limited source of information.

4.2 The government has not established the goal But we have a good vaccination programme.

of eliminating hepatitis B. 7: Chapter

4.10 The government has guidelines that address Maybe they have, but we should consider European Region how hepatitis A and hepatitis E can be prevented whether those guidelines are known by citizens. through food and water safety. To our knowledge, there are no active efforts to circulate the information.

* World Hepatitis Alliance member.

147 Italy

Associazione EpaC continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.1 Health professionals obtain the skills and Skill and competence are also provided by the this information competencies required to effectively care for people scientific associations. is accurate. with viral hepatitis through schools of health professionals (pre-service education) and postgraduate training. Information was not provided on whether there are national clinical guidelines for the management of HIV, which include recommendations for coinfection with viral hepatitis.

5.4 Publicly funded treatment is available We confirm, but of course access to treatment for hepatitis B and hepatitis C. Information was is another story. not provided regarding who is eligible for this. Information was not provided on the amount spent by the government on publicly funded treatment for hepatitis B and hepatitis C.

5.5 The following drugs for treating hepatitis B are It is time to add sofosbuvir. on the national essential medicines list or subsidised by the government: interferon alpha, pegylated interferon, lamivudine, adefovir dipivoxil, entecavir, telbivudine and tenofovir. The following drugs for treating hepatitis C are on the national essential medicines list or subsidised by the government: interferon alpha, pegylated interferon, ribavirin, boceprevir and telaprevir.

××To our knowledge, 1.1 There is no written national strategy or plan that Partially true. In fact there is a strategy/ this information focuses exclusively or primarily on the prevention plan ready, written by a selected group of is not accurate. and control of viral hepatitis. stakeholders, but not yet approved by the Minister of Health. We have been waiting for approval for several months

1.3 The government has a viral hepatitis prevention Government does not have a unique hepatitis and control programme that includes activities control programme. However, many of the targeting the following specific populations: health- activity mentioned are included in other plans care workers (including health-care waste handlers), and specific laws, i.e., the drug users strategy, people who inject drugs, prisoners, partners of vaccination strategy, travellers to hepatitis carriers of HBsAg and hepatitis C virus, people B endemic areas, people with haemophilia. cohabiting with carriers of HBsAg or hepatitis C But some time are not systematic activities virus, people undergoing multiple blood transfusions, if we look at the local level (regions) and in people with haemophilia, people undergoing any case are not included in a unique hepatitis haemodialysis, people with chronic skin lesions of control programme. the hands (eczema, psoriasis), travellers to hepatitis B-endemic areas, police officers, firefighters, public officials and garbage disposal workers. European Region Chapter European 7:

148 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 2.2 The government does not collaborate They started to collaborate beginning last this information with in-country civil society groups to develop year. But the impression is that they cooperate is not accurate. and implement its viral hepatitis prevention in everything that does not imply costs (like and control programme. to have a strategic plan) that have no cost for government because it is a piece of paper. They stop the cooperation when it is time to put money into the plan and/or approve everything have a cost.

3.2 There are standard case definitions for This is unclear. By the way, hepatitis deaths hepatitis. Deaths, including from hepatitis, are not well calculated because we need to sum are reported to a central registry. In response to a up the deaths from hepatocellular carcinoma, question asking what percentage of hepatitis cases cirrhosis, post-transplant, that means the are reported as “undifferentiated” or “unclassified”, consequences and complications of hepatitis. the following information was provided: incidence And from our calculation, we have at least 10,000 rate/100 000 of unclassified hepatitis: 0.1. deaths per year just for hepatitis C.

3.3 Liver cancer cases and cases with HIV/ To my knowledge, new cases of liver cancer hepatitis coinfection are not registered nationally. and coinfection are not reported (there are just The government publishes hepatitis disease estimations) but are reported the death each four reports annually. years of the liver cancer mortality. I have never seen a hepatitis disease report from government. Very curious to see what this means regarding a “hepatitis disease report.”

4.9 There is a national policy relating to the This is a very vague statement. Which prevention prevention of viral hepatitis among people policy? If we refer to the screening they forgot who inject drugs. to say that at local level the screening is not done properly and systematically. I mean that whatever is written in a strategy, then you need to see the implementation at the local level. We have 21 different regional systems, and many times things are done differently region by region and district by district. Chapter 7: Chapter European Region

149 Italy

Associazione EpaC continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 5.3 People testing for hepatitis B and hepatitis C This point is not clear as formulated. It is true this information do not register by name. Hepatitis B and hepatitis C that there is a strong policy on maintaining is not accurate. tests are free of charge for all individuals. Information patient privacy with nondisclosure systems. was not provided on whether hepatitis B or Not true that tests are free of charge for all hepatitis C tests are compulsory for members individuals, just some specific groups. In most of any specific group. cases, a regular citizen must co-pay the test, especially hepatitis C (EUR 8 through a doctor’s prescription, or EUR 15-20 privately.) In some cities, there are free anonymous testing services for special categories of people (for example, sex workers, men who have sex with men). But these are local initiatives.

Statement from Associazione EpaC Our government does not listen to patient regarding key hepatitis policy issues associations, but listens a lot the European in Italy: directives. So we should put any possible efforts into convincing the European In Italy nothing exists regarding the topics Parliament to introduce hepatitis [in the civil society survey]. I do not think into the health agenda. there will be any national coordination, awareness, screening mobilisation or whatever in viral hepatitis without a specific directive from the European Parliament and support statements to World Health Assembly resolution 63.18. European Region Chapter European 7:

150 Global Community Hepatitis Policy Report Latvia

Hepatīta Biedrība

NGO – hepatitis patient group Riga, Latvia www.hepatitis.lv

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Latvia reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 64.0% thought to not be accurate for 12.0% the government information for 24.0% of items. . of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 2.2, 3.1, 3.3, 3.4, 3.5, 4.1, 4.6, 1.3, 2.1 and 3.2. 4.2, 4.3, 4.4, 4.5, 4.7 and 4.10. 4.8, 4.9, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from Hepatīta Biedrība:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is no written national strategy or plan that A common strategy for hepatitis C, HIV and this information focuses exclusively or primarily on the prevention sexually transmitted diseases is in development; is accurate. and control of viral hepatitis. to be approved this year.

Statement from Hepatīta Biedrība of cirrhosis and liver cancer. Information regarding key hepatitis policy issues from the Infectology Centre of Latvia in Latvia: shows that almost half of patients cannot afford the treatment because of the The biggest problem is reimbursement co-payment. Also, the new generation for hepatitis C treatment. The state medicine is not reimbursed and only few compensates only 75% of drug patients can afford to pay for themselves treatment costs. As the costs are high, and be cured. The reimbursement level the co-payment adds up to EUR 300 per should be increased to 100% to prevent month, which creates a very high barrier the further spread of the disease and for many patients to be cured and further cure patients. increases risks for virus transfer to other individuals. Untreated patients thus are under great risk of further complications Chapter 7: Chapter European Region

151 Netherlands

De Regenboog Groep (The Rainbow Group)

NGO – direct service provider Amsterdam, the Netherlands www.deregenboog.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of the Netherlands reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 60.0% thought to not be accurate for 4.0% the government information for 36.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 3.3, 3.4, 3.5, 4.1, 4.2, 4.5, 2.2. 2.1, 3.1, 3.2, 4.3, 4.4, 4.10, 5.1, 5.3 and 5.5. 4.6, 4.7, 4.8, 4.9, 5.2 and 5.4.

Survey comments from The Rainbow Group:

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 2.2 The government collaborates with the The National Hepatitis C Centre closed down this information following in-country civil society group to develop their activities in January 2013. I am not aware is not accurate. and implement its viral hepatitis prevention and of any other civil society agency with whom control programme: National Hepatitis Centrum. they collaborate.

--We take no 2.1 The government held events for World Hepatitis It might well be accurate, but I am not aware position regarding Day 2012 and has funded other viral hepatitis of any detail. this statement. public awareness campaigns since January 2011.

Statement from The Rainbow Group and priority in getting people into screening, and hepatitis C treatment. regarding viral hepatitis screening, care treatment. On city levels, this policy – This was reported in a recent report from and treatment issues in the Netherlands: often in the hands of one or two addiction the Ministry of Health, conducted by the specialists – is decisive in the municipal Trimbos Institute, on “Estimated Number Although there is no formal guideline in availability of screening and treatment. of Opiate Users in the Netherlands” (2013). the Netherlands that active drug users are not eligible for hepatitis C treatment, There are big differences throughout Recommended change: the Ministry of there is limited influx of people who inject the country. Some cities have an active Health needs to provide more coordination drugs towards hepatitis C screening and drug treatment agency resulting in and prioritise hepatitis C as an urgent treatment. The bottleneck seems to be substantial numbers of people being health issue. at the level of drug treatment agencies. treated for hepatitis C, while in other cities They show varied levels of awareness there is way more limited awareness, European Region Chapter European 7:

152 Global Community Hepatitis Policy Report Norway

Norwegian Society for Infectious Diseases

Medical society Oslo, Norway http://legeforeningen.no/Fagmed/Norsk-forening-for-infeksjonsmedisin/

SURVEY HIGHLIGHTS

The Government of Norway did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore the Norwegian Society for Infectious Diseases could not comment on government information for this report.

The organisation provided the following reason, mothers with high-level hepatitis B Prevention of transmission. The Norwegian general statement regarding key hepatitis viraemia may not receive recommended government has only included hepatitis B policy issues in Norway: antiviral therapy in pregnancy to reduce vaccination in the child vaccination risk of transmission to their children. The programme for children born into families Screening, care and treatment. The government should consider introducing in which at least one parent is not from a Norwegian government does not have a policy of routine hepatitis B testing for all low-prevalence country. The most important national screening policies for hepatitis B pregnant women, as is already the case with measure for prevention of transmission of and hepatitis C, except for in pregnancy, HIV. The government of Norway provides hepatitis B would be to include hepatitis B where testing of mothers belonging to treatment for hepatitis B and hepatitis C free vaccination in the child vaccination defined risk groups is recommended. of charge, but does not have clear policies programme for all children. Of 53 countries Unfortunately, there is not always regarding when treatment is indicated. in the WHO European region, only five adherence to this recommendation. Treatment guidelines are available from other countries besides Norway have not Mothers with hepatitis B also exist the Norwegian Society for Infectious included hepatitis B vaccination in the child outside of the defined risk groups. As a Diseases and the Norwegian Society for vaccination programme for all children. result, babies at risk of mother-to-child Gastroenterology. With the introduction of transmission may fail to receive vaccination new and costly hepatitis C drugs, the above and immunoglobulin, and subsequently societies have begun to prepare guidelines may become infected. For the same regarding their use. Chapter 7: Chapter European Region

153 Poland

Department of Infectious Diseases, Wroclaw Medical University

Medical school Wroclaw, Poland www.umed.wroc.pl

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Poland reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 64.0% thought to not be accurate for 36.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.3, 2.1, 3.1, 3.2, 3.3, 3.4, 4.1, 4.2, 4.4, 1.1, 1.2, 2.2, 3.5, 4.3, 4.9, 5.1, 5.2 and 5.4. 4.5, 4.6, 4.7, 4.8, 4.10, 5.3 and 5.5.

Survey comments from the Department of Infectious Diseases, Wroclaw Medical University:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.2 The government has not established the goal Vaccination of all newborns and pregnant women this information of eliminating hepatitis B. is done, but people with hepatitis B do not have is accurate. sufficient access to treatment.

4.10 The government does not have guidelines There are no guidelines regarding hepatitis E. that address how hepatitis A and hepatitis E can be prevented through food and water safety.

××To our knowledge, 1.1 There is no written national strategy or plan that Panel of experts is preparing the national this information focuses exclusively or primarily on the prevention strategy – Polish Experts Group. is not accurate. and control of viral hepatitis.

4.9 There is a national policy relating to the Only NGOs carry out needle exchange prevention of viral hepatitis among people programmes. There are not enough methadone who inject drugs. programmes. Methadone is financed by national authorities – the National Health Fund.

5.1 Health professionals obtain the skills and There are national guidelines regarding competencies required to effectively care for coinfections. people with viral hepatitis through schools for health professionals (pre-service education), on-the-job training and postgraduate training. There are national clinical guidelines for the management of viral hepatitis, but they do not include recommendations for cases with HIV coinfection. There are national clinical guidelines for the management of HIV, which include recommendations for coinfection with viral hepatitis. European Region Chapter European 7:

154 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 5.4 Publicly funded treatment is available for The amount spent is low and does not cover this information hepatitis B and hepatitis C. Publicly insured the needs. People get drugs (pills) for hepatitis is not accurate. patients are eligible for this based on medical B infection for one to two years and it is not indications. The government spent Zl 65.5 million prolonged. People with hepatitis C are treated (US$ 20.1 million) on publicly funded treatment inadequately. Only a minority get for hepatitis B in 2011. The amount spent by the protease inhibitors. government on such treatment for hepatitis C is not known.

Statement from the Department of People need to wait for therapy. Or for Infectious Diseases, Wroclaw Medical hepatitis B the treatment is limited to University regarding key hepatitis policy one or two years. Increase the number issues in Poland: of people in whom preventive procedures should be introduced. The government There are financial problems – there is needs to take more responsibility for not enough money in the “Kranken Kasse” preventive procedures. to cover treatment for all who need it. Chapter 7: Chapter European Region

155 Poland

Polish Association for the Study of the Liver*

Medical society Białystok, Poland www.pasl.pl

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Poland reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 68.0% thought to not be accurate for 32.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 2.1, 2.2, 3.2, 3.4, 3.5, 4.2, 4.3, 1.3, 3.1, 3.3, 4.1, 4.9, 5.2, 5.3 and 5.4 4.4, 4.5, 4.6, 4.7, 4.8, 4.10, 5.1 and 5.5.

Survey comments from the Polish Association for the Study of the Liver:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is no written national strategy or plan that A plan for the prevention and eradication this information focuses exclusively or primarily on the prevention of hepatitis C infection in Poland was is accurate. and control of viral hepatitis. prepared several years ago and annually updated by the Polish Group of Experts which is a joint initiative of experts from the Polish Association for the Study of the Liver and the Polish Association of Infectiologists and Epidemiologists. Unfortunately this initiative is constantly ignored by the Ministry of Health.

1.2 There is no designated governmental unit/ As a matter of fact there is no government department responsible solely for coordinating institution which work on the hepatitis issue. and/or carrying out viral hepatitis-related All activities are carried out by medical activities. It is not known how many people work societies and patient advocacy groups. The full-time on hepatitis-related activities in all only epidemiological studies which provide government agencies/bodies. information on the prevalence of hepatitis B and hepatitis C were carried out by medical societies.

2.2 The government does not collaborate with It is definitely true. in-country civil society groups to develop and implement its viral hepatitis prevention and control programme.

3.2 There are standard case definitions for This reporting is within the regular system hepatitis. Deaths, including from hepatitis, of the reporting of deaths from all causes. are reported to a central registry. Of hepatitis cases, 2% are reported as “undifferentiated” or “unclassified” hepatitis. European Region Chapter European 7:

* World Hepatitis Alliance member.

156 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.5 The following drugs for treating hepatitis B This is true, but it should be mentioned that this information are on the national essential medicines list or access to these drugs is limited by an annually is accurate. subsidised by the government: interferon alpha, limited reimbursement. pegylated interferon, lamivudine, adefovir dipivoxil, entecavir and tenofovir. The following drugs for treating hepatitis C are included on the national essential medicines list or subsidised by the government: interferon alpha, pegylated interferon and ribavirin.

××To our knowledge, 1.3 The government has a viral hepatitis prevention Definitely there are no such programmes this information and control programme that includes activities supported financially by the government or is not accurate. targeting the following specific populations: the National Health Fund (responsible for the health-care workers (including health-care waste national insurance programme). Of course these handlers); people who inject drugs; people living groups receive assistance from health care with HIV; household contacts and other contacts providers, but the majority of these activities of hepatitis B-infected persons; pre-surgical are not reimbursed or reimbursement is limited. patients; and people at risk due to lifestyle, occupation, age and chronic diseases.

3.1 There is routine surveillance for viral hepatitis. This is a misunderstanding. Government recognises There is a national surveillance system for the as “surveillance system” voluntary reporting of following types of acute hepatitis: A, B, C, D and E. hepatitis cases by physicians. So this is passive There is a national surveillance system for the system. There is no active surveillance programme following types of chronic hepatitis: B, C and D. based on the screening of high-risk populations. As a result, for example according to studies carried out by the Polish Group of Experts, there have now been up to 30,000 cases of hepatitis C diagnosed, whereas up to 700,000 people are antibody-positive for hepatitis C and about 200,000 are actively viremic (HCV RNA-positive) (0.6% of the population). These data were published in the European Journal of Gastroenterology & Hepatology. For other hepatotropic viruses there are no such data. The data collected by the National Institute of Health – recognised as a surveillance system – provide just a reporting rate and not a prevalence rate.

3.3 Liver cancer cases are registered nationally, but Definitely there is no national registry for cases with HIV/hepatitis coinfection are not. The hepatocellular cancer. The information provided government publishes hepatitis disease reports. is misunderstanding, because it looks like the Information was not provided on how often these government representative who completed the are published. survey confused the voluntary reporting system 7: Chapter that exists in Poland with a register which contains all crucial data about particular patients. Of course data on hepatocellular carcinoma and hepatitis European Region patients are collected by the National Health Fund but they are not analysed and not provided upon the request of medical societies or even pharmaco- economic agencies. Hepatitis reports mentioned by the government are compilations of reporting (not surveillance) system described in our previous comment for point 3.1.

157 Poland

Polish Association for the Study of the Liver continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 4.1 There is a national hepatitis A There is definitely no such policy. Somebody this information vaccination policy. probably mixed a national policy with is not accurate. the so-called “recommended vaccination programme” that includes hepatitis A vaccination as recommended.

4.9 There is a national policy relating to There is no government-reimbursed programme the prevention of viral hepatitis among people for hepatitis C prevention among people who who inject drugs. use drugs.

5.2 The government has national policies relating This is definitely false information. There is no to screening and referral to care for hepatitis B policy for screening and referral for hepatitis B and hepatitis C. and hepatitis C.

5.3 People testing for both hepatitis B and hepatitis The first sentence is false – there is no C register by name; the names are kept confidential named registry for HBV and HCV. Also false within the system. Hepatitis B and hepatitis C is: “Hepatitis B and hepatitis C ... are free of tests are not free of charge for all individuals, charge for .... everyone who has public health but they are free of charge for blood and organ insurance and is referred by a doctor.” It is the donors, pregnant women, and everyone who has mayor problem – There is no reimbursement public health insurance and is referred by a doctor. for hepatitis B or hepatitis C testing by Hepatitis B and hepatitis C tests are compulsory family doctors or specialities other than for blood and organ donors. infectious diseases. It can be reimbursed only for outpatients and hospitals specialising in infectious diseases.

5.4 Publicly funded treatment is available for Very false information provided. Reimbursement hepatitis B and hepatitis C. Publicly insured of hepatitis B and C treatment is limited patients are eligible for this based on medical annually. As a result in some centres patients indications. The government spent Zl 65.5 million must wait one to two years to start medication. (US$ 20.1 million) on publicly funded treatment Government spent on hepatitis C treatment for hepatitis B in 2011. The amount spent by the about PLN 130 million (about EUR 30 million). government on such treatment for hepatitis C Due to complicated and non-evidence-based is not known. therapeutic programme for hepatitis C, only 20% of hepatitis C-infected patients are eligible to receive reimbursed triple therapy based on protease inhibitors, whereas according to expert recommendation it should be 80%. The Ministry of Health implemented “worldwide unique” system of patient exclusion based on genetic discrimination (among treatment-naive, only genotype TT for IL28B patients are eligible for triple therapy). Therapeutic programme for HBV medication is based on using lamivudine as a first-line nucleoside analogue. This is off-label and contrary to expert recommendation (Polish, EASL and AASLD). European Region Chapter European 7:

158 Global Community Hepatitis Policy Report

Statement from the Polish Association Evidence-based policy and data medication for hepatitis C, whereas for the Study of the Liver regarding key for action. No evidence-based policy reimbursement is provided for only about hepatitis policy issues in Poland: is visible on the government site, which 3,000 annually. usually is interested in short-term National coordination. There is no economic issues, even if long-term Screening, care and treatment. A screening national coordination, just because of lack pharmacoeconomical analysis supports programme should be implemented of goodwill for collaboration between the the need to finance viral hepatitis immediately according to the ready Ministry of Health and medical societies, screening and medication. programme created by the Polish Group of experts and patients organisations. Experts, and it could cost no more than EUR Prevention of transmission. There is an 10 million. The reimbursement for hepatitis Awareness-raising, partnerships urgent need for a screening policy to be C medication needs increased by at least and resource mobilisation. Partnership implemented. At this moment, the Ministry 50% immediately and up to 100% by the exists between medical societies, experts of Health is not interested in supporting next year. and patients organisations. Resources for any surveillance programme because awareness-raising are not released by the recent data demonstrated that more than Government at all. 200,000 people could need immediate Chapter 7: Chapter European Region

159 Portugal

Portuguese Board of Hepatology

Medical society Lisbon, Portugal

SURVEY HIGHLIGHTS

The Government of Portugal did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States and therefore the Portuguese Board of Hepatology could not comment on government information for this report.

The organisation provided the following Evidence-based policy and data Prevention of transmission. Good general statement regarding key hepatitis for action. There are sufficient data programme for reducing the sharing policy issues in Portugal: to call action (see sources below). Several of needles and for drug addiction at national and international publications national level, but with problems due National coordination. There is no national with Portuguese data. Hepatitis C is killing to budget reductions. coordination. The Ministry of Health has around 1,000 persons per year, versus no organisation to deal specifically with around 500 for HIV. The investment of Screening, care and treatment. There is hepatitis. The need for a strategy and plan medication for HIV is 50 times more than a national and governmental barrier to has been recognised. for hepatitis C. Government has taken treatment access. three years to approve only boceprevir. Awareness-raising, partnerships and Telaprevir is not approved. Some hospitals resource mobilisation. There has been have paid the treatments, others not. a lot of situations of social and national awareness pushing the government to deal with the problem of hepatitis: the Portuguese Parliament has issued a national resolution, all the media, national scientific liver associations, patient NGOs, etc.

1. Bruggmann P, Berg T, Ovrehus AL, Moreno C, Brandão Mello CE, Roudot-Thoraval, F, Marinho RT, et al. Historical epidemiology of hepatitis C virus, (HCV) in selected countries. J Viral Hepat 2014;21 Suppl 1:5-33. 2. Razavi H, Waked I, Sarrazin C, Myers RP, Idilman R, Calinas F, (…) Marinho RT, (…) et al. Present and future disease burden of hepatitis C virus (HCV) infection with today’s treatment paradigm. J Viral Hepat 2014;21 Suppl 1:34-59. 3. Wedemeyer H, Duberg AS, Buti M, Rosenberg WM, Frankova S, Esmat G, (…) Marinho RT,(…), et al. Strategies to manage hepatitis C virus (HCV) disease burden. J Viral Hepat;21 Suppl 1:60-89. 4. Cornberg M, Razavi HA, Alberti A, Bernasconi E, Buti M, Cooper C,et al. A systematic review of hepatitis C virus epidemiology in Europe, Canada and Israel. Liver Int. 2011 Jul;31 Suppl. 2:30-60. 5. Marinho RT, Moura MC, Giria JA, Ferrinho P. Epidemiological aspects of hepatitis C in Portugal. J Gastroenterol Hepatol. 2001 Sep;16(9):1076-7. 6. Velosa J, Serejo F, Bana T, Redondo I, Simão A, Vale AM, Pires S, Macedo G, Marinho R, Peixe P, Sarmento J, Matos L, Calinas F, Carvalho A, Figueiredo A. Chronic hepatitis C treated with peginterferon alfa plus ribavirin in clinical practice. Hepatogastroenterology. 2011 Jul-Aug;58(109):1260-6. 7. Velosa J, Serejo F, Marinho R, Nunes J, Glória H. Eradication of hepatitis C virus reduces the risk of hepatocellular carcinoma in patients with compensated cirrhosis. Dig Dis Sci. 2011 Jun;56(6):1853-61. 8. Ramalho F, Costa A, Pires A, Cabrita P, Serejo F, Correia AP, Fatela N, Clória H, Lopes J, Pinto HC, Marinho R, Raimundo M, Velosa J, Batista A, de Moura MC. Correlation of genotypes and route of transmission with histologic activity and disease stage in chronic hepatitis C. Dig Dis Sci. 2000 Jan;45(1):182-7. 9. Glória H, Ramalho F, Marinho R, Pedro M, Velosa J, Moura MC. [Viral infections in intravenous drug addicts. Clinical and prognostic significance]. Acta Med Port. 1991 Sep-Oct;4(5):263-7. 10. Marinho RT, Giria J, Moura MC. Rising costs and hospital admissions for hepatocellular carcinoma in Portugal (1993-2005). World J Gastroenterol 2007;13:1522-7. 11. Mühlberger N, Schwarzer R, Lettmeier B, Sroczynski G, Zeuzem S, Siebert U. HCV-related burden of disease in Europe: a systematic assessment of incidence, prevalence, morbidity, and mortality. BMC Public Health. 2009 Jan 22;9:34. 12. Marinho RT, Duarte H, Nunes J, Ferreira A, Giria J, Velosa J. The burden of alcoholism in fifteen years of liver cirrhosis hospital admissions in Portugal. Liver Intern 2014. (accepted for publication). European Region Chapter European 7: 13. Burden and Prevention of Viral Hepatitis in Portugal, Lisbon, 2010. 14. http://www.vhpb.org/files/html/Meetings_and_publications/Viral_Hepatitis_Newsletters/vhv19n2.pdf. Acess April 2014.

160 Global Community Hepatitis Policy Report Romania

Baylor Black Sea Foundation*

NGO – direct service provider Constanta, Romania www.baylor.ro

SURVEY HIGHLIGHTS

The Government of Romania did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore the Baylor Black Sea Foundation could not comment on government information for this report.

The organisation provided the following In the absence of a national strategic >> The results obtained at the national general statement regarding key hepatitis plan and a national programme for viral level for all patients treated for policy issues in Romania: hepatitis, there are many aspects that are hepatitis B and hepatitis C are not not funded, not monitored, and of course known. In a context where clear Baylor Black Sea Foundation’s not implemented: goals and objectives are lacking, the programmes are focused on providing: reporting/monitoring system is not >> There are no long-term national well established. Only in 2014 did the >> Screening for hepatitis B and prevention campaigns or programmes. Ministry of Health elaborate a reporting hepatitis C (voluntary counselling system for cases treated for hepatitis C, >> Screening activities are not and testing programme for hepatitis B but the proposal after being criticised is standardised, funded or included in and hepatitis C) still under discussion. special recommendations. The referral >> Comprehensive psychosocial and of patients depends heavily on the >> The psychosocial aspects of living medical care for those diagnosed specialist/ family practitioner and with hepatitis B and hepatitis C are through the counselling and testing is, on a smaller scale, also influenced completely ignored. The initiatives programme or already diagnosed and by the resources available in the that we are aware of were short-term, requesting psychosocial assistance community. The Baylor Romania scattered, underfunded and lacking in Voluntary, Free, Counseling and Testing continuity. The programmes developed Programme, which also includes rapid by Baylor Romania target the Considering that Baylor’s programme is testing for hepatitis B and hepatitis C, psychosocial needs of patients living developed only in one region of Romania, is the only one in the country. Between with hepatitis C at various points: after Dobrogea, this short assessment is limited 2010 and 2013, among the 32,000 diagnosis, while preparing to access to the difficulties experienced while rolling people tested, only 2.1% were referred treatment, during treatment, etc. out our programmes locally and it might by a family practitioner and 1.3% by not contain information relevant from a >> There are no real data about the other specialists. national point of view. situation of hepatitis B and hepatitis C >> Access to treatment has improved in in Romania. The only study that has Presently in Romania there is no the past few years. There is a clear some information about the prevalence comprehensive approach to tackling referral system that patients need of Hepatitis B, C, D and E in Romania hepatitis B and hepatitis C. Existing to follow in order to acquire access is from 2008 and is geographically efforts, especially financial efforts, go to treatment. Funding is not very limited (http://www.balkanhep.eu/ towards treatment and only treatment. transparent, nor is decision-making in Romania.htm). regard to the choice of drug regimen, especially in hepatitis C cases. Chapter 7: Chapter European Region

* World Hepatitis Alliance member.

161 Russian Federation

United against Hepatitis*

NGO – hepatitis patient group Moscow, Russian Federation www.protivgepatita.ru

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of the Russian Federation reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 76.0% thought to not be accurate for 20.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 3.1, 3.2, 3.3, 3.4, 3.5, 4.2, 2.1, 2.2, 4.9, 5.1 and 5.4. 4.1. 4.3, 4.4, 4.5, 4.6, 4.7, 4.8, 4.10, 5.2, 5.3 and 5.5.

Survey comments from United against Hepatitis:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is a written national strategy or plan that This strategy does not include a national this information focuses primarily on the prevention and control of programme for hepatitis C treatment. is accurate. viral hepatitis, and also integrates other diseases. It includes components for raising awareness, surveillance, vaccination, prevention in general, prevention of transmission via injecting drug use, prevention of transmission in health-care settings, treatment and care, and coinfection with HIV.

5.1 Health professionals obtain the skills and The national clinical guidelines for hepatitis C ××To our knowledge, competencies required to effectively care for are already available (since 2013). this information people with viral hepatitis through schools for is not accurate. health professionals (pre-service education), on-the-job training and postgraduate training. It is not known whether there are national clinical guidelines for the management of viral hepatitis, but there are for the management of HIV, which include recommendations for coinfection with viral hepatitis.

5.4 Publicly funded treatment is available for Only patients coinfected with HIV and hepatitis C hepatitis B and hepatitis C. The amount spent by receive treatment. the government on such treatment is not known.

United against Hepatitis did not provide a statement regarding key hepatitis policy issues in the Russian Federation. European Region Chapter European 7:

* World Hepatitis Alliance member.

162 Global Community Hepatitis Policy Report Serbia

Association HRONOS*

NGO – hepatitis patient group Belgrade, Serbia www.hronos.rs

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Serbia reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 84.0% thought to not be accurate for 12.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.2, 4.1, 4.2, 4.3, 3.3, 3.4 and 3.5. 4.10. 4.4, 4.5, 4.6, 4.7, 4.8, 4.9, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from Association HRONOS:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 2.2 The government collaborates with the Since this year. this information following in-country civil society group to develop is accurate. and implement its viral hepatitis prevention and control programme: NGO HRONOS.

5.1 Health professionals obtain the skills and These skills and competencies are often competencies required to effectively care for people not sufficient. with viral hepatitis through schools for health professionals (pre-service education), on-the-job training and postgraduate specialisation. There are national clinical guidelines for the management of viral hepatitis, which include recommendations for cases with HIV coinfection. There are national clinical guidelines for the management of HIV, which include recommendations for coinfection with viral hepatitis.

5.4 Publicly funded treatment for hepatitis Band Treatment is available to a limited number of hepatitis C is available to all people with health patients. In 2013, the treated patients are less insurance. Information was not provided on than 300. the amount spent by the government on such treatment.

××To our knowledge, 3.5 There is a national public health research The last serosurvey was carried out in 2013. this information agenda for viral hepatitis. Viral hepatitis Chapter 7: Chapter is not accurate. serosurveys are conducted regularly; the target populations are men who have sex with men, sex workers and Roma youth. The last serosurvey was

carried out in 2010. European Region

* World Hepatitis Alliance member.

163 Serbia

Association HRONOS continued

Statement from Association HRONOS Other comments: regarding key hepatitis policy issues >> The lack of a national strategy to in Serbia: combat hepatitis, poor communication between the parts of the health system National coordination. Official documents (primary, secondary and tertiary). which regulate this field exist, but their >> Statistics are not reliable (often application is more than doubtful. inadequately reported new cases, sometimes absent, sometimes Prevention of transmission. At the level repeatedly applying the same case). of prevention in counselling for voluntary, anonymous and confidential testing, there >> Republic Health Insurance Fund is no basic tests. of delaying the introduction of new therapeutic options trying to save Screening, care and treatment. A lot money, which is directly harmful of time is lost by the time of diagnosis to patients. and then to the point of starting treatment. >> In just four referral clinical centres, From time to time occur acute shortage patients can receive treatment, which of medicines, and diagnostic tests (PCR) exposes them to additional effort is not enough in relation to the needs. and costs, as well as frequent travel. European Region Chapter European 7:

164 Global Community Hepatitis Policy Report Spain

ASSCAT*

NGO – hepatitis patient group Barcelona, Spain www.asscat-hepatitis.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Spain reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 68.0% thought to not be accurate for 20.0% the government information for 12.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 2.1, 2.2, 3.3, 3.5, 4.1, 4.2, 4.4, 4.6, 1.3, 3.1, 4.5, 5.2 and 5.4. 3.2, 3.4 and 4.3 4.7, 4.8, 4.9, 4.10, 5.1, 5.3 and 5.5.

Survey comments from ASSCAT:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.5 There is a national public health research First statement is not true; second one is. this information agenda for viral hepatitis. Viral hepatitis is accurate. serosurveys are not conducted regularly.

4.9 There is a national policy relating to the Only among people who inject drugs and attend prevention of viral hepatitis among people who to medical services. inject drugs.

××To our knowledge, 4.5 There is a specific national strategy and/or Some workers need to ask to be vaccinated; this information policy/guidelines for preventing hepatitis B otherwise they are not. is not accurate. and hepatitis C infection in health-care settings. Health-care workers are vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood.

5.4 Publicly funded treatment for hepatitis B Spanish government relies on budget and hepatitis C is available to all people with reasons to reduce the number of patients health insurance. The government spends €13,329 receiving treatment. (US$ 17,140) on such treatment for hepatitis B per patient per year, and €39,940 (US$ 51,359) for hepatitis C per patient per year.

We take no 4.3 Nationally, 96.6% of newborn infants in a given This is the way it is supposed to be, but we cannot -- 7: Chapter position regarding recent year received the first dose of hepatitis B be sure. this statement. vaccine within 24 hours of birth and 96.6% of one- year-olds (ages 12–23 months) in a given recent year received three doses of hepatitis B vaccine. European Region

* World Hepatitis Alliance member.

165 Spain

ASSCAT continued

Statement from ASSCAT regarding key cost-effectiveness studies that state Patient associations should be part of hepatitis policy issues in Spain: treating is better than waiting, also decision-making boards on prevention, because they think on very short-term screening and treatment policies, as they The Spanish government considers viral policies. The Spanish government should receive claims, questions and concerns hepatitis treatment to be “too expensive,” negotiate with the pharmaceutical from the patients. It would also be especially for new treatments (e.g., industry regarding pricing and good for these patient associations to sofosbuvir, simeprevir), and even for accessibility to ensure that every patient receive some grants to do the job that those already approved (e.g., boceprevir, who needs treatment will have it, and will government doesn’t achieve. We realise telaprevir). Only patients with a mild or have it soon, instead of telling him/her, that governments cannot do everything severe fibrosis score receive antiviral “You can wait because your situation at every time, but we need support to carry treatment. The rest are called to “wait” until is not severe enough yet.” out our work. government finds a way to pay for these treatments. Government ignores European Region Chapter European 7:

166 Global Community Hepatitis Policy Report Switzerland

Swiss Experts in Viral Hepatitis (SEVHep)

Private foundation Zurich, Switzerland www.viralhepatitis.ch

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Switzerland reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 96.0% thought to not be accurate for 4.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 3.4, 3.5, 4.1, 5.3. 4.2, 4.3, 4.4, 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.2, 5.4 and 5.5.

Survey comments from Swiss Experts in Viral Hepatitis (SEVHep):

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is no written national strategy or plan that SEVHep is currently intending to bring together this information focuses exclusively or primarily on the prevention a task force of all relevant stakeholders in order is accurate. and control of viral hepatitis. to elaborate and implement such a national hepatitis strategy.

××To our knowledge, 5.3 People testing for both hepatitis B and People testing for hepatitis B and hepatitis C are this information hepatitis C register by name; the names are no longer registered by name since 2013 due to is not accurate. kept confidential within the system. Hepatitis B data protection issues. The rest is still accurate. and hepatitis C tests are not free of charge for all individuals, but they are free of charge for health-care workers, and organ and blood donors. Hepatitis B and hepatitis C tests are not compulsory for members of any specific group.

Statement from SEVHep regarding key The targeted strategy should primarily There are data from the mandatory hepatitis policy issues in Switzerland: focus on the low detection rates (an national notification system. In addition estimated 33% of all infected people there is evidence on prevalence in some In Switzerland a major challenge towards are tested) and on the poor awareness, risk groups and very soon a study on a a national hepatitis strategy is the low but also cover improved surveillance, mathematical model calculation of the awareness of the disease and its future prevention and access to care for future disease burden will be published. public health, social and economic most-at-risk populations. At a first kick-off meeting towards a impact. Awareness is low on all levels: national strategy, all key stakeholders health care professionals, people at risk, The government needs to declare hepatitis supported the need of such a strategy. politicians and the general public. In our as a relevant public health issue and decentralised, federalist country not only accordingly to mandate and finance a national but also cantonal authorities must national strategy. A close coordination

be motivated in order to have a future between national and cantonal bodies 7: Chapter national strategy implemented. from the beginning is essential to achieve adequate coverage at implementation. All key stakeholders need to be involved

in the elaboration and implementation of Stakeholders are asked to contribute to European Region such a national strategy. A key first step and take part in a nationally coordinated is to obtain a political mandate. action. They need to assure acceptance and implementation to enhance awareness and knowledge in their communities.

167 The former Yugoslav Republic of Macedonia

Healthy Options Project Skopje (HOPS)

NGO – direct service provider Skopje, The former Yugoslav Republic of Macedonia www.hops.org.mk

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of The former Yugoslav Republic of Macedonia reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 72.0% thought to not be accurate for 16.0% the government information for 12.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 3.4, 3.5, 4.1, 4.3, 4.4, 4.5, 2.2, 3.1, 3.3 and 4.9. 3.2, 4.2 and 4.7. 4.6, 4.8, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from Healthy Options Project Skopje (HOPS):

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.5 There is no national public health research The Institute for Public Health conducts this information agenda for viral hepatitis. Viral hepatitis biobehavioural studies for hepatitis C prevalence is accurate. serosurveys are not conducted regularly. among people who inject drugs in a period of 2–3 years.

4.1 There is no national policy Hepatitis A vaccination is recommended when on hepatitis A vaccination. travelling abroad.

4.4 There is a national policy specifically targeting In the recommendations for evidence-based mother-to-child transmission of hepatitis B. medicine, it is recommended that pregnant women be counselled for screening for hepatitis B. Unfortunately this is not done in practice.

5.2 The government has national policies relating There is consensus for prevention, diagnosis, to screening and referral to care for hepatitis B and treatment and monitoring of patients with hepatitis C. hepatitis B and hepatitis C, and also in the recommendations for evidence-based medicine, where these questions are addressed.

5.4 Publicly funded treatment is available There are sums of money provided by the Global for hepatitis B and hepatitis C, but information Fund for treatment of 47 people who use drugs was not provided on who is eligible for this, annually. In the previously mentioned documents or on the amount spent by the government there is no specific information regarding on such treatment. eligibility for treatment, but for these 47 patients there is a consensus between the Global Fund, the Country Coordinating Mechanism and the Clinic for Infectious Diseases, where people who use drugs must be 12 months on substitution therapy or abstaining for 12 months in order to be eligible for treatment. Active drug users are not eligible. European Region Chapter European 7:

168 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 2.2 The government collaborates with the HOPS has not been contacted by the government this information following in-country civil society groups to develop to take part in the creation of the programme. is not accurate. and implement its viral hepatitis prevention and Our activities for prevention of hepatitis C are control programme: Hepta and HOPS. part of the Programme for HIV/AIDS Prevention supported by the Global Fund.

3.1 There is routine surveillance for viral hepatitis. The testing for hepatitis is done at the request There is a national surveillance system for the of the person; there is no official routine testing. following types of acute hepatitis: A, B and C, but Also through the voluntary counselling and not for any type of chronic hepatitis. testing for hepatitis C is done for populations at risk. The private clinics have a routine for testing for hepatitis B and hepatitis C before undertaking interventions. This practise is not official within the state-funded clinics.

3.3 Liver cancer cases and cases with HIV/ We have information regarding hepatitis C and hepatitis coinfection are registered nationally. HIV coinfection but this information is gained The government publishes hepatitis disease through presentations in the conference for reports weekly. hepatitis C treatment that HOPS organised. Reporting cases of hepatitis C is mandatory, regulated by law, but there is a problem with gathering information in general regarding health issues. Liver cancer cases are registered according to the Law for evidence in health.

--We take no 4.2 The government has established the goal All children born in hospital since 2005 receive position regarding of eliminating hepatitis B but did not provide hepatitis B vaccination. this statement. information about a specific timeframe for this.

Statement from HOPS regarding key There is need to create a national strategy funds with support of the current fund by hepatitis policy issues in The former for prevention, treatment and care for the clinics will allow more people to have Yugoslav Republic of Macedonia: hepatitis C, where all stakeholders will access to treatment. take part. Currently every stakeholder is National coordination. In March 2014, implementing its own tasks, dealing with Evidence-based policy and data HOPS organised a conference regarding the challenges independently. Creating for action. The latest recommendations by hepatitis C treatment among drug users. a national strategy will mean that the the World Health Organization (WHO) are Representatives from the clinics, civil Ministry of Health will allocate funds for that active injecting drug users should be society organisations and pharmaceutical dealing with the issue. Currently every clinic eligible for treatment and are an important companies took part. At the conference, (clinics for gastroenterohepatology and population regarding prevention. The

best practices and challenges in treatment clinics for infectious diseases) allocates Ministry of Health has a recommendation 7: Chapter were discussed and one of the conclusions funds for this treatment on their own for evidence-based medicine but it does was that there is a lack of national decision (calculating with the money they not include eligibility criteria regarding coordination regarding this issue. receive as a clinic for treating all of the hepatitis treatment. The latest WHO

health issues under their responsibility). recommendations should be included in European Region Treatment for hepatitis C is very expensive, this document so that active injecting drug so the allocation of national users are eligible for treatment.

169 The former Yugoslav Republic of Macedonia

Healthy Options Project Skopje continued

Regarding this issue, there is a negative and the Ministry of Heath has a able to undergo treatment. This issue was attitude by health workers which is central role since it has a mandate also discussed at the conference organised confirmed with the consensus for treatment to require health care institutions by HOPS. There is will for negotiation by between the Global Fund, the Country to implement recommendations. the pharmaceutical companies but for Coordinating Mechanism and the Clinic lowering the prices on a national level, for Infectious Diseases. According to this Screening, care and treatment. Regarding decision-makers must take part in the consensus, only drug users on substitution treatment, another major issue in addition negotiation process (the Ministry of Health therapy or those who are abstaining for to eligibility is the cost of hepatitis C and the Health Insurance Fund). 12 months are eligible for treatment. Health treatment. In Macedonia, there are only workers consider that treating active two pegylated interferons registered, injecting drug users is not cost-effective and the clinics are procuring only one because of the risk of reinfection. of them. There are very few clinics that procure both medicines. Because of the This is a very important issue to be non-competitive way of procuring these discussed. It was discussed at the medicines, the prices stay high. The cost conference HOPS organised but this of the medicine has a direct effect on the question should be discussed by number of people on treatment. If the broader involvement of stakeholders, prices are lowered, more people will be European Region Chapter European 7:

170 Global Community Hepatitis Policy Report The Former Yugoslav Republic of Macedonia

HEPTA*

NGO – hepatitis patient group Skopje, The Former Yugoslav Republic of Macedonia www.nvo hepta.com.mk

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of The Former Yugoslav Republic of Macedonia reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 72.0% thought to not be accurate for 12.0% the government information for 16.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.2, 3.4, 3.5, 4.1, 3.3, 4.10 and 5.2. 4.4, 4.5, 4.7 and 4.9. 4.2, 4.3, 4.6, 4.8, 5.1, 5.3, 5.4 and 5.5.

HEPTA did not provide any comments about survey items.

Statement from HEPTA regarding key Fast diagnosis and fast treatment, no waiting implementation of the plan, and to analyse hepatitis policy issues in The Former for therapy (often several months). the results. Yugoslav Republic of Macedonia: Working together to introduce the new drug According to the results, adjust the plan The greatest problem is that there is no therapy in the treatment of viral hepatitis. to the appropriate situation. screening programme in the field, organised by the government and NGOs. The screening All of these changes are the responsibility We conducted research in the field and works only if an NGO is active in the field. of the government: the responsibility of carried out statistical analyses. We used government is to make these changes anonymous questionnaires where free The first needed change is to improve available to the patients. screening was offered. communication between the government (Ministry of Health) and NGOs. The roles and responsibilities of other stakeholders at the community, national Working together for care of patients means and international levels will be to work treating, providing social assistance, a place together (not separately) to make plans for to live and so on. health prevention, education, treatment, Chapter 7: Chapter European Region

* World Hepatitis Alliance member.

171 Ukraine Government Institution “L.T. Malaya Therapy, National Institute of the National Academy of Medical Sciences of Ukraine”

Research institute Kharhov, Ukraine www.therapy.org.ua

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Ukraine reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 68.0% thought to not be accurate for 20.0% the government information for 12.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 2.1, 3.1, 3.2, 3.3, 3.4, 3.5, 4.3, 4.4, 4.5, 1.1, 1.2, 1.3, 4.1 and 4.2. 2.2, 4.9 and 4.10. 4.6, 4.7, 4.8, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from Government Institution “L.T. Malaya Therapy, National Institute of the National Academy of Medical Sciences of Ukraine”:

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 1.1 There is no written national strategy or plan that The Ukrainian Ministry of Healthcare recently this information is focuses exclusively or primarily on the prevention outlined the new areas of state funding for the not accurate. and control of viral hepatitis. current year. Given the social importance of viral hepatitis, the Cabinet of Ministers of Ukraine adopted the № 637 resolution on April 29, 2013, entitled “Approval of the National Programme for prevention, diagnosis and treatment of viral hepatitis for the period until 2016.”

1.3 The government does not have a viral hepatitis № 672 resolution from December 30, 2004, prevention and control programme that includes regulates vaccination of blood donors. activities targeting specific populations. European Region Chapter European 7:

172 Global Community Hepatitis Policy Report

Statement from Government Institution According to the Centre for Medical The strategy of approaching the current “L.T. Malaya Therapy, National Institute Statistics of the Ukrainian Ministry of situation is therefore suggested as follows: of the National Academy of Medical Healthcare, the following information is Sciences of Ukraine” regarding key available: >> Strong stimulation of scientific research hepatitis policy issues in Ukraine: on viral hepatitis, aimed at the >> Prevalence of chronic viral hepatitis development of new diagnostics tools Screening, care and treatment. The in the general population: 356,907 and drugs, providing funding grants and Ukrainian Ministry of Healthcare recently people (782.7 per 100 thousand of information support for research groups. outlined the new areas of state funding the relevant population). >> Support of educational programmes for the current year. Given the social >> Incidence: 28,949 (63.5 per 100,000 for healthcare professionals and patients, importance of viral hepatitis, the Cabinet of the relevant population). aimed at providing actual information of Ministers of Ukraine adopted the № about current state-of-the-art in 637 resolution on April 29, 2013, entitled >> Prevalence in children: 1,999 persons prevention, diagnostics and treatment “Approval of the National Programme for (0.25 per 1,000 relevant population). of viral hepatitis. prevention, diagnosis and treatment of >> Incidence in children: 299 (0.04 per viral hepatitis for the period until 2016.” >> Support of clinical trials for assessing 1,000 relevant population). To date, the programme has received new antiviral drugs, especially no additional funding. Given the information above, the boceprevir, telaprevir etc., while leading specialists in infectious diseases maintaining internationally recognised Additional dedicated funds would provide highlighted the issue of lack of funding ethical standards and satisfying GCP means to at least partially satisfy patients’ at a workshop on 7 December 2013. They requirements. needs. The programme objectives originally also quoted high antiviral treatment cost, >> Strong increase of strictly controlled included the development of care for patients noting that resolving this issue should financial investment in implementing with viral hepatitis B and C. This effort remain a priority. Finally, it was stressed the social initiative; dissemination of would include diagnostics, therapeutics, that new antiviral drug production will successes to the general public. scientific research, and prevention, all allow to significantly reduce the per- aimed at significantly reducing prevalence patient cost of treatment of hepatitis C. >> Close collaboration with international and mortality, and increasing patients’ research centres, aimed at stimulating survival and quality of life. the exchange of scientific ideas. Chapter 7: Chapter European Region

173 Ukraine

International HIV/AIDS Alliance in Ukraine

NGO – direct service provider Kyiv, Ukraine www.aidsalliance.org.ua

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Ukraine reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 48.0% thought to not be accurate for 52.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 1.3, 3.2, 4.1, 4.2, 4.3, 4.4, 4.5, 2.1, 2.2, 3.1, 3.3, 3.4, 3.5, 4.7, 4.8, 4.10, 4.6, 4.9 and 5.5. 5.1, 5.2, 5.3 and 5.4.

Survey comments from the International HIV/AIDS Alliance in Ukraine:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is no written national strategy or plan that The State programme on viral hepatitis was this information focuses exclusively or primarily on the prevention approved last year but it is not exclusively is accurate. and control of viral hepatitis. focused on prevention and control.

1.2 There is no designated governmental unit/ Alliance-Ukraine initiated developing the department responsible solely for coordinating group at the Ministry of Health of Ukraine on and/or carrying out viral hepatitis- related controlling/coordinating implementation of activities. It is not known how many people work the State Hepatitis programme at all levels – full-time on hepatitis-related activities in all national and local. government agencies/bodies.

1.3 The government does not have a viral hepatitis Vulnerable populations are not even mentioned prevention and control programme that includes in the State hepatitis Programme. activities targeting specific populations.

4.4 There is a national policy that specifically It is not a separate plan or strategy; it’s part targets mother-to-child transmission of hepatitis B of the State hepatitis programme. (Annex B).

4.9 There is no national policy relating to the Alliance-Ukraine presses the Ministry of prevention of viral hepatitis among people who Health of Ukraine to develop the guidelines and inject drugs. suggested to provide its technical and expertise support on that. Alliance-Ukraine plans to provide the MoH with detailed recommendations in this regard. European Region Chapter European 7:

174 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 2.2 It is not known whether the government held The Government has never held events on World this information events for World Hepatitis Day 2012. It has not Hepatitis Day, nor funded awareness campaigns. is not accurate. funded other viral hepatitis public awareness Alliance-Ukraine launched the all-Ukrainian HCV campaigns since January 2011. awareness and advocacy campaigns in 2011, which are still on-going.

2.2 The government collaborates with the following Alliance-Ukraine is the key organisation in Ukraine in-country civil society groups to develop and working in HCV area, and also cooperating with implement its viral hepatitis prevention and control many international organisations in the EECA programme: NGO “Stop Hepatitis” and Office IRF region and internationally on holding joint events in Ukraine. and developing joint campaigns. In Ukraine, Alliance-Ukraine developed the whole network of NGOs working in hepatitis in all Ukrainian regions. Alliance reduced the price for HCV diagnostics and treatment by 2.5 times for the Alliance’s and governmental procurements. Alliance launched the first HCV treatment programmes in 10 Ukrainian regions and works not only with the Ministry of Health of Ukraine but local administrations as well on developing and approving hepatitis treatment programmes and allocating funding. Alliance also works with the CDC (USA), the WHO country office and other stakeholders in Ukraine. Alliance implements HCV treatment programmes as a principal recipient of the Global Fund and implements hepatitis advocacy with the support of Open Society Foundation and its local office, IRF.

3.1 There is routine surveillance for viral hepatitis. There is no proper surveillance system in place. There is a national surveillance system for the This is why there are no realistic hepatitis B and following types of acute hepatitis: A, B and C, and C statistics in Ukraine. Alliance-Ukraine plans for the following types of chronic hepatitis: B and C. to involve the CDC (USA) and MoH in developing a proper national surveillance system.

3.3 Liver cancer cases are registered nationally, Both cases are not registered properly. but cases with HIV/hepatitis coinfection are not. The government does not publish hepatitis disease reports. Chapter 7: Chapter 3.4 Hepatitis outbreaks are required to be reported It is not true. There is NO adequate laboratory to the government and are further investigated. capacity nationally to support outbreak There is adequate laboratory capacity nationally investigations and other surveillance activities to support outbreak investigations and other for hepatitis European Region surveillance activities for hepatitis A, hepatitis B and hepatitis C, but information was not provided on whether this is the case for hepatitis E.

175 Ukraine

International HIV/AIDS Alliance in Ukraine continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 3.5 There is no national public health research Viral hepatitis serosurveys are conducted this information agenda for viral hepatitis. Viral hepatitis regularly by Alliance-Ukraine, not the is not accurate. serosurveys are conducted regularly; the target Government. Alliance-Ukraine provides population is people who inject drugs. The last the Government and all the stakeholders serosurvey was carried out in 2011. with data on a regular basis.

4.7 Official government estimates of the number The Government does not estimate the number and percentage of unnecessary injections and percentage of unnecessary injections. administered annually in health-care settings were not known.

4.8 There is a national infection control policy for The Ministry of Health usually claims that all blood banks. All donated blood units (including donated blood units (including family donations) family donations) and blood products nationwide and blood products nationwide are screened for are screened for hepatitis B and hepatitis C. hepatitis B and hepatitis C. In reality, it is not true. Many people become infected with HepB or HepC as the blood is not properly screened everywhere.

4.10 The government has guidelines that address Not guidelines (which is stronger) how hepatitis A and hepatitis E can be prevented but recommendations. through food and water safety.

5.1 Health professionals obtain the skills and One of the barriers to access to hepatitis B and C competencies required to effectively care for people treatment in Ukraine is the lack of knowledge of with viral hepatitis through schools for health medical/health professionals. In many regions professionals (pre-service education), on-the-job health professionals still treat patients with training and postgraduate training. There are no linean/non-pegylated interferon and there is a lack national clinical guidelines for the management of knowledge and skills on treating with peg-Inf-riba viral hepatitis, but there are for the management of treatment and DAAs. Alliance-Ukraine started HIV, which include recommendations for coinfection training health care professionals for its already with viral hepatitis. launched treatment programmes, which will be extended soon as well as involve more health professionals in education and training activities in 2014-2015 for more treatment programmes including state and local treatment programmes.

5.2 The government has national policies relating It is not reflected in the state/national hepatitis to screening and referral to care for hepatitis B and programme or diagnostics and treatment hepatitis C. guidelines. There are no other official documents containing that information which can be named “national policies”. The State/National programme and treatment guidelines leave much to be desired. Alliance-Ukraine plans to develop recommendations to the MoH of Ukraine and push the Ministry of Health to improving the state programme and treatment guidelines in accordance with WHO’s recommendations. European Region Chapter European 7:

176 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 5.3 People testing for both hepatitis B and hepatitis C Confidentiality is not often observed. Hep B this information register by name; the names are kept confidential and Hep C screening tests are free, but not is not accurate. within the system. Hepatitis B and hepatitis C the full diagnostics package. tests are not free of charge for all individuals, but they are free of charge for pregnant women, blood donors and military conscripts. Hepatitis B and hepatitis C tests are compulsory for pregnant women, blood donors and military conscripts.

5.4 Publicly funded treatment is not available The Government approved its state target for hepatitis B or hepatitis C. hepatitis programme in 2013 with US $4 million allocated for treatment. Around 600 patients started receiving treatment but no funding was allocated in 2014 from state budget. In response to the pressure of civil society, the Government promises to allocate more funding already in 2014, but this has not yet happened.

Statement from the International HIV/AIDS programmes). Currently, the Alliance tries coverage etc. These activities included Alliance in Ukraine regarding key hepatitis to involve the MoH in its further price in the Alliance’s campaigns are targeted policy issues in Ukraine: negotiations for pegylated interferon at HCV and HBV awareness raising and sofosbuvir. Alliance also develops among the mentioned groups, generating We lack commitment from the Government recommendations for the MoH to improve treatment demand, allocating funds for to the hepatitis problems in Ukraine. the State Hepatitis Programme and HCV treatment for the State hepatitis and local The quality of the recently approved State/ treatment guidelines in accordance with programmes, including vulnerable groups National Target Programme on Hepatitis WHO’s recommendations as well in treatment programmes and extending and HCV treatment guidelines leaves much as develop HCV treatment guidelines treatment programmes at national and to be desired. for PWID. local levels, further price reduction for diagnostics and treatment, launch of One of the main problems is that One more problem is a lack of knowledge treatment with DAAs etc. Ideally, MoH vulnerable groups are not even mentioned and skills of health professionals. should lead on all that. in the State hepatitis Programme, which The Alliance, with the support of some provides the grounds for our health international donors, plans to hold a series In our situation, we/Alliance and partners professionals to exclude HIV-positive of education trainings and awareness need to press our MoH to at least get and people who inject drugs (PWID) campaigns for health professionals and involved in all of the above mentioned from treatment programmes/ refuse to decision-makers at national and local activities initiated and implemented by provide them with treatment services. levels. Alliance-Ukraine also conducts Alliance-Ukraine and partner NGOs. The other problem is that the State regular awareness, mobilisation and Together with the US CDC, Alliance- hepatitis programme was 10 times under advocacy campaigns, which include Ukraine plans to develop the hepatitis financed in 2013 and no funding was screening for the general population and surveillance system for Ukraine. Together allocated for 2014. One more problem is vulnerable groups, providing information with WHO country office, US CDC and corruption. It took much of the Alliance’s on HBV and HCV, re-addressing patients other stakeholders, Alliance-Ukraine time and effort to convince the MoH to for diagnostics and treatment, schools for plans to provide support to the MoH on procure HCV treatment at a reduced price, patients and health professionals, work improving and implementing the state

the price that the Alliance reduced for with authorities and national and local hepatitis programmes. 7: Chapter its procurements (Alliance’s treatment levels, public events with wide mass media European Region

177 Ukraine

Public Organisation “Gay-Alliance”*

NGO – direct service provider Kiev, Ukraine www.ga.net.ua

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Ukraine reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 80.0% thought to not be accurate for 16.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.2, 2.1, 2.2, 3.1, 3.2, 3.3, 3.4, 3.5, 4.2, 1.1, 1.3, 4.1 and 5.4. 4.7. 4.3, 4.4, 4.5, 4.6, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3 and 5.5.

Survey comments from Public Organisation “Gay-Alliance”:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 2.1 It is not known whether the government held The World Hepatitis Day in 2011, 2012, 2013 was this information events for World Hepatitis Day 2012. It has not carried out exclusively with the support of foreign is accurate. funded other viral hepatitis public awareness donors (IRF in Ukraine, Global Fund to Fight campaigns since January 2011. AIDS, Tuberculosis and Malaria).

2.2 The government collaborates with the The Government is also working with the following in-country civil society groups to develop International HIV/AIDS Alliance in Ukraine. and implement its viral hepatitis prevention and control programme: NGO “Stop Hepatitis” and the office of IRF in Ukraine.

3.5 There is no national public health research The last serosurvey was carried out for people agenda for viral hepatitis. Viral hepatitis who inject drugs in 2013 (International HIV/AIDS serosurveys are conducted regularly; the target Alliance in Ukraine). population is people who inject drugs. The last serosurvey was carried out in 2011.

××To our knowledge, 1.1 There is no written national strategy or plan that September 4, 2014, the Ukrainian government this information is focuses exclusively or primarily on the prevention approved the state programme to combat not accurate. and control of viral hepatitis. hepatitis in Ukraine in 2014–2016.

1.3 The government does not have a viral hepatitis September 4, 2014 the Cabinet of Ministers prevention and control programme that includes of Ukraine approved the State programme to activities targeting specific populations. combat hepatitis in Ukraine in 2014–2016 years.

5.4 Publicly funded treatment is not available According to the approved (in September 2013) for hepatitis B or hepatitis C. national programme to combat hepatitis in Ukraine in 2014–2016, at the end of 2013 the Government allocated limited funding for the treatment of hepatitis C. European Region Chapter European 7:

* World Hepatitis Alliance member.

178 Global Community Hepatitis Policy Report

Statement from Public Organisation What needs to change? most vulnerable groups. In a situation “Gay-Alliance” regarding key hepatitis of gradual reduction of funding for policy issues in Ukraine: >> Need for concerted and coordinated prevention programmes from the advocacy work of the public sector Global Fund, this situation is very National coordination. In September (of patient and public organisations) worrying because the hepatitis C 2014, the State programme came into at all levels to control the allocation epidemic in Ukraine is growing rapidly. force to combat viral hepatitis from of money and the proper distribution 2014–2016. While in 2013 the government of funds for the diagnosis and What needs to change? allocated 33.2 million hryvna (about 2,075 treatment of hepatitis B in order million euros). to obtain them from the government >> Need to change the state’s attitude to of the State programme and reduce the problem of viral hepatitis because, Problem morbidity and mortality. in spite of the state programme, the reach was very limited. Non-profit >> Despite the fact that in the fourth Prevention of transmission organisations together with officials quarter of 2013 a certain amount of need to work together on the allocation money was allocated for the treatment Problem of funds from the state and local of hepatitis C, the majority of patients budgets for the prevention of hepatitis who need treatment cannot take >> Currently, many non-profit community and monitor the implementation of the advantage because of low awareness organisations in Ukraine are involved government programme to combat of available treatments and corruption with prevention, diagnosis and viral hepatitis. There needs to be schemes at the national and local informing about HIV, STIs and viral developed a set of advocacy activities levels, which affect the proper hepatitis among the groups most at for the successful performance of distribution of drugs. Further, in early risk, with financial support from the tasks. A driving force for change must 2014 in connection with the change Global Fund and other donors. Not be public organisations and patients. of power in Ukraine and the economic now, nor earlier did the Ukrainian Thanks to them, previous advocacy crisis the additional allocation of funds government allocate money for work on the allocation of budget for the Programme is not yet possible. prevention activities and awareness funding for the treatment of hepatitis C for the general population or the has been the most successful. Chapter 7: Chapter European Region

179 United Kingdom of Great Britain and Northern Ireland

The Hepatitis C Trust*

NGO – hepatitis patient group London, United Kingdom www.hepctrust.org.uk

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of the United Kingdom of Great Britain and Northern Ireland reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 96.0% thought to not be accurate for 4.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 3.4, 3.5, 4.6. 4.1, 4.2, 4.3, 4.4, 4.5, 4.7, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from The Hepatitis C Trust:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 2.1 The government did not hold events for World But these were far from large scale, this information Hepatitis Day 2012, but has funded other viral comprehensive public awareness events. is accurate. hepatitis public awareness campaigns since January 2011 (Annex A).

4.3 Information was not provided on the This is because there is no universal infant percentage of newborn infants nationally in a vaccination programme. given recent year who received the first dose of hepatitis B vaccine within 24 hours of birth or the percentage of one-year-olds nationally (ages 12–23 months) in a given recent year who received three doses of hepatitis B vaccine.

4.5 There is a specific national strategy and/or Health care workers doing EPP have been tested policy/guidelines for preventing hepatitis B for blood-borne viruses since 2007 but not if and hepatitis C infection in health-care settings. they started practising before then. This was the Health-care workers are vaccinated against cause of a recent hepatitis C outbreak in Wales. hepatitis B prior to starting work that might put them at risk of exposure to blood.

5.2 The government has national policies relating They are infrequently followed. to screening and referral to care for hepatitis B and hepatitis C.

--We take no position 4.6 There is a national policy on injection safety This is extraordinary that what syringes are regarding this in health-care settings, but it is not known what recommended for is unknown. statement. type of syringes it recommends for therapeutic injections. It is not known whether single-use or auto-disable syringes, needles and cannulas are always available in all health-care facilities. European Region Chapter European 7:

* World Hepatitis Alliance member.

180 Global Community Hepatitis Policy Report

Respondent statement regarding Evidence-based policy and data for Screening, care and treatment. Even key hepatitis policy issues in the action. The Scottish and Welsh responses in Scotland there has been inadequate United Kingdom of Great Britain to viral hepatitis have been excellent in diagnosis with too little effort put into and Northern Ireland: their use of evidence (although they do finding the diagnosed. Broad-based not have the detail available for HIV). In awareness campaigns coupled with National coordination. All four countries England, no-one knows how many people screening programmes are urgently of the United Kingdom have national are treated each year for HCV or HBV or required (as in the US for example with plans for hepatitis C or viral hepatitis what the outcomes are, an extraordinary their baby-boomer screening programme) of varying quality. The English plan is situation given the cost. Much better data but not enough work has been done into only for hepatitis C and has no-one in is required in England. how to do this cost-effectively. In England charge, no monitoring, no targets and no an agreement has just been put in place money and has not been updated since Prevention of transmission. The UK is for universal opt-out blood-borne virus 2004. A liver strategy was promised one of the only countries in the world testing of all newly arrived in prison. (with a large section on viral hepatitis) not to universally vaccinate its infants but this was abandoned in 2013. There against HBV. The argument has been is a pressing need for a new plan with that it is not cost-effective because there robust oversight. In Northern Ireland, is little native infection and all pregnant viral hepatitis is of relatively minor women are screened and risk groups are significance. In Wales there is a recent vaccinated. Instead, the Joint Committee Blood Borne Viral Hepatitis Action Plan on Vaccination and Immunisation should and in Scotland an excellent Hepatitis C have been looking at how to make it cost- Action Plan now rolled into a BBV and effective in the UK because vaccination Sexual Health Framework but in both amongst risk groups is often inadequate. Wales and Scotland there is uncertainty over continued funding and questions Apart from in Scotland, very few PWID over the scope of future ambitions. What are treated for HCV and this method of is needed is strong cross-party political prevention has been essentially ignored. support for a determination to eliminate In addition, drug services have been hepatitis C and to introduce universal HBV inadequately trained and commissioners infant vaccination. have put little or no emphasis on HCV so prevention messages have been Awareness-raising, partnerships and inadequately transmitted to PWID with too resource mobilisation. World Hepatitis much reliance placed on NSPs with little Day has been almost entirely left to civil effort to explain that HCV is different from society in the UK, this despite the fact that HIV and can be transmitted through drug the majority of viral hepatitis patients paraphernalia and not just through needles remain undiagnosed. Even in Scotland only and syringes. half of HCV patients have been diagnosed. Chapter 7: Chapter European Region

181 United Kingdom of Great Britain and Northern Ireland

The Hepatitis C Trust (Scotland)*

NGO – hepatitis patient group Edinburgh, Scotland, United Kingdom of Great Britain and Northern Ireland www.hepctrust.org.uk

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of the United Kingdom of Great Britain and Northern Ireland reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 84.0% thought to not be accurate for 8.0% the government information for 8.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.3, 2.1, 2.2, 3.1, 3.3, 3.4, 4.1, 4.2, 4.3, 1.2 and 5.1. 3.2 and 3.5. 4.4, 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.2, 5.3, 5.4 and 5.5.

Survey comments from The Hepatitis C Trust (Scotland):

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.3 The government has a viral hepatitis prevention The Scottish Government produced the Hepatitis this information and control programme that includes activities C Action Plan phase 1 &11 (2006-2011), now the is accurate. targeting the following specific populations: Sexual Health and Blood Borne Virus Framework health-care workers (including health-care waste (2011–2015). handlers), people who inject drugs, migrants, prisoners, the homeless, people living with HIV, people at risk for STI and pregnant women (antenatal screening).

2.1 The government did not hold events for World The Scottish Government has made a Hepatitis Day 2012, but has funded other viral contribution to World Hepatitis Day events hepatitis public awareness campaigns since organised and partly funded by charities, January 2011 (Annex A). volunteer organisations and community organisations, as well as some regional National Health Service Boards.

2.2 The government collaborates with the Also in Scotland: Hepatitis Scotland, Waverley following in-country civil society groups to develop Care Gay Men’s Health, Terence Higgins Trust, and implement its viral hepatitis prevention and Drugscope Aberdeen and Caledonia Youth and control programme: Hepatitis C Trust, Addaction, HIV Scotland. British Liver Trust, Exchange Supplies, Needle Exchange Forum and Injecting Advice.

5.2 The government has national policies relating Although screening is carried out in Harm to screening and referral to care for hepatitis B and Reduction/Needle Exchange Services. hepatitis C. European Region Chapter European 7:

* World Hepatitis Alliance member.

182 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.5 The following drugs for treating hepatitis B In Scotland, Sovaldi is approved with restrictions this information are on the national essential medicines list or on use. is accurate. subsidised by the government: interferon alpha, pegylated interferon, lamivudine, adefovir dipivoxil, entecavir and tenofovir. The following drugs for treating hepatitis C are on the national essential medicines list or subsidised by the government: interferon alpha, pegylated interferon, ribavirin, boceprevir and telaprevir.

××To our knowledge, 1.2 There is no designated governmental unit/ In Scotland we have government civil servants this information department responsible solely for coordinating who co-ordinate the viral hepatitis network. is not accurate. and/or carrying out viral hepatitis-related I do not know the numbers involved. activities. It is not known how many people work full-time on hepatitis-related activities in all government agencies/bodies.

5.1 Health professionals obtain the skills and In Scotland we have the Scottish competencies required to effectively care for people Intercollegiate Guidelines Network (SIGN 133) with viral hepatitis through schools for health guideline on the management of hepatitis C. professionals (pre-service education), on-the-job http://goo.gl/pOQmzl training and postgraduate training. There are no national clinical guidelines for the management Workforce education and training are covered of viral hepatitis, but there are for the management in the Sexual Health and Blood Borne Virus of HIV, which include recommendations for Framework. http://goo.gl/ENjKjO coinfection with viral hepatitis. Health Improvement Scotland have also produced a set of quality indicators for HCV. http://goo.gl/VtYJkN

--We take no 3.2 There are standard case definitions Not sure. position regarding for hepatitis. Deaths, including from hepatitis, this statement. are reported to a central registry. No hepatitis case is reported as “undifferentiated” or “unclassified” hepatitis.

3.5 There is no national public health research In the Tayside region of Scotland research agenda for viral hepatitis. Viral hepatitis serosurveys into Vitamin D deficiency and how this affects are conducted regularly; the target populations are treatment outcomes is being carried out as is people who inject drugs, female sex workers and men a project into treating those who are currently 7: Chapter who have sex with men. The last serosurvey was continuing to inject drugs. carried out in 2011. The Medical Research Council are conducting an investigation into genetic factors affecting European Region treatment outcomes.

183 United Kingdom of Great Britain and Northern Ireland

The Hepatitis C Trust (Scotland) continued

Statement from The Hepatitis C Trust having to compete with each other in Screening, care and treatment. There is (Scotland) regarding key hepatitis policy each area. In light of the advances in HCV no national screening policy. The first new issues in the United Kingdom of Great therapy the entire structure of the services therapies for HCV have been approved Britain and Northern Ireland: need to be redesigned with much more but for restricted use. My opinion is that emphasis on the patient. The Scottish there will be a two-tier treatment schedule Awareness-raising, partnerships and patients have not been surveyed on the with the majority of Scottish patients resource mobilisation. The Scottish framework that will be in place post-2015. continuing to be treated with Peg and Riba. Government public awareness campaign lasted for 2 weeks and messaging was Prevention of transmission. As part Just over half of those estimated to be targeted at high prevalence areas. This was of the action plan / framework the infected have been diagnosed and 3% unsatisfactory bit like a damp squib. Scottish Government has increased of those have been initiated onto therapy outlets and access to needle exchange. for HCV. In recent years the emphasis has been All paraphernalia is provided including on injecting drug use with the campaign sterile water. Foil is also being introduced slogan (ever injected; get tested). to persuade people to stop injecting and begin smoking heroin. Needle exchange No government awareness targeting those is not provided in the Scottish Prisons. who received blood / blood products before screening was introduced or The reliance on harm reduction does not awareness campaigns directed at ethnic capture recreational drug injectors who minority populations. may not access these services. There is no universal screening for HCV for expectant Evidence-based policy and data for mothers only for HIV and HBV. There is action. The Scottish SHBBV Framework no national policy to find people who have is too wide ranging and includes HIV and been infected for decades. teenage pregnancy, the outputs are not clearly measurable. There are no clear Tattooing in unlicensed premises is not target dates set. The Scottish Government considered to be a risk factor in Scotland intends to roll over the existing outputs as we have a low prevalence. There is into the next incarnation of the framework. no routine vaccination for all infants The 3rd sector feedback on the outputs is in respect of HBV. Our blood supply unsupportive of simply repeating the same is screened and universal precaution format. There are no clearly defined dates procedures are in place within health care or actions. The 3rd sector is also unhappy settings to minimise the risk. at how funding is provided, with services European Region Chapter European 7:

184 Global Community Hepatitis Policy Report

United Kingdom of Great Britain and Northern Ireland

Waverley Care*

NGO – direct service provider Edinburgh, United Kingdom of Great Britain and Northern Ireland www.waverleycare.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of the United Kingdom of Great Britain and Northern Ireland reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 60.0% thought to not be accurate for 32.0% the government information for 8.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.3, 2.2, 3.1, 3.2, 4.1, 4.5, 4.6, 4.8, 4.9, 1.2, 2.1, 3.3, 3.4, 3.5, 4.2, 4.4 and 5.1. 4.3 and 4.7. 4.10, 5.2, 5.3, 5.4 and 5.5.

Survey comments from Waverley Care:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is a written national strategy or plan that Scotland has its own national strategy around this information focuses exclusively on the prevention and control Hepatitis C as health is devolved to the Scottish is accurate. of hepatitis C. It includes components for raising Government and we are not governed by the awareness, surveillance, prevention in general, UK Government on this issue. The Scottish prevention of transmission via injecting drug use, Government’s Strategy is called ‘Sexual Health prevention of transmission in health-care settings, and Blood Borne Virus Framework 2011–15. treatment and care, and coinfection with HIV.

1.3 The government has a viral hepatitis prevention Again accurate for Scotland. and control programme that includes activities targeting the following specific populations: health-care workers (including health-care waste handlers), people who inject drugs, migrants, prisoners, the homeless, people living with HIV, people at risk for STI and pregnant women (antenatal screening).

2.2 The government collaborates with the This is indeed accurate; however, in Scotland following in-country civil society groups to develop the main NGOs involved are: Hepatitis Scotland, and implement its viral hepatitis prevention and Waverley Care, Addaction and Positive Help. control programme: Hepatitis C Trust, Addaction, British Liver Trust, Exchange Supplies, Needle Exchange Forum and Injecting Advice.

3.1 There is routine surveillance for viral hepatitis. Surveillance is coordinated nationally in Scotland

There is a national surveillance system for the by Health Protection Scotland. 7: Chapter following types of acute hepatitis: A, B, C and E, and for the following types of chronic hepatitis: B and C. European Region

* World Hepatitis Alliance member.

185 United Kingdom of Great Britain and Northern Ireland

Waverley Care continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.2 There are standard case definitions for hepatitis. Again collated by Health Protection Scotland this information Deaths, including from hepatitis, are reported to and all local health boards. is accurate. a central registry. No hepatitis case is reported as “undifferentiated” or “unclassified” hepatitis.

4.6 There is a national policy on injection safety I do not know the answer to the second part in health-care settings, but it is not known what of this question. type of syringes it recommends for therapeutic injections. It is not known whether single-use or auto-disable syringes, needles and cannulas are always available in all health-care facilities.

4.9 There is a national policy relating to the Covered in the Scottish Government national prevention of viral hepatitis among people who framework cited above. inject drugs.

5.4 Publicly funded treatment for hepatitis B and The amount of money spent by Government hepatitis C is available to the entire population. is known. The amount spent by the government on such treatment is not known.

××To our knowledge, 1.2 There is no designated governmental unit/ The Scottish Government has a dedicated team this information is department responsible solely for coordinating working on all blood-borne virus issues including not accurate. and/or carrying out viral hepatitis-related hepatitis C and are responsible for the strategy activities. It is not known how many people work cited in 1.1 They work in partnership with Health full-time on hepatitis-related activities in all Protection Scotland, NHS Boards and BBV NGOs. government agencies/bodies.

2.1 The government did not hold events for World The Scottish Government has always encouraged Hepatitis Day 2012, but has funded other viral activities around World Hepatitis Day, through hepatitis public awareness campaigns since their funding of the national NGO – ‘Hepatitis January 2011 (Annex A). Scotland’. Waverley Care and all health boards across Scotland works in partnership with Hepatitis Scotland to ensure that these activities are coordinated and joined up.

3.3 Liver cancer cases are registered nationally, Again all cases of coinfection are also collated but cases with HIV/hepatitis coinfection are not. by Health Protection Scotland and local The government publishes hepatitis disease health boards. reports quarterly and annually. European Region Chapter European 7:

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Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 3.4 Hepatitis outbreaks are not required to be The Scottish Government requires health boards this information is reported to the government. There is adequate across Scotland to report on outbreaks of not accurate. laboratory capacity nationally to support Hepatitis, this is then collated by laboratories investigation of outbreaks and other and Health Protection Scotland. surveillance activities.

3.5 There is no national public health research In developing the Scottish Government’s Action agenda for viral hepatitis. Viral hepatitis serosurveys Plan national research has been carried out and are conducted regularly; the target populations are continues to be done by Health Protection Scotland. people who inject drugs, female sex workers and men who have sex with men. The last serosurvey was carried out in 2011.

4.2 The government has not established the goal Hepatitis B is also covered by the Scottish of eliminating hepatitis B. Government’s Sexual Health and Blood Borne Virus Framework 2011–15.

4.4 There is a national policy that specifically All transmission routes for all blood-borne viruses targets mother-to-child transmission of hepatitis B are covered in the Scottish Government’s national (Annex B). framework cited above, including Hepatitis B and mother-to-child transmission.

5.1 Health professionals obtain the skills and We have national guidance for the management competencies required to effectively care for people of all blood-borne viruses. with viral hepatitis through schools for health professionals (pre-service education), on-the-job training and postgraduate training. There are no national clinical guidelines for the management of viral hepatitis, but there are for the management of HIV, which include recommendations for coinfection with viral hepatitis. Chapter 7: Chapter European Region

187 United Kingdom of Great Britain and Northern Ireland

Waverley Care continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no 4.3 Information was not provided on the I do not know the answer to this question. position regarding percentage of newborn infants nationally in a this statement. given recent year who received the first dose of hepatitis B vaccine within 24 hours of birth or the percentage of one-year-olds nationally (ages 12–23 months) in a given recent year who received three doses of hepatitis B vaccine.

4.7 Official government estimates of the number I do not know the answer to this question. and percentage of unnecessary injections administered annually in health-care settings were not known.

Statement from Waverley Care Awareness-raising, partnerships Screening, care and treatment. The regarding key hepatitis policy issues and resource mobilisation. Noting Scottish Government’s national Sexual in the United Kingdom of Great Britain the Scottish Government has done an Health and Blood Borne Virus Framework and Northern Ireland: excellent job and our national strategy 2011–15. How this has been implemented and its implementation are regarded as an is well documented and is recognised as a National coordination. The Scottish excellent approach and model, worldwide. model that has worked. Government has an excellent approach to national coordination. The Scottish Evidence-based policy and data Governments Sexual Health and Blood for action. It is clearly the role of all Borne Virus Framework 2011–15 was governments to take equal responsibility developed by all key stakeholders of the care of all citizens living with a including health boards, clinical and social blood-borne virus. care staff, NGO’s and patients. All National Health Service Boards have an established Prevention of transmission. All Managed Care Network for BBVs and stakeholders should have an equal these are multidisciplinary teams involving involvement in the development of all stakeholders at a local level. All NHS national blood-borne virus strategies Boards in Scotland are expected to and policies to enable these policies to submit annual activity reports in line with be effective and responsive to the needs the national framework to the Scottish of individuals living with a BBV. This is Governments Sexual Health and Blood clearly the case in Scotland. Borne Virus Team. European Region Chapter European 7:

188 South-East Asia Region 8

Global Community Hepatitis Policy Report

8 South-East Asia Region

1 Bangladesh • Liver Foundation of Bangladesh • Viral Hepatitis Foundation Bangladesh

2 India • Community Network for Empowerment 5 • Liver Foundation, West Bengal 2 4 Indonesia 1 3 6 • PPHVI – The Association of Viral Hepatitis Controllers in Indonesia

4 Myanmar 3 • The Liver Foundation (Myanmar)

5 Nepal • Union C

6 Thailand • Liver Care Foundation • Thai Association for the Study of the Liver

This chapter presents South-East Asia region findings from 8.1. Respondents the World Hepatitis Alliance’s 2014 civil society survey in two sections. Nine organisations from six countries in the South-East Asia region responded to the World Hepatitis Alliance’s 2014 civil The first section provides an overview of respondents. society survey. The governments of all of those countries The second section describes the extent to which respondents provided information for the 2013 WHO global policy report, agreed or disagreed with what their governments reported about and thus all respondents were able to comment on the accuracy hepatitis policies and programmes for the 2013 World Health of their governments’ responses. Additional information about Organization (WHO) Global Policy Report on the Prevention respondents is presented in Table 8.1. and Control of Viral Hepatitis in WHO Member States. It also notes the issues associated with the greatest amount of agreement and disagreement.

Table 8.1. South-East Asia region respondents to the World Hepatitis Alliance’s 2014 civil society survey (N=9)

Type of respondent (#)

Country Chapter 8: Chapter Civil society survey respondents (#) hepatitis – NGO patient group NGO – direct service provider NGO – other society Medical Private foundation Other

Bangladesh 2 1 1

India 2 1 1 Region Asia South-East Indonesia 1 1 Myanmar 1 1 Nepal 1 1 Thailand 2 1 1

191 South-East Asia Region continued

Figure 8.1. Types of organisations submitting survey responses, Figure 8.2. Responses received by income group,a South-East Asia South-East Asia region (N=9) region (N=9) Figure 8.2 11% NGO: direct 8% 22% service provider Upper-middle- Other income

Types of Responses organisaions 22% received by submiing survey NGO: other 44% income group,a Low-income responses, South-East Asia South-East Asia region (N=9) 22% region (N=9) Private foundaion 33% Lower-middle- 22% income Medical society

a Source for income group classifications: World Bank 2013 data (http://data.worldbank.org/about/country-and-lending-groups).

One respondent (11%) identified itself as a nongovernmental The following survey items were most commonly identified direct service provider (Figure 8.1). Two (22%) identified as points on which civil society respondents in the South-East themselves as medical societies, and two (22%) identified Asia region agreed with their governments’ responses: item 2.1, themselves as private foundations. regarding World Hepatitis Day activities and viral hepatitis awareness campaigns; item 3.5, regarding a national viral Fifty-five percent of respondents were either voting or non-voting hepatitis research agenda and viral hepatitis serosurveys; members of the World Hepatitis Alliance at the time they submitted item 4.1, regarding the existence of a national hepatitis A their surveys (data not shown). vaccination policy; item 4.2, regarding the goal of eliminating hepatitis B; item 4.6, regarding injection safety in health care Two respondents (22%) were based in upper-middle-income settings; and item 4.8, regarding infection control for blood countries, three (33%) in lower-middle-income countries, products. Further details are presented in Table 8.2. and four (44%) in low-income countries (Figure 8.2). The following survey items were most commonly identified as points on which civil society respondents in the South-East Asia region disagreed with their governments’ responses: item 1.3, 8.2. Highlights relating to civil society agreement regarding whether the government has a viral hepatitis prevention or disagreement with what governments reported and control programme that includes activities targeting specific populations, and item 5.5, regarding the inclusion of hepatitis B The civil society survey contained 25 items based on the drugs and hepatitis C drugs on national essential medicines lists information that governments provided for the 2013 WHO global and in government-subsidised programmes. Further details are policy report. For each item, civil society stakeholders were asked presented in Table 8.3. to consider the government response to one or more questions about national hepatitis policies and programmes, and to select one of the following three statements: To our knowledge, this information is accurate; To our knowledge, this information is not accurate; or We take no position regarding this statement.

Detailed findings for all civil society survey items are presented in Annex C. In sum, two-thirds of all civil society respondents thought that the information from their governments was accurate for 20 or more of the 25 items. Regarding the proportions of respondents who marked items as “not accurate,” one-third thought that the information from their governments was not accurate for at least six items. Chapter 8: South-East Asia Region

192 Global Community Hepatitis Policy Report

Table 8.2. Survey items eliciting the highest levels of agreement from civil society respondents, South-East Asia region (N=9)

# (%) of respondents who indicated Question(s) addressed by governments for 2013 WHO global agreement with their governments’ Survey item policy report response(s) by selecting “to our knowledge, this information is accurate” Did your government hold events for World Hepatitis Day 2012? 2.1 Has your government funded any public viral hepatitis awareness 9 (100%) campaigns since January 2011, other than World Hepatitis Day? Is there a national public health research agenda for viral hepatitis?

3.5 Are viral hepatitis serosurveys conducted regularly? 8 (88.9%) If yes, how often? When was the last one carried out? Please specify the target populations. Is there a national hepatitis A vaccination policy? If yes, what groups 4.1 8 (88.9%) does the policy address? Has your government established the goal of eliminating 4.2 8 (88.9%) hepatitis B? If yes, in what timeframe? Is there a national policy on injection safety in health care settings? If yes, what type of syringes does the policy recommend for 4.6 therapeutic injections? 8 (88.9%) Are single-use or auto-disable syringes, needles and cannulas always available in all health care facilities? Is there a national infection control policy for blood banks? Are all donated blood units (including family donations) and blood 4.8 products nationwide screened for hepatitis B? 8 (88.9%) Are all donated blood units (including family donations) and blood products nationwide screened for hepatitis C?

Table 8.3. Survey items eliciting the highest levels of disagreement from civil society respondents, South-East Asia region (N=9)

# (%) of respondents who indicated Question(s) addressed by governments for 2013 WHO global disagreement with their governments’ Survey item policy report response(s) by selecting “to our knowledge, this information is not accurate” Does your government have a viral hepatitis prevention and control 1.3 programme that includes activities targeting specific populations? 5 (55.6%) If yes, please indicate which populations. Which hepatitis B drugs and hepatitis C drugs are included 5.5 on the national essential medicines list or are subsidised 3 (33.3%) 8: Chapter by the government? South-East Asia Region Asia South-East

193 Bangladesh

Liver Foundation of Bangladesh*

NGO – liver disease prevention, treatment, education and research Dhaka, Bangladesh www.liver.org.bd

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Bangladesh reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ×× The government information was --The respondent took no position on thought to be accurate for 80.0% thought to not be accurate for 16.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked 1.1, 1.2, 2.1, 2.2, 3.1, 3.2, 3.3, 3.4, 3.5, 1.3, 4.8, 4.10 and 5.1. “take no position”: 5.4. 4.1, 4.2, 4.3, 4.4, 4.5, 4.6, 4.7, 4.9, 5.2, 5.3 and 5.5.

Survey comments from the Liver Foundation of Bangladesh:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 2.2 The government collaborates with In different issues regarding prevention and this information the following in-country civil society control of viral hepatitis, some government is accurate. group to develop and implement its viral officials regularly communicate with the Liver hepatitis prevention and control programme: Foundation of Bangladesh. Liver Foundation of Bangladesh.

3.1 There is no routine surveillance for viral hepatitis. On the national level there is no routine surveillance system for viral hepatitis. Recently the government started surveillance of foodborne infectious diseases in one of its surveillance programmes where hepatitis A and hepatitis E are included and being conducted regularly. Similarly, hepatitis B and hepatitis C are monitored regularly in another programme (safe blood programme).

3.5 There is no national public health research Recently the government has planned to start agenda for viral hepatitis. Viral hepatitis a serosurvey programme nationwide for several serosurveys are not conducted regularly. diseases including viral hepatitis.

4.3 Information was not provided on the First dose of Hepatitis B vaccine is given at 6th week percentage of newborn infants nationally in a of age along with DPT Vaccine in EPI programme. given recent year who received the first dose of hepatitis B vaccine within 24 hours of birth or the percentage of one-year-olds nationally (ages 12–23 months) in a given recent year who received three doses of hepatitis B vaccine.

4.6 There is no national policy on injection safety Draft injection safety policy is waiting for in health-care settings. Single-use or auto-disable approval of government. syringes, needles and cannulas are always available in all health-care facilities. Chapter 8: South-East Asia Region

* World Hepatitis Alliance member.

194 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.5 The following drugs for treating hepatitis B Only lamivudine and tenofovir are present this information drugs are on the national essential medicines list: to the essential drug list. is accurate. interferon alpha, pegylated interferon, lamivudine, adefovir dipivoxil, entecavir, telbivudine and tenofovir. The following drugs for treating hepatitis C are on the national essential medicines list: interferon alpha, pegylated interferon, ribavirin, boceprevir and telaprevir.

××To our knowledge, 1.3 The government does not have a viral hepatitis There are prevention and control activities in the this information prevention and control programme that includes national EPI programme targeting children under is not accurate. activities targeting specific populations. the age of one.

4.8 There is a national infection control policy for Though there is a law of “Safe Blood Transfusion blood banks. Not all donated blood units and blood Act 2002” which was approved by parliament, products nationwide are screened for hepatitis a national blood policy is still required to guide B. It is not known whether all donated blood units and bring blood use in a uniform way to be (including family donations) and blood products followed by all blood transfusion centres nationwide are screened for hepatitis C. across the country.

4.10 The government does not have guidelines There is a foodborne infection surveillance that address how hepatitis A and hepatitis E can programme started by the Institute of Epidemiology, be prevented through food and water safety. Disease Control and Research, Bangladesh from 2013.

--We take no 5.4 Publicly funded treatment is not available A very small percentage of people benefit from position regarding for hepatitis B or hepatitis C. the public funding of treatment. this statement.

Statement from the Liver Foundation >> To establish a viral hepatitis disease >> The health system as a whole may of Bangladesh regarding key hepatitis unit, similar to other major departments be developed with introducing health policy issues in Bangladesh: in health services like mycrobacterial insurance scheme for health services disease control, malaria and parasitic in the country. As viral hepatitis and its consequences disease control, and National AIDS and are multi-faceted, prevention and control Sexually Transmitted Disease Control The designated institute/person should measures and management procedures Programme under director general establish liaison/links with national and differ from one another. The diseases of health services. international stakeholders, development also traverse both communicable and partners like the United Nations Development 8: Chapter >> A separate institute may be established noncommunicable phases. So the disease Programme, UNICEF, the World Health and designated as national viral hepatitis burden in acute and chronic stage including Organization and the World Bank for institute which may function as a centre cirrhosis and liver cancer and great implementing programmes at micro levels

of excellence in this field and all types of Region Asia South-East complications in pregnancy contribute for awareness-raising, human resource investigation, surveillance of outbreaks, at a great extent to disease burden development and capacity-building for case management, monitoring and of the country. diagnosis and management. Local follow-up of chronic patients and conduct pharmaceutical companies may contribute of all hepatitis-related research activities In view of the facts above, we must have through production of vaccines, reagents and to establish network with other changes in the country’s health system. and essential drugs for diagnosis, international organisations. Considering viral hepatitis a major public prevention and management of hepatitis health issue, the systemic changes >> A person may be designated as a at a subsidised rate. proposed in health services are as follows: viral hepatitis focal point holding responsibility to oversee viral hepatitis activities in the country.

195 Bangladesh

Viral Hepatitis Foundation Bangladesh*

Private foundation Dhaka, Bangladesh

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Bangladesh reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 52.0% thought to not be accurate for 24.0% the government information for 24.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 2.1, 3.1, 3.2, 3.3, 3.4, 3.5, 4.1, 1.3, 4.3, 4.4, 5.1, 5.4 and 5.5. 2.2, 4.2, 4.5, 4.7, 4.9 and 5.2. 4.6, 4.8, 4.10 and 5.3.

The Viral Hepatitis Foundation Bangladesh did not provide any comments about survey items. The respondent also did not provide a statement regarding key hepatitis policy issues in Bangladesh. Chapter 8: South-East Asia Region

* World Hepatitis Alliance member.

196 Global Community Hepatitis Policy Report India

Community Network for Empowerment (CoNE)*

NGO – network of 14 community-based organisations of people who use drugs Imphal East, India www.conemanipur.net

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of India reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 60.0% thought to not be accurate for 28.0% the government information for 12.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 2.1, 2.2, 3.1, 3.2, 3.5, 4.2, 4.3, 4.5, 4.6, 1.1, 1.2, 1.3, 3.3, 3.4, 4.4 and 5.3. 4.1, 4.7 and 4.10. 4.8, 4.9, 5.1, 5.2, 5.4 and 5.5.

Survey comments from the Community Network for Empowerment.

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 2.2 The government does not collaborate with The concerned officials bluntly ignore us when this information in-country civil society groups to develop and we approach them to initiate a consultation is accurate. implement its viral hepatitis prevention and on improving access to hepatitis C treatment. control programme.

3.1 There is no routine surveillance for viral hepatitis. Even the existing antiretroviral centres do not maintain the data for coinfection.

3.2 There are standard case definitions for Government is still yet to realise that mortality hepatitis. Hepatitis deaths are not reported to a among people on antiretroviral therapy is due central registry. The percentage of hepatitis cases to hepatitis B and hepatitis C. reported as “undifferentiated” or “unclassified” hepatitis is not known.

4.2 The government has not established the goal Even patients on antiretroviral therapy of eliminating hepatitis B. with hepatitis B coinfection are not encourage with tenofovir.

4.9 It is not known whether there is a national Whenever we approach the State AIDS Control policy relating to the prevention of viral hepatitis Society for hepatitis-related issues among people among people who inject drugs. who inject drugs (PWID), they are not concerned.

Prevention of hepatitis C among PWID is not on 8: Chapter the agenda in national harm reduction strategy. South-East Asia Region Asia South-East

5.2 The government does not have national The referral services provided by targeted policies relating to screening and referral to care Intervention projects for HIV testing to for hepatitis B or hepatitis C. Integrated counselling and testing centres do not include hepatitis.

* World Hepatitis Alliance member.

197 India

Community Network for Empowerment continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 1.1 There is a written national strategy or plan that At least the government has started taking this information focuses exclusively on the prevention and control the initiative for hepatitis B vaccination is not accurate. of viral hepatitis. It includes components for raising for newborn babies. awareness, surveillance, vaccination, prevention in general, prevention of transmission via injecting drug use, prevention of transmission in health-care settings, and treatment and care.

1.2 There is a designated governmental unit/ We have been doing advocacy on improving department responsible solely for coordinating access to hepatitis C treatment since 2012 with and/or carrying out viral hepatitis-related the Government Health Department. However, activities. It has four staff members. It is not known we do not know of the existence of such teams how many people work full-time on hepatitis- or units at the state level solely for hepatitis C. related activities in all government agencies/ bodies.

1.3 The government has a viral hepatitis prevention Based on our experience, most health care and control programme that includes activities providers are still lacking adequate information targeting the following specific population: health- on viral hepatitis. care workers, including health-care waste handlers.

3.3 Liver cancer cases and cases with HIV/ Cases are not registered nationally and as hepatitis co infection are registered nationally. such the disease report is not applicable. The government does not publish hepatitis disease reports.

3.4 Hepatitis outbreaks are reported to the Hepatitis outbreaks are neither reported to the government and are further investigated. There government nor does the government have any is inadequate laboratory capacity nationally to adequate laboratory to support investigations. support investigation of viral hepatitis outbreaks and other surveillance activities.

5.3 People testing for both hepatitis B and hepatitis C We have no such system as of now. Hepatitis B register by name; the names are kept confidential and hepatitis C are among the mandatory tests within the system. Hepatitis B and hepatitis C for antiretroviral initiation. Peoples are paying tests are free of charge for all individuals and Rs 300 to the government hospital whereas are compulsory for blood donors. the fee is Rs 750 at private diagnostic centres.

--We take no 4.1 There is no national policy Our network mainly focuses on hepatitis B position regarding on hepatitis A vaccination. and hepatitis C. We have no information this statement. on hepatitis A. Chapter 8: South-East Asia Region

198 Global Community Hepatitis Policy Report

Statement from the Community In spite of having such rich data for more Civil society should be provided a greater Network for Empowerment than a decade now, and in spite of India role in curbing viral hepatitis in terms of regarding key hepatitis policy being a signatory to the World Health planning, implementation and monitoring. issues in India: Assembly’s 2010 viral hepatitis resolution, Community-based groups and networks nothing substantial has been done to of hepatitis C-infected and -affected people India does not have a surveillance improve services, prevention measures should be involved in all decision-making, system for hepatitis C and the burden or provide treatment as a government planning and implementation of hepatitis of the disease is unknown. However, the response. programming. graveness of the situation is documented through data and information from Considering the seriousness of the independent studies. Recent studies hepatitis issue in India, particularly conducted by the World Health hepatitis C, the government should Organization have reported that among develop a national strategy to respond to people who inject drugs the national this public health issue including resource prevalence rate of HIV/hepatitis C allocation at the earliest. An exclusive coinfection is 92%1 while individual sites programme for prevention of hepatitis have also reported a prevalence range should be implemented in collaboration of 26% to 93%.2 with different key stakeholders.

In the context of Manipur, the prevalence of the coinfection has been reported as 92%3 and 90.2% in Churachandpur district.4 Chapter 8: Chapter South-East Asia Region Asia South-East

1. Walsh Nick, July 2009, Scoping document: A review of viral hepatitis in Injecting Drug Users and assessment of priorities for future activities, Prepared for WHO Geneva. P/8. 2. Ibid p/16. 3. Saha, MK, et al, February 2000, Prevalence of HCV and HBV infection amongst HIV seropositive intravenous drug users and their non-injecting wives in Manipur, Indian J Medical Research. 4. Devi KhS et al, March 2009, Coinfection by human immunodeficiency virus, hepatitis B virus and hepatitis C virus in injecting drug users, Indian J Medical Research.

199 India

Liver Foundation, West Bengal*

NGO – direct service provider Kolkata, India www.liverfoundation.in

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of India reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 80.0% thought to not be accurate for 4.0% the government information for 16.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 3.4, 3.5, 4.1, 1.1. 1.2, 4.4, 4.10 and 5.3. 4.2, 4.3, 4.5, 4.6, 4.7, 4.8, 4.9, 5.1, 5.2, 5.4 and 5.5.

The Liver Foundation, West Bengal did not provide any comments about survey items.

Statement from the Liver Foundation, interest. Indiscriminate and unnecessary and cancer should be initiated. There are West Bengal regarding key hepatitis hospitalisations, unnecessary drug use multiple stakeholders with different roles policy issues in India: and unnecessary therapeutic procedures that can be knit together to create a proactive are some of the examples of imperfect hepatitis supportive ambience. Chronic hepatitis, as a term, is exclusionary practice of relevance in hepatitis care that for insurance coverage by most are in vogue. Liver Foundation, West Bengal, is a voluntary insurance providers. organisation focused on different health There is a perception even in government issues. Initiated by a handful of professionals No national hepatitis control programme circles that hepatitis B and hepatitis C are and socially committed scientists having an exists that can provide support to infected not priorities in India which is besieged interest and focus on liver disease awareness and diseased people for their health care with so many other conditions. Lack of as well as public health issues facing the expenditures through government funding. data on the disease burden and economic country. So this view is based on our own impact of hepatitis are the primary reasons experience as well as different reports No guidelines or standard protocol for the for this. and statistics. management of hepatitis exist. This lays bare the situation even further and creates National coordination for necessary a freestyle situation in patient care regulations for supporting patient’s strategies. In the absence of any system for interest including health care-related travel monitoring of clinical and hospital practice, subsidies treatment subsidies, other social this often turns out to be an absolutely security benefits that are available to “zero protection” scenario for patient people with chronic diseases such as HIV Chapter 8: South-East Asia Region

* World Hepatitis Alliance member.

200 Global Community Hepatitis Policy Report Indonesia

The Association of Viral Hepatitis Controllers in Indonesia

Medical society Central Jakarata, Indonesia

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Indonesia reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 96.0% thought to not be accurate for 4.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 3.4, 4.9. 3.5, 4.1, 4.2, 4.3, 4.4, 4.5, 4.6, 4.7, 4.8, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from the Association of Viral Hepatitis Controllers in Indonesia:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is a written national strategy or plan that As far as we have observed, the Indonesian this information focuses exclusively on the prevention and control government, especially the Ministry of Health is accurate. of viral hepatitis. It includes components for raising has been striving to increase the awareness awareness, surveillance, vaccination, prevention of hepatitis virus (in particular Hepatitis B) in general, prevention of transmission via injecting starting from boosting the theme of hepatitis drug use, prevention of transmission in health-care in the World Health Assembly, then supporting settings, and treatment and care. the World Hepatitis Day campaign every July 28 since the year 2010. The prevention programme towards hepatitis B has been implemented since the year of 1986, which was the pilot project in Lombok; and then integrated to the programme of basic immunisation in 1997 and in 2003, a vaccination to the newborn babies, afterwards in 2004 HB was integrated with the combination of DPT/HB and in 2014, it was integrated with vaccine HIB (Haemophylus influenzae B).

Hepatitis surveillance has been executed but it was still clinically based (not in a laboratory way) so it has not been broken up into its kind (A, B, or C). Prevention for drug abuse has been done together with the prevention programme for HIV. The pilot project for screening the pregnant women are being done currently, and it has been planned that HBIG will be given to babies. Regarding the treatment, it has been sought to give the lamivudine with low cost, and it has been proposed to be put into BPJS (social security programme). Chapter 8: Chapter South-East Asia Region Asia South-East

201 Indonesia

The Association of Viral Hepatitis Controllers in Indonesia continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.2 There is no designated governmental unit/ Based on our observations, it is true that this information department responsible solely for coordinating at this time in the Department of Health there is accurate. and/or carrying out viral hepatitis-related is no specific department for hepatitis but it activities. There are 12 full-time equivalent staff is combined with diarrhoea, gastrointestinal members who work on hepatitis-related activities infection and hepatitis. Also in October 2010 in all government agencies/bodies. recently, actually at least 20 personnel are needed to prevention and treatment programmes. Details on this case are being prepared. We cooperate with professional organisations (The Indonesian Association for the study of the Liver) and Working Group of Viral Hepatitis in the Department of Health to help preparing the guideline of hepatitis B treatment and guideline for screening the pregnant mother.

1.3 The government has a viral hepatitis prevention For prevention and control, the prevention and control programme that includes activities activity is performed by immunisation at the targeting the following specific population: earliest age possible by giving HB-O immediately health-care workers, including health-care after the baby born and after given vitamin K. waste handlers. Immunisation can only be given to the babies born at the hospital/maternity clinic or other health facilities. As it is known there is still quite a big number of babies who were born outside the health facilities so that it was still tolerable if immunisation was given to the babies whose age were less than seven days for the areas which ere difficult to reach. For health-workers, the immunisation are carried out independently by some hospitals, whilst in general for health-care and waste handlers it was done by the Environmental Health Directorate in PHBS programme (Clean and healthy behaviour programme).

2.1 The government held events for World Hepatitis For the event of World Hepatitis Day 2012, Day 2012. It has funded other viral hepatitis public the government prepared fund to increase public awareness campaigns since January 2011 (Annex A). awareness, and this campaign has started since January 2011. Because this is the new activity then it requires a bureaucratic time. Chapter 8: South-East Asia Region

202 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 2.2 Information was not provided on whether The government collaborates with the this information the government collaborates with in country civil professional organisations such as PPHI-The is accurate. society groups to develop and implement its viral Indonesian Association for the Study of the hepatitis prevention and control programme. Liver, IDAI -Indonesian Pediatric Association, IDI-Indonesian Doctors Association , IBI-The Indonesian Midwives bonds, PPNI-Indonesian national nurses union and also with several other organisations among others the Working Group of Viral Hepatitis in the Department of Health/ Pokja Hepatitis, Indonesian AIDS Society, PKNI (Perkumpulan Korban NAFZA Indonesia), Ikatan Perempuan Positif HIV – woman bond positive HIV, Perhimpunan Obstetri dan Ginekologi Indonesia- Indonesian Society of Obstetrics and Gynecology, Perhimpunan Patologi Klinik-society of clinical pathology.

3.1 There is no routine surveillance for viral hepatitis. Hepatitis surveillance has been done since a long time ago but it is still in the shape of clinical hepatitis reports; especially in the Health Centre community, the reagent is not available for hepatitis type checking. Need to be Improved.

3.2 There are standard case definitions for hepatitis. Indonesia has had a guideline prepared by the Deaths, including from hepatitis, are reported government and experts using the reference to a central registry. Information was not provided of World Health Organization guidelines. on the percentage of hepatitis cases reported The report in the main office is received by the as “undifferentiated” or “unknown” hepatitis. sub-directorate of surveillance disease control and environmental health, but it has not been socialised properly and not yet fully understood the definition of establishing the diagnosis and the treatment procedure. Need to be improved.

3.3 Liver cancer cases are registered nationally, Liver cancer has been reported nationally but it is not known whether cases with HIV/ for the coinfection with HIV but it is still hepatitis coinfection are. The government in the shape of sporadic reports based on publishes hepatitis disease reports monthly the study result. and annually. Chapter 8: Chapter

3.4 Hepatitis outbreaks are reported to the There is always an investigation for the outbreak government and are further investigated. condition. Blood sample is taken and then sent There is adequate laboratory capacity nationally to Badan Lit Bang Kes (Agency for Healthcare Region Asia South-East to support investigation of outbreaks and other Research and Development) to identify the surveillance activities. hepatitis type. The readiness of this Agency is sufficient in the term of reagent supply and the examination elisa/PCR.

203 Indonesia

The Association of Viral Hepatitis Controllers in Indonesia continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.5 There is a national public health research National research agenda for viral hepatitis has this information agenda for viral hepatitis. Viral hepatitis been carried out by Badan Lit Bang Kes (Agency is accurate. serosurveys are not conducted regularly. for Healthcare Research and Development) in the form of Basic Health Research. This research is performed in every 3 years. In 2014, surveys will be carried out integratedly with HIV.

4.1 There is no national policy on hepatitis A vaccination. There is no national policy for the prevention of hepatitis A but the vaccine in the private sector is available at their own expense. The government policy is to improve the environmental cleanliness and individual sanitation hygiene.

4.2 The government has not established the goal Government has not established the goal of eliminating hepatitis B. of eliminating hepatitis B because they still have to arrange several matters for example, to reach the high level and evenly coverage of hepatitis B immunisation; to enhance the surveillance system that can cover the entire health care facility; to be able to have a network for the examination of the type of hepatitis; to increase the awareness towards the hepatitis disease; to improve the knowledge of the health-workers to understand/recognise the hepatitis disease; to refer the patient that should be referred; and free treatment for hepatitis disease.

The constraint that we have is we need to establish the correct magnitude of the problem. The accurate data is not yet known.

4.3 Information was not provided on the percentage Regarding the result of the coverage yearly, of newborn infants nationally in a given recent year it could be seen from JRF/Joint Report Form who received the first dose of hepatitis B vaccine which was assessed by WHO and UNICEF, within 24 hours of birth. Nationally, 94% of one- it was separated between the coverage of year-olds (ages 12–23 months) in a given recent year babies born in the health-facility and in the field received three doses of hepatitis B vaccine. who were assisted by midwives. For Booster purposes, Pentavalent was given in the age of 18 months (this is the new policy). There are still differences in the data between Western and Eastern Indonesia. Chapter 8: South-East Asia Region

204 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.4 There is a national policy specifically targeting Blood screening is currently being done in this information mother-to-child transmission of hepatitis B (Annex B). Jakarta towards the pregnant mothers. It is as is accurate. an early initiation and approximately targeted about 5,000 pregnant women; and the next step is for those who are indicated “positive” to be followed by the examination of HBV-DNA, and their baby will be given HiG (at this time it is still in trial process).

In 2013 a screening had been carried out throughout Jakarta. In 2014 in Jakarta plus 12 new provinces, there will be an examination for 126,000 pregnant mothers and health workers. The collection of blood will be done approximately in August this year.

4.5 There is no specific national strategy and/or Up to now, there is not any government policy policy for preventing hepatitis B and hepatitis C yet to undertake the screening and immunisation infection in health-care settings. Health-care to the health-care workers, but there are several workers are not vaccinated against hepatitis B private hospitals that delivered immunisation prior to starting work that might put them at risk to their employees. In the National General of exposure to blood. Hospital Cipto Mangunkusumo, it had ever been given the immunisation of hepatitis B assisted by Askes (national insurance for civil servants/ government employee).

For the prevention of hepatitis C, the education to the Health-care workers who will do the medical treatment or who are in contact with blood, such as transfusion, then the injection is given in order to follow the existing Standard Operating Procedure (SOP).

4.6 There is a national policy on injection safety National policy for safety injection especially in health-care settings, which recommends for conducting the immunisation, it has been single-use and auto-disable syringes for used auto-disable syringe in order to prevent therapeutic injections. Single use or auto-disable to be used again. The need for a syringe is syringes, needles and cannulas are always sufficiently available. available in all healthcare facilities. Chapter 8: Chapter South-East Asia Region Asia South-East

205 Indonesia

The Association of Viral Hepatitis Controllers in Indonesia continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.1 Health professionals obtain the skills and Recently, the Sub-directorate of diarrhoea, this information competencies required to effectively care for hepatitis Disease Control along with the is accurate. people with viral hepatitis through schools professional organisations have prepared of health professionals (pre-service education) guidelines for treatment of Hepatitis B and and on-the-job training. There are no national Hepatitis C. As stated earlier since October 2010 clinical guidelines for the management of the programme of Hepatitis viruses have been viral hepatitis. included in the Sub-Directorate Disease Control in the Directorate General of Disease Control and Environmental Health, and started to perform several programmes related to hepatitis viruses, especially hepatitis B and hepatitis C. It is initiated with the examination of lab workers within the MOH and studies of pregnant woman. If they are positive then a further treatment is carried out in Jakarta. They will perform the same action next year in the other 12 provinces throughout Indonesia.

5.2 The government does not have national There is not a national policy yet for screening policies relating to screening and referral to care against hepatitis B or C, it is still in the level of for hepatitis B or hepatitis C. Pilot Project to the pregnant mothers in Jakarta.

5.3 People testing for both hepatitis B and Policy from Government to screen the blood donor hepatitis C register by name; the names are kept for hepatitis B, hepatitis C, HIV and syphilis exists. confidential within the system. Hepatitis B and Their names are kept confidential and screening hepatitis C tests are not free of charge. Information in Red Cross Lab is free of charge. The cost will be was not provided on whether hepatitis B or borne by the blood users including the blood bags. hepatitis C tests are compulsory for members of any specific group. The patient with the lab result “positive” will be given a letter and afterwards, they get treatment. It is not compulsory to do a screening for those who are not a blood donor.

4.8 There is a national infection control policy There is national infection control policy for for blood banks. All donated blood units (including blood banks. All donors are screened for hepatitis family donations) and blood products nationwide B, C, HIV and syphilis. It was initiated in 1992 and are screened for hepatitis B and hepatitis C. has since then been implemented.

4.10 The government has guidelines addressing There has been a guideline in the sub-directorate how hepatitis A and hepatitis E can be prevented of water supply and sanitation. It explains the through food and water safety. transmission of hepatitis A and E through food and drinks. The rapid test is needed.

5.4 Government employees are eligible for publicly The government employee who suffers from funded treatment for hepatitis B and hepatitis C. hepatitis B and C after diagnosis by the expert Information was not provided on the amount spent will get treatment. There is not any report yet by the government on such treatment. as to how many people have been treated by the government subsidy (in Askes -the government employee insurance/ names of medicines used has been listed). Chapter 8: South-East Asia Region

206 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

5.5 The following drugs for treating hepatitis B are The essential medicines which are available for on the national essential medicines list: pegylated Hepatitis B: (Pegylated Interferon, Lamivudin, interferon, lamivudine, adefovir dipivoxil and Telbivudin);(Pegylated Interveron and Ribavirin telbivudine. The following drugs for treating for Hepatitis C ). hepatitis C are on the national essential medicines list: pegylated interferon and ribavirin.

××To our knowledge, 4.9 It is not known whether there is a national policy There have been guidelines already for educating this information relating to the prevention of viral hepatitis among people who inject drugs in the form of pamphlet, is not accurate. people who inject drugs. brochures and flyer for user in the health centre. Guidelines for prevention of Hepatitis C already exists.

Statement from the Association In fact, the efforts to provide information The group above should continuously of Viral Hepatitis Controllers in about viral hepatitis has been widely provide more intensive information to the Indonesia regarding key hepatitis carried out either by the Ministry of Health policy makers, health professionals and policy issues in Indonesia: and professional organisations, especially to the wider community. Undoubtedly the professional organisations which are people in the Ministry of Health will be To raise the awareness and to promote involved in the problem of hepatitis and also supported by various stakeholders who are partnership is a huge challenge. Lack of other professional organisations or civil very concerned with the problem of hepatitis knowledge and awareness among the organisations which are very concerned because during this time the problem of general public, health professionals and with liver disease, especially hepatitis. hepatitis has become the huge public health policy-makers constitute a huge barrier. Unfortunately, these efforts run alone and problem which has been neglected. It is It is very essential for those people to have have not been coordinated. They do it with expected that the prevention and control of sufficient knowledge about viral hepatitis. their moderate way and with a very small viral hepatitis will be running much better. One of the causes of the slow response amount of frequency; so that the above from policy makers, health professionals efforts do not show the real results. In 1997, government had launched a mass and the general public is the wrong opinion Hepatitis has become the attention of the vaccination for hepatitis B in all provinces that viral hepatitis is not a crisis disease government following the World Health in Indonesia, but the results are not yet within a short time. Organization resolution in May 2010. as expected by all parties which is the decrease in the prevalence. One of the A person who is affected by chronic Hepatitis has become the government factors which may cause is the first HB hepatitis will experience complaints and programme since October 2010, and vaccination coverage that might not hit the severe symptoms after 15 to 25 years. therefore this section is incorporated target. And also the catch-up vaccination Whereas a person with chronic hepatitis in the Sub-directorate of Diarrhea and has not yet been programmed as well when it is symptomatic, it means it was Gastrointestinal infections. Nevertheless as the vaccination for high-risk groups. already too late and the healing will be we really expect that hepatitis has its own Another issue is the difficulty to access difficult or even impossible; except if the sub-directorate in the future. to the diagnostics for people living with patient is still able to have a surgery or hepatitis as well as the access to the further transplantation in which the cost becomes A stronger commitment from the Ministry treatment. As we have known these costs very expensive and only very few people of Health towards the hepatitis problem are very high. in Indonesia have access. Explaining and in Indonesia is expected starting from all 8: Chapter altering people’s perception above is one levels of high-ranking officials as well as its The majority of people in Indonesia of our urgencies in order to change the lower rank. To manage the problem of viral do not have the access to treatment paradigm about the awareness of viral hepatitis, it should be coordinated by a team for Hepatitis B, let alone for Hepatitis C. hepatitis disease. They should know that of special handling which is carried out by a Is local production for these hepatitis Region Asia South-East with early detection and vaccinations, number of staff in which the leader should medicines possible? then the chronic liver disease and liver continually focus specifically on viral cancer could be prevented so that the cost hepatitis, because in fact, the “Hepatitis of the treatment and care of patients with Problem itself” which is very huge. However, cirrhosis could be significantly reduced. now there has been an attention towards Therefore, the advanced cases which are the matters above and the good news is very expensive (tertiary treatment) will “Hepatitis Program” will be included in be shifted to the vaccination (primary the “National Five Year Development Plan prevention) and the earlier treatment 2015–2019. (secondary prevention).

207 Myanmar

The Liver Foundation*

Donation-based liver disease prevention and control organisation Rangoon, Myanmar

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Myanmar reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 36.0% thought to not be accurate for 36.0% the government information for 28.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.2, 2.1, 3.4, 4.1, 4.2, 4.6, 4.7, 4.8 and 5.1. 1.3, 2.2, 3.1, 3.2, 3.3, 3.5, 4.5, 5.3 and 5.4. 1.1, 4.3, 4.4, 4.9, 4.10, 5.2 and 5.5.

Survey comments from the Liver Foundation:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.2 There is a designated governmental unit/ There are Liver units in the Department this information department responsible solely for coordinating of Medical Research and General Hospitals is accurate. and/or carrying out viral hepatitis-related in Yangon, Mandalay, Naypyidaw, North Okalapa activities. It has 20 staff members. There are and Defence Services (Government). 49 full-time equivalent staff members who work on hepatitis-related activities in all government agencies/bodies.

2.1 The government did not hold events for World Liver Unit (Yangon General Hospital) has held Hepatitis Day 2012, but has funded other viral “World Hepatitis Day” events since 2009 while hepatitis public awareness campaigns since Liver Foundation (Myanmar) and GI and Liver January 2011 (Annex A). Society (Myanmar Medical Association) carried out the events in 2013.

4.8 There is a national infection control policy There are some drawbacks as screening tests for blood banks. All donated blood units (including are not molecular assays family donations) and blood products nationwide are screened for hepatitis B and hepatitis C.

××To our knowledge, 3.1 There is routine surveillance for viral hepatitis. It is included in notifiable diseases on paper this information There is a national surveillance system for the but public is not aware and it is not carried is not accurate. following types of acute hepatitis: A, B and C. out systematically. There is a national surveillance system for the following types of chronic hepatitis: B and C.

3.3 Liver cancer cases and cases with HIV/ This is just on paper and not accurate. hepatitis coinfection are registered nationally. The government publishes hepatitis disease reports monthly and annually. Chapter 8: South-East Asia Region

* World Hepatitis Alliance member.

208 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 3.5 There is a national public health research Funds are required for national serosurveys this information agenda for viral hepatitis. Viral hepatitis and has not been available for many years. is not accurate. serosurveys are conducted regularly; the most recent one was in 2010.

4.5 There is a specific national strategy and/or Few departments have this kind of facility. policy/guidelines for preventing hepatitis B and hepatitis C infection in health-care settings. Health-care workers are vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood.

5.3 People testing for both hepatitis B and True for blood donors and for some antenatal hepatitis C register by name; the names are kept care centres. confidential within the system. Hepatitis B and hepatitis C tests are not free of charge for everyone, but they are free for pregnant women and blood donors. Hepatitis B and hepatitis C tests are compulsory for pregnant women, blood donors and people applying for employment.

--We take no 1.1 There is a written national strategy or plan We have no information about this existing. position regarding that focuses primarily on the prevention and this statement. control of viral hepatitis, and also integrates other diseases. It includes components for raising awareness, surveillance, vaccination, prevention in general, prevention of transmission via injecting drug use, prevention of transmission in health-care settings, and treatment and care.

4.3 Nationally, 10% of newborn infants in a given Birth dose may be true in cities but difficult recent year received the first dose of hepatitis B in rural areas. vaccine within 24 hours of birth and 38% of one- year-olds (ages 12–23 months) in a given recent year received three doses of hepatitis B vaccine. Chapter 8: Chapter 4.9 There is a national policy relating to the Bylaws may be required for legal use of syringes prevention of viral hepatitis among people for people who inject drugs. who inject drugs. South-East Asia Region Asia South-East

5.5 The following drugs for treating hepatitis B are on These drugs are too expensive for routine use. the national essential medicines list: interferon alpha, pegylated interferon, lamivudine, adefovir dipivoxil, entecavir, telbivudine and tenofovir. The following drugs for treating hepatitis C are on the national essential medicines list: interferon alpha, pegylated interferon and ribavirin.

209 Myanmar

The Liver Foundation continued

Statement from the Liver Foundation advertisements on TV and radio In Myanmar, prior permission from the regarding key hepatitis policy issues broadcasting to reach the community. government or local authority is required in Myanmar: Simple advice such as not sharing razors, for local NGOs or international NGOs to toothbrushes, nail cutters, using only carry out activities in the community Of the five types of viral hepatitis, disposable syringes, compulsory screening such as health education talks, blood Hepatitis A, B, C, and E are endemic of blood donors, personal hygiene, screening, and vaccination programmes. in Myanmar. Hepatitis B and C are blood sanitation and vaccination are all of great Thus these groups should all work together borne infections and can cause chronic importance to prevent transmission. in harmony to obtain successful results. infections leading to complications. The government should take the initiative, Hepatitis A and E are water-borne In Myanmar, according to research make health plans and projects and also infections. All four infections can be findings, the main mode of transmission work in collaboration and coordination prevented and it is very important for the for hepatitis B is from mother to child with local NGOs and international NGOs general population to be aware of these during birth. Thus birth dose of hepatitis B to use their participation, to give them facts and the duty of the government to vaccine is of great importance to prevent official recognition and also use their carry out awareness-raising activities to chronic infection in the child. However resources and funding as available. educate the public. although hepatitis B vaccine has been introduced into the EPI over 10 years ago, Currently there is weakness in the the schedule is 2.5, 3.5 and 4.5 months with awareness-raising activities both the pentavalent vaccine currently. The for blood-borne infections (hepatitis B Government is trying to obtain monovalent and C) and waterborne infections (hepatitis HB vaccine for birth dose but not carried A and E) by the government. There out as yet. should be increase in the distribution of educational posters, pamphlets, Chapter 8: South-East Asia Region

210 Global Community Hepatitis Policy Report Nepal

Union C

NGO – hepatitis patient group Kathmandu, Nepal

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Nepal reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 80.0% thought to not be accurate for 16.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 2.1, 2.2, 3.1, 3.3, 3.5, 4.1, 4.2, 1.3, 3.4, 4.6 and 5.5. 3.2. 4.3, 4.4, 4.5, 4.7, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3 and 5.4.

Union C did not provide any comments about survey items.

Statement from Union C regarding Awareness-raising, partnerships Prevention of transmission. A rapid key hepatitis policy issues in Nepal: and resource mobilisation. Work with regimen of hepatitis B vaccination should community to increase the awareness be made widely available for people who National coordination. The government on viral hepatitis including media. inject drugs as recommended by WHO. of Nepal should acknowledge the need and express a greater level of commitment Evidence-based policy and data Screening, care and treatment. Currently, to hepatitis screening, diagnosis, for action. People who use drugs and no pharmaceutical companies exist in the treatment, care and support. For that, it people living with hepatitis B or hepatitis C country. Patients need to go to the Indian should immediately identify the national or HIV coinfection must be involved in the cities to bring in even pegylated interferon. coordination body which can work in close formulation, implementation, monitoring, and coordination with national centre for AIDS evaluation of all strategies and policies that Facilitate to make available the medication and STD control. affect their lives. for hepatitis B and hepatitis C including pegylated Interferon and new generation Viral hepatitis among people who use The United Nations, donors and foreign direct-acting antiviral agents. Government drugs must be appropriately included development agencies supporting HIV should start a dialogue with pharmaceutical in national HIV programmes and drug prevention and other services targeting companies to reduce the price of medication. strategies and programmes, as well as in people who use drugs must include a the Universal Access framework, Global hepatitis component in their programme. Fund, Pooled Fund programmes and other national platforms. Harm reduction programmes must not only be sustained, but urgently scaled Increase access to affordable, high quality, up and expanded to provide adequate effective and safe diagnostic and testing coverage and a wide range of services services. Except for a few tests such as including (but not limited to) needle antibody and LFT, other diagnostics are and syringe programmes. carried out by sending blood samples to the Indian laboratories. HIV testing should always be offered to clients with hepatitis, and hepatitis B and hepatitis C testing should likewise be offered to people living with HIV. Chapter 8: Chapter South-East Asia Region Asia South-East

211 Thailand

Liver Care Foundation*

Private foundation Khon Kaen, Thailand

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Thailand reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The respondent took no position on thought to be accurate for 96.0% the government information for 4.0% of items. of items. Survey points marked “accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 3.5, 3.4. 4.1, 4.2, 4.3, 4.4, 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from the Liver Care Foundation:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is no written national strategy or plan that We have had universal vaccine since 1994 this information focuses exclusively or primarily on the prevention in newborn but we lack evaluation. is accurate. and control of viral hepatitis.

1.2 There is no designated governmental unit/ Last year the infectious control department department responsible solely for coordinating had a committee about this but up to now there and/or carrying out viral hepatitis-related is no progression. There is no action. activities. There are no people working full-time on hepatitis-related activities in any government agency/body.

1.3 The government has a viral hepatitis prevention This policy was individual for each hospital and control programme that includes activities with regards to health care workers. Further, targeting the following specific population: health- the vaccine costs could not be reimbursed. care workers, including health-care waste handlers.

2.1 The government did not hold events for They have not any campaign and no budget World Hepatitis Day 2012 and has not funded for this event. other viral hepatitis public awareness campaigns since January 2011.

2.2 The government does not collaborate with They are only planning. in-country civil society groups to develop and implement its viral hepatitis prevention and control programme. Chapter 8: South-East Asia Region

* World Hepatitis Alliance member.

212 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.2 There are standard case definitions We do not have a standard form for reported this information for hepatitis. Deaths, including from hepatitis, deaths from hepatitis. In Thailand not only is accurate. are reported to a central registry. Of hepatitis hepatitis A, B and C infection we have toxic cases, 25% are reported as “undifferentiated” hepatitis from herbal medicine so when or “unclassified” hepatitis. the patient died from hepatitis we couldn’t differentiate the definite course of hepatitis.

3.5 There is no national public health research Up to now they did not. agenda for viral hepatitis. Viral hepatitis serosurveys are not conducted regularly. The most recent serosurvey, which targeted the general population, was carried out in 2004.

4.1 There is no national policy on hepatitis A vaccination. They have no policy and vaccine is not reimbursed.

4.2 The government has not established the goal They have universal vaccination for newborns of eliminating hepatitis B. since 1994 but we lack the education for preventing transmission to a hepatitis B-infected person’s contacts.

4.3 Nationally, 99% of newborn infants in a given In theory it should be 99% but in real life it is recent year received the first dose of hepatitis B not, it depends on each area such as university vaccine within 24 hours of birth and 98% of one- hospital and local hospital. Universal coverage year-olds (ages 12–23 months) in a given recent plan for all newborns but we lack the knowledge year received three doses of hepatitis B vaccine. of natural history of HBV for medical personnel and the people so the percentage was low in some areas. In the Northeast of Thailand, the prevalence of the people around 20 years old is more than 3% (Liver Care Foundation 2010).

4.4 There is a national policy that specifically We have no national policy, only vaccination targets mother-to-child transmission of hepatitis B after birth, HBIG is not universally used, depends (Annex B). on the knowledge of medical personnel and budget of the mother. Chapter 8: Chapter

4.5 There is a specific national strategy and/or The prevention was done by each hospital policy for preventing hepatitis B and hepatitis C and commonly was done after starting work Region Asia South-East infection in health-care settings, but it addresses so put them to contaminate before vaccination. only vaccination for healthcare workers. Health- care workers are not vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood.

213 Thailand

Liver Care Foundation continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.6 There is a national policy on injection safety Up to now we used disposable syringe and needle. this information in health-care settings, which recommends single- The cannula is reused. is accurate. use syringes for therapeutic injections. Single-use or auto-disable syringes, needles and cannulas are always available in all health-care facilities.

4.8 There is a national infection control policy We have had a national policy for screening for blood banks. All donated blood units (including for more than 20 years. family donations) and blood products nationwide are screened for hepatitis B and hepatitis C.

5.1 Health professionals obtain the skills and They did not obtain the skills or knowledge. competencies required to effectively care We have only guidelines from liver society for people with viral hepatitis through schools of Thailand. for health professionals (pre-service education), on-the-job training and technical seminars. There are national clinical guidelines for the management of viral hepatitis, which include recommendations for cases with HIV coinfection.

5.2 The government has national policies relating They do not have this policy. to screening and referral to care for hepatitis B, but not for hepatitis C.

5.3 People testing for both hepatitis B and hepatitis The government does not have the data for these C register by name; the names are kept confidential patients and the screening was free of charge within the system. Hepatitis B and hepatitis C tests for few persons and hepatitis B and hepatitis C are not free of charge for all individuals, but they are screened free for blood donors. are for pregnant women, blood donors and civil servants. Hepatitis C tests are free of charge for blood donors. Hepatitis B and hepatitis C tests are compulsory for blood donors.

5.4 Publicly funded treatment is available for Up to now lamivudine and tenofovir are the hepatitis B and hepatitis C. Patients under the only essential drugs for chronic hepatitis B universal coverage scheme are eligible. However, treatment and chronic hepatitis C treatment only lamivudine and tenofovir are included in was immediately available in all genotypes and the universal coverage package for hepatitis B, HIV coinfection HCV. The criteria are active HCV and major drugs for treating hepatitis C are not infection with significant fibrosis. included. The amount spent by the government on publicly funded treatment for hepatitis B and hepatitis C is not known. Chapter 8: South-East Asia Region

214 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.5 The following drugs for treating hepatitis B Drugs for HCV treatment in all genotypes and this information are on the national essential medicines list: coinfection HIV&HCV is immediately available is accurate. lamivudine and tenofovir. No drug for treating in soon. hepatitis C is on the national essential medicines list.

--We take no 3.4 Hepatitis outbreaks are reported to the We have not both of medical personnel and position regarding government and are further investigated. There is laboratory test for evaluation especially if this statement. adequate laboratory capacity nationally to support we have severe outbreak. investigation of viral hepatitis outbreaks and other surveillance activities.

Statement from the Liver Care of Northeast Thailand we found that they will be screen, give the education, find Foundation regarding key hepatitis have high prevalence rate of hepatitis B the new case, prevention in the family policy issues in Thailand: and hepatitis C infection. The average HBV and assess the treatment in this area that was 8% and HCV was 4 % so we are faced cover the people more than 22.5 million. According to our work about five years ago with high rates of complications such as Our problem was we lack the funds and we gave the education for awareness of cirrhosis and liver cancer average 1-2:500 implement from the government. So our chronic hepatitis infection in each province in each event of tour. Our plan in next year plan will do as much as our fund we can. Chapter 8: Chapter South-East Asia Region Asia South-East

215 Thailand

Thai Association for the Study of the Liver (THASL)

Medical society Bangkok, Thailand www.thasi.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Thailand reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 84.0% thought to not be accurate for 12.0% the government information for 4.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.3, 3.4, 3.5, 4.1, 3.1, 5.2 and 5.5. 3.2. 4.2, 4.3, 4.4, 4.5, 4.6, 4.7, 4.8, 4.9, 4.10, 5.1, 5.3 and 5.4.

Survey comments from the Thai Association for the Study of the Liver:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.3 Liver cancer cases and cases with The report is only annually and usually this information HIV/hepatitis coinfection are registered nationally. of 4–5 years ago, not up to date. is accurate. The government publishes hepatitis disease reports weekly and annually.

3.5 There is no national public health research We are not aware of 2004 survey. agenda for viral hepatitis. Viral hepatitis serosurveys are not conducted regularly. The most recent serosurvey, which targeted the general population, was carried out in 2004.

5.4 Publicly funded treatment is available Chronic hepatitis C genotypes 2 and 3 are for hepatitis B and hepatitis C. Patients under funded for 24 weeks of peginterferon + ribavirin the universal coverage scheme are eligible. combination treatment. However, only lamivudine and tenofovir are included in the universal coverage package for hepatitis B, and major drugs for treating hepatitis C are not included. The amount spent by the government on publicly funded treatment for hepatitis B and hepatitis C is not known.

××To our knowledge, 3.1 There is routine surveillance for viral hepatitis. There is no routine surveillance programme yet. this information is There is a national surveillance system for the not accurate. following types of acute hepatitis: A, B, C, D and E, but not for any type of chronic hepatitis.

Statement from the Thai Association patients are treated in the first year as need the treatment. For chronic hepatitis for the Study of the Liver regarding compare to our estimation of 2,000. This B, there is no good policy yet, and it may key hepatitis policy issues in emphasises the need for an awareness come out rather late. So we need both Thailand: campaign. In 2015 the treatment will awareness and the establishment of a extend to all genotypes and HIV/hepatitis national policy. In Thailand, we are currently funding C coinfection as well. We really do need a Chapter 8: South-East Asia Region treatment of chronic hepatitis C good awareness programme throughout genotypes 2 and 3. However, only 900 the next few years to reach patients who

216 Western Pacific Region 9

Global Community Hepatitis Policy Report

9 Western Pacific Region

1 Australia • Hepatitis Australia

4 2 China • Asiahep Hong Kong Limited 3 • Inno Community Development Organisation 2 • ITPC China

7 • Liver Department of Wu Jieping Medical Foundation

3 Japan 6 • Institute of Biomedical and Health Sciences, Hiroshima University • Japan Association for Promotion of Hepatitis Measures • Social Welfare Corporation, Habataki, Welfare Project

4 Mongolia • Onom Foundation

1 5 New Zealand • Hepatitis Foundation of New Zealand

6 Philippines 5 • Yellow Warriors Society Philippines

7 Taiwan (Chinese Taipei) • Taiwan Liver Research Foundation

This chapter presents Western Pacific region findings from 9.1. Respondents the World Hepatitis Alliance’s 2014 civil society survey in three sections. Twelve organisations from seven countries1 and one special administrative region in the Western Pacific region responded The first section provides an overview of respondents. to the World Hepatitis Alliance’s 2014 civil society survey. The The second section describes the extent to which respondents governments of five countries provided information for the 2013 agreed or disagreed with what their governments reported about WHO global policy report, and thus the nine respondents based hepatitis policies and programmes for the 2013 World Health in those countries were able to comment on the accuracy of their Organization (WHO) Global Policy Report on the Prevention and governments’ responses. The governments of two countries did Control of Viral Hepatitis in WHO Member States. It also notes not provide information for the 2013 report.2 The two respondents the issues associated with the greatest amount of agreement and based in those countries instead commented on their governments’ disagreement. The third section highlights some of the qualitative responses to viral hepatitis by writing short statements about key findings from respondents based in countries where governments issues. One additional respondent provided a short statement did not submit information for the 2013 WHO global policy report. about how viral hepatitis is being addressed by the Special Administrative Region of Hong Kong, which was not invited to submit information for the WHO global policy report because it is part of China. Additional information about respondents is presented in Table 9.1 overleaf. Chapter 9: Chapter Western Pacific Region Western Pacific

1 For the purposes of this report, Taiwan (Chinese Taipei) is referred to as a “country.” The World Hepatitis Alliance takes no position regarding the legal status of Taiwan (Chinese Taipei) as a sovereign state. 2 One of the two countries did not submit information for the 2013 WHO global policy report. One other country, Taiwan (Chinese Taipei), was not invited to submit information because it is not a WHO Member State.

219 Western Pacific Region continued

Table 9.1. Western Pacific region respondents to the World Hepatitis Alliance’s 2014 civil society survey (N=12)

Type of respondent (#)

Country Civil society survey respondents (#) hepatitis – NGO patient group NGO – direct service provider NGO – other society Medical Private foundation Other Australia 1 1 Chinaa 4 3 1 Japan 3 1 2 Mongolia 1 1 New Zealand 1 1 Philippines 1 1 Taiwan 1 1

Table 9.2. Survey items eliciting the highest levels of agreement from civil society respondents, Western Pacific region (N=9)

# (%) of respondents who indicated Question(s) addressed by governments for 2013 WHO global agreement with their governments’ Survey item policy report response(s) by selecting “to our knowledge, this information is accurate” Does your government collaborate with any civil society group within your country (such as patient groups or national or local 2.2 nongovernmental organisations) to develop and implement its viral 9 (100%) hepatitis prevention and control programme? If yes, please name major partners. Is there a specific national strategy and/or policy/guidelines for preventing hepatitis B and hepatitis C infection in health care settings? 4.5 9 (100%) If yes, are health workers vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood? Chapter Pacific 9: Western Region

220 Global Community Hepatitis Policy Report

Figure 9.1. Types of organisations submitting survey responses, Figure 9.2. Responses received by income group,a Western Pacific Figure 9.2 WesternFigure 9.1 Pacific region (N=12) region (N=12) 8% NGO: hepaiis paient group 8% 17% Other 17% Other 17% Lower-middle-income NGO: direct Types of service provider 8% Responses Private organisaions foundaion submiing survey received by a responses, income group, Western Paciic Western Paci ic region (N=12) 42% region (N=12) High-income 33% Upper-middle- income 50% NGO: other a Source for income group classifications: World Bank 2013 data (http://data.worldbank.org/about/country-and-lending-groups).

Three-fourths of respondents identified themselves as some The following survey items were most commonly identified as type of nongovernmental organisation (including hepatitis patient points on which civil society respondents in the Western Pacific groups), and one respondent (8%) identified itself as a private region agreed with their governments’ responses: item 2.2, foundation (Figure 9.1). regarding government collaboration with civil society groups, and item 4.5, regarding prevention of hepatitis B and hepatitis C More than 80% of respondents were either voting or non-voting in health care settings. Further details are presented in Table 9.2. members of the World Hepatitis Alliance at the time they submitted their surveys (data not shown). The following survey items were most commonly identified as points on which civil society respondents in the Western Pacific Almost half of respondents were based in high-income countries, region disagreed with their governments’ responses: Item 3.4, and one-third were based in upper-middle-income countries. regarding the reporting and investigation of hepatitis outbreaks; (Figure 9.2). item 5.1, regarding health professional training and viral hepatitis clinical guidelines; item 5.3, regarding hepatitis B and hepatitis C testing; and item 5.4, regarding publicly funded treatment for 9.2. Highlights relating to civil society agreement hepatitis B and hepatitis C. Further details are presented in or disagreement with what governments reported Table 9.3 overleaf.

The civil society survey contained 25 items based on the information that governments provided for the 2013 WHO global policy report. For each item, civil society stakeholders were asked to consider the government response to one or more questions about national hepatitis policies and programmes, and to select one of the following three statements: To our knowledge, 9: Chapter this information is accurate; To our knowledge, this information is not accurate; or We take no position regarding this statement.

Detailed findings for all civil society survey items are presented Region Western Pacific in Annex C. In sum, one-third of all civil society respondents thought that the information from their governments was accurate for 20 or more of the 25 items. Regarding the proportions of respondents who marked items as “not accurate,” one-third thought that the information from their governments was not accurate for at least six items.

221 Western Pacific Region continued

9.3. Qualitative findings from countries where The same respondent additionally noted: government information is lacking As hepatitis C virus (HCV) infection is often asymptomatic Civil society survey respondents based in countries where and could easily remain undiagnosed, screening in a governments did not submit information for the 2013 WHO global community-based setting becomes an important task. With the policy report did not have any information to review and hence progressive emergence of HCV/HIV coinfection in intravenous did not complete the component of the survey discussed in the drug users, the prognosis and outcome of HCV infection will be preceding section. They only completed a survey component exacerbated. Therefore, searching for HCV reservoirs becomes in which respondents were invited to write brief statements an essential step, both in the general population as well as in discussing the policy response to viral hepatitis in their countries. high-risk groups. We have conducted more than 20 voluntary Respondents were encouraged to focus on one or more of five mass screening sessions in residents. ... We also have provided topics: national coordination; awareness-raising, partnerships and examinations for people at high-risk of HCV infection, such as resource mobilisation; evidence-based policy and data for action; haemodialysis patients, intravenous drug users, HIV-infected prevention of transmission; and screening, care and treatment. patients and those patients requiring periodic transfusion.

The purpose of this section is to present some excerpts that are Asiahep Hong Kong Limited called attention to what needs generally reflective of the concerns of respondents in the Western to happen in conjunction with screening: Pacific region. The following data represent only the views of the three civil society survey respondents that did not have Many people are told that they are hepatitis B carriers with government information to review (one each from the Special no explanation, no counselling and no follow-up. This means Administrative Region of Hong Kong, the Philippines and Taiwan missing opportunities to assess disease activity, treat [Chinese Taipei]). The full text of all respondents’ statements can appropriate patients and reduce morbidity and mortality be found later in this chapter. through appropriate medical management.

One key issue that respondents discussed in their statements Respondent comments brought to light different types of health was awareness-raising. Yellow Warriors Society Philippines care access issues. Yellow Warriors Society Philippines wrote: (YWSP) wrote: The Department of Health has a free hepatitis B vaccine We believe that awareness is still low. Due to stigma, [viral programme for infants [birth to age one]. But since the hepatitis] carriers do not talk about this topic. ... More needs Philippines is an archipelago, bringing vaccine to far-flung to be done if we want a higher level of awareness. A solution provinces poses a challenge. We can see this because of the is networking with organisations just like what YWSP is doing increase in the prevalence of hepatitis B. We believe strict now. Also, more informational materials are needed. implementation and monitoring would solve this problem.

The Taiwan Liver Research Foundation wrote that viral hepatitis The same respondent also noted that the government does awareness “remains ... a critical public health issue in our country.” not provide health care to Filipinos with viral hepatitis, adding: The respondent added: “We hope we can convince the government to help hepatitis B and hepatitis C carriers by at least subsidising the medicines.” We are making every effort to raise disease awareness in our community by means of public education, free screening and The Taiwan Liver Research Foundation wrote: symposia held for medical professionals. Of note was that we created a strategy aiming to have young children teach their Medical accessibility and disease awareness remain critical parents and families about hepatitis prevention. steps for a better chance of curing people with hepatitis C. We provide free transportation for indigenous people living Another area of concern was viral hepatitis screening. in mountain areas and for poor people to access medical care Asiahep Hong Kong Limited noted that in the Hong Kong Special for their hepatitis C infection. Administrative Region, government hospitals and clinics do not have viral hepatitis screening programmes. This respondent also stated:

Government’s role should be the coordinator for hepatologists and infectious disease doctors in the private and public sectors – draw up a plan to screen the population and provide advice and treatment.

The Taiwan Liver Research Foundation made the following observations about hepatitis screening:

We have recently seen a friendly change at the Ministry of Health and Welfare regarding hepatitis screening, with screening efforts incorporated into a nationwide health check- up programme. Chapter Pacific 9: Western Region

222 Global Community Hepatitis Policy Report

Table 9.3. Survey items eliciting the highest levels of disagreement from civil society respondents, Western Pacific region (N=9)

# (%) of respondents who indicated Question(s) addressed by governments for 2013 WHO global disagreement with their governments’ Survey item policy report response(s) by selecting “to our knowledge, this information is not accurate” Are hepatitis outbreaks required to be reported to the government? If yes, are they further investigated? 3.4 3 (33.3%) Is there adequate laboratory capacity nationally to support viral hepatitis outbreak investigations and other surveillance activities? How do health professionals in your country obtain the skills and competencies required to effectively care for people with viral hepatitis?

5.1 Are there national clinical guidelines for the management of viral 3 (33.3%) hepatitis? If yes, do they include recommendations for cases of HIV coinfection? If no, are there national clinical guidelines for the management of HIV that include recommendations for coinfection with viral hepatitis? Please answer the following questions about hepatitis B and hepatitis C testing in your country. • When testing, do people register by name? 5.3 • If people register by name, are their names kept confidential 4 (44.4%) within the system, or is there open access to the names? • Is the test free of charge for all individuals? • Is the test free of charge for members of any specific group? • Is the test compulsory for members of any specific group? Is publicly funded treatment available for hepatitis B? If yes, who is eligible? Is publicly funded treatment available for hepatitis C? 5.4 3 (33.3%) If yes, who is eligible? How much does the government spend on publicly funded treatment for hepatitis B and hepatitis C? Chapter 9: Chapter Western Pacific Region Western Pacific

223 Australia

Hepatitis Australia*

NGO – peak national hepatitis community organisation Woden Act, Australia www.hepatitisaustralia.com

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Australia reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 68.0% thought to not be accurate for 12.0% the government information for 20.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.3, 2.2, 3.1, 3.3, 3.4, 4.1, 4.3, 4.4, 1.2, 3.2 and 3.5. 2.1, 4.2, 4.9, 4.10 and 5.1. 4.5, 4.6, 4.7, 4.8, 5.2, 5.3, 5.4 and 5.5.

Survey comments from Hepatitis Australia:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is a written national strategy or plan The Third National Hepatitis C Strategy this information that focuses exclusively on the prevention and 2010 to 2013 and the First National Hepatitis is accurate. control of hepatitis B and hepatitis C. It includes B Strategy 2010-2013 have both expired. components for raising awareness, surveillance, The revisions have been delayed and vaccination, prevention in general, prevention consequently we currently have no operational of transmission via injecting drug use, prevention national strategies at present (March 2014). of transmission in health-care settings, treatment and care, and coinfection with HIV.

1.3 The government has a viral hepatitis prevention The information provided is incomplete and and control programme that includes activities oddly worded. The listed specific populations targeting the following specific populations: may reflect the populations for which hepatitis B health-care workers (including health-care waste vaccination is recommended. However, these handlers), people who inject drugs, migrants, vaccinations are not all funded and it is a stretch prisoners, the homeless, people living with HIV, to say that there programmatic activities for all indigenous people, pregnant women, men who these groups. have sex with men, sex workers, partners and other household and intimate contacts of people who On the other hand they haven’t even mentioned have chronic hepatitis B infection, people travelling that the Australian and State and Territory to and from high-prevalence countries, people with governments fund needle and syringe mental health issues, and children born to mothers programmes and prevention education who have tested positive for hepatitis B infection. and awareness programmes through NGOs.

2.2 The government collaborates with the following The wording in the government response does not in-country civil society groups to develop and really reflect the very comprehensive partnership implement its viral hepatitis prevention and control approach across community organisations, programme: Ministerial Advisory Committee on clinicians and researchers and governments – Blood Borne Viruses and Sexually Transmissible this is a key feature of the Australian response. Infections, Blood Borne Viruses and Sexually Transmissible Infections Standing Committee, Australian National Council on Drugs, Hepatitis Australia, Australian Society for HIV Medicine, and Australian Injecting and Illicit Drug Users League Incorporated. Chapter Pacific 9: Western Region

* World Hepatitis Alliance member. Submitting on behalf of Hepatitis SA, Hepatitis NSW, Hepatitis Council of Queensland, ACT Hepatitis Resource Centre, Hepatitis C Victoria 224 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.1 There is routine surveillance for viral hepatitis. Hepatitis E infection is not included in the Annual this information There is a national surveillance system for the Surveillance Report. is accurate. following types of acute hepatitis: A, B, C, D and E, and for the following types of chronic hepatitis: B, C and D.

4.4 There is a national policy specifically All pregnant women are screened for hepatitis B targeting mother-to-child transmission infection, however, follow up of the infected of hepatitis B (Annex B). mother remains sub-optimal.

4.6 There is no national policy on injection Re-use of syringes is not permitted under the safety in health-care settings. Single-use standard best practice framework in health care or auto-disable syringes, needles and cannulas settings – it does occur but is not common and are always available in all health-care facilities. due to malpractice.

4.7 Official government estimates of the number Unnecessary injections is a cultural issue and percentage of unnecessary injections for some countries but is not a primary concern administered annually in health-care settings in Australia. were not known.

5.2 The government has national policies relating This forms part of the National Testing policies. to screening and referral to care for hepatitis B and hepatitis C.

5.3 People testing for both hepatitis B and This is mostly accurate but I’m not sure that tests hepatitis C register by name; the names are kept are free for all high-risks groups. confidential within the system. Hepatitis B tests are not free of charge for all individuals, but they are free for high-risk groups. Hepatitis C tests are not free of charge. Hepatitis B and hepatitis C tests are not compulsory for members of any specific group.

5.4 Publicly funded treatment is available for Other clinical restrictions on treatment access 9: Chapter hepatitis B and hepatitis C. The following people are listed too. are eligible: medicare holders. Information was not provided on the amount spent by the government

on such treatment for hepatitis B and hepatitis C. Region Western Pacific

225 Australia

Hepatitis Australia continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.5 The following drugs for treating hepatitis B In April 2013, Boceprevir and Telaprevir were this information are on the national essential medicines list or also subsidised by the government for hepatitis C is accurate. subsidised by the government: interferon alpha, genotype 1. pegylated interferon, lamivudine, adefovir dipivoxil, entecavir, telbivudine and tenofovir. The following drugs for treating hepatitis C are on the national essential medicines list or subsidised by the government: interferon alpha, pegylated interferon and ribavirin.

××To our knowledge, 1.2 There is no designated governmental unit/ For well over a decade there has been a section this information department responsible solely for coordinating within the federal department of health which is not accurate. and/or carrying out viral hepatitis-related is responsible for the management of the national activities. It is not known how many people work strategies and distribution of government full-time on hepatitis-related activities in all funding. Each of the State and Territory government agencies/bodies. governments also have units of varying size.

3.2 There are standard case definitions for The Kirby Institute (which is the organisation hepatitis. Deaths, including from hepatitis, charged with reporting on hepatitis C deaths) are reported to a central registry. No hepatitis states it is unable to do so because current case is reported as “undifferentiated” surveillance systems are inadequate. All or “unclassified” hepatitis. hepatitis cases are reported as A,B, C, etc.

3.5 There is a national public health research There is a viral hepatitis research agenda. agenda for viral hepatitis. Viral hepatitis However, viral hepatitis serosurveys are serosurveys are conducted regularly; the target not conducted “regularly.” There has been population is the general population. The last no general population serosurvey since 2007- serosurvey was carried out in 2007–2008. 08 to my knowledge. The prevalence figure derived from the 2007-08 survey was far higher than previous estimates (however, different research methodology may be the reason for this discrepancy). Chapter Pacific 9: Western Region

226 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no 2.1 The government held events for World Hepatitis Hepatitis Australia takes responsibility position regarding Day 2012 and has funded other viral hepatitis for coordinating World Hepatitis Day (WHD) this statement. public awareness campaigns since January 2011 each year and receives a very small amount (Annex A). of grant funding from the government to do so. (The majority of our funds for WHD are sourced from elsewhere).

There were no significant public WHD events run by the government in 2012 to our knowledge. However there were numerous events run by other organisations. I am not aware of what other “viral hepatitis public awareness campaigns” since January 2011 that the government has held. There has never been a federal government-led public awareness “campaign” on viral hepatitis although they do support our general media and consumer information activities.

4.2 The government has established the goal I was not aware that the government had of eliminating hepatitis B but the timeframe established the goal of eliminating hepatitis B is not specified. and it is not to my knowledge articulated in any policy document. However, I am very pleased to see it written here in a public document.

4.9 There is no national policy relating to There is national framework for the prevention the prevention of viral hepatitis among people of viral hepatitis among people who inject who inject drugs. drugs – this includes recommendations for hepatitis B vaccination, provision of needle and syringe programmes and funding of drug user organisations for the peer education and other awareness programmes. Australia has also had a long standing National Drug Policy which incorporates harm reduction (e.g. needle and syringe programmes), demand reduction (e.g. opioid substitution therapy), and supply reduction.

5.1 Health professionals obtain the skills and There are national testing policies and competencies required to effectively care for professional organisations have published people with viral hepatitis through schools for guidelines for clinical management – both

health professionals (pre-service education), on-the- medical and nursing – although these may 9: Chapter job training and postgraduate training. There are not be formally endorsed national documents. no national clinical guidelines for the management of viral hepatitis or for the management of HIV,

which include recommendations for coinfection Region Western Pacific with viral hepatitis.

227 Australia

Hepatitis Australia continued

Statement from Hepatitis Australia The Hepatitis C Partnership is much more Prevention of transmission. Needle and regarding key hepatitis policy issues developed than the Hepatitis B Partnership. syringe programmes are in place in the in Australia: community. Opioid substitution therapy The Federal Government has never is available. Universal infant hepatitis B National coordination. The structures run a comprehensive public awareness vaccination is in place including the birth for the national co-ordination of hepatitis campaign for hepatitis C despite it being dose. Education and information to support B and hepatitis C are in place: an inter- listed as a priority action in the National prevention is provided through various government committee and a Ministerial Strategy since 1999 and similarly has not agencies. No regulated government- Advisory Committee for all blood-borne run a comprehensive public awareness supported prison needle exchange is viruses and sexually transmitted infections. campaign for hepatitis B. They do provide operating yet. NGOs participate in these committees. a very small amount of funding to support World Hepatitis Day activities. Screening, care and treatment. Australia National strategies for hepatitis B and has an estimated diagnosis rate of over hepatitis C have been developed but expired There is no balance in funding allocations 80% for hepatitis C but it is much lower for at the end of 2013 and have not yet been across blood-borne viruses and sexually hepatitis B. Treatment rates are very low – replaced (although the process is in train). transmitted infections. HIV is an example in 2012 less than 1% for hepatitis C (2,360 Implementation plans are developed but of a well-funded response with good people) and it was thought to be less than not all areas are progressed. outcomes compared to hepatitis B and 3% for hepatitis B but there is insufficient hepatitis C. rigorous data to estimate. We do not have nationally approved targets for hepatitis B and hepatitis C yet (although Evidence-based policy and data these are in place for HIV) and need these for action. There are three designated to drive action. national research centres covering virological, clinical, epidemiological, Awareness-raising, partnerships prevention and social research – they and resource mobilisation. The First are provided with government funds to Hepatitis B Strategy was eventually assist with viral hepatitis research and approved in 2010 (ten years after the First surveillance. Other research institutes also Hepatitis C Strategy) but no new funding contribute to building the evidence and data has been distributed at a national level to for action. support implementation yet – this acts as a major brake on the implementation process. Although effort is put into the development of the evidence-base, gaps remain. Chapter Pacific 9: Western Region

228 Global Community Hepatitis Policy Report China

Asiahep Hong Kong Limited*

NGO – health education and patient advocacy Hong Kong Special Administrative Region, China www.asiahep.org.hk

SURVEY HIGHLIGHTS

Asiahep Hong Kong Limited did not comment on the information that the Chinese government submitted to the World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States.

Instead, the organisation provided the Many people are told that they are hepatitis B philanthropists, and fundraising activities. following general statement regarding carriers with no explanation, no counselling Please refer to data from the Centre key hepatitis policy issues in the Hong and no follow-up. This means missing for Health Protection (Hong Kong Kong Special Administrative Region: opportunities to assess disease activity, Department of Health) website treat appropriate patients and reduce (December 2013 update). In Hong Kong, the Centre for Health morbidity and mortality through Protection of the Department of appropriate medical management. Asiahep Hong Kong Limited has an annual Health monitors the trend of viral World Hepatitis Day press conference hepatitis A to E through voluntary Government’s role should be the to offer free or sponsored free blood tests. notification system. HBsAg and anti-HCV coordinator for hepatologists and It also has a longstanding collaboration prevalence are deduced from blood donors, infectious disease doctors in the private with Hong Kong Family Planning compulsory prenatal check, premarital and public sectors – draw up plans to Association. For World Hepatitis Day 2013, and pre-pregnancy data from the Hong screen the population and provide advice a joint press conference raised awareness Kong Family Planning Association, and and treatment. for HBV DNA testing and sponsored governmental healthcare workers’ initial assessment for HBsAg-positive pre-employment check. However, NGOs should coordinate advocacy individuals, including HBeAg HBV DNA governmental hospitals and clinics do activities to achieve more sustainable and and ALT. Over 600 people participated. not screen the population or have any impactful results. This requires resources http://www.asiahep.org.hk active programmes. There is reliance on which can be provided by government, private insurance health checks and NGO pharmaceutical companies, activities to promote awareness. Chapter 9: Chapter Western Pacific Region Western Pacific

* World Hepatitis Alliance member.

229 China

Inno Community Development Organisation*

NGO – hepatitis education Guangzhou, China www.theinno.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of China reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 52.0% thought to not be accurate for 24.0% the government information for 24.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.3, 2.1, 2.2, 3.1, 3.4, 4.1, 4.3, 4.4, 4.6, 4.8, 4.9, 4.10, 5.1 and 5.5. 1.2, 3.2, 3.3, 3.5, 4.2 and 4.7 4.5, 5.2, 5.3 and 5.4.

Survey comments from Inno Community Development Organisation:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.3 Nationally, 91% of newborn infants in a given If a family wants a newborn baby to be this information recent year received the first dose of hepatitis B vaccinated against hepatitis B, the family does is accurate. vaccine within 24 hours of birth and 94% of not need to pay any money. But I don’t know one-year-olds (ages 12-23 months) in a given recent the accurate percentage. year received three doses of hepatitis B vaccine.

--We take no 1.2 There is a designated governmental unit/ Chinese Center for Disease Control and position regarding department responsible solely for coordinating Prevention is responsible for hepatitis-related this statement. and/or carrying out viral hepatitis-related activities. But I don’t know how many staff activities. The name of this office was not provided. they have. It has seven staff members. There are seven full-time equivalent staff members who work on hepatitis-related activities in all government agencies/bodies.

Statement from Inno Community On one hand, mandatory hepatitis status exists between hepatitis- Development Organisation regarding B testing is not allowed by Chinese infected and -uninfected people. key hepatitis policy issues in China: laws and regulations. If a company Few social resources can be used requires employees to undergo testing, by hepatitis-infected people. If a Viral hepatitis is one of the issues that Inno the company is violating the law. student is found to be a hepatitis Community Development Organisation (Inno) However, the Chinese government carrier, the school will stop him/her focuses on. Based on data from the Inno maintains a policy of forbidding from attending. workplace hepatitis hotline, more than hepatitis carriers from being state 80% of calls are from people seeking employees. What the Chinese >> A system of supervision and knowledge of hepatitis B, and 17% of calls government has done is inconsistent assessment, made by government, are for psychological support. Less than with what the law says. As a result, has a great impact on the execution 2% of people are calling because they have most people are confused and fear and quality of the hepatitis experienced hepatitis-related discrimination. hearing anything about hepatitis. programmes. Some partners or They think viral hepatitis is equal programme executives focus on data, From the data analysis of Inno Database, to cancer. neglecting the quality when they run we could say: a hepatitis project. The data could >> Though the Chinese government show to the public easily and make >> The majority of people lack a tries hard to eliminate discrimination the executives more easy to sell correct knowledge of hepatitis against hepatitis-infected people, themselves to other funders, however, and an awareness of how to protect such as amending laws for eliminating the quality of a hepatitis programme themselves from the hepatitis virus. discrimination, inequality in social is hard to assess. Chapter Pacific 9: Western Region

* World Hepatitis Alliance member.

230 Global Community Hepatitis Policy Report China

ITPC China

NGO – advocacy network for treatment access Guangzhou, China www.itpc-china.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of China reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 76.0% thought to not be accurate for 8.0% the government information for 16.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 1.3, 2.1, 2.2, 3.1, 3.2, 3.3, 4.1, 4.2, 4.3, 5.3 and 5.4. Survey points marked “take no position”: 4.4, 4.5, 4.6, 4.8, 4.9, 4.10, 5.1, 5.2 and 5.5. 1.2, 3.4, 3.5 and 4.7.

Survey comments from ITPC China:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.5 The following drugs for treating hepatitis However, ribavirin is not approved to treat this information B are on the national essential medicines list hepatitis C, which is weird but doesn’t affect is accurate. or subsidised by the government: interferon its actual use. alpha, pegylated interferon, lamivudine, adefovir dipivoxil, entecavir, telbivudine and tenofovir. The following drug for treating hepatitis C is on the national essential medicines list or subsidised by the government: ribavirin.

××To our knowledge, 5.3 People testing for both hepatitis B and hepatitis There is compulsory testing for people detained this information C register by name; the names are kept confidential for compulsory detox, as far as we know. is not accurate. within the system. Hepatitis B and hepatitis C tests are not free of charge for all individuals. They are free for certain groups, but information was not provided on which groups. Hepatitis B and hepatitis C tests are not compulsory for members of any specific group.

5.4 Publicly funded treatment is available for A few provinces/cities have included hepatitis B, but not for hepatitis C. Information was pegylated interferon in their health insurance not provided on who is eligible or the amount spent for treating hepatitis C, while most others by the government on such treatment. only include interferon.

Statement from ITPC China regarding key the national CDC and with support from that are deeply affected by hepatitis C. 9: Chapter hepatitis policy issues in China: other stakeholders. These groups should be included more in the national response to viral hepatitis. National coordination. There has not Awareness-raising, partnerships yet been a national strategy or plan that and resource mobilisation. Collaboration The awareness-raising done by the Region Western Pacific focuses on the prevention and control with civil society organisations is government is not effective or efficient. of hepatitis C (HCV). Only in 2013, the far from enough in the issue of viral Civil society and the business sector national Centre for Disease Control (CDC) hepatitis, as the two organisations listed should be mobilised to develop more started to set up an HCV office, which is by the government response to the 2013 creative and effective ways to raise public under the national HIV/AIDS programme. survey are more like government-owned awareness on viral hepatitis, particularly As HCV is being increasingly addressed by organisations or medical societies. There dealing with the stigma caused by some both the national and international level, are well-known patient-based NGOs of the previous “awareness-raising” ads. we think that a strategy to prevent and working on hepatitis B, as well as many Hepatitis C should be emphasised more control HCV in China should come out as groups of people living with HIV and in all activities, as the Chinese public is soon as possible under the leadership of groups of people who inject drugs (PWID) not aware of it.

231 China

ITPC China continued

Prevention of transmission. Harm Besides, as noted by a hepatitis B expert, community. The threshold at which reduction strategies are not widely “if all of the nonsense liver protection meds patients get reimbursement from available among the PWID population in and herbs are removed from the health health insurance needs to change many parts of China. The national policy insurance reimbursement list, China to prioritise outpatient treatment rather prefers compulsory detoxification more can double its coverage of hepatitis B than inpatient treatment. Putting more than methadone maintenance treatment treatment with no more extra investment.” recommended medications onto the and clean syringe programmes. More essential medicines list will allow humane and practical intervention For hepatitis C, pegylated interferon more patients to access them at approaches need to be widely adopted (peg-IFN) is not covered by health basic healthcare facilities. to reduce the risk of viral hepatitis insurance in most parts of China, and >> The government should take the lead transmission in the PWID population. even in some areas where it is covered, in negotiating the price of viral hepatitis patients still need to be hospitalised drugs with Big Pharma. While China Screening, care and treatment. to get reimbursement. The out-of- produces most of the ingredients of The biggest challenge is the accessibility pocket cost for a 48-week course with many chemical drugs, the price of and availability of treatment. peg-IFN and ribavirin therefore ranges the drugs is much more expensive from US$ 2,500 to 10,000. This is very compared to other middle-income For hepatitis B, the reimbursement rate unacceptable considering that most people countries. This is essential for the covered by different types of health living with hepatitis C are rural residents government to develop and implement insurances varies. There are three major or have a history of intravenous drug use, a national programme on viral hepatitis. health insurance systems co-funded by and their annual income is typically less both the government and the beneficiaries: than US$ 800. >> Civil society organisations should rural health insurance, urban resident act to mobilise affected communities health insurance, and urban employee To deal with treatment access issue, to know their own viral hepatitis health insurance. In general, the less the following major changes are required: status, and to create more demand income you have, the more you will need to for accessible treatment. pay out of your own pocket. In most cases, >> Health insurance policies need patients need to be hospitalised to get to change, by removing nonsense reimbursed by health insurance, while being medications, and including medications treated as outpatients is more cost-effective that are commonly regarded as for both the patient and the government. “gold standard” by the international Chapter Pacific 9: Western Region

232 Global Community Hepatitis Policy Report China

Liver Department of Wu Jieping Medical Foundation*

Medical society Beijing, China www.cnsid.org

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of China reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was thought to be accurate for 68.0% thought to not be accurate for 32.0% of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 1.1, 2.1, 2.2, 3.1, 3.3, 3.5, 4.1, 4.2, 4.3, 1.2, 1.3, 3.2, 3.4, 4.10, 5.2, 5.4 and 5.5. 4.4, 4.5, 4.6, 4.7, 4.8, 4.9, 5.1 and 5.3.

Survey comments from the Liver Department of Wu Jieping Medical Foundation:

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 1.2 There is a designated governmental unit/ There is a designated government department this information department responsible solely for coordinating responsible for hepatitis but not solely. is not accurate. and/or carrying out viral hepatitis-related activities. The name of this office was not provided. It has seven staff members. There are seven full-time equivalent staff members who work on hepatitis-related activities in all government agencies/bodies.

1.3 The government has a viral hepatitis prevention Not national programme. and control programme that includes activities targeting the following specific populations: health-care workers (including health-care waste handlers) and people who inject drugs.

3.4 Hepatitis outbreaks are required to be reported Surveillance activities also includes hepatitis E. to the government and are further investigated. There is adequate laboratory capacity nationally to support outbreak investigations and other surveillance activities for hepatitis A, hepatitis B and hepatitis C, but not for hepatitis E.

5.2 The government has national policies relating Has policies for hepatitis C too. to screening and referral to care for hepatitis B, but not for hepatitis C. 9: Chapter Western Pacific Region Western Pacific 5.4 Publicly funded treatment is available for Treatment is also for Hepatitis C. hepatitis B, but not for hepatitis C. Information was not provided on who is eligible or the amount spent by the government on such treatment.

* World Hepatitis Alliance member.

233 China

Liver Department of Wu Jieping Medical Foundation continued

××To our knowledge, 5.5 The following drugs for treating hepatitis B The listed medicines are only subsidised by this information are on the national essential medicines list or government in some specific cities and provinces. is not accurate. subsidised by the government: interferon alpha, pegylated interferon, lamivudine, adefovir dipivoxil, entecavir, telbivudine and tenofovir. The following drug for treating hepatitis C is on the national essential medicines list or subsidised by the government: ribavirin.

Statement from the Liver Department paid by the individual patient. The survey should also actively cooperate in this of Wu Jieping Medical Foundation of hepatitis C disease burden by Wu process with the government, and regarding key hepatitis policy issues Jieping Medical Foundation shows that contribute their efforts. For example, in China: patients with liver disease also suffer a related NGOs can do advocacy with the substantial economic burden, and many government and can conduct patient We believe that the greatest problem patients are unable to take on long-term education about their disease. Academic is that screening, care and treatment drug treatment. organisations can provide standard are not accessible to hepatitis patients guidelines and conduct training for from rural areas and the countryside, We also investigated the doctor’s doctors. Pharmaceutical companies since reimbursement for the disease treatment skills; there is no uniform should try to provide cheap and good- is limited and treatment in these areas norm to promote the implementation of quality drugs. International societies is in urgent need of standardisation. treatment, resulting in uneven levels of and organisations can actively promote Reimbursement of the cost of treatment in treatment. So many patients in rural or international cooperation and exchange, rural areas should be increased, while the remote areas do not have access to regular and also can promote the development doctor’s diagnosis and treatment skills and effective treatment. of national government programmes. should be improved in order to achieve greater health equity. Currently, the New Government in addressing these issues Rural Cooperative Medical System should play a leading role, and only on the (medical insurance for rural residents) support of national policies the reform can reimbursement is only 50%; the rest is be promoted; other related organisations Chapter Pacific 9: Western Region

234 Global Community Hepatitis Policy Report Japan

Institute of Biomedical and Health Sciences, Hiroshima University

Hiroshima, Japan http://home.hiroshima-u.ac.jp/eidcp/

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Japan reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 64.0% thought to not be accurate for 28.0% the government information for 8.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.4, 3.5, 4.2, 3.3, 4.1, 4.6, 4.7, 5.1, 5.3 and 5.4 3.2 and 5.5. 4.3, 4.4, 4.5, 4.8, 4.9, 4.10 and 5.2.

Survey comments from the Institute of Biomedical and Health Sciences, Hiroshima University:

Information reported by government (2012–2013) Civil society respondent comments (2014)

To our knowledge, // 3.5 There is a national public health research Now we have the national programme for viral this information agenda for viral hepatitis. It is not known whether hepatitis screening for persons aged 40 years is accurate. viral hepatitis serosurveys are conducted regularly. or older in residence.

4.2 The government has not established the goal Japan has met the WHO hepatitis B control of eliminating hepatitis B. goal of reducing the hepatitis surface antigen seroprevalence in children at least five years of age to less than 2% by 2012.

4.3 Nationally, no newborn infant in a given recent However, Japan has had a selective vaccination year received the first dose of hepatitis B vaccine programme for babies born to mothers who are within 24 hours of birth and no one-year-old hepatitis B carriers. So the HBsAg seroprevalence (age 12–23 months) in a given recent year received in children under age five is less than 1% now. three doses of hepatitis B vaccine.

4.5 There is a specific national strategy and/ In addition, students in medical universities or policy/guidelines for preventing hepatitis B are also vaccinated against hepatitis B. and hepatitis C infection in health-care settings. Health-care workers are vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood.

4.8 There is a national infection control policy In Japan, all donated blood units and blood 9: Chapter for blood banks. All donated blood units (including products have been screened for hepatitis B family donations) and blood products nationwide since 1972, and for hepatitis C since 1990. are screened for hepatitis B and hepatitis C. Western Pacific Region Western Pacific

4.9 There is no national policy relating to the People who inject drugs now are rare in Japan. prevention of viral hepatitis among people who inject drugs.

235 Japan

Institute of Biomedical and Health Sciences, Hiroshima University continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.10 The government does not have guidelines Hepatitis A and hepatitis E are not health this information that address how hepatitis A and hepatitis E problems in Japan. However, we have effective is accurate. can be prevented through food and water safety. disease prevention through food and water safety.

××To our knowledge, 3.3 Liver cancer cases are registered nationally, Cancer registration system now is working. HIV this information but cases with HIV/hepatitis coinfection are not. cases are nationally reported, so we can identify is not accurate. The government publishes hepatitis disease HIV/hepatitis coinfection. reports weekly.

4.1 There is no national policy on hepatitis A The government recommends hepatitis A vaccination. vaccination for residents who intend to travel to hepatitis A endemic countries.

4.6 It is not known whether there is a national Japan has had a policy on injection safety policy on injection safety in health-care settings, for many decades. Now autodisable syringes, or whether single-use or autodisable syringes, needles and cannulas are always fully available needles and cannulas are always available in all in all healthcare facilities. health-care facilities.

4.7 Official government estimates of the number Unnecessary injections in healthcare settings and percentage of unnecessary injections is not currently a problem in Japan. administered annually in health-care settings were not known.

5.1 It is not known how health professionals Since 2010, the Japanese government has obtain the skills and competencies required established a system of counsellors specialising to effectively care for people with viral hepatitis. in viral hepatitis. There are national clinical guidelines for the management of viral hepatitis, but they do not include recommendations for cases with HIV coinfection. There are national clinical guidelines for the management of HIV, which include recommendations for coinfection with viral hepatitis.

5.3 People testing for hepatitis B and hepatitis C Hepatitis B and hepatitis C tests are free of charge do not register by name. Hepatitis B and hepatitis C for persons aged 40 years or over. Local health tests are free of charge for all individuals and are centres where people take the tests know and keep not compulsory for members of any specific group. their name confidential. Chapter Pacific 9: Western Region

236 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

××To our knowledge, 5.4 Publicly funded treatment is available for We can find the information of government this information hepatitis B and hepatitis C. The following group budget for hepatitis B and hepatitis C treatment is not accurate. is eligible for such treatment for hepatitis B: in some reports. patients receiving interferon therapy or nucleoside analogue therapy. The following group is eligible for publicly funded treatment for hepatitis C: patients receiving interferon therapy. Information was not provided on the amount spent by the government on such treatment for hepatitis B and hepatitis C.

Statement from the Institute cases is insufficient. Government should decreased. However, many diagnosed of Biomedical and Health Sciences, have a policy for raising awareness of the infected persons who have no symptoms Hiroshima University regarding importance of the surveillance system and seem to be healthy do not visit key hepatitis policy issues in Japan: among all medical doctors. hospitals for treatment. Government should continue to increase awareness Prevention of transmission. Although Screening, care and treatment. Because of the risk of hepatocellular carcinoma as we have a national surveillance system of the achievement of the hepatitis B well as the publicly funded treatment for for viral hepatitis, the rate of reporting and hepatitis C screening program, the hepatitis B and hepatitis C. from medical doctors for acute hepatitis number of unaware infected persons has Chapter 9: Chapter Western Pacific Region Western Pacific

237 Japan

Japan Association for Promotion of Hepatitis Measures*

General incorporated association Tokyo, Japan http://www.jspah.org/

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Japan reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 80.0% thought to not be accurate for 8.0% the government information for 12.0% of items. of items. of items. Survey points marked “accurate”: 1.1, 1.2, Survey points marked “not accurate”: Survey points marked “take no position”: 1.3, 2.1, 2.2, 3.1, 3.2, 3.5, 4.1, 4.2, 4.3, 4.4, 3.4 and 5.3 3.3, 4.6 and 4.7. 4.5, 4.8, 4.9, 4.10, 5.1, 5.2, 5.4 and 5.5.

Survey comments from the Japan Association for Promotion of Hepatitis Measures:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 2.2 The government collaborates with the following However, they should support private this information in-country civil society groups to develop and organisations like us actively, who are also a is accurate. implement its viral hepatitis prevention and control member of the World Hepatitis Alliance the programme: the Japan Hepatitis Council and the same as the two associations, for expanding an Viral Hepatitis Research Foundation of Japan. understanding of hepatitis. We make sure appeal to Japanese government continually.

××To our knowledge, 5.3 People testing for hepatitis B and hepatitis C It is not compulsory for members of any specific this information do not register by name. Hepatitis B and hepatitis C group, however, only some people who meet some is not accurate. tests are free of charge for all individuals and are determinate requirements can test for free. not compulsory for members of any specific group.

Statement from the Japan Association What needs to change? What should be the roles and responsibilities for Promotion of Hepatitis Measures of other stakeholders at the community, >> Increase awareness for prevention regarding key hepatitis policy issues national and international levels? medicine of Japanese national. in Japan: >> They should support more pro-actively >> Enhanced educational activities civilian organisations like us which Awareness-raising, partnerships in the workplace. focus on educational activities and and resource mobilisation >> Government should seek cooperation patient advocacy groups that deal from private companies as a national with irradiation What are the greatest problems with movement, not as mere public relations. this component of the national response >> They should provide us with more to viral hepatitis? academic information. What should be the government’s >> Low awareness for prevention medicine >> They should back up the investigation role in bringing about these changes? of Japanese national. by hepatology specialists. What responsibilities should the >> Educational activities in the workplace government have? are obstructed by lack of knowledge What evidence exists to support >> It is important for the government about hepatitis and discrimination your organisation’s viewpoint? to enhance partnerships with against infected people. civilian organisations like us which >> Estimates of hearing survey by our own >> Low budget for educational activity focus on educational activities and visits to local authority. from Japanese government. patient advocacy groups that deal >> Independent investigation for having with irradiation, and also have a a relationship with hepatology responsibility to support their activities. specialists directly. >> Result of national study by our association and partnership private company. Chapter Pacific 9: Western Region

* World Hepatitis Alliance member.

238 Global Community Hepatitis Policy Report Japan

Social Welfare Corporation, Habataki, Welfare Project*

NGO – organisation for HIV-infected patients and hepatitis C-infected patients Tokyo, Japan http://www.habatakifukushi.jp/

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Japan reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 64.0% thought to not be accurate for 16.0% the government information for 20.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: Survey points marked “take no position”: 1.2, 1.3, 2.1, 2.2, 3.5, 4.1, 4.2, 4.3, 4.5, 1.1, 3.4, 4.4 and 5.3. 3.1, 3.2, 3.3, 5.2 and 5.4. 4.6, 4.7, 4.8, 4.9, 4.10, 5.1 and 5.5.

Survey comments from the Social Welfare Corporation, Habataki, Welfare Project:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.2 There is a designated governmental unit/ Some staff members within the Health Service this information department responsible solely for coordinating Bureau of the Ministry of Health, Labour and is accurate. and/or carrying out viral hepatitis-related Welfare work to settle a massive hepatitis activities: the Office for Promotion of Hepatitis lawsuit in Japan. So all of them are not engaged Measures within the Health Service Bureau of the in promotion of hepatitis measures. Ministry of Health, Labour and Welfare. It has 12 staff members. There are two full-time equivalent staff members who work on hepatitis-related activities in all government agencies/bodies.

2.1 The government held events for World Hepatitis Habataki organisation collaboratively worked Day 2012 and has funded other viral hepatitis the events for World Hepatitis Day 2012 with public awareness campaigns since January 2011 government and contributed to the public (Annex A). awareness campaign. However, we were not given any government funding.

2.2 The government collaborates with the following It is regrettable that the name of our Social in-country civil society groups to develop and Welfare Corporation, Habataki Welfare Project, implement its viral hepatitis prevention and control is missing from this section. We are also programme: the Japan Hepatitis Council and the dedicated to making many efforts for patients Viral Hepatitis Research Foundation of Japan. with hepatitis. Surveillance for blood products is insufficient.

3.5 There is a national public health research Their designed scheme concerning public health agenda for viral hepatitis. It is not known whether should be possible on the background of robust 9: Chapter viral hepatitis serosurveys are conducted regularly. research and survey. Western Pacific Region Western Pacific

* World Hepatitis Alliance member.

239 Japan

Social Welfare Corporation, Habataki, Welfare Project continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 4.2 The government has not established the goal Hepatitis vaccination is not a priority in Japan. this information of eliminating hepatitis B. This truth of hepatitis in Japan is extremely is accurate. shameful in comparison with other Asian countries. They should set numerical targets for vaccination.

4.3 Nationally, no newborn infant in a given recent Hepatitis vaccinations are optional for individuals year received the first dose of hepatitis B vaccine in Japan. Vaccination should be an obligatory task within 24 hours of birth and no one-year-old (age among the Japanese as soon as possible. 12–23 months) in a given recent year received three doses of hepatitis B vaccine.

4.5 There is a specific national strategy and/ Manuals for avoiding medical accidents are or policy/guidelines for preventing hepatitis B prepared for health care providers. Some health and hepatitis C infection in health-care settings. care providers do not get vaccinated. There are Health-care workers are vaccinated against reports that they are accidentally involved hepatitis B prior to starting work that might put in medical mishaps. them at risk of exposure to blood.

4.8 There is a national infection control policy for All donated blood units and blood products blood banks. All donated blood units (including nationwide are screened for hepatitis B, family donations) and blood products nationwide hepatitis C and HIV. are screened for hepatitis B and hepatitis C.

4.9 There is no national policy relating to the Government has not arranged for policy and prevention of viral hepatitis among people who business operations for people who use drugs. inject drugs. Thus, it is regretful that the occurrence of coinfection with HIV and hepatitis C is gradually increasing because of sharing injection equipment with other drug users.

4.10 The government does not have guidelines All donated blood units and blood products that address how hepatitis A and hepatitis E can be are screened for hepatitis A and hepatitis E. prevented through food and water safety. Public announcements let us know how raw meat such as deer meat presents a hepatitis A transmission risk. Chapter Pacific 9: Western Region

240 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.1 It is not known how health professionals Regarding HIV, lecture and guidance is already this information obtain the skills and competencies required arranged for medical care providers in order to is accurate. to effectively care for people with viral hepatitis. obtain skills and capability required to provide There are national clinical guidelines for the effective treatment for patients. management of viral hepatitis, but they do not include recommendations for cases with HIV coinfection. There are national clinical guidelines for the management of HIV, which include recommendations for coinfection with viral hepatitis.

5.5 The following drugs for treating hepatitis Only a few patients have no medical fees. B are on the national essential medicines list Fees need to be proportionally paid depending or subsidised by the government: pegylated on patients’ income. interferon, lamivudine, adefovir dipivoxil and entecavir. The following drugs for treating hepatitis C are on the national essential medicines list or subsidised by the government: interferon alpha, pegylated interferon, ribavirin and telaprevir.

××To our knowledge, 1.1 There is a written national strategy or plan We know that government has a written national this information that focuses exclusively on the prevention and strategy and plan for prevention and control is not accurate. control of hepatitis B and hepatitis C. It includes of hepatitis B and hepatitis C. However, these components for raising awareness, vaccination, are not directly linked to raising awareness, prevention in general, prevention of transmission vaccination and prevention in general. in health-care settings, and treatment and care.

3.4 Hepatitis outbreaks are required to be reported Generally speaking, the reporting of hepatitis to the government. There is adequate laboratory outbreaks is not compulsory. capacity nationally to support investigation of viral hepatitis outbreaks and other surveillance activities.

4.4 There is a national policy specifically targeting We carefully focus on targeting mother-to child- mother-to-child transmission of hepatitis B (Annex B). transmission of hepatitis B.

Since it is not essential to get vaccinated in Japan, mother-to child transmission has

not been eliminated. 9: Chapter

5.3 People testing for hepatitis B and hepatitis C It is free of charge to receive a viral load test Region Western Pacific do not register by name. Hepatitis B and hepatitis in a local public health center. Yet there is a C tests are free of charge for all individuals and are fee for undergoing the same test in a hospital. not compulsory for members of any specific group.

241 Japan

Social Welfare Corporation, Habataki, Welfare Project continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

--We take no 3.1 There is routine surveillance for viral hepatitis. Information collection and grasp is insufficient. position regarding There is a national surveillance system for the this statement. following types of acute hepatitis: A, B, C, D and E, but not for any type of chronic hepatitis.

3.2 There are standard case definitions for In this section, it is mentioned that hepatitis hepatitis. Deaths, including from hepatitis, deaths are required to be reported to government are reported to a central registry. Of hepatitis registry. However, we do not think it is obligatory cases, 5.6% are reported as “undifferentiated” to report and resister newly diagnosed hepatitis or “unclassified” hepatitis. patients. A comprehensive structure based on law is really necessary to carry this out.

3.3 Liver cancer cases are registered nationally, It is very regrettable that we are incapable of but cases with HIV/hepatitis coinfection are not. seeing the overall picture of coinfected patients. The government publishes hepatitis disease We think that it is an immediate issue to grasp reports weekly. the current situation of these people.

5.4 Publicly funded treatment is available for Only hepatitis-infected patients with agreement hepatitis B and hepatitis C. The following group of hepatitis lawsuit can receive an admission free is eligible for such treatment for hepatitis B: of medical fees. The majority of patients with patients receiving interferon therapy or nucleoside hepatitis must pay for all medical costs. analogue therapy. The following group is eligible for publicly funded treatment for hepatitis C: patients receiving interferon therapy. Information was not provided on the amount spent by the government on such treatment for hepatitis B and hepatitis C.

Statement from the Social Welfare system. When looking back on medical of the Japanese system. Also we have Corporation, Habataki, Welfare Project measure for hepatitis, treatment for a responsibility to share our unique and regarding key hepatitis policy issues people with immediate hepatitis is well proficient system to the rest of the world. in Japan: established. However measures for people with chronic hepatitis are unsatisfactory. Habataki organisation is actively targeting Since viral hepatitis is a chronic disease, for work of patients with hepatitis as well Government should implement a policy Comprehensive medical care is as make efforts to grasp their life and focusing on the fact that it is very quickly required to sustain the long- conduct both of research and survey, important to consider long-term treatment term treatment of patients. Of course quantifying the degree of difficulty of patients. To achieve this, Government government is responsible for conducting by using International Classification should create a basis of life for patients, this, and we think that the financial of Functioning, Disability and Health. coordinating with welfare policy as well base as well as awareness-raising for We are taking care of numerous patients as their work. Both of them are essential eliminating prejudice of hepatitis among coinfected with hepatitis and HIV. and neither should be omitted. Medical people in general is necessary. From the In order to resolve their difficulty of life, care providers need to take a patient- international standpoint, introduction we energetically propose an advocacy oriented approach in order to make their and/or uptake by new system around that makes them happier and healthier life healthy, including their policy-making the world will make up for shortcomings to government as well as people in general. Chapter Pacific 9: Western Region

242 Global Community Hepatitis Policy Report Mongolia

Onom Foundation*

NGO – organisation working for improvements in Mongolian healthcare Ulaanbaatar, Mongolia http://eleg.mn/

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of Mongolia reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The respondent took no position on thought to be accurate for 88.0% the government information for 12.0% of items. of items. Survey points marked “accurate”: Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.1, 2.2, 3.1, 3.3, 3.4, 3.5, 3.2, 4.6 and 4.8. 4.1, 4.2, 4.3, 4.4, 4.5, 4.7, 4.9, 4.10, 5.1, 5.2, 5.3, 5.4 and 5.5.

Survey comments from the Onom Foundation:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is a written national strategy or plan that It all exists on paper but not a lot of actions are this information focuses exclusively on the prevention and control happening. Hepatitis B vaccination is the one is accurate. of viral hepatitis. It includes components for raising part being done quite well. Other points do not awareness, surveillance, vaccination, prevention have enough funding or not real orchestrated in general, health-care transmission prevention efforts that we can see. and coinfection with HIV.

1.2 There is a designated governmental unit/ I am not sure about the 84 full-time equivalent department responsible solely for coordinating staff members; we do not see a whole lot of and/or carrying out viral hepatitis-related work being done. activities: Hepatitis Surveillance Unit, National Center for Communicable Diseases. It has five staff members. There are 84 full-time equivalent staff members who work on hepatitis-related activities in all government agencies/bodies.

2.1 The government held events for World Hepatitis On World Hepatitis Day there usually is Day 2012. It has funded other viral hepatitis public a paragraph of news in a few news outlets. awareness campaigns since January 2011. Other than that, I have not seen an active public awareness campaign. We are working to this end using SMS, traditional media such as radio, TV and newspaper, social media and website.

2.2 The government does not collaborate I hope that we can change this and work with Chapter 9: Chapter with in-country civil society groups to develop the Government. Currently, there are talks and implement its viral hepatitis prevention going on. and control programme. Western Pacific Region Western Pacific

3.1 There is routine surveillance for viral hepatitis. This is true. But the surveillance system There is a national surveillance system for the is rudimentary; it is more of a registry system. following types of acute hepatitis: A, B and C. It registers newly detected cases only within There is a national surveillance system for the the government hospital system as a number. following types of chronic hepatitis: B, C and D. There is no follow-up or actual registry of patients.

* World Hepatitis Alliance member.

243 Mongolia

Onom Foundation continued

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 3.5 Information was not provided regarding We recently carried out a serosurvey from four this information whether or not there is a national public health aimags and capital city Ulaanbaatar (n=1162). is accurate. research agenda for viral hepatitis. Viral hepatitis This study was carried out 10 years after the serosurveys are not conducted regularly. last serosurvey.

4.3 Nationally, 96.2% of newborn infants in a given There is no evaluation of the efficacy and recent year received the first dose of hepatitis B whether there is a need for booster vaccination. vaccine within 24 hours of birth and 98.8% of one-year-olds (ages 12–23 months) in a given recent year received three doses of hepatitis B vaccine.

5.1 Health professionals obtain the skills and We believe that this national guideline needs to competencies required to effectively care for be revised, as there is no inclusion of hepatitis C people with viral hepatitis through schools of treatment advances. health professionals (pre-service education).

5.5 The following drug for treating hepatitis B is Formerly, 80% of the cost was subsidised. included on the national essential medicines list Since last year 66% is being subsidised. or is subsidised by the government: lamivudine. The following drug for treating hepatitis C is included on the national essential medicines list or is subsidised by the government: ribavirin.

Statement from the Onom Foundation treatment by traditional medicine as not including costs for medical tests and regarding key hepatitis policy issues well as alternative doctors. doctors. In fact, it is common for people in Mongolia: who receive such treatment regimen for When we convened over 80 leading HCV to incur out-of-pocket costs of more There is an existing treatment guideline hepatologists during the National than US$20,000. for both hepatitis C virus (HCV) and Conference on Viral Hepatitis that we hepatitis B virus (HBV) that was approved organised on March 26, 2014, there was For hepatitis B, it does not help to have by the Ministry of Health. The guideline a discussion on updating the treatment oral antivirals that are several times more recommends 48 weeks monotherapy guideline, training of doctors, and its expensive in Mongolia, as people with peginterferon or peginterferon with enforcement within the health care system. HBV will require long-term suppressive ribavirin combination therapy for HCV Because of rapid advances in treatment therapy. Although 66.7% subsidies exist patients after liver biopsy. HBV treatment options for viral hepatitis, we recognise for lamivudine and hepaviral paid by the recommendation is that if HBeAg positive, the need for updated treatment guidelines Health Insurance Fund, out-of-pocket interferon for 16 weeks, peginterferon incorporating elements from the latest expenses for hepatitis B control run into for two to 48 weeks, and lamivudine/ versions such as the Hepatitis C Guideline the thousands of dollars. adefovir/entecavir/tenofovir for a year, issued by the World Health Organization and following seroconversion of HbeAg, on April 9, 2014. More importantly, These figures contrast starkly with the at least another 6 months. we would like to highlight the urgent need reality that Mongolia is a low-income for a proper training scheme for doctors country. According to the National However, the guideline is not widely and hepatologists. Statistical Office, annual income for an distributed and doctors are generally average Mongolian was around US$4,300 not aware of its existence. In addition, To make the situation even worse, in 2013. In turn, it means that receiving patients also complain often to our the cost of the interferon and ribavirin a viral hepatitis treatment will require experts that they get different treatment treatment regimen is very expensive in approximately five years of income for recommendations from every doctor Mongolia. From the current market prices an average Mongolian. In addition, it is they visit, illustrating the fact that this for these drugs, it is calculated that a reported that nearly 30% of the Mongolian treatment guideline is not well followed 12-month treatment regimen of interferon population is living below the poverty

Chapter Pacific 9: Western Region by the doctors. The situation is worsened and ribavirin will cost US$10,000 to line of US$ 2 per day. Because of these by the self-medication of patients and US$18,300 in direct drug expenses, brutal realities, odds are really stacked

244 Global Community Hepatitis Policy Report

against Mongolians and it is no surprise The Solution: of eradication of viral hepatitis in that Mongolia has the highest mortality Mongolia that we at Onom Foundation rate of liver cancer in the world. >> Currently, we are proposing to propose to implement within the carry out national screening of viral Viral Hepatitis Eradication Program The Problem: hepatitis and create a national viral in Mongolia. hepatitis database. We are looking to >> We believe that the financial difficulties >> No formal screening implement this in cooperation with other of getting the treatment can only stakeholders and with support from the >> No strong specific training scheme be overcome with cooperation Ministry of Health. for healthcare workers between pharmaceutical companies, >> Comprehensive training is crucially the government, the national Health >> No financial solution yet important for the long-term success Insurance Fund and civil society. Chapter 9: Chapter Western Pacific Region Western Pacific

245 New Zealand

Hepatitis Foundation of New Zealand*

NGO – direct service provider Whakatne, New Zealand hepatitisfoundation.org.nz

SURVEY HIGHLIGHTS

The respondent reviewed 25 items of information that the government of New Zealand reported for the 2013 World Health Organization Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States. //The government information was ××The government information was --The respondent took no position on thought to be accurate for 80.0% thought to not be accurate for 8.0% the government information for 12.0% of items. of items. of items. Survey points marked “accurate”: Survey points marked “not accurate”: 2.1 Survey points marked “take no position”: 1.1, 1.2, 1.3, 2.2, 3.1, 3.3, 3.4, 3.5, 4.1, and 5.1. 3.2, 4.3 and 4.7. 4.2, 4.4, 4.5, 4.6, 4.8, 4.9, 4.10, 5.2, 5.3, 5.4, and 5.5.

Survey comments from the Hepatitis Foundation of New Zealand:

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 1.1 There is no written national strategy or plan that A first draft of a national hepatitis C strategy this information focuses exclusively or primarily on the prevention will be developed mid-2014. is accurate. and control of viral hepatitis.

1.2 There is a designated governmental unit/ There is also a staff member working department responsible solely for coordinating on hepatitis C in Long Term Conditions, and/or carrying out viral hepatitis-related Sector Capability and Implementation. activities: the Public Health, Sector Capability and Implementation Business Unit of the Ministry of Health. It has one tenth of one full-time staff member. It is not known how many people work full time on hepatitis-related activities in all government agencies/bodies.

1.3 The government has a viral hepatitis prevention Needle exchange. and control programme that includes activities targeting the following specific population: people who inject drugs.

3.1 There is routine surveillance for viral hepatitis. Hepatitis Foundation of New Zealand is There is a national surveillance system for the government-funded to follow up chronic following types of acute hepatitis: A, B, C, D and E, hepatitis B in a national hepatitis B programme: and for chronic hepatitis B. to date we have 16,000 hepatitis B patients in long term follow-up.

3.5 There is no national public health research The latest serosurvey was conducted November agenda for viral hepatitis. Viral hepatitis 2013 by Needle Exchange. serosurveys are conducted regularly; the target population is people who inject drugs. The last serosurvey was carried out in 2009. Chapter Pacific 9: Western Region

* World Hepatitis Alliance member.

246 Global Community Hepatitis Policy Report

Information reported by government (2012–2013) Civil society respondent comments (2014)

//To our knowledge, 5.3 People testing for both hepatitis B and However this information is impossible to this information hepatitis C register by name; the names are retrieve given the huge number of different is accurate. kept confidential within the system. Hepatitis B codes for hepatitis. and hepatitis C tests are free of charge for all individuals. Hepatitis B tests are compulsory for blood donors and immigrants, and hepatitis C tests for blood donors.

5.4 Publicly funded treatment for hepatitis B New Zealand citizens and residents only. and hepatitis C is available to some segments of the population, but information was not provided on who is eligible. In fiscal year 2011/2012, the government spent NZ$ 16 080 000 (US$ 13 026 971) on such treatment for hepatitis B and hepatitis C.

××To our knowledge, 5.1 Health professionals obtain the skills and I would suggest more needs to be done with this information competencies required to effectively care for people health workers to require the correct skills is not accurate. with viral hepatitis through schools for health to deal with people with viral hepatitis. professionals (pre-service education), on-the-job training and postgraduate training. There are no national clinical guidelines for the management of viral hepatitis, but there are for the management of HIV, which include recommendations for coinfection with viral hepatitis.

Statement from the Hepatitis Foundation and the New Zealand government. To date could do more by listing viral hepatitis of New Zealand regarding key hepatitis New Zealand has a robust system in place as a health target for general practice. policy issues in New Zealand: to identify hepatitis-infected individuals. By doing so patients would be screened However there is still a lack of empathy and appropriate action taken, i.e. follow-up, New Zealand is unique in that it has in general practice and other healthcare treatment or vaccination. In saying addressed hepatitis B for the past providers that viral hepatitis is not a this though New Zealand is resourced 30 years working in partnership with serious disease regardless of continuing better than most countries but still the Hepatitis Foundation (New Zealand) education. The New Zealand government has many hills to climb. Chapter 9: Chapter Western Pacific Region Western Pacific

247 Philippines

Yellow Warriors Society Philippines

NGO – hepatitis patient group Baguio, Philippines http://yellowwarriors.webs.com/home.htm

SURVEY HIGHLIGHTS

The Government of the Philippines did not respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, and therefore the Yellow Warriors Society Philippines could not comment on government information for this report.

The organisation provided the following Awareness-raising. We believe that Prevention of transmission. We believe general statement regarding key hepatitis awareness is still low. Due to stigma, [viral vaccination is the key. Unfortunately, policy issues in the Philippines: hepatitis] carriers do not talk about this vaccine is only free to infants from birth to topic. More needs to be done if we want a age one. The government should expand Current situation. The Department of higher level of awareness. A solution is this policy and also give free vaccine to Health has a free hepatitis B vaccine networking with organisations just like adults. Again, an information drive would programme for infants [birth to age what Yellow Warriors Society Philippines help in preventing transmission. one]. But since the Philippines is an is doing now. Also, more informational archipelago, bringing vaccine to far-flung materials are needed. Yellow Warriors Screening, care and treatment. We still provinces poses a challenge. We can Society Philippines as an organisation will need to work more on this. Unlike in other see this because of the increase in the always be ready to accept hepatitis carriers countries where health care is provided prevalence of hepatitis B. We believe strict and enlighten their families and close for viral hepatitis carriers, here it is not implementation and monitoring would friends. included in health care. We hope we solve this problem – making sure that can convince the government to help vaccine will be available to newborns and Evidence-based policy. The government hepatitis B and hepatitis C carriers by making sure that the vaccination regimen should use its resources to create a policy. at least subsidising the medicines. will be completed. Yellow Warriors Society Proper monitoring is required in order to Philippines has been attending meetings pinpoint high-risk areas and assess how for us to share our experience and help in effectively programmes are implemented. the formulation of policies and guidelines. Chapter Pacific 9: Western Region

248 Global Community Hepatitis Policy Report Taiwan (Chinese Taipei)

Taiwan Liver Research Foundation*

Private foundation Kaohsiung, Taiwan (Chinese Taipei) http://liver.club.kmu.edu.tw/

SURVEY HIGHLIGHTS

The Government of Taiwan (Chinese Taipei) was not invited to respond to the World Health Organization survey for the 2013 Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States because it is not a WHO Member State. Therefore the Taiwan Liver Research Foundation could not comment on government information for this report.

The organisation provided the following Screening, care and treatment. As HCV is a curable disease at present. The key general statement regarding key hepatitis hepatitis C virus (HCV) infection is often points of preventing and reducing the policy issues in Taiwan (Chinese Taipei): asymptomatic and could easily remain burden of HCV are early diagnosis, effective undiagnosed, screening in a community- preventing programmes, and appropriate Awareness-raising, partnerships based setting becomes an important treatment. As the screening, diagnosis, and and resource mobilisation. Disease task. With the progressive emergence of treatment of HCV infection continues to awareness remains a critical issue in HCV/HIV coinfection in intravenous drug evolve with the availability of more effective our country. We’re pleased to address users, the prognosis and outcome of HCV yet more costly treatments, the cost of care this issue by working closely with many infection will be exacerbated. Therefore, will continue to rise. non-profit organisations in Taiwan. searching for HCV reservoirs becomes The achievement has been much beyond an essential step, both in the general However, this increasing cost of care what our government has done. We have population as well as in high-risk groups. may still be acceptable and justifiable if it learned and shared constructive strategies results in an accompanying improvement with many domestic and foreign allies. We have conducted more than 20 in quality-adjusted life years and voluntary mass screening sessions in amelioration of related morbidity and We have recently seen a friendly residents. The items include HBsAg, anti- mortality. Therefore, medical accessibility change at the Ministry of Health and HCV, transaminases, alpha-fetoprotein, and disease awareness remain critical steps Welfare regarding hepatitis screening, and abdominal ultrasonography. All for a better chance of curing people with with screening efforts incorporated into anti-HCV-positive subjects will be tested hepatitis C. We provide free transportation a nationwide health check-up programme. further for HCV RNA. Meanwhile, a self- for indigenous people living in mountainous We are making every effort to raise disease administered questionnaire is designed areas and for poor people to access medical awareness in our community by means to identify possible routes of infection. care for their hepatitis C infection. of public education, free screening and We also have provided examinations for symposia held for medical professionals. people at high risk of HCV infection, such Of note was that we created a strategy aiming as haemodialysis patients, intravenous to have young children teach their parents drug users, HIV-infected patients and families about hepatitis prevention and those patients requiring periodic and the importance of disease awareness. transfusion. Chapter 9: Chapter Western Pacific Region Western Pacific

* World Hepatitis Alliance member.

249 250 Chapter 9: Western Pacific Region Annexes Annex A: Study Methodology and Limitations

The 2014 Global Community Hepatitis Policy Report is based This study is subject to a number of limitations. Firstly, on findings from the World Hepatitis Alliance’s 2014 civil society generalisability is restricted by the number of countries survey. The survey was written in English. Survey responses represented. Ninety-five organisations from 58 countries and were sought from World Hepatitis Alliance members (patient one special administrative region submitted surveys. Seventy-six groups) and other civil society actors, including nongovernmental organisations from 46 countries were able to comment on their organisations, academic institutions and medical associations. governments’ responses from the 2013 WHO report. These data The survey was distributed via e-mail to focal points identified provide the basis for the quantitative analyses in the 2014 Global by the World Hepatitis Alliance, with e-mails sent to approximately Community Hepatitis Policy Report, and therefore the quantitative 800 organisations worldwide. It was also distributed via social findings represent only 46 countries. The other 19 organisations media, and was available for download on the World Hepatitis responded from 12 countries and one special administrative region Alliance website (http://www.worldhepatitisalliance.org/en/civil- where no government information had been provided for the 2013 society-report-2014.html). Data collection took place from WHO report, and hence they could only provide qualitative data. 1 February 2014 to 15 June 2014. Furthermore, regarding the findings for the six geographical There are two versions of the World Hepatitis Alliance’s 2014 regions designated in this report, some regions were represented civil society survey. Both versions can be found in Annex B. by only a small number of survey responses. This both restricts generalisability about trends within regions and also limits the The three-part version of the survey was sent to organisations value of comparisons across regions. based in countries where governments had contributed information to the Global Policy Report on the Prevention and Civil society survey responses were received from multiple Control of Viral Hepatitis in WHO Member States, published organisations in some countries, while other countries are by the World Health Organization (WHO) in 2013. Part A of the represented by a single organisation. Consequently, the accuracy civil society survey collected information about the responding or inaccuracy of government information may be over-reported in organisation. Part B consisted of 25 items based on information countries from which multiple survey submissions were received. provided by governments for the 2013 WHO report. Each civil society survey respondent reviewed the information from The 2014 civil society survey was only available in English. This the government of its own country and indicated whether the may have prevented some organisations from fully understanding government reporting appeared to be accurate or inaccurate. questions and also may have affected their ability to provide In Part C, respondents were invited to write statements about accurate responses. key national hepatitis policy issues of their choosing. The time lag between when governments submitted information The two-part version of the civil society survey was sent to to WHO and when civil society organisations submitted organisations based in countries where governments had not information to the World Hepatitis Alliance also needs to be submitted information for the 2013 WHO report. Part A collected recognised. Data collection for the 2013 WHO report took place information about the responding organisation. Part B asked from July 2012 to February 2013. The fact that data collection respondents to write statements about key national hepatitis for the 2014 Global Community Hepatitis Policy Report took policy issues of their choosing. place more than one year later may have implications for how some civil society organisations viewed the information from Global, regional and country summaries in this report were their governments. developed using the completed survey responses. Quantitative data presented in tables and figures may not total 100% due Finally, the findings presented in the report are drawn entirely to the rounding of decimals. Information about income group from the survey responses of the civil society organisations classification was obtained from World Bank 2013 data (http:// identified in Chapters 3–9. It was not possible to independently data.worldbank.org/about/country-classifications/country-and- verify the information submitted by survey respondents. lending-groups). Survey comments were left in the respondents’ own words aside from minor edits made for clarity. Annexes Annexes

252 Global Community Hepatitis Policy Report

Annex B: World Hepatitis Alliance 2014 Survey of Civil Society Stakeholders

This annex presents the two surveys that form the basis of this report: the first was for organisations in countries where governments contributed information to the 2013 WHO hepatitis policy survey and the second was for organisations in countries where governments did not contribute information.

World Hepatitis Alliance 2014 Survey of Civil Society Stakeholders

A response to the Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States (World Health Organization, 2013)

Your organisation’s cooperation is requested in gathering data for The following survey has three parts: the World Hepatitis Alliance’s 2014 global hepatitis policy report. This report is seen as a civil society response to information >> In Part A your organisation is asked to provide basic information provided by governments for the 2013 global hepatitis policy about itself. report published by the World Health Organization (WHO) >> In Part B your organisation is asked to review the actual (http://www.who.int/csr/disease/hepatitis/global_report/en/). published text that describes what your government stated for the 2013 report, and to comment on whether the information is correct. >> In Part C your organisation is asked to discuss the policy response to hepatitis in your country in greater depth, focusing on issues that your organisation wishes to prioritise. Your organisation also is invited to put forth an “agenda for change” outlining proposed roles and responsibilities for key stakeholders.

Part A. Organisational information

Organisation name First name of person completing survey

Street address Last name of person completing survey

City Postal code/zip code Position

Country E-mail address

Website Phone number (+ )

Please select the one item that best describes your organisation:

FF NGO: hepatitis patient group

FF NGO: direct service provider

FF NGO: other (please describe: )

FF Medical society Annexes FF Private foundation

FF Other:

253 Annex B continued

Part B. Response to Information Reported by Governments

Information reported by [country] government Civil society perspective (All text in this column is copied from the Global Policy Report (please complete by selecting one check-box in each cell) on the Prevention and Control of Viral Hepatitis in WHO Member States, 2013)

1. National coordination

1.1. Government response to: FF To our knowledge, this information is accurate. >> In your country, is there a written national strategy or plan FF To our knowledge, this information is not accurate. that focuses exclusively or primarily on the prevention and control of viral hepatitis? FF We take no position regarding this statement. >> If yes, is it exclusive for viral hepatitis or does it also Comments: (200 words maximum) address other diseases? Please indicate components of the strategy or plan.

1.2. Government response to: FF To our knowledge, this information is accurate. >> Is there a designated governmental unit/department FF To our knowledge, this information is not accurate. responsible only for coordinating and/or carrying out viral hepatitis-related activities? FF We take no position regarding this statement. >> If yes, what is its name? Comments: (200 words maximum) >> How many people work full-time (or how many full-time equivalent staff) on hepatitis-related activities in all government agencies/bodies?

1.3. Government response to: FF To our knowledge, this information is accurate. >> Does your government have a viral hepatitis prevention FF To our knowledge, this information is not accurate. and control programme that includes activities targeting specific populations? FF We take no position regarding this statement. >> If yes, please indicate which populations. Comments: (200 words maximum)

2. Awareness-raising and partnerships

2.1. Government response to: FF To our knowledge, this information is accurate. >> Did your government hold events for World Hepatitis FF To our knowledge, this information is not accurate. Day 2012? FF We take no position regarding this statement. >> Has your government funded any public viral hepatitis awareness campaigns since January 2011, other than World Comments: (200 words maximum) Hepatitis Day?

2.2. Government response to: FF To our knowledge, this information is accurate. >> Does your government collaborate with any civil society FF To our knowledge, this information is not accurate. group within your country (such as patient groups or national or local nongovernmental organisations) to FF We take no position regarding this statement. develop and implement its viral hepatitis prevention and Comments: (200 words maximum) control programme? >> If yes, please name major partners. Annexes Annexes

254 Global Community Hepatitis Policy Report

3. Evidence-based policy and data for action

3.1. Government response to: FF To our knowledge, this information is accurate. >> Is there routine surveillance for viral hepatitis? FF To our knowledge, this information is not accurate. >> If yes, is there a national surveillance system for the FF We take no position regarding this statement. following types of acute hepatitis? A, B, C. >> Is there a national surveillance system for the following Comments: (200 words maximum) types of chronic hepatitis? B, C.

3.2. Government response to: FF To our knowledge, this information is accurate. >> Are there standard case definitions for hepatitis infections? FF To our knowledge, this information is not accurate. >> Are deaths, including from hepatitis, reported to a FF We take no position regarding this statement. central registry? >> What percentage of hepatitis cases are reported as Comments: (200 words maximum) “undifferentiated” or “unclassified” hepatitis?

3.3. Government response to: FF To our knowledge, this information is accurate. >> Are liver cancer cases registered nationally? FF To our knowledge, this information is not accurate. >> Are cases of HIV/hepatitis co-infection registered FF We take no position regarding this statement. nationally? >> How often are hepatitis disease reports published? Comments: (200 words maximum)

3.4. Government response to: FF To our knowledge, this information is accurate. >> Are hepatitis outbreaks required to be reported to the FF To our knowledge, this information is not accurate. government? FF We take no position regarding this statement. >> If yes, are they further investigated? >> Is there adequate laboratory capacity nationally to Comments: (200 words maximum) support viral hepatitis outbreak investigations and other surveillance activities?

3.5. Government response to: FF To our knowledge, this information is accurate. >> Is there a national public health research agenda for viral FF To our knowledge, this information is not accurate. hepatitis? FF We take no position regarding this statement. >> Are viral hepatitis serosurveys conducted regularly? >> If yes, how often? Comments: (200 words maximum) >> When was the last one carried out? Please specify the target populations. Annexes

255 Annex B continued

4. Prevention of transmission

4.1. Government response to: FF To our knowledge, this information is accurate. >> Is there a national hepatitis A vaccination policy? FF To our knowledge, this information is not accurate. >> If yes, what groups does the policy address? FF We take no position regarding this statement.

Comments: (200 words maximum)

4.2. Government response to: FF To our knowledge, this information is accurate. >> Has your government established the goal of eliminating FF To our knowledge, this information is not accurate. hepatitis B? If yes, in what timeframe? FF We take no position regarding this statement.

Comments: (200 words maximum)

4.3. Government response to: FF To our knowledge, this information is accurate. >> Nationally, what percentage of newborn infants in a given FF To our knowledge, this information is not accurate. recent year received the first dose of hepatitis B vaccine within 24 hours of birth? FF We take no position regarding this statement. >> Nationally, what percentage of one-year-olds (ages 12–23 Comments: (200 words maximum) months) in a given recent year received three doses of hepatitis B vaccine?

4.4. Government response to: FF To our knowledge, this information is accurate. >> Is there a national policy specifically targeting mother-to- FF To our knowledge, this information is not accurate. child transmission of hepatitis B? FF We take no position regarding this statement.

Comments: (200 words maximum)

4.5. Government response to: FF To our knowledge, this information is accurate. >> Is there a specific national strategy and/or policy/ FF To our knowledge, this information is not accurate. guidelines for preventing hepatitis B and hepatitis C infection in health care settings? FF We take no position regarding this statement. >> If yes, are health workers vaccinated against hepatitis B Comments: (200 words maximum) prior to starting work that might put them at risk of exposure to blood?

4.6. Government response to: FF To our knowledge, this information is accurate. >> Is there a national policy on injection safety in health-care FF To our knowledge, this information is not accurate. settings? FF We take no position regarding this statement. >> If yes, what type of syringes does the policy recommend for therapeutic injections? Comments: (200 words maximum) >> Are single-use or auto-disable syringes, needles and cannulas always available in all health care facilities? Annexes Annexes

256 Global Community Hepatitis Policy Report

4.7. Government response to: FF To our knowledge, this information is accurate. >> What are your government’s official estimates of the number FF To our knowledge, this information is not accurate. and percentage of unnecessary injections administered annually in health care settings? (e.g., injections that are FF We take no position regarding this statement. given when an equivalent oral medication is available) Comments: (200 words maximum)

4.8. Government response to: FF To our knowledge, this information is accurate. >> Is there a national infection control policy for blood banks? FF To our knowledge, this information is not accurate. >> Are all donated blood units (including family donations) FF We take no position regarding this statement. and blood products nationwide screened for hepatitis B? >> Are all donated blood units (including family donations) Comments: (200 words maximum) and blood products nationwide screened for hepatitis C?

4.9. Government response to: FF To our knowledge, this information is accurate. >> Is there a national policy relating to the prevention of viral FF To our knowledge, this information is not accurate. hepatitis among people who inject drugs? FF We take no position regarding this statement.

Comments: (200 words maximum)

4.10. Government response to: FF To our knowledge, this information is accurate. >> Does your government have guidelines addressing how FF To our knowledge, this information is not accurate. hepatitis A and hepatitis E can be prevented through food and water safety? FF We take no position regarding this statement. Comments: (200 words maximum)

5. Screening, care and treatment

5.1. Government response to: FF To our knowledge, this information is accurate. >> How do health professionals in your country obtain the FF To our knowledge, this information is not accurate. skills and competencies required to effectively care for people with viral hepatitis? FF We take no position regarding this statement. >> Are there national clinical guidelines for the management Comments: (200 words maximum) of viral hepatitis? >> If yes, do they include recommendations for cases of HIV co-infection? >> If no, are there national clinical guidelines for the management of HIV that include recommendations for co-infection with viral hepatitis? Annexes

257 Annex B continued

5.2. Government response to: FF To our knowledge, this information is accurate. >> Does your government have a national policy relating FF To our knowledge, this information is not accurate. to screening and referral to care for hepatitis B? For hepatitis C? FF We take no position regarding this statement. Comments: (200 words maximum)

5.3. Government response to: FF To our knowledge, this information is accurate. Please answer the following questions about hepatitis B and FF To our knowledge, this information is not accurate. hepatitis C testing in your country. FF We take no position regarding this statement. >> When testing, do people register by name? >> If people register by name, are their names kept confidential Comments: (200 words maximum) within the system, or is there open access to the names? >> Is the test free of charge for all individuals? >> Is the test free of charge for members of any specific group? >> Is the test compulsory for members of any specific group?

5.4. Government response to: FF To our knowledge, this information is accurate. >> Is publicly funded treatment available for hepatitis B? FF To our knowledge, this information is not accurate. If yes, who is eligible? FF We take no position regarding this statement. >> Is publicly funded treatment available for hepatitis C? If yes, who is eligible? Comments: (200 words maximum) >> How much does the government spend on publicly funded treatment for hepatitis B and hepatitis C?

5.5. Government response to: FF To our knowledge, this information is accurate. >> Which hepatitis B drugs and hepatitis C drugs are included FF To our knowledge, this information is not accurate. on the national essential medicines list or are subsidised by the government? FF We take no position regarding this statement. Comments: (200 words maximum) Annexes Annexes

258 Global Community Hepatitis Policy Report

Part C. Key Hepatitis Policy Issues and Proposed Agenda for Change

For Part C, your organisation is asked to discuss the policy response to viral hepatitis in your country in greater depth, focusing on one or more of five topics listed below. Please follow these steps:

Choose one of the five topics: Write your organisation’s assessment of the national response to viral hepatitis as it relates to the topic you chose (maximum 1. National coordination 400 words and please use the box below). Some points to consider are: 2. Awareness-raising, partnerships and resource mobilisation (WHO Axis 1)1 >> What are the greatest problems with this component of the 3. Evidence-based policy and data for action (WHO Axis 2)1 national response to viral hepatitis? 4. Prevention of transmission (WHO Axis 3)1 >> What needs to change? 5. Screening, care and treatment (WHO Axis 4)1 >> What should be the government’s role in bringing about these changes? What responsibilities should the government have? >> What should be the roles and responsibilities of other stakeholders at the community, national and international levels? (You may wish to list these in bullet points.) >> What evidence exists to support your organisation’s viewpoint? (Consider, for example, citing surveys, research reports, statistics and newspaper articles.)

Please repeat these steps for as many of the five topics as you wish to address.

Topic 1

Topic 2

Topic 3

Topic 4

Topic 5 Annexes

1. Prevention and control of viral hepatitis infection: framework for global action. Geneva, WHO, 2012 (http://who.int/csr/disease/hepatitis/Framework/en/index.html).

259 Annex B continued

World Hepatitis Alliance 2014 Survey of Civil Society Stakeholders

A response to the Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States (World Health Organization, 2013)

Your organisation’s cooperation is requested in gathering data Your government did not respond to the 2013 survey. The World for the World Hepatitis Alliance’s 2014 global hepatitis Hepatitis Alliance therefore would like to ask you to complete a policy report. This report is seen as a civil society response modified version of its 2014 survey of civil society stakeholders. to information provided by governments for the 2013 global The following survey has two parts: hepatitis policy report published by the World Health Organization (http://www.who.int/csr/disease/hepatitis/global_report/en/). >> In Part A your organisation is asked to provide basic information about itself. All World Health Organization member states were surveyed for >> In Part B your organisation is asked to discuss the policy the 2013 report. Civil society organisations in countries where response to hepatitis in your country, focusing on issues governments responded to the survey are being invited to that your organisation wishes to prioritise. Your organisation comment on the information that their governments provided. also is invited to put forth an “agenda for change” outlining proposed roles and responsibilities for key stakeholders.

Part A. Organisational information

Organisation name First name of person completing survey

Street address Last name of person completing survey

City Postal code/zip code Position

Country E-mail address

Website Phone number (+ )

Please select the one item that best describes your organisation:

FF NGO: hepatitis patient group

FF NGO: direct service provider

FF NGO: other (please describe: )

FF Medical society

FF Private foundation

FF Other: Annexes Annexes

260 Global Community Hepatitis Policy Report

Part B. Key hepatitis policy issues and proposed agenda for change

For Part B, your organisation is asked to discuss the policy response to viral hepatitis in your country in greater depth, focusing on one or more of five topics listed below. Please follow these steps:

Please repeat these steps for as many of the five topics as you wish to address.

Topic 1

Topic 2

Topic 3

Topic 4

Topic 5 Annexes

1. Prevention and control of viral hepatitis infection: framework for global action. Geneva, WHO, 2012 (http://who.int/csr/disease/hepatitis/Framework/en/index.html).

261 Annex C: Findings for All Civil Society Survey Items

The following tables (Tables 1–5) present civil society respondent addressed by governments are summarised in the tables rather answers for each item in the 25-item survey, with the tables than being copied verbatim from the text of the survey that was reflecting the organisation of the survey into five sections: sent to governments for the 2013 World Health Organization national coordination; awareness-raising and partnerships; (WHO) Global Policy Report on the Prevention and Control evidence-based policy and data for action; prevention of of Viral Hepatitis in WHO Member States. For the original survey, transmission; and screening, care and treatment. The questions please see Annex E of that report.

Table 1. National coordination: how civil society organisations responded to hepatitis policy information provided by their governments

Response chosen by civil society survey respondent (N=76)

To our We take Survey Question(s) addressed by governments To our knowledge, knowledge, no position item for 2013 WHO global policy report this information is No response (%) this information regarding this not accurate (%) is accurate (%) statement (%)

Is there a written national strategy or plan that 1.1 focuses exclusively or primarily on the prevention 78.9% 18.4% 2.7% 0% and control of viral hepatitis? Is there a designated governmental unit/department responsible only for coordinating and/or carrying out viral hepatitis-related activities? If yes, what is the name of the unit/department, and how many 1.2 73.7% 17.1% 9.2% 0% staff members does it have? How many people work full-time (or how many full-time equivalent staff) on hepatitis-related activities in all government agencies/bodies? Does your government have a viral hepatitis prevention and control programme that includes 1.3 61.8% 32.9% 5.3% 0% activities targeting specific populations? If yes, please indicate which populations.

Table 2. Awareness-raising and partnerships: how civil society organisations responded to hepatitis policy information provided by their governments

Response chosen by civil society survey respondent (N=76)

Did your government hold events for World Hepatitis Day 2012? Has your government funded 2.1 67.1% 23.7% 9.2% 0% any public viral hepatitis awareness campaigns since January 2011, other than World Hepatitis Day? Does your government collaborate with any civil society group within your country (such as patient groups or national or local nongovernmental 2.2 68.4% 23.7% 7.9% 0% organisations) to develop and implement its viral

Annexes Annexes hepatitis prevention and control programme? If yes, please name major partners.

262 Global Community Hepatitis Policy Report

Table 3. Evidence-based policy and data for action: how civil society organisations responded to hepatitis policy information provided by their governments

Response chosen by civil society survey respondent (N=76)

Is there routine surveillance for viral hepatitis? 3.1 64.5% 28.9% 6.6% 0% If yes, for which types of acute and chronic hepatitis? Do standard case definitions for hepatitis infections exist? Are deaths, including from 3.2 hepatitis, reported to a central registry? What 52.6% 18.4% 28.9% 0% percentage of hepatitis cases are reported as “undifferentiated” or “unclassified” hepatitis? Are liver cancer cases registered nationally? Are cases of HIV/hepatitis co-infection registered 3.3 59.2% 32.9% 7.9% 0% nationally? How often are hepatitis disease reports published? Are hepatitis outbreaks required to be reported to the government? If yes, are they further 3.4 investigated? Is there adequate laboratory capacity 65.8% 26.3% 7.9% 0% nationally to support viral hepatitis outbreak investigations and other surveillance activities? Is there a national public health research agenda for viral hepatitis? Are viral hepatitis 3.5 serosurveys conducted regularly? If yes, 68.4% 19.7% 11.8% 0% how often? When was the last one carried out? Please specify the target populations. Annexes

263 Annex C continued

Table 4. Prevention of transmission: how civil society organisations responded to hepatitis policy information provided by their governments

Response chosen by civil society survey respondent (N=76)

Is there a national hepatitis A vaccination policy? 4.1 77.6% 17.1% 5.3% 0% If yes, what groups does the policy address? Has your government established the goal of 4.2 72.4% 15.8% 11.8% 0% eliminating hepatitis B? If yes, in what timeframe? Nationally, what percentage of newborn infants in a given recent year received the first dose of hepatitis B vaccine within 24 hours of birth? 4.3 67.1% 10.5% 22.4% 0% Nationally, what percentage of one-year-olds (ages 12–23 months) in a given recent year received three doses of hepatitis B vaccine? Is there a national policy specifically targeting 4.4 68.4% 19.7% 11.8% 0% mother-to-child transmission of hepatitis B? Is there a specific national strategy and/or policy/guidelines for preventing hepatitis B and hepatitis C infection in health care settings? 4.5 75.0% 13.2% 10.5% 1.3% If yes, are health workers vaccinated against hepatitis B prior to starting work that might put them at risk of exposure to blood? Is there a national policy on injection safety in health care settings? If yes, what type of syringes does the policy recommend for therapeutic 4.6 77.6% 7.9% 14.5% 0% injections? Are single-use or auto-disable syringes, needles and cannulas always available in all health care facilities? What are your government’s official estimates of the number and percentage of unnecessary 4.7 injections administered annually in health 60.8% 6.6% 27.6% 0% care settings? (e.g., injections given when an equivalent oral medication is available) Is there a national infection control policy for blood banks? Are all donated blood units (including 4.8 84.2% 6.6% 7.9% 1.3% family donations) and blood products nationwide screened for hepatitis B and hepatitis C? Is there a national policy relating to the prevention 4.9 65.8% 18.4% 14.5% 1.3% of viral hepatitis among people who inject drugs? Does your government have guidelines 4.10 addressing how hepatitis A and hepatitis E 68.4% 15.8% 14.5% 1.3% can be prevented through food and water safety? Annexes Annexes

264 Global Community Hepatitis Policy Report

Table 5. Screening, care and treatment: how civil society organisations responded to hepatitis policy information provided by their governments

Response chosen by civil society survey respondent (N=76)

How do health professionals in your country obtain the skills and competencies required to effectively care for people with viral hepatitis? Are there national clinical guidelines for the management of viral hepatitis? If yes, do they 5.1 67.1% 23.7% 7.9% 1.3% include recommendations for cases of HIV co-infection? If no, are there national clinical guidelines for the management of HIV that include recommendations for coinfection with viral hepatitis?

Does your government have a national policy 5.2 relating to screening and referral to care 71.1% 22.4% 6.6% 1.3% for hepatitis B? For hepatitis C?

When testing for hepatitis B and hepatitis C in your country, do people register by name? If people register by name, are their names kept confidential within the system, or is there 5.3 65.8% 26.3% 6.6% 1.3% open access? Is the test free of charge for all individuals? Is the test free of charge for members of any specific groups? Is the test compulsory for members of any specific groups? Is publicly funded treatment available for hepatitis B? If yes, who is eligible? Is publicly funded treatment available for hepatitis C? 5.4 68.4% 23.7% 6.6% 1.3% If yes, who is eligible? How much is spent by the government on publicly funded treatment for hepatitis B and hepatitis C?

Which hepatitis B and hepatitis C drugs are 5.5 included on the national essential medicines 75.0% 15.8% 9.2% 1.3% list or are subsidised by the government? Annexes

265 Annex D: World Health Assembly Resolution 67.6

SIXTY-SEVENTH WORLD HEALTH ASSEMBLY WHA 67.6

Agenda item 12.3 24 May 2014 Hepatitis

The Sixty-seventh World Health Assembly,

Having considered the report on hepatitis;1

Reaffirming resolution WHA 63.18, adopted in 2010 by the World Recognizing the role of health promotion and prevention in the Health Assembly, which recognized viral hepatitis as a global fight against viral hepatitis, and emphasizing the importance public health problem and the need for governments and of strengthening vaccination strategies as high impact and populations to take action to prevent, diagnose and treat viral cost-effective actions for public health; hepatitis, and that called upon WHO to develop and implement a comprehensive global strategy to support these efforts, Noting with concern that globally the birth dose coverage rate and expressing concern at the slow pace of implementation; with hepatitis B vaccine remains unacceptably low;

Recalling also resolution WHA 45.17 on immunisation and Acknowledging also that, in Asia and Africa, hepatitis A and E vaccine quality, which urged Member States to include hepatitis B continue to cause major outbreaks while a safe effective hepatitis A vaccines in national immunisation programmes, and expressing vaccine has been available for nearly two decades, that hepatitis E concern that currently the global hepatitis B vaccine coverage vaccine candidates have been developed but not yet certified by WHO, for infants is estimated at 79% and is therefore below the 90% that lack of basic hygiene and sanitation promotes the risks of global target; hepatitis A virus and hepatitis E virus transmission and that most vulnerable populations do not have that access to those vaccines; Recalling further resolution WHA 61.21, which adopted the Global Strategy and Plan of Action on Public Health, Innovation and Taking into account the fact that injection overuse and unsafe Intellectual Property; practices account for a substantial burden of death and disability worldwide, with an estimated 1.7 million hepatitis B virus Noting with deep concern that viral hepatitis is now responsible infections and 320,000 hepatitis C virus infections in 2010; for 1.4 million deaths every year (compared to 1.6 million deaths from HIV/AIDS, 1.3 million deaths from tuberculosis and 600,000 Recognizing the need for safe blood to be available to blood deaths from malaria), that around 500 million people are currently recipients, as established by resolution WHA 28.72 on utilization living with viral hepatitis and some 2000 million have been and supply of human blood and blood products, in which the infected with hepatitis B virus, and considering that most people Health Assembly recommended the development of national with chronic hepatitis B or C are unaware of their infection public services for blood donation, and in resolution WHA 58.13, and are at serious risk of developing cirrhosis or liver cancer, in which the Health Assembly agreed to the establishment of an contributing to global increases in both of those chronic diseases; annual World Blood Donor Day, considering that one of the main routes of transmission of hepatitis B virus and hepatitis C virus Also noting that millions of acute infections with hepatitis A is parenteral; virus and hepatitis E virus occur annually and result in tens of thousands of deaths almost exclusively in lower- and Further recognizing the need to strengthen health systems middle-income countries; and integrate collaborative approaches and synergies between prevention and control measures for viral hepatitis and those Considering that while hepatitis C is not preventable by for infectious diseases such as HIV and other related sexually vaccination, current treatment regimens offer high cure rates that transmitted and bloodborne infections and other mother-to-child are expected to further improve with upcoming new treatments; transmitted diseases, as well as for cancer and noncommunicable and that although hepatitis B is preventable with a safe and disease programmes; effective vaccine, there are 240 million people living with hepatitis B virus infection and available effective therapies could prevent Noting that hepatitis B virus, and particularly hepatitis C virus, cirrhosis and liver cancer among many of those infected; disproportionally impact people who inject drugs, and that of the 16 million people who inject drugs around the world, an estimated Expressing concern that preventive measures are not universally 10 million are living with hepatitis C virus infection and 1.2 million implemented and that equitable access to and availability of are living with hepatitis B virus infection; quality, effective, affordable and safe diagnostics and treatment regimens for both hepatitis B and C are lacking in many parts Recalling United Nations General Assembly resolution 65/277 of the world, particularly in developing countries; paragraph 59(h) which recommends “giving consideration, as appropriate, to implementing and expanding risk- and harm- Annexes Annexes

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WHA 67.6

reduction programmes, taking into account the WHO, UNODC, 4. to put in place an adequate surveillance system for viral UNAIDS Technical Guide for Countries to Set Targets for Universal hepatitis in order to support decision-making on evidence- Access to HIV Prevention, Treatment and Care for Injecting Drug based policy; User2 in accordance with national legislation”,3 as important 5. to strengthen the system for collection of blood from low- components of both hepatitis B and hepatitis C prevention, risk, voluntary, non-remunerated donors, for quality-assured diagnosis and treatment programmes and that access to these screening of all donated blood to avoid transmission of HIV, remain limited or absent in many countries that have a high hepatitis B, hepatitis C and syphilis, and for good transfusion burden of infection with hepatitis B virus and hepatitis C virus; practices to ensure patient safety; Cognizant of the fact that 4–5 million people living with HIV 6. to strengthen the system for quality-assured screening of are coinfected with hepatitis C virus and more than 3 million all donors of tissues and organs to avoid transmission of HIV, are coinfected with hepatitis B virus, which has become a major hepatitis B, hepatitis C and syphilis; cause of disability and mortality among those receiving 7. to reduce the prevalence of chronic hepatitis B infection antiretroviral therapy; as proposed by WHO regional committees, in particular by enhancing efforts to prevent perinatal transmission through Taking into account the fact that viral hepatitis is a major problem the delivery of the birth dose of hepatitis B vaccine; within indigenous communities in some countries; 8. to strengthen measures for the prevention of hepatitis A Welcoming the development by WHO of a global strategy, within and E, in particular the promotion of food and drinking water a health systems approach, on the prevention and control of viral safety and hygiene; hepatitis infection;4 9. to strengthen infection control in health care settings through all necessary measures to prevent the reuse of Considering that most Member States lack adequate surveillance equipment designed only for single use, and cleaning and systems for viral hepatitis to enable them to take evidence-based either high-level disinfection or sterilization, as appropriate, policy decisions; of multi-use equipment; Taking into account that a periodic evaluation of implementation 10. to include hepatitis B vaccine for infants, where appropriate, of the WHO strategy is crucial to monitoring the global response in national immunisation programmes, working towards to viral hepatitis and the fact that the process was initiated full coverage; with the publication in 2013 of the Global policy report on the 11. to make special provision in policies for equitable access to prevention and control of viral hepatitis in WHO Member States;5 prevention, diagnosis and treatment for populations affected by viral hepatitis, particularly indigenous people, migrants Acknowledging the need to reduce liver cancer mortality rates and and vulnerable groups, where applicable; that viral hepatitis is responsible for 78% of cases of primary liver cancer, and welcoming the inclusion of an indicator on hepatitis B 12. to consider, as necessary, national legislative mechanisms vaccination in the comprehensive global monitoring framework for the use of the flexibilities contained in the Agreement adopted in resolution WHA 66.10 on the Follow-up to the Political on Trade-Related Aspects of Intellectual Property Rights in Declaration of the High-level Meeting of the General Assembly order to promote access to specific pharmaceutical products; 7 on the Prevention and Control of Non-communicable Diseases; 13. to consider, whenever necessary, the use of administrative and legal means in order to promote access to preventive, Acknowledging the need to fight and to eliminate stigmatization diagnostic and treatment technologies against viral hepatitis; of, and discrimination against, people living with or affected by viral hepatitis and determined to protect and safeguard their 14. to implement comprehensive hepatitis prevention, diagnosis human rights, and treatment programmes for people who inject drugs, including the nine core interventions,8 as appropriate, in line 1. URGES Member States:6 with the WHO, UNODC, UNAIDS technical guide for countries to set targets for universal access to HIV prevention, 1. to develop and implement coordinated multisectoral national treatment and care for injecting drug users,9 and in line with strategies for preventing, diagnosing, and treating viral the global health sector strategy on HIV/AIDS, 2011–2015, hepatitis based on the local epidemiological context; and the United Nations General Assembly resolution 65/277, taking into account the domestic context, legislation and 2. to enhance actions related to health promotion and jurisdictional responsibilities; prevention of viral hepatitis, while stimulating and strengthening immunisation strategies, including for 15. to aim to transition by 2017 to the exclusive use, where hepatitis A, based on the local epidemiological context; appropriate, of WHO prequalified or equivalent safety- engineered injection devices including reuse-prevention 3. to promote the involvement of civil society in all aspects syringes and sharp injury prevention devices for therapeutic Annexes of preventing, diagnosing and treating viral hepatitis; injections and develop related national policies;

267 Annex D continued

WHA 67.6

16. to review, as appropriate, policies, procedures and practices 6. to provide technical guidance on prevention of transfusion- associated with stigmatization and discrimination, including transmitted hepatitis B and C through safe donation from low- the denial of employment, training and education, as well as risk, voluntary, non-remunerated donors, counselling, referral travel restrictions, against people living with and affected and treatment of infected donors, and effective blood screening; by viral hepatitis, or impairing their full enjoyment of the 7. to examine the feasibility of and strategies needed for highest attainable standard of health; the elimination of hepatitis B and hepatitis C with a view to potentially setting global targets; 2. CALLS upon all relevant United Nations funds, 8. to estimate global, regional and domestic economic impact and programmes, specialized agencies and other stakeholders: burden of viral hepatitis in collaboration with Member States and relevant organizations, taking into due account potential 1. to include prevention, diagnosis and treatment of viral and perceived conflicts of interest; hepatitis in their respective work programmes and work in close collaboration; 9. to support Member States with technical assistance in the use of the flexibilities in the Agreement on Trade-Related Aspects 2. to identify and disseminate mechanisms to support of Intellectual Property Rights when needed, in accordance countries in the provision of sustainable funding for the with the Global Strategy and Plan of Action on Public Health, prevention, diagnosis and treatment of viral hepatitis; Innovation and Intellectual Property; 10. to lead a discussion and work with key stakeholders to facilitate 3. REQUESTS the Director-General: equitable access to quality, effective, affordable and safe hepatitis B and C treatments and diagnostics; 1. to provide the necessary technical support to enable Member States to develop robust national viral hepatitis prevention, 11. to assist Member States to ensure equitable access to quality, diagnosis and treatment strategies with time-bound goals; effective, affordable and safe hepatitis B and C treatments and diagnostics, in particular in developing countries; 2. to develop specific guidelines on adequate, effective and affordable algorithms for diagnosis in developing countries; 12. to maximize synergies between viral hepatitis prevention, diagnosis and treatment programmes and ongoing work 3. in consultation with Member States, to develop a system to implement the WHO global action plan for the prevention for regular monitoring and reporting on the progress in viral and control of noncommunicable diseases 2013–2020; hepatitis prevention, diagnosis and treatment; 13. to report to the Sixty-ninth World Health Assembly, or earlier 4. to provide technical guidance on cost-effective ways to if needed, through the Executive Board, on the implementation integrate the prevention, testing, care and treatment of viral of this resolution. hepatitis into existing health care systems and make best use of existing infrastructure and strategies; Ninth plenary meeting, 24 May 2014 A67/VR/9 5. to work with national authorities, upon their request, to promote comprehensive and equitable access to prevention, diagnosis and treatment of viral hepatitis, with particular attention to needle and syringe programmes and opioid substitution therapy or other evidence-based treatments for people who inject drugs, in national plans, taking into consideration national policy context and procedures and to support countries, upon request, to implement these measures;

1. Document A67/13 2. Available from www.who.int/hiv/pub/idu/targetsetting/en/index.html 3. WHO, UNODC, UNAIDS technical guide for countries to set targets for universal access to HIV prevention, treatment and care for injecting drug users. Geneva: World Health Organization; 2009. 4. Prevention and control of viral hepatitis infection: framework for global action. Geneva: World Health Organization; 2012. 5. Global policy report on the prevention and control of viral hepatitis in WHO Member States. Geneva: World Health Organization; 2013. 6. And, where applicable, regional economic integration organizations. 7. The WTO General Council in its Decision of 30 August 2003 (i.e. on Implementation of paragraph 6 of the Doha Declaration on the TRIPS Agreement and Public Health) decided that “‘pharmaceutical product’ means any patented product, or product manufactured through a patented process, of the pharmaceutical sector needed to address the public health problems as recognized in paragraph 1 of the Declaration. It is understood that active ingredients necessary for its manufacture and diagnostic kits needed for its use would be included.” 8. Needle and syringe programmes; opioid substitution therapy and other drug dependence treatment; HIV testing and counselling; antiretroviral therapy; prevention and treatment of sexually transmitted infections; condom programmes for people who inject drugs and their sexual partners; targeted information, education and communication for people who inject drugs and their sexual partners; vaccination, diagnosis and treatment of viral hepatitis; prevention, diagnosis and treatment of tuberculosis. Annexes Annexes 9. WHO, UNODC, UNAIDS technical guide for countries to set targets for universal access to HIV prevention, treatment and care for injecting drug users. Geneva: World Health Organization; 2009.

268 Global Community Hepatitis Policy Report Annexes

269 Annexes Annexes

270

The World Hepatitis Alliance seeks to highlight civil society perspectives on hepatitis in this 2014 report – the first of its kind. Civil society stakeholders are relative newcomers to the global public health arena, and their roles are still being defined in many intergovernmental and national forums, including those involving the World Health Organization (WHO). To ensure that their voices are heard, the 2014 Global Community Hepatitis Policy Report has been planned as a civil society response to information provided by governments for the 2013 hepatitis policy report published by WHO. That document, the Global Policy Report on the Prevention and Control of Viral Hepatitis in WHO Member States, is a welcome resource, but it only utilises information provided by governments. A full and accurate picture of the policy response to hepatitis at the country level requires additional input from stakeholders with diverse perspectives.

In recent decades, civil society actors have made invaluable contributions to global public health issues. In some ways, they have even helped to shape fundamental public health paradigms. Involvement of such a nature is our only hope for overcoming the immense barriers to viral hepatitis prevention and control.

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