Strategic Plan 2016 - 2017

www.worldhepatitisalliance.org Foreword Introduction Strategic goal 1 Strategic goal 2 Strategic goal 3 Strategic goal 4

About the World Hepatitis Alliance Foreword from the President

The World Hepatitis Alliance (WHA) is a patient-led and patient driven non-governmental or lung cancer is well understood by the public, organisation (NGO). With over 200 member patient groups from nearly 100 countries across more needs to be done to drive the message the world, WHA provides global leadership to drive action to help eliminate viral hepatitis as home about the dangers of viral hepatitis and the a threat by 2030. Their aim is to work with governments, members and other complications, like cirrhosis and liver cancer, it key partners to support and elevate patient voices, to raise the profile of viral hepatitis and can cause. to help establish comprehensive hepatitis strategies which have robust prevention measures and access to affordable diagnostics and treatment. Advocacy is equally important, given the many challenges we face, and the urgent need for action by governments and multinational organisations. Our mission Some of these challenges:

We provide global leadership to drive action to help eliminate viral hepatitis as a public Charles Gore • The lack of thorough, up-to-date, and health threat by 2030. We work with governments, members and other key partners to President of the World Hepatitis Alliance consistent epidemiological information on the support and elevate the voices of people living with viral hepatitis, to raise the profile of magnitude and distribution of viral hepatitis; viral hepatitis and to help establish comprehensive hepatitis strategies which have robust Currently, 400 million people are living with viral • The gaps in provision to newborns prevention measures and access to affordable diagnostics and treatment. hepatitis around the world, a liver that and to adults outside of the healthcare kills more people than the other major infectious workforce; – HIV, and . In fact, • Access to drugs and to diagnostics; Our values 1.4 million people are dying of hepatitis every year • Workforce capacity; — that’s 4,000 people every day — a figure that • The lack of a global funding mechanism to Making a difference has been rising inexorably year after year until it support national hepatitis programmes Central to every action and decision we make is our core value of making a difference. We is now the 7th biggest cause of death. This is made consider driving action and making a difference part of our day-to-day life as well as our all the more shocking and disgraceful as hepatitis Although we have made very significant progress overall commitment to our members and the work we do. is largely preventable. in the last few years at putting in place increasing commitment from national governments, there Ambition The World Hepatitis Alliance provides global is still a long road ahead of us. To steal Winston Each day we strive to achieve a set of ambitious goals to improve the quality of everything leadership and supports action on a global scale Churchill’s words: “This is not the end, it is not we do for people living with viral hepatitis. that will change this and have a direct and positive even the beginning of the end, but it is perhaps the impact on the lives of hundreds of millions of end of the beginning.” Integrity individuals. We are committed to halting the viral We aspire to live to the highest standards of personal honesty and behaviour; we never hepatitis death toll and moving towards its final compromise our reputation and always act in the best interests of our membership. elimination.

Trust Awareness is crucial in the fight against this We work in an environment based on respect and trust. Trust is essential for us to main- epidemic; even today, the general population’s tain a successful relationship with members and key partners. We use trust to strengthen understanding of the different hepatitis viruses Charles Gore, President of the World Hepatitis our efforts worldwide. (A, B, C, D & E) and the damage they can cause to Alliance the liver, a vital organ, is scant at best. Whereas the life-threatening significance of heart disease

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World Hepatitis Alliance Strategic Plan 2016 - 2017 World Hepatitis Alliance Strategic Plan 2016 - 2017 Foreword Introduction Strategic goal 1 Strategic goal 2 Strategic goal 3 Strategic goal 4

Note from the CEO Introduction

4 Strategic goals However, we have introduced a fourth goal - Increased access to diagnostics, vaccines and new therapies for hepatitis. This reflects the need for the huge scale-up in diagnosis and treatment that will be required to achieve the global targets proposed by the GHSS. Many more countries with effective and funded hepatitis plans in place or at least in development We are also acutely aware that this scale-up is 1 going to require very significant investment by national governments and we are convinced that Raquel Peck this simply will not happen unless the advocacy CEO of the World Hepatitis Alliance voice is greatly enhanced. Our new Strategic Plan therefore reflects our focus on this, given that we As a result of the achievements of our last Strategic are not only uniquely placed to do this but may Plan, the viral hepatitis landscape is changing. indeed be the only organisation capable of doing it. Increased access to diagnostics, vaccines and new In particular, the 2014 World Health Assembly As before, our strategic goals are made up of therapies for hepatitis Resolution, with which we were intimately a series of actions and each has a set of key 2 involved from its inception, has driven significant performance indicators so we can monitor our progress. WHO has developed a Global Health progress. We report on these actions and KPIs Sector Strategy (GHSS) on viral hepatitis with every 3 months. ambitious targets and there is a much stronger focus by governments on developing national This new 2016-17 Strategic Plan is part of our hepatitis plans that will be necessary to achieve long-term strategy which is designed to deliver those targets. our single over-arching goal: the elimination of Increased influence of the World Hepatitis Alliance and and C. What is so exciting for us is that its members through capability building programmes The success of our work has meant that we the Global Strategy is proposing exactly the same 3 have kept many of the elements of our previous goal. Part of Strategic Plan will be to ensure that all Strategic Plan in our new 2016-17 plan but it 194 UN Member States sign up to this goal. has evolved to take account of the changing environment. We have kept our three strategic goals: 1. Many more countries with effective and funded hepatitis plans in place or at least in development Raquel Peck, Chief Executive Officer of the World Greatly increased profile and priority of viral hepatitis 2. Increased influence of the World Hepatitis Hepatitis Alliance 4 Alliance and its members through capability building programmes 3. Greatly increased profile and priority of viral hepatitis 4 5

World Hepatitis Alliance Strategic Plan 2016 - 2017 World Hepatitis Alliance Strategic Plan 2016 - 2017 Foreword Introduction Strategic goal 1 Strategic goal 2 Strategic goal 3 Strategic goal 4

Strategic Goal 1 Action 1.4 Action 1.5 Action 1.6 Continue to ensure the Encourage and promote Many more countries with effective comprehensive national hepatitis strategies in place or Deliver, in partnership with voice of patients are at research into effective at least in development. the forefront of high level WHO and in collaboration scale up interventions policy discussions (i.e. with the Government of through a variety of address WHO Executive methods, including the Brazil and partners, the Board and the World Health World Hepatitis Summit More countries have recently started the process of developing national plans and we estimate Assembly, contribute to second World Hepatitis programme, our affiliation that around 30 now either have real plans or are developing them. This still leaves the great WHO regional committee Summit to the Hepatology, majority with no comprehensive national approach and even countries with plans are finding huge meetings, participate in Medicine and Policy open STAC and civil society access journal, Polaris challenges in getting the financial resources needed. Strong patient advocacy will be critical to reference groups, and other Observatory and the ensure the necessary resources are allocated to hepatitis. key meetings) University of Deusto’s Hub.

Action 1.7 Action 1.8 In partnership with Continue to second WHO and the Scottish a technical officer to Government, establish WHO EURO to support a baseline for countries the development and with effective national implementation of a strategies either in place or regional action plan in development

WHA attends WHO EMRO Regional Committee

Action 1.1 Action 1.2 Action 1.3 Action 1.9 Action 1.10 Action 1.11

When no patient groups Upon request, work directly Work with WHO to develop Support the policy work Promote the inclusion Support WHO with the exist, respond to requests with our members to support a monitoring mechanism in focused on the elimination of civil society in the production, update from national governments them in their collaboration of viral hepatitis in Egypt, development of effective and dissemination of line with WHA Resolution to support them in the with national governments Scotland, Mongolia, and and funded plans guidelines, in particular 67.6 development of effective in the development of Georgia on hepatitis testing and and funded national plans effective and funded national treatment plans

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World Hepatitis Alliance Strategic Plan 2016 - 2017 World Hepatitis Alliance Strategic Plan 2016 - 2017 Foreword Introduction Strategic goal 1 Strategic goal 2 Strategic goal 3 Strategic goal 4

Strategic Goal 1 Strategic Goal 2

Key Performance Indicators Increased access to diagnostics, vaccines and new therapies for hepatitis

2016/2017 With the vast majority of people living with viral hepatitis still undiagnosed, it will be impossible zzAn additional 10 countries with effective and to reduce the 1.4 million annual death toll without a huge scale-up in testing and treatment. To funded national strategies either in place or in achieve this it is essential that neither availability nor price are barriers. Even access to the birth development. dose of hepatitis B vaccine is currently an issue with GAVI only supporting the pentavalent vaccine that cannot be given at birth.

Deliverables

2016 2017

zzParticipation in key WHO meetings zzParticipation in key WHO meetings zzA regional action plan to tackle hepatitis in zzA regional action plan to tackle hepatitis in Action 2.1 Europe is developed Europe is launched Strengthen partnerships zzHold broad consultations to develop the zzProgress on elimination strategies showcased with key stakeholders such programme of the second World Hepatitis on our website as MSF, DNDI, Coalition Summit zzCo-host the second World Hepatitis Summit plus, FIND and CHAI to zzProduce a Pre-Summit survey on our zzPolicy case studies are showcased at the second maximise efforts in this members’ involvement in the development of World Hepatitis Summit area effective and funded hepatitis plans zzProduce a Post-Summit survey on our members’ involvement in the development of

effective and funded hepatitis plans WHA members with the access to treatment open letter at the World Hepatitis Summit 2015

World Hepatitis Summit

The Summit is a joint World Health Organization and World Hepatitis Alliance event that Action 2.2 Action 2.3 Action 2.4 directly addresses the overwhelming global burden of viral hepatitis. As global momentum Provide advice as part of Deliver, in partnership with Work with governments towards tackling hepatitis grows, the World Hepatitis Summit provides a unique platform to the MPP’s recently formed WHO and in collaboration and the pharmaceutical strengthen the hepatitis community voice, assist countries in developing national hepatitis with the Government of industry to ensure rapid Expert Advisory Board for action plans and to raise the global profile of viral hepatitis. The Summit is a focus for action Brazil and partners, the registration of technologies hepatitis and central to driving commitment from global funders, the and other second World Hepatitis and medicines key actors to make real lasting progress in drastically reducing the burden of viral hepatitis. Summit The inaugural 2015 Summit was hosted by the Scottish Government and supported by Glasgow Caledonian University and Health Protection Scotland.

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World Hepatitis Alliance Strategic Plan 2016 - 2017 World Hepatitis Alliance Strategic Plan 2016 - 2017 Foreword Introduction Strategic goal 1 Strategic goal 2 Strategic goal 3 Strategic goal 4

Action 2.5 Action 2.6 Action 2.7 Strategic Goal 3 Conduct an annual survey Host two pilot meetings Support discussions with Increased influence of the World Hepatitis Alliance and its members through capability of access to affordable in different countries to our African members and building programmes medicines and diagnostics explore innovative funding partners focusing on the solutions for hepatitis creation of an African structure focused on In order to stimulate political interest and action from policy makers, advocacy is ever more important access to medicines and in a world of strongly competing priorities and in particular the new emphasis on non-communicable diseases. Robust data, effective therapies and public health/clinical champions are vital but without diagnostics the patient perspective (the human face), civil servants, politicians and governments are less likely to respond effectively. We will continue to promote the work of WHA and its members in order to increase our influence with governments and other key global health stakeholders. We will also deliver much needed capability-building work, focusing on upskilling existing members but also on Action 2.8 Action 2.9 Action 2.10 creating new member organisations, making full use of our Patient Advocacy Creation Tool. Continue to promote our Elevate the access issue Educate our members access to treatment open through external media around access to letter statements, including blog diagnostics and medicines posts, website statements Action 3.1 and monthly magazines Create a capacity/capability building hub initially in the areas of advocacy, access to medicines and diagnostics and communications to be hosted on our website Strategic Goal 2

Key Performance Indicators World Hepatitis Alliance booth at the 2015 EASL International Liver Congress in Vienna, Austria

2016/2017 Action 3.2 Action 3.3 Action 3.4 z zAn additional 20 countries with affordable Produce an advocacy Make the outcomes from Strengthen the visibility medicines and diagnostics available webinar series and a user the WHO/WHA monitoring and influence of our mechanism available to guide and tools that focus member groups at high on developing advocacy members to inform their profile conferences such as Deliverables capacity to effectively advocacy efforts engage policy makers, EASL and AASLD 2016 2017 share policy developments and opportunities, share/ train advocates on new z z zSurvey establishing the level of access to affordable zCo-host the second World Hepatitis Summit surveys, tools etc medicines and diagnostics conducted with a programme that reflects the importance of access to diagnostics, vaccines and new 10 11 therapies

World Hepatitis Alliance Strategic Plan 2016 - 2017 World Hepatitis Alliance Strategic Plan 2016 - 2017 Foreword Introduction Strategic goal 1 Strategic goal 2 Strategic goal 3 Strategic goal 4

Action 3.8 Action 3.9 Action 3.10 Build members’ capability Establish a baseline for Conduct a survey to to promote their inclusion members that are involved identify the levels of in the development of in the development and stigma and discrimination effective and funded implementation of effective in different countries national plans in line with and funded hepatitis plans resolution WHA67.6 / action 1.3

Strategic Goal 3

Key Performance Indicators

2016/2017 zz20% increase in the number of members involved in the development of effective and funded hepatitis plans

WHA members participate in a capability building workshop at the 2015 Pre-Summit

Member Conference in Glasgow, Scotland Deliverables

2016 2017

Action 3.5 Action 3.6 Action 3.7 zzWork with professional medical societies to zzCreation of new patient groups in target Connect our members with Partner with professional Deliver capacity/capability scope opportunities for creating new patient countries strategic partners such as medical societies to set building workshops for our groups zzBooth at EASL WHO country and regional up new patient groups in members during the second zzBooth at EASL zzCapacity/capability workshops successfully offices and equip them to target countries using our World Hepatitis Summit in zzLaunch of the webinar series and user guide delivered at the second World Hepatitis build a strong advocacy Patient Advocacy Creation Brazil and tools Summit zzPut our members in touch with their respective zzDisseminate findings of the survey voice at a national level Tool (PACT) WHO regional offices (and through them establishing a baseline for members that are country offices) involved in the development of effective and zzSurvey establishing a baseline for members funding hepatitis plans that are involved in the development 12 of effective and funding hepatitis plans 13 conducted

World Hepatitis Alliance Strategic Plan 2016 - 2017 World Hepatitis Alliance Strategic Plan 2016 - 2017 Foreword Introduction Strategic goal 1 Strategic goal 2 Strategic goal 3 Strategic goal 4

Strategic Goal 4

Greatly increased profile and priority of viral hepatitis

Viral hepatitis kills more each year than any of the other communicable diseases and yet its profile and priority still do not reflect this properly. It is now the 7th leading cause of death and we will continue to work to ensure it is recognised as such.

Action 4.1 Action 4.2 Action 4.3 Run a consultation with the Ensure that the WHO Continue to support our community and develop, Global Health Sector members’ efforts to raise launch and host a global Strategy for viral hepatitis, awareness of hepatitis hepatitis movement with together with its targets on through the promotion of elimination as the theme diagnosis and treatment, is adopted at the World Health Assembly 2016

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World Hepatitis Alliance Strategic Plan 2016 - 2017 World Hepatitis Alliance Strategic Plan 2016 - 2017 Foreword Introduction Strategic goal 1 Strategic goal 2 Strategic goal 3 Strategic goal 4

Action 4.4 Action 4.5 Action 4.6 Work with healthcare Continue to fight stigma Utilise the findings of our professionals to strengthen through our work with the HCV Quest to educate their partnerships with media the hepatitis community, patient groups and to healthcare professionals further the SDGs and GHSS and the general public agenda about the impact of

The World Indigenous Peoples’ Conference on Viral Hepatitis is handed to

Brazil where the next one will take place

Action 4.10 Action 4.11 Action 4.12 Highlight the inclusion of Engage non-traditional Elevate the profile viral hepatitis in the SDGs to supporters through hepatitis by systematically the wider global health strategic corporate reviewing and creating community partnerships new website content and collaterals

Strategic Goal 4 Action 4.7 Action 4.8 Action 4.9 Key Performance Indicators Examine replicating the Hold a World Indigenous Work to raise the profile of 2016 2017 concept of the HCV Quest Peoples meeting at APASL hepatitis within the field zz90 governments participating in World zz100 governments participating in World by undertaking a survey on to promote engagement of global health through Hepatitis Day Hepatitis Day the impact of hepatitis B in the region ahead of the our ECOSOC consultative

on patients second World Indigenous status, participation on Deliverables Peoples Conference on NCD Consultation and hepatitis to be held in UNGASS events 2016 2017 Brazil, September 2017 zzLaunch of the hepatitis community movement zzSuccessful holding of second World Indigenous zzProvide our members with concepts and Peoples Conference on viral hepatitis collaterals to support their activities on World zzProvide our members with concepts and Hepatitis Day collaterals to support their activities on World 16 Hepatitis Day 17

World Hepatitis Alliance Strategic Plan 2016 - 2017 World Hepatitis Alliance Strategic Plan 2016 - 2017 Foreword Introduction Strategic goal 1 Strategic goal 2 Strategic goal 3 Strategic goal 4

WHA Board

Charles Gore Danjuma K Adda Amina Ghanem Dee Lee Helen Tyrrell Homie A. Razavi President Executive Board Member for the African Region Executive Board Member for the Eastern Mediterranean Region Executive Board Member for the Western Pacific Region Non-Executive Board Member Non-Executive Board Member

George Kalamitsis Su Wang Satyajit Ghosh Gottfried Hirnschall Executive Board Member for the European Region Executive Board Member for the Americas Region Executive Board Member for the South-East Asia Region Observer

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World Hepatitis Alliance Strategic Plan 2016 - 2017 World Hepatitis Alliance Strategic Plan 2016 - 2017 UK and mailing address: 1, Baden Place London SE1 1YW UK

Swiss address: 86bis, route de Frontenex Case Postale 6364 1211 Genève 6 Switzerland

Telephone: +41 (0) 22 518 06 16 Email: [email protected]

www.worldhepatitisalliance.org