MARCH/APRIL 2020: Vol 44 Voice hep Your magazine from the World Hepatitis Alliance

New partnership to eliminate hepatitis C in London kicks off

COVID-19 message from WHA President

WALL OF STORIES “Get tested. Take treatment if you need it and live a full life!” Contents Stay connected note from our ceo www.worldhepatitisalliance.org Regulars Welcome to the March/April edition of hepVoice. [email protected] I hope that you and your loved ones are coping 4 hepHeadlines www.facebook.com/worldhepalliance with the COVID-19 pandemic which has swept across the globe in recent months. 7 Dates for the diary @Hep_Alliance The pandemic is unprecedented in our lifetimes. I Features @worldhepatitisalliance know it is a worrying time and we must all stand together. I want to reassure you that WHA will do everything it can to support our members and 8 COVID-19 message from the global hepatitis community. You can read our WHA President Su Wang president, Su Wang’s, message to our members and hepatitis community colleagues on page 10 New partnership to Want to contribute? eight. eliminate hepatitis C We welcome your contributions so in London kicks off Hepatitis elimination efforts have continued even please get in touch at in these challenging times. A new partnership to 13 Find the Missing Millions: contact@worldhepatitisalliance. eliminate hepatitis C in London kicked off at the inspiration from India org to have your news and stories beginning of March (see page 10). The US has also included in future issues and feel announced new screening recommendations that 16 WHA welcomes five new free to share this magazine urge the testing of all adults in the country for members with your network. hepatitis C (see page four). Don’t 18 APASL 2020 — a success miss out There is no doubt that the COVID-19 pandemic - receive will have a ripple effect that will continue to 20 Wall of Stories: Arman hepVoice impact all of our lives for some time. Together, straight we will continue our fight for hepatitis elimination to your regardless of the circumstances. Out now: inbox! I look forward to keeping up with your work, and World Hepatitis taking inspiration from your resolve Day 2019 in challenging times. Summary Report

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Cary James 2 hep Voice MARCH/APRIL 2020 hep Voice MARCH/APRIL 2020 3 Preventive Service chronic hepatitis B needed for the repair TaskForce, said: “Some infection. process. Removing headlines people may not be even one of the factors aware of their risk or When the hepatitis prevented successful hep they may not want B virus first enters completion of the Hepatitis is regularly making the news thanks to the efforts of to disclose it to you, its host’s liver cells, repair, suggesting WHA members. Here are a few highlights. so the way to capture its DNA genome has that targeting any of more people is to several gaps and the five factors can screen everyone. It imperfections that potentially prevent New US guidelines 44,700 new hepatitis called “baby boomer” also helps reduce must be repaired hepatitis B infection. call for most adults C cases were reported generation), but the stigma.” before the virus to be screened for in the United States by expanding the can establish itself The researchers plan hepatitis C in 2017. The majority recommendation to Read more. permanently inside to investigate further of people living include all adults liver cells. To repair to find out exactly A national panel of with hepatitis C aged 18 – 79, health Researchers discover itself, the hepatitis how the five identified health experts in remain unaware of officials hope they proteins vital for B virus uses the DNA repair factors work the United States of their condition, and will be able to hepatitis B infection repair machinery of its together to fix the America has released those most at risk of increase diagnosis host cell, but the exact hepatitis B virus’s new guidelines calling contracting the virus rates and better link components it needs to genome. for most adults in may be the least likely people to care and use for the repair had the country to be to seek testing or curative treatment. not been identified. Ploss said: “Our screened for hepatitis treatment. Importantly, adopting study is an excellent C. The U.S. Preventive a “test all” approach Researchers Alexander starting point to Services Task Force’s Previous U.S. guidelines may help to reduce Ploss, associate finally answer the new guidelines recommended stigma. professor of molecular decades-old question have been issued in testing for adults Researchers have biology at Princeton of how the stable response to an almost born between 1945 Dr Douglas K. Owens, identified five factors University, USA, and form of the virus’s fourfold increase in the and 1965 (the so- chair of the U.S. and proteins that postdoctoral fellow Lei DNA is generated. number of hepatitis the hepatitis B virus Wei tested dozens of Until we understand C cases in the United (HBV) needs for DNA repair factors in the process, which States, which have replication of its DNA, a lab experiment in an is crucial for HBV been attributed to an providing new insight attempt to identify the persistence, targeted increase in opioid and into the disease. components required clinical therapies that injection drug use over The researchers are for the hepatitis B virus can completely clear the last decade. hopeful that their to repair itself. They the infection will discovery could lead discovered that a set of remain out of reach.” According to federal to the development of just five factors purified data, approximately new therapies to treat from human cells was Read more

4 hep Voice MARCH/APRIL 2020 hep Voice MARCH/APRIL 2020 5 Participating in a hepatitis related activity or have an event planned?

Email us on [email protected] or contact us on social media. Large investment be treated each year. C infections to WHO needed to eliminate The estimated US$3.9 elimination levels will hepatitis C in Pakistan billion cost equates be substantial, but could deliver huge to approximately nine equally so are the Dates for the Diary health benefits per cent of Pakistan’s benefits to patients and Upcoming events and activities taking place in the current health the community.” coming months. A new study has expenditure or an revealed that a large Dr Huma Qureshi, investment of US$1.50 7 april investment of at least per person per year. national lead for the US$3.9 billion is needed prevention and control to eliminate hepatitis Through making of viral hepatitis in World Health Day 2020 will focus on the vital role played by nurses and midwives in providing health care around the world. Nurses and midwives can C in Pakistan, but that this investment and Pakistan and former play a key role in preventing and treating viral hepatitis, Celebrate their immense the intervention could achieving WHO’s executive director of contribution to eliminating viral hepatitis using #WorldHealthDay deliver huge benefits elimination targets, the Pakistan Health and #SupportNursesAndMidwives, and find out more on the in terms of lives saved Pakistan could prevent Research Council, World Health Organization website. and reduced ill health. 5.8 million new added: “Alongside hepatitis C infections screening and april The collaborative and 390,000 hepatitis treatment, we also 23 - 30 study revealed that, to C-related deaths need to raise public World Immunization Week The theme of this year’s World Immunization Week is #VaccinesWork for all, and achieve elimination by by 2030. awareness on viral the campaign will focus on how vaccines – and the people who develop, deliver 2030 in line with World hepatitis and educate Health Organization Dr Saeed Hamid, and receive them – are heroes by working to protect the health of everyone, people on the risk everywhere. The hepatitis B developed by Dr Baruch Blumberg was (WHO) targets, professor and factors and how the world’s first-ever “cancer vaccine” and is thought to have prevented more approximately 36 department chair of hepatitis can be spread. cancer-related deaths than any other intervention in medical history. Despite the million people would medicine at Aga Khan These prevention efforts availability of this life-saving vaccine, millions of children worldwide still miss need to be screened or University in Karachi, can help speed up our out on its protection. During World Immunization Week, celebrate the work of Dr re-screened annually, said: “The amount of elimination efforts.” Blumberg and call for improved access to the hepatitis B vaccine. and about 660,000 investment needed to people would need to reduce new hepatitis Read more. 10- 12 september Conference on Liver Disease in Africa (COLDA) 2020 Organised by Virology Education in close collaboration with local societies, COLDA 2020 aims at empowering African healthcare professionals to diagnose, prevent, treat and achieve a cure for liver diseases for the benefit of patients in Africa. Virology Education continue their goal to create a platform that provides a unique opportunity for clinicians, researchers, policymakers, industry representatives, and other healthcare professionals in the African region. Together with support from an international community of experts, attendees at the third COLDA will exchange knowledge on the latest clinical developments and updates on ongoing and new trials related to liver disease. Find out more on Virology Education’s website.

6 hep Voice MARCH/APRIL 2020 hep Voice MARCH/APRIL 2020 7 COVID-19 message from Su Wang, World Hepatitis Alliance President Dear Colleagues, “I know that our members are creative and As the COVID-19 (Coronavirus) resourceful, and your work will inspire others pandemic spreads across the globe, it is affecting all of our lives. trying to continue their essential work.”

WHA members have always worked We are planning a range of digital interventions to support your work passionately with some of the most including live broadcasts and expert blogs. We will also be developing the marginalised and underserved communities in best approach to delivering in light of potential ongoing the world and these communities will also be disproportionately affected by restrictions on events and gatherings. COVID-19. If there is anything WHA can do to help you, please let us know. Please also I know every one of our members will be working around the clock to minimize share your stories and experiences of overcoming the challenges of the current the impact of this pandemic on their communities and fight for the rights of situation. You can email us on [email protected]. their patients. I would like to personally thank you for your untiring work and commitment to Many people affected by viral hepatitis are concerned about potential the patients and communities you serve. You are a constant inspiration to me additional risks they may face if they contract COVID-19. While the advice for and I know the WHA family of members around the world will make it through hepatitis patients is being developed, we will monitor the situation and share this crisis together. all relevant information with you as soon as possible. Best wishes, I understand how challenging this time will be for your organisations. The stark reality is that many WHA members face suspending vital prevention, Su Wang testing and treatment services. We recognise that restrictions may have financial implications which will put a strain on organisations.

WHA stands with you and is working hard to adapt so we can support you, patients, and the hepatitis elimination community during this pandemic.

We will provide the latest hepatitis-related information via social media and create a digital space to share experiences and promote innovative solutions to the new challenges we all face. We will be actively amplifying the voices of patients who may feel left behind and organisations striving to meet their needs. The World Hepatitis Alliance has launched a COVID-19 resource hub for people living with viral hepatitis. The hub will be updated regularly with I know that our members are creative and resourceful, and your work will relevant information about COVID-19 and emerging news about how it inspire others trying to continue their essential work. specifically impacts people living with viral hepatitis. Visit the hub by clicking here.

8 hep Voice MARCH/APRIL 2020 hep Voice MARCH/APRIL 2020 9 New partnership to eliminate hepatitis C in London kicks off

to support anyone living with the virus through treatment.

The Routemap is being coordinated by the London Joint Working Group of Substance Use and Hepatitis C (LJWG) and led by a steering group of leaders from across different health and care sectors in London. The group has published ‘Routemap WHA executive board member for the EURO to eliminating hepatitis C in London: region, Rachel Halford, speaking at the event The Opportunity’, which details the key areas where the partnership NHS Foundation Trust, said: “In the plans to make progress. last 10 years we have seen incredible progress in hepatitis C care, driven by The Mayor of London said: “Every national bodies, local organisations Londoner deserves access to quality and individuals. The support of the L-R: Dee Cuniffe, Simon Hall, Vicky Hobart, Professor Jane Anderson, healthcare and this Routemap will – Mayor of London is a fantastic boost Professor Ashley Brown, Rachel Halford, Tony McClure for the first time – unite key partners to efforts to eliminate hepatitis C in the capital. For London to have a Hepatitis C affects over 14,000 in the fight against this damaging but On Monday 2 March, future without hepatitis C is a very Londoners, many of whom will treatable disease. charities, doctors, nurses, exciting prospect.” be living with the virus unaware. “Only by working together can we addictions specialists, peer Hepatitis C can cause liver disease succeed in eliminating hepatitis C in Cary James, Chief Executive of the and cancer unless treated (curative support workers and public London, creating a healthier city for World Hepatitis Alliance, said: “Cities tablet treatments are now available) health leads from across us all.” have an absolutely vital role to and disproportionately affects play in the fight against hepatitis London, UK, came together some of the most vulnerable and to kick off plans for a “Only by working C globally. This new Routemap marginalised communities in London. establishes London as a leader in the ‘Routemap to eliminating field and could enable London to be The Mayor of London, Sadiq Khan, together can we the first city in the world to eliminate hepatitis C in London’. This is supporting the Routemap to succeed in eliminating this cruel disease. The London set the direction for London hepatitis C elimination as part elimination effort can become an of his commitment to reducing to become the first global hepatitis C in London, example of best practice to be health inequalities in the capital. city to eliminate hepatitis C, replicated in cities around the world.” The Routemap brings a wide range creating a healthier ahead of the World Health of health professionals, local city for us all.” Rachel Halford, Chief Executive of The Organization’s target of government and charities together Hepatitis C Trust, said: “The people from across the city to join up and 2030. Dr Emily Finch, Co-Chair of the LJWG who hepatitis C primarily affects, improve initiatives to find and treat and Consultant Addiction Psychiatrist including people who inject drugs, anyone at risk of hepatitis C, and at the South London and Maudsley (continued on next page)

10 hep Voice MARCH/APRIL 2020 hep Voice MARCH/APRIL 2020 11 (continued from previous page) Carrying out the project involves people in prison, people experiencing vulnerable communities. engaging with a large group of homelessness and migrants, by people from within the same nature of their situation often sit “Excellent progress is now being Inspiration from communities. This is to ensure outside the healthcare system. made in the prevention, diagnosis, outreach to the families and relatives Outreach services, peer workers treatment and control of these around the world of the HRG members and to create and cross-organisation working infections, reflecting the hard work greater sensitivity and a supportive are therefore essential if we are to of local communities, clinical teams, ecosystem. engage people living with hepatitis the voluntary sector, local authorities Through the Find the Missing C. We now have a phenomenal and the NHS. However, if we are Millions campaign, we are The strategy involves educating opportunity to eliminate hepatitis C to end their transmission in the highlighting best practice and people from HRGs with information in London and across the UK, as long next decade, we need to do things innovations in screening and testing on hepatitis infections, as well as as we work together and cement a differently and at scale. This means so that other organisations can providing testing facilities for timely system that works for patients.” working in innovative partnerships, learn and develop their national diagnosis of hepatitis B and C, as strengthening our outreach and activities. This month, we are well as immunization and referral for Professor Kevin Fenton, Director of testing programmes, and maximising treatment in case of infection. It is highlighting the efforts of United Public Health, London Borough of opportunities for collaboration and required that those who test positive Southwark and Co-Chair of Fast- integration. Way Mumbai in India should be empowered with useful Track Cities London, said: “HIV and information about the virus and the hepatitis C remain major public “There is much to learn from our past By Anil Parmar - Director, United Way treatment available. Further, those health concerns in London, with both successes in controlling both HIV and Mumbai who test positive need to be followed infections having a persistent and hepatitis C, and even more to gain by up with to ensure they complete the As India has one-fifth of the disproportionate effect on working together moving forward.” full course of prescribed treatment. world’s population, it holds a large some of the city’s most percentage of the world’s hepatitis The project team executes a two- B virus carriers. It is estimated that pronged strategy to identify and India has around 40 million hepatitis mobilise HRGs in the targeted B carriers and three to nine million geography. They start by people have active hepatitis C virus. collaborating with non-government organisations (NGOs) and community The programme, SEHAT (Health in based organisations (CBOs) already Hindi), aims at targeted medical working with HRG community interventions with high-risk groups members in project target areas. (HRGs) or those ‘very vulnerable’ for This way the project team leverages hepatitis B and hepatitis C infections, existing infrastructure and engages such as people who inject drugs other organisations to facilitate (PWID), men who have sex with men project intervention with the HRGs. (MSM), sexual minorities (LGBT+), female sex workers (FSW), single The projects team also identifies and male migrants, and truck drivers in screens people who are at high risk of the communities. infection at community healthcare

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12 hep Voice MARCH/APRIL 2020 hep Voice MARCH/APRIL 2020 13 Inspiration from around the world

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outlets such as sexually ●● Our project team accompanies Social and peer support transmitted infection (STI) patients to hospital visits and clinics run by the government assists them with any paperwork ●● The project team is trained to train of India. For this, the (as most of the community and co-ordinate community health project team consults and members from target groups volunteers from the Municipal officially partners with the have low levels of education), and Corporation, community volunteers government authorities. This provides psychological support. This from NGOs and CBOs operating is done by reaching out to helps ensure they are registered in the project area, to promote the relevant government properly for treatment, and ensures awareness. officials and consulting them better treatment compliance. ●● We involve local youth groups, on high-risk populations ●● We also provide patient counselling women in “Self Help Groups” and under their jurisdiction. as psychological support is an other CBOs to transfer information A primary assessment of important factor in managing and solicit support for the the communities with such hepatitis B and C patients. awareness campaign. populations is carried out by Identification of people with hepatitis community health volunteers. B or C:

Community health volunteers help ●● We screen people from HRGs in mobilising the HRGs for testing during outreach activities. and vaccination camps. Such a partnership enables infrastructure Vaccination for people who test and human resources to be leveraged negative for hepatitis B to mobilise community members for these interventions. ●● We ensure HRG community members who test negative for The following interventions hepatitis B receive three doses of the hepatitis B vaccine. are undertaken as part of this strategy: Medical management of people who test positive for hepatitis Focused outreach and education: ●● We refer community members who ●● We organise community-based test positive for viral hepatitis to activities for one-to-one health the Public Hospital -Lokmanya enquiries, preventive education Tilak Municipal General Hospital sessions, home visits and door-to- (LTMGH) -Sion Hospital where Click here to read the full door interactions on key aspects free treatment for the disease is related to hepatitis B and C among available for community members case study, including top HRGs. as part of the government’s efforts tips and lessons learned, on to eliminate viral hepatitis. the Find the Missing Milions online advocacy resource

14 hep Voice MARCH/APRIL 2020 hep Voice MARCH/APRIL 2020 15 Budi Lukmanto Foundation, Indonesia The Budi Lukmanto Foundation is a non-profit and volunteer-led social The World Hepatitis Alliance foundation which aims to combat the spread of hepatitis B through immunisation and awareness. They focus on vaccinating children aged five to 15, especially welcomed five new members in those from families that would be unable to afford the cost of hepatitis treatment. The foundation conducts mass screening and immunisation activities. They March, strengthening our alliance provide advice to children living with hepatitis B to help them live healthier lives and manage the progression of the virus. They also work to raise awareness of and bringing our global membership hepatitis B among the general population, and provide information and support to adults living with hepatitis B. Find out more on their website, and follow them on to 299 organisations in 95 countries. Facebook and Instagram.

National Hepatitis Association, The Gambia (NAHA), the Gambia KnowHep Foundation, Sierra Leone NAHA was founded in 2016 by a group of medical professionals in partnership with Sierra Leone KnowHep Foundation was founded in 2019 by a pharmacist who hepatitis B patients and their families. NAHA organise community screening and saw the need for a community-based organisation to help tackle the rising hepatitis B sensitisation activities, and promote their work on local television and number of cases of viral hepatitis in Sierra Leone. The organisation’s vision radio stations. They train members of the community and health workers on how is to eliminate viral hepatitis in Sierra Leone through strategic partnerships to test for hepatitis B. All of their members attend capacity-building workshops with relevant stakeholders, by mobilising resources and promoting NOhep in order to improve their knowledge of hepatitis. NAHA also provide counselling through the media and community outreach, and conducting advocacy and services for the families of those living with hepatitis B. They mark World Hepatitis vaccination campaigns. Find out more on their website, and follow Day each year, working in partnership with the Gambian government and Ministry them on Facebook. of Health and other stakeholders. Find out more on their website and follow them on Facebook and Twitter.

Save Liver Association of Patients (SLAP), North Macedonia Reach 52, Cambodia Reach52 radically transforms service delivery models for primary care services in North Macedonia-based SLAP aim to maintain and improve the mental rural and remote areas of low- and middle-income countries using a digital public and physical health of those living with liver disease. They support patients health approach. They aim to improve access to affordable healthcare services in socially and professionally, and support and protect patients’ families from communities where access is low to non-existent. They are currently working on a viral hepatitis by developing preventive programs. They conduct awareness- project in the Philippines which will provide healthcare worker training, as well as raising activities, provide testing, organise educational lectures, work with community screening, diagnostic, and treatment services for hepatitis B. The project doctors and negotiate with the government for improved access to new is targeted at community members on a low income who currently lack access to hepatitis C treatments, and work to eliminate stigma and discrimination hepatitis B services due to financial or geographic barriers. Find out more surrounding viral hepatitis. Follow them on Facebook and Twitter. on their website and follow them on Facebook and Twitter.

16 hep Voice MARCH/APRIL 2020 hep Voice MARCH/APRIL 2020 17 APASL 2020 - a success Sollano-Lesmana Great Mentor hepatitis elimination efforts can Award at the event, though he was be accelarated. Speakers included not able to attend the conference. Professor Rosmawati Mohamed from the University of Malaya WHA also convened a lively in Kuala Lumpur, and Dr Khin meeting of NOhep Medical Pyone Kyi from WHA member, the Visionaries, during which the Myanmar Liver Foundation. visionaries examined how

Attendees at the NOhep Medical Visionaries meeting held at APASL Despite reduced attendance YKSH’s managing director, due to the global COVID-19 Caroline Thomas, presented a poster outlining the organisation’s (coronavirus) outbreak, the microelimination project, which has Asia Pacific Association focussed on eliminating hepatitis C for the Study of the Liver in seven prisons in the Indonesian (APASL)’s annual conference capital, Jakarta. was successfully held in Bali Through this project, YKSH at the beginning of March. concluded that breaking down larger elimination goals into World Hepatitis Alliance (WHA) smaller and more achievable CEO, Cary James, and Jessica goals makes elimination less Hicks, WHA Head of Programmes, daunting and complex. They hope attended the event, which their project will build national was packed with fascinating momentum towards eliminating presentations and insights from hepatitis C by producing small hepatologists and experts from victories that inspire more around the world. ambitious efforts. A number of WHA members WHA executive board member for from the Asia-Pacific region also the Eastern Mediterranean region, attended, including representatives Professor Gamal Shiha, was also from Indonesia-based Yayasan recognised with the prestigious Caroline Thomas from Yayasan Koalisi Satu Hati presented a poster Koalisi Satu Hati (YKSH).

18 hep Voice MARCH/APRIL 2020 hep Voice MARCH/APRIL 2020 19 Wall of Stories: Arman Together, our stories can Armenia, and I didn’t want to worry where you are not change the way the world them. I really needed someone near afraid of disclosing me, to give me strength, to tell me your status, not sees viral hepatitis. that everything would be fine, but afraid you will there was no one. be hired or fired Each month we share the story of because of it. someone whose life has been affected by viral hepatitis. This month, we hear “I was dying, because I often visit Abovyan from Arman from Armenia, who was I never got tested, TB dispensary, diagnosed with hepatitis C, HIV and where I was lying tuberculosis at the same time. never even thought close to death, and try to give patients I was a successful sportsman in about it.” the support I didn’t Ukraine when I was younger. have. Luckily, I began to recover. I left need to take pills for the rest of their When I stopped practising sport, I got I share with them their pain, their the hospital after six months lives. But I have been taking my pills acquainted with some people and happiness. Patients trust me as I am and continued treatment at an conscientiously for eight years and started to use drugs and steal things. also living with HIV. ambulatory. thanks to that, I now have a new I injected drugs for many years. I have family. I have a healthy wife, and a If I was smart and had been tested We see stigmatising attitudes towards four convictions. health baby girl. earlier, I would never have been our patients, even among medical professionals. We have worked hard I returned to Armenia in 2009. After a in that critical condition. Today I Life goes on. I am living a full life. I over many years and have managed few months I became very ill and was urge others to get tested; many don’t differentiate myself from other to ensure our patients aren’t rejected diagnosed with tuberculosis (TB), HIV, complications can be avoided through people. I don’t pose a danger to from hospitals, but the attitude is the and hepatitis C which had progressed early diagnosis, especially given that society. same. to cirrhosis. I was hospitalised in a TB treatment for HIV, tuberculosis and dispensary. hepatitis C in the Republic of Armenia is now completely free. Their attitudes only shift when we are “Get tested. Take with our patients. Sometimes, the only I was in a critical condition, dying, option is for us to be near our patients treatment if you need because I never got tested, never Thank God, I have now overcome all the time, not even to go home, to even thought about it. But in reality I hepatitis C and tuberculosis but I am it and live a full life!” make sure the patients are OK. have three diseases. And by “helping” still living with HIV. each other they made me critically ill. Don’t be scared! Get tested. Take Today, I work with Positive People I meet patients who are newly diagnosed, and it is very strange for treatment if you need it and Doctors were hopeless. My relatives Armenian Network, a non- them when they hear that they will live a full life. were told that I had only a few governmental organization, to days to live. My wife left me, taking support people living with TB, my child. My parents were not in hepatitis and HIV. This is a place See more stories and submit your own at www.worldhepatitisalliance.org/wall-stories

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