Bumper end of year edition

November/December 2017: Vol.21

hepA monthlyVoice magazine from the World Hepatitis Alliance World Hepatitis Summit What we learnt

Ten years of the World Hepatitis Alliance Charles Gore shares his stand-out moments What’s next for WHA? A note from the President of the World Hepatitis Alliance Contents

As this will be the last edition of hepVoice during This month my time as WHA President, I thought it might be appropriate for me to share some final thoughts World Hepatitis Summit: key in this month’s foreword. As the organisation 4 embarks on a new era, it also celebrates ten take-aways years of existence. And in those years together Ten years of the World we have achieved so much. In this edition I share Hepatitis Alliance 10 some of my most memorable moments from the past decade. One of these is, of course, the What’s next for the World World Hepatitis Summit. The event has truly set Hepatitis Alliance 14 the stage for what needs to happen next in our Wall of Stories fight to eliminate hepatitis. Personally, it was also an opportunity to say goodbye to many 16 of you personally and to thank you for all your WHA member activities work that has got us where we are today. While 17 I may be stepping down from the global stage, I will continue the be fighting for our cause at a national level with The Trust in the UK so on that note I wish us all every success in driving our efforts forward and making the elimination of viral hepatitis the reality we are all striving for. Stay connected

www.worldhepatitisalliance.org Charles Gore WHA Founder and President (2007-2017) [email protected]

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2 hep Voice November/December 2017 hep Voice November/December 2017 3 Where in the world

The World Hepatitis Summit 2017 debated and formulated solutions was undeniably a huge success. to reach this goal by 2030. To all Over 750 delegates from more that attended, thank you for joining than 100 countries came together us for this ground-breaking event. in São Paulo, Brazil with one aim We hope you found the Summit in mind: setting the stage for the informative and inspiring. If you elimination of viral hepatitis. Over were unable to attend, here are three days, policy makers, patient some of the key messages from the advocates, global health experts event as well as links to resources and civil society actors discussed, so you don’t miss out.

Champion countries are leading the way

Showing strong commitment from which he reiterated his support governments across the globe, and commitment to lead the fight 11 ministerial representatives to eliminate viral hepatitis. Six took to the stage to share their governments (Brazil, Bangladesh, successes in implementing Egypt, Georgia, Mongolia and the initiatives to reach elimination. Gambia) also pledged their support These included ministers and to spearhead the NOhep Visionaries representatives from Brazil, China, Programme in their respective Egypt, Georgia, Lesotho, Malta, regions. Governments that have Mongolia, Pakistan, Sudan, Syria, shown commitment to the cause Uganda plus a video from Australia. and are already making headway Adding to the prestige, Bollywood towards elimination are beacons of star and WHO SEARO Goodwill best practice for countries that still Ambassador Amitabh Bachchan have much catching up to do. delivered a video message, in

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Efforts must reach the furthest behind first

From Indigenous populations equity framework to imagined to children and people who country scenarios. Fifteen civil use drugs to prisoners, often society organisations including the overlooked groups featured Médecins du Monde, International heavily in discussions at the Drug Policy Consortium, Treatment Summit. Speakers throughout Action Group, Coalition Plus and the event stressed the need for World Hepatitis Alliance launched a Putting people living with viral hepatitis at the heart harm reduction policies while declaration calling political leaders of the response pays off presentations and side meetings to remove barriers that prevent looked at issues including service people using drugs from accessing WHA President Charles Gore hepatitis response in countries delivery for priority populations, services, including criminalisation closed the event by saying: “Seven where civil society have little hepatitis in children and the of drug offences and to adopt a years ago, I dreamt of a forum or no involvement. During the burden of hepatitis D. A unique approach. Evidently, where patients and policy makers event itself, civil society and WHA interactive workshop on delivering one of the resounding messages of could come together. Thank you members featured heavily on the equitable services encouraged WHS2017 was not only to leave no- for making my dream a reality.” programme (turn to page 17 to find delegates to work together and one behind but ensure that efforts The fact that the World Hepatitis out more) while the Pre-Summit think differently by applying an reach the furthest behind first. Summit is the only event that brings Member Conference that took together both decision makers and place directly ahead of the Summit people with lived experience makes was an opportunity for patient it truly unique. The importance advocates to share learnings, of this was reiterated in almost network and build capacity in every aspect of the event. Initial order to strengthen the global findings from WHO’s Country patient voice. Finally, as the event Profiles revealed that there is concluded with the announcement strong correlation between the of the São Paulo Declaration countries who involve civil society from high level government in their hepatitis response and representatives, civil society and those with a national plan and patient advocates responded by dedicated funding. Supporting launching the São Paulo Community this, our new Holding Government Declaration on Viral Hepatitis, Accountable Civil Society Global demanding involvement of people Report, launched at the Summit, living with the in the showed significant levels of national response. dissatisfaction with governments’

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Financing doesn’t have to be a barrier

With the question of how we pay as the soft launch of ENDhep2030, for the hepatitis response never a dedicated fund to eliminating far from anyone’s lips, the sessions hepatitis. To support discussions on financing were some of the around financing, we launched our most anticipated. While only 35% National Viral Hepatitis Programme of national plans currently have Financing Strategy Template that funding strategies attached to aims to guide governments on how them, the resounding message was to adopt a strategic approach to that financing needn’t be a barrier costing and financing programmes. Rediscover the World Hepatitis Summit 2017 with all our to elimination. WHO estimates that Across the sessions, presenters resources financing the hepatitis response will reiterated that integration into cost approximately $6 billion per wider health systems will be key to • Presentations • Photo gallery year for all low-and middle-income achieving elimination and crucially, • Abstract posters • Daily reviews countries; a figure that was starkly as Homie Razavi, CDA Foundation, • Videos contrasted with the $3 billion spent reminded us, “countries will spend on the 2010 South Africa World Cup less eliminating hepatitis C than Keep an eye out for the full and the $4 billion India spent on the doing nothing at all”. World Hepatitis Summit 2017 Commonwealth Games. Coinciding with the event was the publication report – to be published early of this article in the Lancet stressing 2018. the need for donors to enter the space while an evening event acted

8 hep Voice November/December 2017 hep Voice November/December 2017 9 World Hepatitis Alliance Activities 10 years of

This month we celebrate ten years This month also marks the end of the World Hepatitis Alliance of Charles Gore’s term as WHA Advocating for the first (WHA) and in those ten years President. In this role he has resolution on viral hepatitis “Very quickly we learnt previously unimaginable progress driven efforts across the globe that there was much more has been made. From a little- to put hepatitis on the agenda that needed to happen. known illness almost completely and his leadership has helped the Without an official mandate, ignored by policymakers to a global hepatitis community realise great governments weren’t commitment to eliminate viral achievements. interested in supporting hepatitis from every country in the . So world, the past decade has proven To commemorate this momentous WHA was forced to move that a strong patient voice really occasion, Charles reflects on some into advocacy. We mobilised patient groups from around can change the world. of his stand-out moments as WHA the world and started President. working with governments to develop the first resolution on viral hepatitis.” WHA established in 2007 “It all started with awareness. Exasperated by the fact that viral hepatitis was such a little- known disease, we assembled patient advocates from across the globe and together agreed to establish a World Hepatitis Day. We then had to create the World Hepatitis Alliance to run it. That was all we initially set out to do.”

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World Hepatitis Summit 2017 WHO Global Hepatitis Programme established “By concluding my time as WHA President with the “As a result of the first World second World Hepatitis Health Assembly resolution, Summit in São Paulo, Brazil, WHO set up the Global Hepatitis I really am going out on a Programme in 2011. When I learnt high note. Its success proved that this would form part of the that it is a truly unique and Department of HIV, I initially important event and it has had concerns. Viral hepatitis set the stage for what we had been overshadowed by HIV/ need to do now: to turn AIDS for so long. But I was proved elimination from a concept wrong. In fact, by being part of into tangible action on the this department, hepatitis got ground.” more resources than it otherwise would have received and helped us develop an extraordinarily productive relationship with WHO.”

194 governments committing to elimination “28 May 2016 was truly a landmark moment for me and for the community. When WHO Member States adopted the elimination strategy, I couldn’t help thinking back to 2010 when I first saw, just as it was getting ready for its unveiling, the statue outside WHO HQ that commemorates 30 years since the eradication of smallpox. At the time, it felt like we were so far from even considering elimination, let alone eradication, for viral hepatitis. It just shows that with a strong and united patient voice and sheer, gutsy Charles has also written a farewell determination, we can achieve miracles.” statement that can be read on the WHA website and recorded a special video message for all WHA members.

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Strategic plan 2018-2020 Harnessing the power of people living with viral hepatitis We have come a long way but living with viral hepatitis to as we celebrate our ten year achieve its elimination”. With 325 To coincide with the launch of Watch the video here. (Français ici) anniversary, we cannot allow million people affected by viral our 2018-2020 Strategic Plan, we (Español aqui) ourselves to become complacent. hepatitis, we have potential to have developed a special video A global strategy and targets build a powerful army of advocates that celebrates WHA’s trailblazing alone are not enough to turn but of those, 290 million people journey so far and sets out our an aspiration into reality. As an are completely unaware of their vision for the future. organisation that represents the illness. Without finding these 325 million people living with viral “Missing Millions” that are yet to hepatitis, we know that elimination be diagnosed and linking them to will not be achieved without care, all other efforts will only have WHA Members Webinar: 1 February 2018 putting the people affected by marginal success. Our first step is viral hepatitis at the heart of the therefore to find them. We are inviting all WHA members programmes for 2018. This is an solution. the unique opportunity to learn important opportunity to hear Find out how to plan to do this in more about the newly launched directly from WHA and get involved We therefore embark on 2018 our newly launched 2018-2020 strategic plan and find out how in our activities. Registerhere . with a renewed mission. A mission Strategic Plan. you can be part of our plans and to “harness the power of people

14 hep Voice November/December 2017 hep Voice November/December 2017 15 World Hepatitis Alliance Activities World Hepatitis Alliance member activities Wall of Stories Snapshots WHA Member updates Together our stories can change the way the world sees viral hepatitis. The stories of those living with or impacted by viral hepatitis can help educate and raise awareness, provide support and inspiration, tackle from around the world stigma and discrimination, and highlight the true impact of this global This month we look at how WHA members made the most of the World disease. Share your story here. Hepatitis Summit 2017:

With people with real life experiences of viral hepatitis making up a Members at the heart of the event large part of the delegation at the World Hepatitis Summit, we took the opportunity to film some of their stories. True to our aim of putting the people living with viral hepatitis at the centre of discussions, many WHA members presented in sessions at the Summit: Carlos Lisa, Australia Varaldo of Grupo Otimismo shared his experiences of living with hepatitis C in the opening session; Dr. Mohammad Ali, National Liver Foundation of Bangladesh, provided insights into running successful awareness campaigns in Bangladesh; Rajkumar Nalinikanta, CoNE Manipur, highlighted the role of civil society in accessing generics; Emalie Huriaux of Project Inform presented on the innovative way End Hep C SF have reached marginalised populations; Hepatitis Victoria’s Lien Tran showed how the Little HepB Hero project used child ambassadors to reach new audiences.

“It was a long two years of worrying “ to wait for the test to see if she was hep C positive.” Hear Lisa’s story here ”

16 hep Voice November/December 2017 hep Voice November/December 2017 17 World Hepatitis Alliance member activities WHA Member updates from around the world

Members advocating together Members’ take on WHS2017

Exasperated by Russia’s lack of national strategy, Aleksey Lakhov of United And finally, the feedback from WHA members speaks for itself. We have been Against Hepatitis used the Summit as an opportunity to record video overwhelmed by the number of blogs, articles and even podcasts authored by messages from activists from around the world. Directing their pleas at WHA members. The response highlights what a truly ground-breaking event Russian Prime Minister Dmitry Medvedev, delegates called for Russia to the Summit is and the huge benefit it has to our community. Here is just a develop and implement a national hepatitis strategy immediately. selection of views on WHS2017: • Teresa Casanovas, ASSCAT, Spain • Melisa Dickie, CATIE, Canada • Melanie Eagle, Hepatitis Victoria, Australia • Fundación HCV Sin Fronteras, Argentina • Tove Frisch, Riksforeningen Hepatit C (RHC), Sweden • Carlos Varaldo, Grupo Otimismo, Brazil

We love to highlight the great work of our members, so get in touch with updates on your national activities.

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www.worldhepatitisalliance.org