JULY 2019: Vol.38 hep Voice

World Hepatitis Day: message from the President

WHA holds first face-to-face workshop for Find the Missing Millions In-country Advocacy Programme

hepinion: We must invest in viral hepatitis

Meet WHA's newest members note from our CEO contents Stay connected As with many of you, the WHA team are busy www.worldhepatitisalliance.org preparing for . It’s been Regulars wonderful to see how many people are planning [email protected] activities this year and I’m sure this year will be 4 hep Headlines one to remember. There’s still time to get involved www.facebook.com/worldhepalliance and tell us what you are doing at www.worldhepatitisday.org. 5 Dates for the diary @Hep_Alliance This month WHA welcomed the five members working with us on the Find the Missing Millions Features @worldhepatitisalliance In-country Advocacy Programme to London. We were delighted to be joined by the members and leading stakeholders at the meeting, which 6 World Hepatitis Day: message from the President was a real success. Each of the five members is developing exciting projects that will accelerate 8 Meet WHA's new members hepatitis elimination efforts in their communities. We will let you know more about their plans 10 WHA holds first face-to-face workshop for Find the Missing in the coming months. Work has also been Millions In-country Advocacy Programme continuing in India and Cambodia, where we are working with partners and governments to undertake the investment case for viral hepatitis 12 hepinion: We must invest in viral hepatitis elimination. WHA Head of Programmes, Jessica Hicks, has written a hepinion piece on the need 14 World Hepatitis Day masterclass: holding an advocacy walk for investment in viral hepatitis which you can read on page 12. 16 World Hepatitis Day masterclass: creating an impactful social media campaign Don’t miss I was delighted to have the opportunity to meet out - receive more of our members this month at the 5th 18 World Hepatitis Day masterclass: organising a press conference hepVoice annual HIV/Viral Hepatitis Co- meeting straight to held ahead of IAS in Mexico. I’m always inspired 20 Wall of Stories: Philip Baldwin your inbox! by the WHA members that I meet and the role civil society plays in accelerating action on viral hepatitis. We are looking to showcase more of that work in the coming months so please get in touch if you would like your work featured on our Want to contribute? platforms. We welcome your contributions so please get in touch at [email protected] to have your news and I would like to wish you all the very best for World stories included in future issues and feel free to share this Hepatitis Day and I hope you can join us to Find magazine with your network the Missing Millions. I am looking forward to seeing the results of all your hard work in due course. Cary James 2 hep Voice JULY 2019 hep Voice JULY 2019 3 Hep Headlines

and C. The WHO scorecard and effort on the released Ghosh added, "We find that revealed that only three of inmates' end to come out every time we add another the 47 countries are on track of this. And if we don’t step, clients fall off. But if you headlines to eliminate viral hepatitis. provide them with enough add a peer navigator, they support, they’re not going make it to each and every hep Read more here. to be able to,” said Monty one of those steps at a high, Hepatitis is regularly Malaysians to understand More than four million people Ghosh, a University of Alberta high rate." the risk factors of hepatitis in Uganda have been screened Program in Canada helps professor. making the news C, so that we can tackle the to date. Since 2015, Uganda recently released prisoners The program intends to thanks to the efforts health burden in this country has invested $3 million living with Through this program, reach 120 clients in the first of WHA members. and prevent new cases from annually on a free hepatitis people who have recently year and have 80% of them occurring. B screening programme and A pilot program with the aim been released from prison complete a full course of Here are a few conducted a community to ensure recently released can connect with “peer treatment. highlights. “This initiative is the biggest mobilisation and sensitisation inmates with a history navigators”. The navigators national screening event drive on the . of injection drug use are have lived through similar Read more here. Free nationwide screening ever attempted by our screened and treated for experiences and they campaign in Malaysia government and will play a “More than 30% of the hepatitis C has been launched accompany the former significant role in our hepatitis population who are infected in Calgary, Canada. inmates to medical, legal and In the biggest national C elimination efforts by 2030. with are now social services appointments. screening campaign ever This campaign will also help aware of their status and can “It takes a lot of willpower attempted in the country, to support and accelerate the have access to free medical Malaysia aims to test and treat scale-up activities of hepatitis care, making Uganda the first its population for hepatitis C, C screening in-country,” he country in Africa to surpass free of charge. added. the 2020 target of 20%,” notes the WHO scorecard. Participating in a hepatitis- The campaign, which is part Read more here and follow Dates for the diary related activity or have an of preparations for World the campaign on Twitter by Along with Uganda, Rwanda Upcoming events and activities taking place event planned? Email us or Hepatitis Day on 28 July, searching #MYmissingmillions have also been applauded includes over 100 specifically for their efforts to eliminate contact us on social media. designed screening sites Uganda becomes first hepatitis. 5 - 6 August in hospitals and primary African country to reach Australasian Viral Hepatitis Elimination Conference (AVHEC) healthcare centres across WHO’s 2020 targets of “Only Rwanda (hepatitis C) The Australasian Viral Hepatitis Elimination Conference brings together health professionals, policy Malaysia. It is estimated that tackling hepatitis B and Uganda (hepatitis B) makers, researchers, community organisations and people living with viral hepatitis committed to there are over 400,000 people have started free nationwide eliminating hepatitis B and C as a major threat. The 2019 conference will be held at living with hepatitis C in the A new scorecard tracking the screening as a decentralised Novotel Sydney Brighton Beach, Sydney, Australia, and registration closes 21 July. Find out morehere . country. progress against hepatitis B service, and are on track to in Africa revealed Uganda is reach the 2020 target for 6 - 8 September Along with treating people the first country to reach and screening and community Conference on Liver Disease in Africa (COLDA) with hepatitis C, the campaign surpass the World Health awareness,” says WHO. has additional targets such COLDA is a platform that will bring together experts from around the world involved in liver disease Organisation’s (WHO) 2020 in an interactive conference setting. It is aimed at empowering African healthcare providers for the as preventing new cases of Every year, more than 200,000 target of ensuring access, benefit of their patients. It will target healthcare professionals, researchers, public health experts and the virus. Health Director- people in Africa die from treatment and awareness policy makers involved in the diagnosis, management and prevention of liver . The conference General Datuk Dr Noor Hisham raising of the viral infection. complications of hepatitis B will be held in Cairo, Egypt. Find out more here. Abdullah said, “We also want

4 hep Voice JULY 2019 hep Voice 5 World Hepatitis Day Message From The President

Ahead of World Hepatitis by 2030. Since then, 124 countries Day, World Hepatitis "Millions of lives are have developed, or are developing, Alliance President Michael still at risk simply elimination strategies. Yet many of these strategies do not have Ninburg sends this personal because people are dedicated funding. Achieving hepatitis message to members and elimination by 2030 will require a supporters everywhere. unaware that they major increase in funding for hepatitis are living with viral prevention, testing and treatment World Hepatitis Day is the one services, as well as including hepatitis day when the world unites to hepatitis." services in Universal Health Coverage celebrate the progress made efforts. towards the elimination of viral Millions of lives are still at risk simply hepatitis. Progress that has only been because people are unaware that they We have the tools to eliminate these possible thanks to you, the community are living with viral hepatitis. This year diseases and we are fighting for the of people affected by viral hepatitis. This on World Hepatitis Day, the World resources. I believe that together, is the day to combine our voices to raise Hepatitis Alliance is encouraging you we will achieve the elimination of awareness for the 325 million people to help Find the Missing Millions - viral hepatitis. And it is my sincere "We have the tools living with hepatitis B and hepatitis C. those people living with viral hepatitis hope that World Hepatitis Day who remain undiagnosed. To do this serves as a catalyst for action. to eliminate these World Hepatitis Day also gives us time we need to raise awareness and to diseases and we to pause and reflect on the countless encourage people to get tested. World Whatever you have planned to lives lost to viral hepatitis. 1.4 million Hepatitis Day provides the platform to recognize this day, your actions will are fighting for the people die each year because of these spread the message that viral hepatitis help to save lives. That cannot be diseases, despite there being a vaccine is a global health crisis, but one that commended highly enough. resources." and effective treatment for hepatitis B can be overcome. With a concerted Thank you for your commitment and and a cure for hepatitis C. It is important multi-stakeholder effort that includes we wish you a very successful World to look beyond that hard statistic and engagement with those affected by viral Hepatitis Day! remember that each person was an hepatitis we can ensure that no one is individual - a friend, a family member, a left behind and achieve elimination. Michael Ninburg colleague, a loved one. Every single one of those deaths was preventable. In 2016, every country in the world President committed to eliminating viral hepatitis

6 hep Voice JULY 2019 hep Voice JULY 2019 7 Keelung Association for Liver Disease Prevention MEET WHA'S NEW MEMBERS and Control - Chinese Taipei (Taiwan) Keelung Association for Liver Disease Prevention and Control is WHA has recently welcomed six new members based in Chinese Taipei (Taiwan). Their vision is to contribute to the to the organisation which now represents 281 elimination of viral hepatitis through raising awareness of the disease, promoting treatment, establishing support groups, holding screenings, members across 91 countries. Meet them here. cooperating with researchers, and promoting an emergency rescue plan for liver disease. They have recently been conducting screening Taiwan Hepatitis Information & Care Association activities in fishing villages, ensuring to transfer those living with chronic hepatitis to hospitals. Follow them on Facebook. (THICA) - Chinese Taipei (Taiwan) Taiwan Hepatitis Information and Care Association (THICA) was formed by 51 viral hepatitis patients who decided to establish a patient association after cross-sharing knowledge on social media platforms for The Liver Foundation - Pakistan years. Their mission is to share the latest information on viral hepatitis, As part of the 130-year-old international movement “United Way”, promote awareness, prevention and treatment of the disease, and link The Liver Foundation is based in Pakistan and part of the patients to appropriate medical care. THICA has almost 10,000 followers Al-Rehman International Trust, which has provided free community on Facebook and a strong Twitter following and presence. Follow them services and medical treatment to those in need since 2003. on Facebook and Twitter. The Liver Foundation has a specialised clinic to treat all liver diseases, in particular hepatitis B, C, D and E. In cooperation with major hospitals in Karachi, they provide patients with access to Cristal Healthline Foundation - Ghana medicines, qualified doctors, and laboratory test facilities. Moving Cristal Healthline Foundation’s vision is to tackle and rid Ghana of forward, the organisation aims to fund Medical Mobile Units to test viral hepatitis through awareness raising and immunisation practices. and treat people in the poorest areas around Karachi. They also provide support for those affected by the disease. They have conducted screening and activities on World Hepatitis Day since 2016, focusing on rural areas of Ghana. Follow them on Facebook. National Federation of Liver Patients and Transplants FNETH - Spain Spanish-based National Federation of Liver Patients and Kings Health and Development Initiative Transplants (FNETH) works to raise awareness amongst the public about the importance of organ donation and the early detection - Nigeria and prevention of all liver diseases. They carry out campaigns to King’s Health and Development Initiative’s mission is to reduce the publicise all aspects of liver diseases and the different ways of burden of viral hepatitis in Nigeria through advocacy, community treating patients. They aim to become the reference organisation sensitisation, patient support, and capacity building of health workers. in Spain for liver transplant patients and their families. Their activities include training and mentoring healthcare professionals Follow them on Facebook and Twitter. and supporting communities to help them implement and sustain health development programmes.

8 hep Voice JULY 2019 hep Voice JULY 2019 9 WHA Holds First Face-to-Face Workshop for Find the Missing Millions in-Country Advocacy Programme “This is a great opportunity”, adds Anahit India. Working together we will eliminate viral Harutyunyan, Positive People Armenian hepatitis”. Network. “As a small country, in Armenia we are always trying to show the global community “Being a part of this programme and having the that we are doing our best. We can fight and chance to learn from others means a lot to our eliminate hepatitis C together.” organisation. I am excited for the next steps,” added Shelly-Anne Myrie, Caribbean Hepatitis C When looking into the barriers to diagnosis, it Alliance. became apparent that although the participants come from different corners of the world, they WHA looks forward to continuing to work with face many of the same challenges. However, the five programme participants as they further despite these similarities, the meeting develop and then implement their advocacy highlighted that varying country contexts and strategies. the capacity of the organisation both influence on which barrier each programme participant selected to focus on.

“From this meeting, I have learnt a lot and shared our work. It will help modify and shape our Find the Missing Millions campaign,” says Professor Mohammad Ali, National Liver Foundation of Bangladesh. Earlier this month, participants in the World stakeholders such as Dr John Ward from the Hepatitis Alliance’s (WHA) Find the Missing Coalition for Global Hepatitis Elimination, Providing the participants with the chance Millions In-country Advocacy Programme Giten Khwairakpam from TREAT Asia amfAR, to start developing their in-country advocacy came together for the project’s first face-to- Rachel Halford from the Hepatitis C Trust, projects for the programme, and giving them face meeting in London. and Dr Naranbaatar Dashdorj from Onom the opportunity to receive feedback from Foundation brought a wealth of experience the stakeholders in the room, the meeting’s The aim of the meeting was to help the to the meeting, as well as unique insights that sessions helped build attendees’ strategic programme participants identify the barriers to helped to enhance discussions and the meeting thinking and encouraged them to use the diagnosis within their country which they felt outcomes. patient voice more effectively. they could most impact, and start to develop advocacy strategies to overcome them”, said “For me this was a golden opportunity to work “Having a coalition of different expertise is Jessica Hicks, WHA’s Head of Programmes. with experts and learn what other people are really important for us to learn from each doing elsewhere across the world. I want to other”, said Caroline Thomas, Yayasan Koalisi Participating organisations were joined by tap into these experiences to see how I can Satu Hati. “When I talk about Indonesia, it’s global experts at the meeting. This provided a contextualize them in my country to increase not just about Indonesia. We can learn from forum to share experiences, learn from their diagnosis rates and make an impact”, said other countries and experts too. For example, peers and other stakeholders and build their Charles Ampong Adjei of The Hepatitis Alliance our micro-elimination prison programme capacity across a wide range of topics. Expert of Ghana. didn’t originate with us. The idea came from

10 hep Voice JULY 2019 hep Voice JULY 2019 11 hepinionWe Must Invest In Viral Hepatitis"

funding with their theme for this year’s World programmes, and one tool which can help At WHA, we are working hard to promote the Hepatitis Day: "invest in eliminating hepatitis". guide them in this is the National Viral Hepatitis strong case for funding national viral hepatitis Through this theme, WHO aims to urge Programme Financing Strategy Template which plans – after all, as highlighted in the JHEP article, national and regional policymakers to increase WHA developed. This template explores each of 82 per cent of people with hepatitis B or hepatitis political and financial commitments for the the steps required as part of a comprehensive C currently live in countries where there is hepatitis response, to encourage national financing process and reflects the work we are either no national plan, or no dedicated funding governments to ensure that national hepatitis doing in countries to support governments to identified to implement a plan. Without investing testing and treatment plans include dedicated cost, create the investment case and explore in hepatitis, millions of lives will continue to be funding and investment, and to seek optimal financing options for their viral hepatitis plans. lost and countries will continue to face the huge By Jessica Hicks, Head of Programmes at prices for medicines and diagnostics. Working with governments, local civil society financial burden of disease management costs. World Hepatitis Alliance organisations, and external stakeholders, we have This is not good enough. While the World Hepatitis Alliance (WHA) completed or are working on costing national echoes this call to policymakers to address the viral elimination plans in four countries across SPOTLIGHT ON: HEPATITIS AND Earlier this year JHEP released an article funding crisis, it is important to note that we, Africa, Asia, and South America. entitled Global‘ progress on the elimination of as civil society organisations, can play a pivotal UNIVERSAL HEALTH COVERAGE (UHC) viral hepatitis as a major public health threat: role in securing adequate investment for Each scenario explored in our costing and An analysis of WHO Member State responses hepatitis elimination programmes. The "global investment work in Nigeria (conservative, WHO’s recent costing analysis reveals that 2017’. Encouragingly, the article concludes that progress" article reveals that not only are moderate or aggressive scale-up of elimination additional funding of US$6 billion per year countries are making progress with respect to countries whose governments engaged with activities) found projected cost savings compared will be needed in low- and middle-income national hepatitis planning. However, there civil society more advanced in their national to taking no action. And it’s about more than countries between 2016 and 2030 in order remains a major issue: financing. planning efforts, they are also significantly money – all scenarios also showed a dramatic to achieve hepatitis elimination targets, but more likely to have a funded plan. 52 per cent reduction in infection rates and deaths from end- only US$ 0.5 billion was invested in 2016. The World Health Organization (WHO) reports of countries whose governments have drawn stage liver disease. As this particular case study that, as of April 2019, 124 countries have on the expertise of civil society have plans demonstrates, investing in hepatitis elimination This investment would increase the global developed, or are in the process of developing, with dedicated funding, compared to just 23 would save money in the long run, and save tens health price tag by 1.5 per cent. But it will national plans and strategies. However many per cent of countries where civil society has of thousands of lives each year. of these plans lack dedicated funding, and the bring greater returns on better general not been engaged. The fact that countries health outcomes as well as future cost 2017 data analysed in JHEP’s article shows that In response to the challenges countries are facing who have involved civil society are more than savings; funding hepatitis testing and only 58 per cent of the 82 reported low- and twice as likely to have funded plans is a real in funding their elimination plans, our work goes treatment services as part of UHC efforts middle-income countries had, at the time, testament to the know-how and strength of a step beyond simply creating the investment included domestic funding in their national civil society, and we call on all countries faced case to look at the different options for funding could cut global deaths by five per cent hepatitis plans. with the challenge of how to finance their that plan. Importantly, these discussions must be and increase healthy life years by ten per plans to ensure that civil society organisations embedded within the context of Universal Health cent by 2030. These are achievements that For us to have any hope of reaching are meaningfully involved in the response. Coverage (UHC), though for those countries that cannot be ignored, and it is essential that elimination, major investment in viral hepatitis are working towards UHC, or are not able to viral hepatitis is given the same recognition programmes is required. As well as engaging with civil society, fund all the areas of their programme in this way, as HIV/AIDS, and TB in UHC governments need to take a strategic approach catalytic financing strategies may be required. WHO are seeking to address this critical gap in planning. to costing and financing their viral hepatitis

12 hep Voice JULY 2019 hep Voice JULY 2019 13 how to on World Hepatitis Day In the lead up to World Hepatitis perfect way to do this. Our plan was to have The walk was so impactful that almost all the an Advocacy Walk, engaging the people, and meatsellers/herdsmen in a nearby abattoir Day we will be sharing the immediately giving them access to screening and came to be screened. Without the walk, the experiences of the people and vaccination to sustain their enthusiasm. impact of the programme would have been organisations that use the day to less. The first step we took to organise the walk was help Find the Missing Millions. to mobilize partners and collaborators. To this To spread the Advocacy messages during end, we approached World Health Organization the walk, we gave out flyers and educational In 2018 LiveWell Initiative (LWI) (WHO) Officials, Ministry of Health Officials and leaflets, and we carried message placards Pharmaceutical companies. They all cooperated, which were nicely designed. The banners were marked WHD with an advocacy even though the fact that our walk was on WHD preceded by a giant banner which also carried walk which raised awareness of meant it coincided with their own programmes. the Find the Missing Millions message. very clear. We have adopted the ‘Screen and viral hepatitis, and resulted in many We succeeded in getting the blessing of the Vaccinate’ policy and we refer people who test I would advise other organisations wanting to Nigerian Government and endorsement of positive for further confirmatory diagnosis people being tested for the disease organise an advocacy walk for WHD to plan, WHO, and we were given approval to use a through our hepatologists and linkages to care. organise, direct and coordinate their programmes at a temporary screening centre. Government-run open field for the event. At The are offered at affordable prices carefully and not at random. There has to be a least four pharmaceutical companies partnered (up to 50 per cent discount), and the screening is strategy, it needs to be tested, and they must with us. Each collaborator had a key role to play, free. and it was a win-win collaboration for all. be pragmatic enough to understand the need to tailor such a programme towards the needs With this way of doing things the impact will be Not as many people as we had expected joined of the people. There is a need to carry the measurable, sustainable and the programme is the walk. However we discovered that this was people along, as they are the key stakeholders. scalable in all economies. “ because people were more concerned about Community Leaders should be approached prior informing others as quickly as possible about to the programme date so that they will also ” the need to get tested, than joining the walk. assist in mobilizing the community. top tips for Because of this, a crowd built up at the Screening Point – a sports centre. Luckily, we had enough An Advocacy Walk should not be organised success staffers, volunteers and partners to run an in isolation; it is a ‘see-me’ programme, but • Collaborate with other stakeholders impactful walk. after seeing you, the public needs you to offer (e.g. your local Ministry of Health) them something to hold on to, like screening, The inspiration to organise an advocacy for maximum impact. “ walk for World Hepatitis Day (WHD) 2018 The general public initially responded to the walk vaccination and linkages to care. We recommend came from the global WHD 2018 theme, by saying to themselves: “just another walk”. that Advocacy Programmes should ideally be • Make sure you have eye-catching #FindtheMissingMillions. However what stirred up their interest was the preceded by either an outdoor walk or an indoor banners and handouts with clear title; they wanted to know what millions were seminar, and should be concluded by screening, messages. We found that the only way to drive home the missing and we would stop to explain to people. vaccination, and linkage to care. • Plan ahead and have a strategy message was to start by sensitising people in This aroused their interest and helped to build up • Don’t hold a walk in isolation – a way that ensures that they are immediately the anticipated crowd for screening and eventual At LiveWell Initiative (LWI) and at Women engaged, and we thought that the walk was the vaccination. in Hepatitis Africa (WIHA), our approach is link it with a screening and vaccination event.

14 hep Voice JULY 2019 hep Voice JULY 2019 15 how to on World Hepatitis Day

To mark World Hepatitis Day 2018, Fédération SOS Hépatites from France created a social media campaign with the hashtag #DuBruitContreHépatitesC. This is how they reached over 96 million people with their message. They developed three key messages for us people who inject drugs. The campaign was a great success. It was “ Hepatitis C is a silent disease. In France, we to promote on social media. picked up by national media and our total estimate that around 75,000 people live To best reach our audiences we primarily online reach was 96 million people over four with this disease unaware. If not detected in • 75,000 French people are unaware based our campaign on Facebook, as our months. time, it can destroy patients’ livers and lead that they are infected with viral audiences were mainly older and we were to cirrhosis or cancer. hepatitis. reaching out to a wide range of people. They For a successful social media campaign also recommended that we use LinkedIn to it’s not enough to have an important and When starting preparations for our • Hepatitis C concerns everybody. reach and educate healthcare professionals. relevant topic, you must also capture your campaign we asked ourselves, how can we audience’s imagination. We worked to fight the silence that surrounds hepatitis • Effective cures for hepatitis C exist On Facebook we strived to fuel make our campaign both remarkable and C? The answer soon came to us. Of course, today. conversations on hepatitis C, answering memorable. noise! We quickly decided that the aim of people’s questions, showcasing our field ” our campaign would be to make lots of Together, we then came up with the work and putting people in contact with noise about hepatitis C by informing people hashtag #DuBruitContreHépatitesC medical professionals. On LinkedIn, we top tips for about the virus and how it is transmitted, (#NoiseAgainstHepatitisC) to spread these provided healthcare professionals with key and encouraging people to get tested. We messages, linking them to a simple call to information about our campaign, hepatitis C, success also determined that social media would be action: book an appointment with your and how to test people. • Think about who your target the best platform from which to amplify our doctor and get tested. audience is and why they should message. We took a multilateral approach in listen to your campaign. From there, we worked with the agency developing our social media content. We • Choose a campaign title that will We got in contact with an agency to help us to identify our key audiences. From data worked with the agency to create an array resonate. create our social media campaign. collected by the French Hepatology of content types, including pictures, videos, Association, we identified these groups as: carrousels and a quiz. The agency also filmed • Think about how the campaign women with children born in the 1980s; our field actions to produce video case will help the general development women aged over 45; people who frequent studies. of your organisation and its aims. tattoo parlours; people living with HIV and;

16 hep Voice JULY 2019 hep Voice JULY 2019 17 how to Want more inspiration? Visit www.worldhepatitisday.org on World Hepatitis Day for more masterclasses

Last World Hepatitis Day SOS In Burkina Faso, requests for media When all the Hépatites Burkina hosted a press coverage incurs fees. Instead, we presentations therefore sent newsletters to the media and discussions conference to launch the Find outlets informing them of the launch were over, the Missing Millions campaign. event and outlining the timeline of the we opened They invited broadcast, print press conference. We also included a the floor to and online media, amplifying programme of our WHD activities. questions and their message to the public the journalists On the day itself, twenty-four journalists conducted to get tested and calling on turned up. We registered them and interviews. all stakeholders to intensify made sure everyone had received the their efforts in the fight against day’s schedule. We wanted to make Following hepatitis. This is how they did it. sure that the journalists present would the press find the press conference engaging. We conference To mark WHD last year we launched therefore held the press conference the campaign “ the Find the Missing Millions (FMM) on the official launch day of our FMM was relayed campaign. As we wanted to spread the campaign and activities. Our President by almost all messages of the campaign far and wide, presented on why we should find the the media we decided to hold a press conference at missing millions. And a nationally- outlets present, ” the launch. The media is one of the best celebrated hepato-gastroenterologist meaning our ways to reach different sections of the presented on the state of play of messages reached populations across our general public. hepatitis B and C in Burkina Faso. country. top tips for We found that getting a celebrity on Whilst obtaining press coverage and success board also helped boost media interest media interest can be expensive in our • Send press releases to the and so we invited a Burkinabe music star country, it is crucial for social mobilisation media as well as inviting them to to join our press conference. She got and generating real political change. a press conference. screened for viral hepatitis in front of ” • Ensure you have speakers and the press to send the message out that activities that are worth media everyone should get tested. She also attention. appealed to the authorities to offer the • Ensure there is an opportunity hepatitis B vaccination to all new-borns, for questions and individual and to make sure screening and testing interviews. facilities are available across the country.

18 hep Voice JULY 2019 hep Voice JULY 2019 19 See more stories and submit your own at www.worldhepatitisalliance.org/wall-stories Wall of Stories Philip Baldwin alienated from HIV negative slowly gain more acceptance men on account of my HIV, around my diagnoses. and I felt alienated from HIV Together, our stories positive men on account of Though it took me a number can change the way “I was just 24 years old my hepatitis C. I didn’t know of years to come to terms with when I was diagnosed with the world sees viral where or how to fit in. I felt my hepatitis C, once I had HIV and hepatitis C. I was isolated. I really did feel that achieved it, I really wanted to hepatitis. The stories diagnosed with HIV over my I was alone. speak out because there is a of those living with lunch break from work, then real lack of awareness around or impacted by a week later I was told I also the virus. In 2014, I started had hepatitis C. It came as writing for the Huffpost (a viral hepatitis can a complete shock, and this "I really did popular online magazine) help educate and double whammy had a huge feel that I was and in 2015, I left my job as a raise awareness, impact on my life. I felt fear, lawyer in the City of London taking part in protest marches. of hepatitis C. shame, grief, and anger. provide support alone." to concentrate full time on my I would encourage anyone activism. I’m now a gay rights, who has the confidence I think that it is really I had no physical symptoms and inspiration, and human rights activist to do so to speak about important that we find the of hepatitis. I had been tackle stigma and The year of my diagnoses and a writer. Ultimately, my their own experiences with many people who are living accessing STI testing from was particularly difficult. diagnoses empowered me and hepatitis – personal stories with viral hepatitis but are discrimination, and the age of 17 and always During this time, I I really wouldn’t be the person and experiences are very undiagnosed. We need to highlight the true aimed to have safe sex. contemplated taking my life that I am today if it hadn’t compelling and help to dramatically increase testing Because I was tested impact of this global on three occasions. What been for them. break down stigma. After all, and, in my view, we need to regularly, this meant that pulled me back was thinking hepatitis doesn’t discriminate aim to move testing beyond disease. the viruses were diagnosed about the impact that this I am very privileged to have and people from all walks of prisons, beyond substance early on and I was able to would have on my family the voice that I do around life can have it. misuse services, beyond Each month we share the access treatment as soon as and friends. I attended HIV, hepatitis and human sexual health clinics. It needs story of someone whose life possible. support groups where I met rights issues. I have magazine I accessed treatment for to become the norm that has been affected by viral with other people living with columns where I frequently hepatitis C in December 2016. people are tested. This would hepatitis. This month, we hear Emotionally, though, HIV and hepatitis C. Hearing write about hepatitis, and I I found the 12-week treatment help break down stigma from Philip Baldwin from the hepatitis C had a huge about their journeys really discuss it on radio, and on TV. I to be side-effect free and it surrounding the disease, too. UK. impact on me and I felt helped me come to terms try to be as candid as possible was an amazing feeling when the stigma of my diagnosis with being HIV and hepatitis about my own journey with I cleared the infection. It felt acutely. Having been C positive, and I was able to hepatitis C. We need to raise like a huge weight had been ” diagnosed with both HIV gain objectivity and learn awareness around the virus lifted from my shoulders. I no and hepatitis C, I had to Follow Philip on Twitter more about the viruses. This and educate people. Being longer had to worry about the deal with the dual stigma at @philipcbaldwin objectivity allowed me to an activist doesn’t just mean potential health consequences of being co-infected. I felt

20 hep Voice JULY 2019 hep Voice JULY 2019 21 Click here to watch a video interview with Philip with top tips for writing your patient story hep Voice

www.worldhepatitisalliance.org

22 hep Voice JULY 2019