MAY/JUNE 2021: VOL 51 hepVoiceYour magazine from the World Hepatitis Alliance

HEPATITIS

1 hep Voice MAY/JUNE 2021 Welcome to hepVoice Contents Stay connected

www.worldhepatitisalliance.org The World Hepatitis Alliance (WHA) is delighted to Regulars launch the “Hepatitis Can’t Wait” campaign, calling [email protected] for urgent action in order to reach the targets for 4 hepHeadlines hepatitis elimination. The new campaign will be the www.facebook.com/worldhepalliance theme for 2021. In this edition, we will show the need for action on hepatitis and 6 Advocacy dates @Hep_Alliance explain how you can get involved with the campaign. Read more on page 10. Features @worldhepatitisalliance

In the past few weeks, the World Health Organization 8 NOhep Village returns (WHO) has released new data highlighting the to GHS progress that has been made towards the 2030 elimination targets. This data shows that we are not 9 High-level meeting Want to contribute? on track and that progress has been limited. Policy on HIV/AIDS makers can’t wait to act on tackling hepatitis. Read We welcome your contributions so Don’t more on page 18. 10 World Hepatitis Summit miss out please get in touch at [email protected] - receive In May, the World Health Assembly agreed on the 12 Global progress on to have your news and stories hepVoice creation of a new global health strategy for viral reducing viral hepatitis straight hepatitis. This new document will be a reaffirmation included in future issues and feel free 14 New global health sector to your by WHO Member States of their promise to eliminate to share this magazine with inbox! hepatitis. It is clear that action will be needed in order strategy on viral hepatitis your network. to reach this goal. Read more on page 20. 18 Hepatitis Can’t Wait

Hepatitis Can’t Wait. 26 We are not waiting - SIDC Lebanon 28 Inspiration from around the world - Tibet 30 Wall of stories: Reverend Jason Crum Escalera Cary James,

WHA Chief Executive

2 hep Voice MAY/JUNE 2021 3 hep Voice MAY/JUNE 2021 hep headlines Hepatitis is regularly making the news. Here are a few highlights from around the world.

US President the significant toll that guidance for countries releases Presidential viral hepatitis has had and other stakeholders proclamation on the nation’s health seeking validation on hepatitis and the impact of when it comes to the hepatitis stigma and elimination of viral discrimination among hepatitis as a public those affected. health threat. The guidance provides The presidential a global framework proclamation reaffirms for the processes the government’s and standards for will be published hepatitis is endemic, this The commitment to ensuring the validation of in 2022. underserved population Foundation has that everyone knows elimination, proposing is often excluded from launched the Hepatitis The President of their viral hepatitis the use of absolute Read more here. national hepatitis plans B Discrimination the United States of status, that they have impact targets to and are unable to access Registry, the first global America, Joe Biden, access to high quality validate elimination at a Improving care of testing and treatment. database allowing issued a presidential care and treatment and national level. migrants is key for viral According to the paper, people around the proclamation regarding that they can live free hepatitis elimination political and health world to confidentially hepatitis on May 19 from stigma in Europe strategies need to be document their hepatitis (National Hepatitis and discrimination. In research published adapted to meet these B related discrimination Testing Day in the US). by the World Health challenges and to help experiences In the proclamation, Read more here. Organization, Jin Un eliminate viral anonymously. The he encourages all et al. offer evidence hepatitis globally. registry’s data will be Americans to join in WHO launches of the importance of used to develop policy activities that will interim guidance for treating viral hepatitis Read more here. and advocacy efforts, increase awareness country validation for in migrant populations which are intended about viral hepatitis and elimination of The interim guidance in order to achieve Hepatitis B Foundation to eliminate hepatitis increase viral hepatitis will be replaced by hepatitis elimination launches registry of B-related discrimination hepatitis testing. in Europe. Although discrimination against The World Health the new Global Health in the future. European countries people living with The proclamation Organization (WHO) Sector Strategy (GHSS) host many migrants hepatitis B comes in response to has developed interim on viral hepatitis, which Read more here. from areas where viral

4 hep Voice MAY/JUNE 2021 5 hep Voice MAY/JUNE 2021 Participating in a hepatitis related activity or have an event planned? Email us on [email protected] or contact us on social media.

to find out more about our new “Hepatitis Can’t Wait” campaign and learn how you can get involved. Don’t forget to use #WorldHepatitisDay on social Key advocacy dates media to help us reach as many people as possible. Upcoming events and activities taking place in the coming months. 9 August International Day of the World’s Indigenous Peoples

There are an estimated 370 million Indigenous people in the world, living 18-20 June across 90 countries. They make up less than five percent of the planet’s Global Hepatitis Summit population, but account for 15 percent of the world’s most poor. Indigenous peoples are also disproportionately affected by viral hepatitis and may be The Global Hepatitis Summit 2021 will bring together top clinicians and up to 10 times more likely to be living with viral hepatitis than the general researchers from around the world in a four-day digital conference. Under population in their respective countries. Use #IndigenousDay to help raise the theme “Evolution and Revolution of Viral Hepatitis and Liver ” this awareness and to demand that no one – including Indigenous peoples – is left intensive and vibrant scientific event will hold many learning opportunities for behind in the race to eliminate viral hepatitis. all participants in every current aspect of hepatitis development. Learn more. 23–26 June International Liver Congress 2021

The European Association for the Study of the Liver (EASL) is hosting the International Liver Congress (ILC 2021), an innovative and engaging digital event for the global liver community to connect and learn via cutting- edge content. ILC 2021 will be a renewed opportunity for the global liver community to connect and join forces to beat liver disease. For the first time ever, ILC will take place on the e-learning platform, EASL Campus. Learn more. 28 July World Hepatitis Day

World Hepatitis Day is an annual event aimed at raising awareness of viral hepatitis in order to influence real change. With a person dying every 30 seconds from a hepatitis related illness – even in the current COVID-19 crisis – we “can’t wait” to act on viral hepatitis. Visit the World Hepatitis Day website

6 hep Voice MAY/JUNE 2021 7 hep Voice MAY/JUNE 2021 NOhep Village returns to GHS UN Political Declaration on HIV commits to hepatitis support We are very pleased to announce that NOhep Village is returning to this year's Global Hepatitis Summit (GHS), as a virtual symposium. Organised in collaboration with the Coalition to Eradicate Viral Hepatitis in Asia Pacific The United Nations hosted a High- communities. Targeted interventions (CEVHAP), the symposium will focus on how civil society and the scientific Level Meeting (HLM) on HIV/AIDS to help prevent, diagnose, and community can work better together in order to achieve elimination. from 8 -10 June 2021. At the treat hepatitis and HIV are crucial conclusion of the meeting, countries in ensuring the communities most Under the theme “Elimination in action – Stories from the Frontline,” signed a political declaration on HIV underserved by health systems are we will bring together members of civil society organisations, alongside reaffirming their commitments to not left behind as we look to tackle medical professionals, in order to exchange experiences in both programme ending AIDS as a threat these epidemics. implementation and service delivery. We will be joined by hepatitis advocates, by 2030. academics and healthcare professionals from all over the world, who will be Now is the time to turn these sharing stories of elimination efforts in their home countries. commitments into equitable action on hepatitis elimination. Communities affected by viral hepatitis are often Join us for the two-day NOhep Village Symposium from 18-19 June 2021. left unable to receive the care they Register now! need. We call on global funders to support countries in integrating services; particularly in the areas of maternal health and harm reduction services. By taking a person-centred In the document, hepatitis integration approach to healthcare, with civil is included in several areas, including society and the affected community maternal health interventions, harm playing a central role, we can win reduction services, and services the fight against HIV and hepatitis targeting those living with hepatitis together. co-. Across the world, 2.3 million people live with both HIV and Hepatitis Can’t Wait. We must and 2.7 million people live act now. with both HIV and hepatitis B.

The World Hepatitis Alliance (WHA) and our network of over 300 organisations in 100 countries, welcomes the inclusion of viral hepatitis within the 2021 Political Declaration on HIV/ AIDS. Viral hepatitis and HIV often disproportionately affect the same

8 hep Voice MAY/JUNE 2021 9 hep Voice MAY/JUNE 2021 The World Hepatitis Alliance (WHA) is pleased to announce that the World Hepatitis Summit (WHS) will return in 2022 with a hybrid meeting. This will combine an in-person event for those able to attend along with a virtual option for those unable to travel. The three-day summit will take place in Bangkok, Thailand, from June 8-10, with a one-day pre- conference meeting exclusively for WHA members held on 7 June. With COVID-19 BANGKOK, THAILAND The WHS is the only global hepatitis conference resulting in radical focused on public health and hepatitis elimination. JUNE 8-10 2022 disruption to health systems The summit in 2022, co-sponsored by the World and the global health agenda Health Organization (WHO) and organised by increasingly focussing on Universal WHA, will bring together the international hepatitis Health Coverage (UHC), WHS community for an unrivalled opportunity to focus 2022 will explore the challenges and on implementing the viral hepatitis response. By opportunities for hepatitis programmes A turning point in bringing together civil society and community within these evolving health systems. the global response organisations, people with lived experience and to viral hepatitis. the affected community, health ministers, clinicians and programme managers, WHS 2022 will drive Cary James, WHA CEO progress to make the elimination of viral hepatitis by An inspiring 2030 a reality. high-level summit that also served as an excellent WHS 2022 will be the third World Hepatitis Summit; preceding summits were WHS 2015 held in Glasgow, networking event. Scotland and WHS 2017 held in São Paolo, Brazil. Previous summits were landmark events in the global hepatitis response. The theme will be "Achieving The Elimination Of Viral Hepatitis Within Evolving Health Systems". Countries will have reported against the 2020 targets and with less than 10 years to go until the 2030 targets, it is likely that most countries will need to accelerate their efforts in addressing hepatitis A, B, C, D and E across the cascade of care. Further, these discussions will need to be had within the framework of Universal Health Coverage (UHC) and the reshaping of health systems amidst the COVID-19 pandemic to ensure a response which is integrated and sustainable.

WHS 2022 will accelerate progress towards hepatitis elimination in the face of COVID-19. With less than a decade to go to reach the 2030 elimination targets, it has never been more important to bring the hepatitis community together again.

Registration and calls for abstracts will open in the coming months.

For more information, including sponsorship packages, and to register your interest please visit www.worldhepatitissummit.org

10 hep Voice MAY/JUNE 2021 11 hep Voice MAY/JUNE 2021 “The accountability report would increase in access to hepatitis C Direct have looked very different a year Acting Antivirals (DAAs). Despite ago, before COVID-19”, says Dr significant price drops in the costs Meg Doherty, Director of WHO’s of DAAs, they remain unavailable Department of Global HIV, Hepatitis to thousands of people worldwide; and STI Programmes. “Our progress especially those from low-resource to date demonstrates that we have settings, or from the communities New report highlights the interventions and approaches to underserved by healthcare systems. make a great impact and build back stronger against COVID-19, HIV, viral It is clear that a concerted effort is global progress on hepatitis, and STIs. The report is a needed to get us on track to reach the call to action – we have nine years elimination targets. The COVID-19 to reach our SDG targets – we need pandemic will have put us further reducing viral hepatitis all stakeholders to accelerate action behind. Action is needed from all across the three , in order to stakeholders and right now. Hepatitis achieve our ambitious yet achievable can’t wait to be addressed, people goals by 2030.’’ living with hepatitis can’t wait for diagnosis, prevention interventions, deaths in 2019. Only 10% of people A new report released by the WHA commentary including harm reduction and hepatitis World Health Organization who are living with the hepatitis B B , can’t wait to be scaled virus are diagnosed, with only 22% of (WHO), highlights both the up and lives can’t wait to them receiving treatment. For hepatitis This new report offers a mixed picture. be saved. achievements and the gaps C, just 21% of people are diagnosed, On the one hand we can take heart in the implementation of the with 62% of them receiving treatment. from the progress that is being The report also highlights the Despite some progress towards the Global Health Sector Strategy made, especially in the reduction of countries that aren’t waiting. Egypt 2020 hepatitis targets, the challenges incidences of hepatitis B. The increase has gone from the country with the on Viral Hepatitis from 2016- in achieving the 2030 goals in the number of people being able to highest global burden of hepatitis C 2021. It also outlines key are enormous. access treatment for hepatitis C is also to being the first country looking to steps which need to be taken a step in the right direction. However, validate the elimination of hepatitis There have however been some there are also glaring gaps in the C. Mongolia, Pakistan and Georgia in order to eliminate hepatitis important success stories. The progress and governments have been are also increasing progress towards as a public health threat reduction in the incidence of slow in their responses. While 300,000 hepatitis elimination, but many more by 2030. hepatitis B is one of the few health fewer people are dying from viral countries need to accelerate their targets amongst the United Nations hepatitis annually, that still leaves programmes. We can eliminate viral The new report contains estimates Sustainable Development Goals (STG) 1.1 million people dying each year, hepatitis within the next nine years, for viral hepatitis, which highlight that is on track. In addition, new despite the availability of a vaccine but it will take concerted efforts from how most targets had not been met data shows that 9.4 million people and treatments for hepatitis B and a all parties to get there. Now is the by 2020, even before the COVID-19 are receiving treatment for chronic cure for hepatitis C. time for action. pandemic struck. New data shows that hepatitis C virus infection, which is hepatitis B and C caused three million more than a ninefold increase In order to reach the elimination Hepatitis Can’t Wait. new and 1.1 million one since 2015. targets, there needs to be a six-fold

12 hep Voice MAY/JUNE 2021 13 hep Voice MAY/JUNE 2021 The World Health Only 43% of newborns worldwide Assembly adopts decision receive hepatitis B birth to create new global dose vaccination* health sector strategy on viral hepatitis

The World Health Assembly, discussion, reaffirming the need to the decision-making involve civil society in the creation, governance and implementation of body of the World Health the GHSS and national elimination Organization (WHO) has strategies. pledged to create a new Global Health Sector Strategy "The new GHSS will be (GHSS) on viral hepatitis. presented at the 75th The first GHSS, which was created in World Health Assembly 2016 (covering the period 2016-2021), committed to the elimination of viral in 2022." hepatitis by 2030. The new GHSS will look to build on the progress made The new GHSS will be presented at towards elimination and accelerate the 75th World Health Assembly action across the world. The new GHSS in 2022 and will be a pillar of will also look to integrate strategies discussion at the World Hepatitis to tackle HIV and STI’s, in order to Summit in June 2022. 3x achieve the elimination of all three disease areas within a decade. Have your say on the new Hepatitis C treatment strategy by completing the needs to increase The World Hepatitis Alliance, an on-line consultation official non-state actors to WHO, threefold to reach the submitted an intervention into the 2030 elimination targets*

14 hep Voice MAY/JUNE 2021 15 hep Voice MAY/JUNE 2021 *Data: WHO interim guidance for country validation of viral hepatitis elimination WHA statement on the new GHSS 290 million people who are unaware they are living with viral hepatitis only 10% The World Hepatitis Alliance (WHA) and link them to the care they need. with over 300 members in 100 Prevention targets can stop more of people living with countries, welcomes the development lives being affected by viral hepatitis hepatitis B know of a new global health sector strategy through harm reduction services and for viral hepatitis. the prevention of their status* mother-to-child transmission. Viral hepatitis is one of the deadliest health crises of our time, claiming more than 1.1 million lives every "The populations year. The tools to prevent, diagnose most impacted by and treat viral hepatitis are readily available. With a low-cost vaccine viral hepatitis are and treatments for hepatitis B and a cure for hepatitis C, WHO’s goal of often those most eliminating viral hepatitis by 2030 is underserved by achievable. “Hepatitis Can’t Wait” any longer for action. Less than half of health systems." WHO member states have reported having viral hepatitis plans in place The populations most impacted by and lives continue to be unnecessarily viral hepatitis are often those most lost due to hepatitis. underserved by health systems. Civil society and the affected community are a critical catalyst to ensure that "Viral hepatitis is one no one is left behind and must be of the deadliest health central to the new strategy. They must be equitable partners in the planning, crises of our time, implementation, monitoring and governance of hepatitis elimination claiming more than 1.1 programmes and services everywhere. million lives WHA stand ready to support WHO in every year." the development of the new global health strategy and is committed to only 21% A new Global Health Sector Strategy tirelessly working towards its success. for viral hepatitis, is a vital tool for WHA looks forward to working with holding countries accountable to their WHO on World Hepatitis Day (July 28 of people living with commitments to reach elimination. 2021), with the theme “Hepatitis Can’t hepatitis C know Realistic and achievable testing and Wait,” which calls for urgent action on their status* treatment targets can help find the viral hepatitis elimination.

16 hep Voice MAY/JUNE 2021 17 hep Voice MAY/JUNE 2021 *Data: WHO interim guidance for country validation of viral hepatitis elimination HEPATITIS

‘Hepatitis Can’t Wait’ is With Hepatitis Can’t Wait we will raise our collective CAN'T WAITvoices to call for urgent action for the people the new campaign theme affected by hepatitis across the world. Alongside this, it will also highlight the social injustice and for World Hepatitis Day inequity caused by the lack of action on hepatitis (WHD) 2021, bringing elimination and focus on the positive action needed WHA and its global to get on track to meet the 2030 elimination goals. network of over 300 World Hepatitis Day is our day to raise awareness of viral hepatitis. We aim to unite the global community members in nearly to demand action from decision makers globally to 100 countries prioritise the elimination of viral hepatitis. We aim to: together to lead the 1. Raise awareness of viral hepatitis campaign internationally. 2. Communicate the urgent need for action on hepatitis now

The Hepatitis Can’t Wait campaign is a great new 3. Reveal the social injustice caused advocacy platform for activists, civil society and by the lack of action on viral hepatitis the affected community to use to reach decision makers, policy makers and those in power. 4. Raise the voices of the people and communities affected by viral Launched in May 2021 the Hepatitis Can’t hepatitis to demand positive action Wait highlights the need to accelerate hepatitis and fight stigma elimination efforts. For too long hepatitis 5. Celebrate the global community elimination efforts have been underfunded, under combating hepatitis around prioritised and under resourced. The COVID-19 the world pandemic has put us back even further from the progress we were making to achieve the 6. Call on policymakers, decision makers and global funders to join elimination of viral hepatitis by 2030, the target the fight to eliminate hepatitis set by the World Health Organization in 2016.

18 hep Voice MAY/JUNE 2021 19 hep Voice MAY/JUNE 2021 WE CAN’T WAIT TO ACT People living with viral hepatitis unaware With a person dying can’t wait for testing

People living with hepatitis can’t wait for every 30 seconds from a life saving treatments

Expectant mothers can’t wait for hepatitis hepatitis related illness screening and treatment

Newborn babies can’t wait for birth – even in the current dose vaccination

People affected by hepatitis can’t wait COVID-19 crisis – we to end stigma and discrimination

Community organisations can’t wait can’t wait to act on for greater investment

Decision makers can’t wait and must act viral hepatitis. now to make hepatitis elimination a reality through political will and funding.

The campaign will frame the fight against viral hepatitis as the fight for equity, human rights and social justice while focusing on positive action. The campaign will be proactive, empowering and focused on a positive future.

20 hep Voice MAY/JUNE 2021 21 hep Voice MAY/JUNE 2021 For more ideas on how to GET get involved visit worldhepatitisday.org Create your video or download message to join our INVOLVED Hepatitis Can’t Wait campaign virtual relay and show guidelines support for WHD

One minute actions Ten minute actions

Take to social media and share one of Create a poster to put up at your local our downloadable social media graphics community centre, in your workplace or with your followers. Don’t forget to tag place of worship to raise awareness. us with #WorldHepatitisDay to join the You could also encourage pharmacists online conversation. and medical professionals to display a poster in their pharmacy, clinic or hospital. Send one of our graphics to your contacts via Whatsapp and encourage them to join the campaign. Apply to light up a local landmark green in support of WHD. Sign the pledge on our microsite to join our mailing list to receive further information and updates throughout Longer actions the campaign. Join our virtual global relay by Use Instagram’s reels function to create submitting a 30 second video a 30 second story/reel. Use the explaining what the elimination of viral #WorldHepatitisDay hashtag and add a hepatitis means to you. Use the WHD and Hep Can’t Wait GIF sticker to hashtags #WorldHepatitisDay and tag and share across channels. #WHDRelay as well as tag us @worldhepatitisalliance and relevant organisations. People can share, Add a Hep Can’t Wait branded frame to explore and track posts throughout the your Facebook profile picture to day. These videos will be shown promote the campaign and WHD itself. throughout World Hepatitis Day on the World Hepatitis Alliance social Point to the time/watch/clock and share media channels. the photo/video on social media on WHD to show your support. Use the Ask your local billboard owners for Create your own hashtag #WorldHepatitisDay and advertising space to raise awareness of Instagram story stickers. hepatitis on World Hepatitis Day. Instagram reel to share on social channels. Watch a video from our 30 second mini Hold an event or webinar to raise series ‘What is...?’ and share on social awareness of viral hepatitis. with friends and followers.

22 hep Voice MAY/JUNE 2021 23 hep Voice MAY/JUNE 2021 WEBINAR DON’T WAIT SERIES TAKE ACTION In July we will be hosting three webinars focusing on key topics in hepatitis elimination.

Webinar one: Hepatitis Can't Wait- accelerating elimination

With so few countries on track to achieve hepatitis elimination by 2030 – we can’t wait to accelerate action toward this goal. Register for our roundtable discussion that will explore how we can generate momentum through innovation, prioritisation, collaboration and overcome the long-standing barriers that have stood in our way. Discussion areas will include:

• Overcoming the persistent barriers to testing, treatment and prevention • Empowering people affected by hepatitis to fight stigma and discrimination and to drive change by decision-makers • Accelerating the decentralisation of services to bring them closer to the communities that need them • Accelerating hepatitis elimination through cancer prevention, reduction of non-communicable diseases and the transformation to universal health coverage (UHC).

Date: 6 July 2021

Time: 1pm London time (8am New york, 9am Sao Paulo, 2pm Geneva, 5:30pm Delhi, 8pm Shanghai, 10pm Sydney)

Register now

Dates and details for webinars Policymakers Can't Wait and Youth Can't Wait are coming soon. Stay [email protected] up to date at WHA website. #HepCantWait

24 hep Voice MAY/JUNE 2021 25 hep Voice MAY/JUNE 2021 We're not waiting

Civil society organisations people who inject drugs, people in have not been waiting to take prison, migrants and asylum seekers, care workers and the general public. action on hepatitis and have been driving the hepatitis How did you serve your community response globally. Even during during the COVID-19 pandemic? at risk-populations to stay in touch can accurately answer their questions the COVID-19 pandemic civil The lockdown has made it difficult and distribute clean needles. We and concerns. society organisations have to continue our awareness-raising tried distributing self-tests as well. We are also involved in research shown how they are able to activities, especially with hard to reach However, our community members projects where we do studies directly groups. We organised a mobile unit did not feel comfortable self- adapt their services to meet with our communities to develop led by a group of peers. We drove to administering them, so they waited the needs of the community. recommendations based on evidence hotspots where people at higher risk until the end of lockdown to get tested to serve them better. For example, we of hepatitis are present, for example, in one of our centres. We sat down with SIDC Lebanon, a participated in a study demonstrating people experiencing homelessness non-profit organisation based in Our centres remained open, but we the benefits of hepatitis B vaccination and people who inject drugs. We Lebanon, to hear about how they have were initially unable to see new in adults. We used this evidence to reached out to them and offered rapid been working with their communities patients, so we had to find a way to engage with the Ministry of Health. hepatitis B and C tests. to meet the organisation's mission of maintain connections in the field. This building a safe and healthy society free Those who tested positive were linked is why we deployed a mobile unit. Do you have any recommendations of stigma and discrimination, where to care in one of our centres, which for other organisations in the field? human rights are fully respected. remained open during the lockdown. How did you approach advocacy We were able to provide treatment change during the pandemic? We recommend that organisations What services do you provide to through the Ministry of Health and working in the STI space develop your community? hepatitis B to key We never stopped engaging on social programmes specifically focused on at-risk populations. media. We tried reaching out to hepatitis B and C and keep up We provide harm reduction and at-risk communities by developing advocacy throughout the year and not just on World Hepatitis Day. This way, healthcare services, advocacy, How did you get the idea for the materials on COVID-19 and drug use we can truly make a difference. networking, psychological support, mobile unit? to combat misconceptions and online awareness and peer to peer education outreach on a dating app. Currently, to at-risk individuals, and capacity At the start of the pandemic, Lebanon we are finalising a chatting app that For more information about SIDC building for NGOs at the national entered a four-month national addresses HIV, hepatitis B and C and Lebanon work visit: and regional level. Our beneficiaries lockdown. We initially asked peers to other sexually transmitted infections www.sidc-lebanon.org include adolescents and youth, sex travel on their motorcycle and visit (STIs). The app will allow users to workers, the LGBTQ+ community, connect to a trained individual that

26 hep Voice MAY/JUNE 2021 27 hep Voice MAY/JUNE 2021 Inspiration from around the world

rate of 12%. A study conducted by the Department of Health of India, the Top tips for success Central Tibetan Administration (CTA) in India and the University of Rochester Individuals living with hepatitis need to feel comfortable to open up and Inspiration from in the UK found that although the share their problems. Trust, respect, and equality are important, to provide hepatitis B rate was higher than a sense of safety. around the the national average, members of Communicate with people in their local language to gain support from local the community reported a lack of leaders and important personnel. world - Tibet awareness and about hepatitis B and misconceptions around the causes of Collaboration improves the way your team works together and solves transmission. Community members many problems. Through the Find the Missing also highlighted that information on Millions campaign, we are unavailable in the local language. highlighting inspiring work from around the world. "Individuals living This month we hear from with hepatitis need Altruism in Action, a non- to feel comfortable governmental organisation (NGO) which works on viral to open up and share hepatitis elimination with their problems. Trust, exiled Tibetans in remote respect, and equality Himalayan region of India. are important, to By Tsering Palmo, Altruism in Action provide a sense Hepatitis B is the second most hepatitis B and appropriate guidance of safety." prevalent life-threatening on treatment for hepatitis B was communicable disease among inaccessible, as information was Altruism in Action founder, Tsering Tibetans in India, with a prevalence Palmo was brought up in India as a Tibetan refugee. Her mission is Achievements to date to seek a hepatitis-free society and serve as many people who As well as raising awareness and Delivered awareness and education training to more than 2,000 students, are suffering from other diseases helping educate people, she works staff, monks, nuns and members of the general population. with love, care and dignity. As a with different organisations and result of her work in education and companies to provide free testing Vaccinated 450 monks, students and staff in the community schools. awareness-raising, she has seen and to cover the cost of medicines for a decrease in hepatitis B related people living with hepatitis B. Provided hepatitis B screening for 1,050 monks, nuns, students, staff and stigma and fear in the community. community personnel. Read the full case study here.

28 hep Voice MAY/JUNE 2021 29 hep Voice MAY/JUNE 2021 Wall of Stories: Jason Crum Escalera

Together, our stories can information about the virus myself. different languages, so that people change the way the world I attended harm reduction groups, around the world can identify with it gathered information through the or learn from it. Hopefully, in some sees viral hepatitis. medical journal platform Medline part of the world someone’s life has and talked to various doctors. Finally, changed because I shared my truth. It Each month we share the story of I came across the is important to me that at least one someone whose life has been affected Hepatitis B Foundation. person who watched the video was by viral hepatitis. This month, inspired to learn their status. The we share the story of Reverend When I first became a Hepatitis B storytellers serve to open the door and Jason Crum Escalera, a Hepatitis B Foundation storyteller, I thought start a conversation. Foundation storyteller dedicated to I was just going to talk about sharing his story in order to raise my hepatitis. I didn’t know that "Worldwide we have to awareness and help others throughout this process I was going living with hepatitis B. to have to strip myself down and empower each other, build myself back up, so that others "I was first diagnosed with hepatitis can see my past and my reality of regardless of our B in 2011. I was already living with living with my hepatitis B and HIV culture, language HIV, so I was facing a burden of living co-infection. It was a life changer with two viruses. I did not have any throughout. I don’t know what my and location." knowledge of hepatitis B, all I was life would have been like have I not anybody living with hepatitis B to go told is that I have a liver virus. shared my story. To anyone living with hepatitis B, who full throttle and tell their truth. is considering sharing their story but My first physician was familiar with "Hopefully, in some might be afraid – it is not about you. I am committed to sharing my story, HIV and hepatitis C co-infection, It is about someone hearing what because it's not about me, it's about but not with HIV and hepatitis B co- part of the world you have gone through and what saving someone's life – about not infection. I was prescribed too much you are going through, so they can being ashamed of who I am and not medication, which caused acid to someone’s life has be educated and influenced to take a being ashamed of my virus. I have the build up in my kidneys. I had to travel changed because I test. There isn't enough conversation virus, but the virus doesn't have me. 290 miles on a monthly basis, just about hepatitis B, because the stigma I see storytellers as being the voice to see a hepatologist. Despite the shared my truth." is so heavy. It is important to be for the voiceless. Worldwide we have hardships, I considered myself lucky truthful, because everyone who is to empower each other, regardless of because so many people don’t have Because I became a storyteller, I was living with hepatitis B should feel our culture, language and location. access to a hepatologist. blessed to meet other people who are like they are not alone. Today I have I hope that one day every general like me. My story is posted online and a level of peace and joy, because I practitioner and every specialist I decided to be proactive and gather the videos are available in several know I am helping people. I would tell will have knowledge of hepatitis B,

See more stories and submit your own at: 30 hep Voice MAY/JUNE 2021 31 hep Voice MAY/JUNE 2021 www.worldhepatitisalliance.org/wall-stories so nobody has to go through what be judged. World Hepatitis Day is a Important and keeps me grounded. I I went through. Ultimately, the day of celebration, a day to reflect "World Hepatitis Day is try to live by the words of this song: patients are the ones that pay the on how far we have come since we a day of celebration, a "Just when I need God he's near. Every price through a lack of knowledge started and to see how far we still time I falter, everytime I fear, God's and stigma. have to go. I hope that on every day to reflect on how willing to aid me, God's willing to World Hepatitis Day, we take a far we have come since cheer just when I need God most." "We need World moment to reflect on all those who lost the battle because they didn't we started and to see None of this would be made possible Hepatitis Day, because have the tools to fight. Every day it's if it wasn't for hard working people how far we still have at the Hepatitis B Foundation. They it gives people living about testing, awareness and reflection. to go." are the frontrunners of the hepatitis with hepatitis more B movement. They are a relatively The other thing that keeps me small organisation but pack a freedom to talk about physically, mentally and spiritually powerful punch, and I wouldn’t be their condition." in check is being an ordained minister where I am without them." of Christ. Faith based spirituality is We need World Hepatitis Day, because it gives people living with hepatitis more freedom to talk about their condition. There was a time when people didn't talk about hepatitis B and it was so stigmatised that people wouldn't even talk about it with their doctor. World Hepatitis Day means more freedom to talk about it and more freedom to live with it; regardless of the stigma and ignorance that plagues it. It is a day that people can motivate others, create awareness and celebrate My husband is a great supporter of knowledge, celebrate health. my ministry and the movement. Not everyone living with hepatitis B has a So many people died without family so we, the storytellers, have to knowing that they had it. They didn't be their support and sometimes even have the chance to fight. So many their family. I spiritually love them people died because they thought and pray for them until they find they have it, but they were too their voice. afraid to get tested, not wanting to

See more stories and submit your own at: 32 hep Voice MAY/JUNE 2021 33 hep Voice MAY/JUNE 2021 www.worldhepatitisalliance.org/wall-stories hep Voice

www.worldhepatitisalliance.org

34 hep Voice MAY/JUNE 2021