NOhep Villagers: ICE-HBV, CEVHAP & Yellow Warriors

Yellow Warriors Society Philippines is the only NGO in the Philippines that deals with viral hepatitis. Run by volunteers, the organisation will never cease to lobby for free diagnostics and treatment for all hepatitis B & C carriers. We also fight against companies who screen and discriminate carriers and work with companies to ensure they understand and protect carriers’ rights.

The Coalition to Eradicate Viral Hepatitis in Asia Pacific (CEVHAP) was the first not-for-profit organisation to work pan-regionally in advocating for public policy reform to reduce the burden of and ultimately eradicate viral hepatitis in Asia Pacific.  Incorporated in October 2010, CEVHAP as an independent, multidisciplinary body membership includes many world-renowned hepatitis experts, academics, patient representatives and people living with the infections.  By utilising their collective expertise and in partnership with a broad range of stakeholders, including government bodies and other civil society groups, our members work to develop effective strategies to inform the development of national responses to viral hepatitis in countries across the region. 

The International Coalition to Eliminate HBV is an international research-driven forum, which is coordinating, promoting and establishing public-private collaborative partnerships to accelerate the discovery of a hepatitis B cure. ICE-HBV aims to fast-track the discovery of a safe, effective, affordable and scalable cure to benefit all people living with chronic hepatitis B, including children and people living with hepatitis C, hepatitis D and HIV co-infection. ICE-HBV intends to contribute to the elimination of chronic hepatitis B as a global public health challenge. ICE-HBV is a non-profit initiative initially created in 2016 by academic researchers.

What do you plan to do at your booth in the NOhep Village?

We’ll be facilitating a daily discussion about the experience, impact and challenges in responding to stigma, discrimination and marginalisation in relation to hepatitis B in Asia Pacific. We will be available to provide expertise about the social and lived impact of hepatitis B, including the policy implications, again particularly in the Asia Pacific region. Our booth backdrop will include info-gram posters and other examples of our advocacy materials.

We’ll also be sharing information about current research to cure hepatitis B. Scientists will engage with delegates to give them tools to better understand hepatitis B and communicate about hepatitis B science with their communities, as well as encourage their governments to invest in hepatitis B  elimination, including cure research. There will be one interactive scientific literacy workshop on the NOhep stage and daily tea-time meet-the-expert sessions for participants to ask questions about transmission, testing, existing treatments and cure research. Posters will be displayed and materials distributed to support discussions.

What do you hope delegates will learn from your booth?

We want to engage researchers from all disciplines, heath care providers, people living with hepatitis B  and the local community, to encourage the meaningful participation of the community affected by hepatitis B in research to help ensure that research on hepatitis B  cure is made in partnership with people living with hepatitis B rather than for them, and that everyone involved is accurately informed about cure research and its potential outcomes. This would contribute to optimal cure preparedness, thus fostering the acceleration of the elimination of viral hepatitis.

We also hope that delegates will learn more about advocacy and social policy research for hepatitis; to understand our visions and the challenges we face in working collectively towards eliminating hepatitis by 2030.

What will make your booth stand out?

Our booth is a unique collaboration between people living with hepatitis B, advocates and researchers. It will bring much needed attention on hepatitis B, a disease which was close to neglected until recently.

Community and scientists joining forces can make a huge difference in this context. Hepatitis B research has been largely underfunded compared to other diseases; enhanced investments could make a big difference and create important resource-savings from treatment scale-up by 2030.  While our focus is on hepatitis B research and the Asia-Pacific region, our collaboration will raise the overall visibility of hepatitis B in the global viral hepatitis elimination agenda.

Recent experiences in Sao Paulo (WHS) and Paris (EASL), have demonstrated the clear need for strong evidence-based coalitions supporting the hepatitis B response, thus we believe our booth and its daily discussions can be instrumental for those who want to make hepatitis B history and to engage all stakeholders in this movement.

What are you most looking forward to about the Global Hepatitis Summit?

We look forward to meeting new people who are involved in the fight to eliminate hepatitis as well as old friends who are working in this field, to interact and share experiences and knowledge. We look forward to this opportunity to promote and develop our initiatives for viral hepatitis elimination, thus supporting the NOhep movement.

How will exhibiting in the NOhep Village benefit your organisation?

Having a booth in the NOhep Village will give us great exposure and increase our profiles outside Asia Pacific, with the potential for us to build new collaborative partnerships.  

How have you worked with the scientific community in the past?

Since 2010 CEVHAP has been a strategic partner with APASL and each year we have staged a Policy Symposium, at the annual APASL Conference to highlight the need for policy reform in hepatitis.  Around ¾ of CEVHAP membership consists of clinicians and medical scientists, all committed to supporting our policy advocacy work.

ICE-HBV is a science-focused coalition, working closely with people living with HBV to accelerate the search for an HBV cure. It was inspired by similar initiatives from the HIV field where the meaningful participation of people affected by the disease is recognized as essential. 

For more information on the Yellow Warriors’s work, visit their website or Facebook page.

To learn more about CEVHAP, visit their website, Twitter, Weibo, LinkedIn or Facebook.

More information on ICE-HBV can be found on their website or Twitter page.