Community Advisory Board

Hepatitis B and D Global Community Advisory Board (CAB)

The mission of the CAB is to integrate community perspectives and expertise into hepatitis B and D drug development, as well as public health and clinical research, to ensure that the voices of those living with and affected by hepatitis B and D are represented, and to drive progress toward a hepatitis B cure and effective hepatitis D therapeutics. The CAB is an all-volunteer group composed of 23 people living with and affected by chronic hepatitis B (CHB) and chronic hepatitis delta (CHD) who provide individual expertise to inform hepatitis B and D drug and clinical trial development. CAB members serve 24-month terms.

• Provide training and education to facilitate increased community engagement in and awareness of hepatitis B and D drug development, public health research, and clinical trials
• Establish and maintain opportunities for community members to interact with researchers and other key stakeholders and provide their input/recommendations on topics such as drug development and clinical trials, treatment guidelines, and hepatitis B and D diagnostics.
• Promote diverse and inclusive representation of communities highly affected by hepatitis B and D in drug development, public health research and programming, and clinical research

Chairperson: Kenneth Kabagambe, Uganda	Baasansuren Lkhagvasuren, Mongolia
Bright Ansah, United States	Partizan Malkaj, Albania
Soumen Basu, India	Chris Munoz, Philippines
Supa Chantschool, United Kingdom	Prince Ochuko Okinedo, Nigeria
Dan-Andrei Cretu, Romania	Cosmin Oprea, Romania
Ramazan Dossov, Kazakhstan	Lori Scott, United States
Susan Amanda Goldring, United Kingdom	Lien Tran, Australia
Ibrahima Gueye, Senegal	Thomas Tu, Australia
Shaibu Issa, Tanzania	Atta ul Haq, Pakistan
Darlene Jubah, United States	Manzoor Ujjan, Pakistan
Philip Kwame Yeboah, Ghana	Ravshan Yakubov, Canada
Silvana Lesidrenska, Bulgaria

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HBV-HDV Community Advisory Board protests potential cuts in U.S. funding for Public Health and Medical Research

The Community Advisory Board (CAB) for hepatitis B and Delta, and we in the hepatitis B patient community, find the recent changes by the United States government to public health funding and other health policies problematic and life-threatening. In light of the current atmosphere, our voices must be a part of this conversation. It has taken many years for progress to be made in hepatitis B virus (HBV) prevention, diagnosis and linkage to care. Hepatitis B causes progressive liver disease and is the major cause of liver cancer (a deadly form of cancer). We in the hepatitis B patient community were hopeful for increased attention to be paid to this virus that kills over 800,000 people each year, including an estimated 2000 people here in the U.S., and 389,917 people in the U.S. have died from viral hepatitis between 1999 and 2022, but that is not what has happened. We believe the opposite has occurred.

HBV infection is the leading cause of liver cancer worldwide, and here in the U.S. Many community health organizations rely on funding from the federal government to serve their communities by providing education, testing, and vaccination to fight HBV infection. Due to the recent proposed and enacted changes, these vital and life-saving services are now at risk, and the American people will suffer as a result. Instead of cutting back, officials should increase their support for efforts in hepatitis B education, testing, and vaccination. Threats to federal funding for community-based programs undermine the momentum and progress that have been tirelessly built in this vital area. Without these services, HBV infections will continue to spread not only worldwide but also within our communities and families, perpetuating the cycle. Additionally, people living with hepatitis B will face worse health outcomes, and the incidence of liver cancer will increase.

Furthermore, several research institutions depend on federal funding for medical and basic science research. Reducing funding for medical research will hinder and slow medical progress, halting advancements toward new life-saving treatments that millions of patients desperately need and putting America’s leadership in biomedical innovation in jeopardy. Currently, there are only three first-line antiviral treatments for people with chronic hepatitis B, and none of them are curative. We need more options with improved treatments to help patients prevent the development of liver cancer. By defunding medical research, essential work to discover curative therapies and cancer early detection and prevention tools for millions of patients will be postponed indefinitely, which is unacceptable. People living with hepatitis B deserve better and more effective solutions.

The loss of federal funding will severely impact research within and outside the US, which will in turn limit scientific progress and impact the health and well-being of Americans and all those affected by HBV infection globally. We stand to lose an entire generation of the world’s best and brightest scientists and public health professionals, who keep us safe and design the medicines that save our lives. Once we lose them, it might take many years to rebuild such capacity, which will be detrimental and costly.
Science and public health play a crucial role in our country, and these roles cannot be underestimated. Public health data is essential for identifying and responding to health threats. Collecting and sharing public health data allows us to save money and resources by directing programs toward areas of need. Evidence-based public health practice is the sole way to save lives and prevent illness and death. Funding of public health and science, and the collaboration with other stakeholders, should be maintained, if not expanded, both globally and in the U.S.

Science is meant to change over time as more knowledge is gained through research.
But all science is based on strict evidence and must be isolated from all politics. Through rigorous standards and research, vaccines have been developed to prevent once-deadly diseases. It is irrefutable that the currently available vaccines are safe and save lives. Vaccines are the most effective way of preventing HBV transmission, and without adequate funding and strong recommendations, consistent vaccine administration could be halted, leading to a rising incidence of hepatitis B, a devastating and completely avoidable step backward. Hepatitis B does not discriminate against people by country of origin or their political views; it can impact anybody regardless of their social, economic, or political background. Hepatitis B is truly a global silent epidemic that impacts millions of people globally and in the United States.

Research, science, and public health need more resources, not fewer. Federal funding is one such resource, so we, as a CAB, strongly encourage policymakers and the current Administration to rescind harmful decisions and maintain critical investments in public health and medical research. We are a community that has been underserved, if not ignored, and we ask that the current Administration recognize these shortcomings and respond appropriately.