People living with hepatitis B should have a voice in new treatment guidelines, advocates say
Commentary published today in an international medical journal issues call-to-action for hepatitis B guidelines to include representation of people with lived experience.
Doylestown, Pa., Jan. 24, 2024 – A widely read medical journal, The Lancet Gastroenterology & Hepatology, this week published a commentary from a team of physicians and public health experts who strongly advocate for patients’ voices to be heard in developing new guidelines for people living with hepatitis B. The lead author is Catherine Freeland, PhD, MPH, associate director of public health research at the Hepatitis B Foundation.
The authors point out that professional medical societies and the World Health Organization (WHO) have developed guidelines to assist physicians and other providers who are treating people living with hepatitis B (HBV). With new research and evolving medical practice, the guidelines are routinely updated for many societies. Currently, the WHO, the European Association for the Study of the Liver and the American Association for the Study of Liver Diseases are conducting guideline updates.
“People with HBV know the direct impacts and challenges of accessing care,” the authors wrote. “Many aspects of HBV management require shared decision making and both sides of this sharing process must be represented for guidelines to meaningfully reflect optimal care.”
A webinar for health care providers and public health professionals on the need for the lived experience to be included in guideline development and incorporating the patients’ voice is set for Feb. 15 at 10 a.m. EST. To register for the webinar, which is free, click here.
Hepatitis B Foundation President Chari A. Cohen, DrPH, MPH, and the essay’s senior author, noted that: “Guidelines for treating and managing hepatitis B need to be written with a sensitivity to the practical issues and social-emotional considerations faced by people living with hepatitis B. Additionally, the new guidelines need to be relevant to the real-life conditions that exist in a range of countries around the world, especially those where hepatitis B is most prevalent, such as Africa and Asia. A significant barrier is viral load testing, which remains a key part of treatment eligibility but out of reach for most people.”
Hepatitis B management and treatment guidelines are used by providers around the world to care for people with chronic hepatitis B infection. Guidelines that are aligned and simplified, and take patient perspective into consideration, will be the most useful, especially for decentralizing hepatitis B care globally. Additionally, WHO guidelines provide a global standard and specify actions that can help to achieve hepatitis B elimination goals. Guidelines can have a major impact on policymakers and government officials, compelling them to enact broader approaches to treatment. Ideally, that can motivate prioritization of funding for testing, management and treatment. The guidelines also can encourage government officials to negotiate lower prices for drugs and implement strategies for decentralization of care.
Along with Dr. Cohen and Dr. Freeland, the authors include four advocates living with hepatitis B: Danjuma Adda, Kenneth Kabagambe, Wendy Lo and Su Wang, MD, MPH, FACP. Two physicians, Camilla Graham, MD, and Robert Gish, MD, also are among the authors. Dr. Wang is the Hepatitis B Foundation’s senior advisor for global health and Dr. Gish is the Foundation’s medical director. Dr. Graham practices at Beth Israel Deaconess Medical Center.
The Hepatitis B Foundation has long emphasized the voice of people living with hepatitis B. As examples, the #justB Storytelling program, which shares videos of people living with the disease, was launched by the Foundation in 2017 and expanded to include international patients in 2022. In cooperation with the U.S. Food and Drug Administration, the Foundation hosted an Externally Led Patient-Focused Drug Development meeting devoted to hepatitis B in 2020. And the Foundation formed two new Global Community Advisory Boards in 2022, which drew applications from more than 80 individuals worldwide, primarily people living with hepatitis B and delta infections.
The Lancet Gastroenterology & Hepatology is “an internationally trusted source of clinical, public health and global health knowledge” and the world’s leading gastroenterology and hepatology research journal, according to the publishers.
About hepatitis B: The world’s most common serious liver infection, chronic hepatitis B, is caused by a virus that attacks and injures the liver. Each year up to 1 million people die from hepatitis B worldwide, even though it is preventable and treatable. Hepatitis B is a “silent epidemic” because most people do not have symptoms when they are newly or chronically infected. Thus, they can unknowingly infect others and continue the spread of hepatitis B. For people who are chronically infected but don’t have any symptoms, their livers still are being silently damaged, which can result in serious liver diseases such as cirrhosis or liver cancer.
About the Hepatitis B Foundation: As the world’s leading hepatitis B advocacy and research organization, the Hepatitis B Foundation is one of the most active proponents of improving hepatitis B screening, prevention and treatment of the disease. We are the only nonprofit organization solely dedicated to finding a cure for hepatitis B and improving the quality of life for those affected worldwide through research, education and patient advocacy. Founded in 1991, the Hepatitis B Foundation is based in Doylestown, Pa., with offices in Washington, D.C., and Philadelphia. To learn more, go to www.hepb.org, read our blog at hepb.org/blog, follow us on Twitter, Instagram and Facebook (@hepbfoundation) or call us at 215-489-4900.