Efforts to combat hepatitis B across the U.S. and globally discussed in a recent Chicago forum
Held at the primary scientific conference on hepatitis B, the event focused on
the 300 million people worldwide living with the disease.
Doylestown, Pa., Sept. 25, 2024 – The annual International HBV Meeting, which is the world’s primary scientific conference on hepatitis B, this year began with a Community Forum on Sept. 11 that focused on people living with hepatitis B, including a lived experience panel (a recording is posted here).
Wendy Lo, a Californian with chronic hepatitis B, has become an outspoken advocate. She said, “Hepatitis is not just a liver disease, it’s an infectious disease, and it’s very, very stigmatized.”
Wendy Lo and Dr. Chari Cohen
As one of the Hepatitis B Foundation’s #justB Storytellers, Wendy talked about how research for hepatitis B is underfunded relative to other life-threatening diseases. She shared an experience as the sole patient representative on a grant-review panel and hearing someone say, “We don’t need to fund hep B research; we got vaccines for that.”
Wendy said she was stunned. “Vaccines are not going to solve the hepatitis B epidemic,” she said.
Worldwide, an estimated 300 million people are living with hepatitis B. Very few are diagnosed and far fewer are being treated.
Hepatitis B Foundation President Chari A. Cohen, DrPH, MPH, talked about the national landscape for eliminating the disease.
“In the U.S., we have no true national surveillance system for chronic hepatitis B,” she said. Dr. Cohen added that, based on modeling: “You will see estimates of anywhere from 800,000 to 2.4 million people living with chronic hepatitis B infection. What we can say is that the numbers haven’t changed appreciably over the past 15 years and acute cases have been on the rise.”
The U.S. has a national hepatitis B elimination plan, Dr. Cohen said, and many states are developing their own. Three states have plans to eradicate hepatitis B and C: Alaska, Minnesota and Pennsylvania. Illinois is the only state with a plan specifically for hepatitis B.
Jing Zhang, PhD, Director of Community Health Programs at the Midwest Asian Health Association (MAHA) in Chicago, spoke at the Community Forum.
“In the U.S., Asian Americans make up about 6% of the total population, yet comprise almost 60% of the people chronically infected by hepatitis B,” Dr. Zhang said.
MAHA, which has two locations in Chicago’s Chinatown and a job training center in the nearby Bridgeport neighborhood, operates a hepatitis B clinic which begun in 2012. It offers education, screening, testing and referrals to expert providers for treatment. The clinic also helps patients obtain the medication they need at no cost.
“Hepatitis B is preventable through vaccination,” Dr. Zhang said. She added, “Hepatitis B is often not diagnosed due to having no symptoms, so many people who become chronically infected don’t realize until it’s too late.”
The Community Forum was sponsored by the Hepatitis B Foundation and ICE-HBV. First held five years ago at the 2019 International HBV Meeting in Australia, the Forum facilitates engagement between attendees at the International HBV Meeting, public health professionals and the broader community affected by hepatitis B. The primary goal is promoting communication among these groups to identify the best approaches to fast-track HBV cure and eliminate stigma and discrimination.
John Tavis, PhD, a scientist at Saint Louis University School of Medicine and chair of ICE-HBV, served as moderator of the forum. Other speakers included Frank Hood, MPS, Hepatitis B Foundation; Anao Zhang, PhD, University of Michigan School of Social Work; Jeffrey Erdman, Illinois Public Health Association; Oyu Tumurtuya, PharmD, Mongolian Community Health Network; Sam Forsythe, Howard Brown Health; Thomas Tu, PhD, Westmead Institute (Australia); and two other #justB Storytellers, Bright Ansah and Kim Vu.
Speakers at the 2024 HBV Community Forum
The Hepatitis B Foundation has compiled community-designed resources for people living with hepatitis B and their caregivers from community-based organizations across the globe working on viral hepatitis. You can view and share their resources here to help improve hepatitis B awareness in your communities.
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.