A short video from the Community Forum is on the Hepatitis B Foundation’s YouTube channel.
https://www.youtube.com/ watch?v=kJibn5lUVmg
Scientists working toward a hepatitis B cure and elimination heard directly from people living with hepatitis B during the third Community Forum at the International HBV meeting in Paris Sept. 18-22.
The session allowed researchers, physicians and others to understand the needs of the greater hepatitis B community. Just as important, it allowed those living with hepatitis B to learn about progress towards treatment and a cure directly from the scientists who have made this their life’s work.
This year’s Forum focused on the European Union, where many hurdles impede health care equality, leading to uneven hepatitis B vaccination, screening and treatment, health disparities, stigma and lack of prioritization to eliminate hepatitis B.
The Community Forum was hosted by the Hepatitis B Foundation and the International Coalition to Eliminate HBV (ICE-HBV). Foundation President Chari A. Cohen, DrPH, MPH, said: “We truly believe in the concept of ‘nothing about us without us.’ Finding a functional cure for hepatitis B will only be beneficial if we address the structural challenges already faced by people living with hepatitis B.”
Vietnam is among the nations with the heaviest burden of hepatitis B, with at least 8% of people infected, studies have shown.
The prevalence may be closer 10%, according to Doan Y. Dao, MD, a native of Vietnam, and assistant professor at Johns Hopkins University School of Medicine. That means with a population of approximately 100 million, nearly 10 million residents may be living with hepatitis B.
About 10 years ago, Dr. Dao contacted Joan and Tim Block, co-founders of the Hepatitis B Foundation, “for advice and support.” The Blocks were able to provide seed funding from the Foundation to help Dr. Dao launch start the Vietnam Viral Hepatitis Alliance in 2014, and has continued to support this initiative.
Aimed at reducing the public health burden of hepatitis B and hepatitis C viruses, the Alliance is focused on supporting the design, funding and implementation of research-based awareness, education, screening and access-to-care programs, along with educational programs for individuals in community and health professionals.
Chari A. Cohen, DrPH, MPH, president of the Hepatitis B Foundation says Dr. Dao’s work is “cutting-edge” and he represents the next generation of clinician/researchers. “With the initiatives he has developed in Vietnam, Dr. Dao has created an excellent model for eliminating hepatitis B that other countries can use,” Dr. Cohen said. “He’s the future of hepatitis B.”
can read more at www.hepb.org
The Hepatitis B Foundation Discrimination Registry is an important tool for documenting the lived experiences of those with hepatitis B.
To date, 378 people have completed the survey, with most of the respondents from the Philippines, Nigeria, India, Pakistan and the U.S. People have reported cases of hepatitis B-related discrimination associated with employment, deportation, denial of visas, and challenges with gaining educational opportunities (university admissions).
It is important to document this information as a first step to changing the situation – because the results of discrimination damage the quality of life for those living with hepatitis B. Recently the Hepatitis B Foundation shared our registry data and presented a poster at the Conference on Liver Disease in Africa (COLDA). This poster received COLDA’s Best in Poster Award and an invitation to present orally at the conference. Our Discrimination Registry will be used to inform for future research as well as work towards policy changes and protections to help those living with hepatitis B.
If you’re interested in submitting anonymously your experience related to discrimination or sharing your story, please add your voice to the discrimination registry on www.hepb.org.
This summer our team starting using a new model for community events that combines screening and vaccination.
Through Hep B United, we held the first one in South Philadelphia July 26 at the African Cultural Alliance of North America Center. Staff from the city’s public health department and Jefferson University medical students provided extensive assistance.
The work is supported by a $475,000 federal award to create a Center of Public Health Excellence focused on hepatitis B elimination across Pennsylvania.
In August and September, our team held seven more screenings around the Philadelphia area.
Catherine Freeland, MPH; Danjuma Adda; and Dr. Hailemichael Desalegn at the 2022 COLDA meeting.Frank Hood, MS, is the Hepatitis B Foundation's new associate director of policy and partnerships. He had been working in viral hepatitis policy and advocacy with the AIDS Institute since 2016.
Anousha Qureshi, who interned with us before graduating from Cabrini University last spring, has joined the Foundation as program coordinator, public health.
You can find our staff list on www.hepb.org under “About Us” and reach us via info@hepb.org.
3805 Easton Road, Doylestown, PA 18902
Phone: (215) 489-4900 www.hepb.org info@hepb.org
The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide through research, education and patient advocacy.
Board of Directors
Timothy M. Block, PhD, Stanley Broadbent Carol Brosgart, MD
Nathaniel Brown, MD
Chari A. Cohen, DrPH, MPH
Loren Danzis, Esq
Craig Esterly, MBA
Anthony Ford-Hutchinson, PhD David A. Gruber, CPA
Raman Kapur
Mark Petty
Lewis Roberts, MB, ChB, PhD
Joel Rosen, Esq
Betsy Seeber, MBA, CPA, FHFMA
Thomas Shenk, PhD
Elizabeth D. Sigety
Walter Tsou, MD, MPH
Su Wang, MD, MPH, FACP
Catharine Williams, MGA
Wayne Yetter
Chari A. Cohen, DrPH, MPH – President
Contact – info@hepb.org
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Layout & Design: Jill M. Brown, CP Print + Promo B Informed is a free publication of the Hepatitis B Foundation with information that is provided solely for educational purposes. It is not intended to serve as medical advice or endorsement of any product or company. Readers should discuss all personal medical questions and decisions with a qualified health care provider. purposes. It is not intended to serve as medical advice or endorsement of any product or company. Readers should discuss all personal medical questions and decisions with a qualified health care provider.
The Hepatitis B Foundation’s Annual Gala is early in 2023: Friday, March 10! Once again it will be in The Warrington, a popular venue in Warrington, Pa. Our greatest fundraiser celebrates the nonprofit’s people and achievements.
We will award the prestigious Baruch S. Blumberg Prize for research and the Community Commitment Award to two amazing, wonderful people at the event.
More at www.hepbgala.org
The face of hepatitis B looks just like you or me. Most people do not look sick, so how do you fight an invisible disease?
That’s where you come in. Your support will help to fund programs that shed light on this life-threatening disease that affects millions of people. People like Kimberly, who didn’t know she had hepatitis B and passed it on to her children.
You can help us educate and raise awareness about hepatitis B, so that people like Kimberly can protect their children.
YOU CAN MAKE A DIFFERENCE. Every dollar counts in the fight for the lives of people with hepatitis B.
Your donation at www.hepb.org/Faces will help with: Screening, Advice, Help and Advocacy.
