Hepatitis B Foundation launches the first global registry of discrimination against people living with hepatitis B
The online survey’s results will be shared with policymakers, scholars and the public.
Doylestown, Pa., May 13, 2021 – People globally who are living with hepatitis B often experience discrimination in variety of ways, including denial of access to employment and education, even in the U.S., and an American nonprofit organization has launched the world’s first initiative to track and analyze that discrimination.
The Hepatitis B Foundation is launching the Hepatitis B Discrimination Registry, which will be a permanent and sophisticated database, with a worldwide communications campaign to encourage people living with the serious liver disease to share their stories. The Registry will allow people around the world to confidentially document their hepatitis B related discrimination experiences anonymously.
Chari Cohen, DrPH, MPH, senior vice president of the Hepatitis B Foundation, said the primary means for collecting patients’ accounts will be the Foundation's brief online survey, which will be supplemented over time with patient interviews.
“We hope this registry will provide us with the much-needed documentation to demonstrate that discrimination is a significant human rights violation for those living with hepatitis B that impacts all aspects of life,” Dr. Cohen said. “To our knowledge, no worldwide discrimination registry exists for individuals living with hepatitis B, and we intend to fill this gap.”
Along with asking people living with hepatitis B to complete the survey, the Foundation is requesting that their families, health care providers, advocates, government leaders, other nonprofit organizations and academia to help raise awareness about the new registry, particularly in regions with high infection rates.
The Hepatitis B Foundation has successfully worked to improve protections against discrimination in the U.S., such as winning inclusion of hepatitis B as a protected condition under the Americans with Disabilities Act (ADA) in 2013.
The Discrimination Registry’s data will be used to develop policy and advocacy efforts intended to eliminate hepatitis B-related discrimination in the future. The Foundation will share the data through reports that will include high-level information (country-level, type of discrimination, etc.) on what is reported through the Registry. No identifiable information submitted by a person experiencing discrimination will be made available under any circumstances. The Foundation’s public health staff, which regularly publishes articles in scholarly journals, will publish analyses of the data.
Discrimination against people living with hepatitis B has been documented in the U.S. and many other countries and anecdotally reported through the Foundation’s social media channels and consultation lines with more frequency. But a greater number of discrimination reports may not mean the incidence is rising, according to Catherine Freeland, MPH, public health program director at the Hepatitis B Foundation, who is leading the Registry project.
“The increase is probably because more people are coming out and talking about discrimination, and improved access to technology—more people around the world have access to the internet, social media and email—make it easier for people to find us and share their stories,” Ms. Freeland said.
According to the Foundation, discrimination is defined as the unjust, unfair or prejudicial treatment of a person on the grounds of their hepatitis B status. In other words, being treated differently because of one’s hepatitis B infection. People with hepatitis B often face discrimination in many ways: denied employment or education, treated unfairly while at work or in school, not allowed to enter certain countries, not permitted to serve in the military or treated unfairly by health care providers and institutions.
About Hepatitis B: The number of adults living in the U.S. who have chronic hepatitis B infection may be as high as 2.4 million, which is nearly three times greater than the federal government’s official estimate, according to a new report by a team of public health experts, scientists and physicians. The report’s authors included Dr. Cohen and Foundation President Timothy M. Block, PhD, Foundation Medical Director Robert Gish, MD, and Foundation Board Member Carol Brosgart, MD.
Worldwide, an estimated 292 million people are chronically infected with hepatitis B, less than 10% of infected individuals are diagnosed and an estimated 884,000 people die each year from hepatitis B and related complications such as liver cancer.
The Hepatitis B Foundation called for universal hepatitis B screening in the U.S. in 2018, as the only screening strategy that will help us make progress towards the 2030 goal of eliminating hepatitis B in this country.
About the Hepatitis B Foundation: The nation’s leading 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, the Hepatitis B Foundation was founded in 1991 and is based in Doylestown, Pa., with an office in Washington, D.C. To learn more, go to www.hepb.org and www.hepb30years.org, read our blog at hepb.org/blog, follow us on Twitter, Instagram and Facebook (@hepbfoundation) or call us at 215-489-4900. To donate, contact Jean Holmes at 215-489-4900 or firstname.lastname@example.org.