Advancing Research, Awareness, Screening and Linkage to Care to Eliminate Hep D in the U.S. is Critical
Findings from a Hep D Roundtable published in Hepatology Communications
In a newly published article in the open journal, Hepatology Communications, the authors outline five urgent priority areas to address hepatitis delta (HDV)—the most aggressive form of viral hepatitis. The recommendations offered in “Advancing research, awareness, screening, and linkage to care to eliminate HDV in the U.S.” were the result of an American Liver Foundation and Hepatitis B Foundation joint roundtable on Hep D held in May 2022, and call on lawmakers to identify the unmet needs of this patient population and suggest strategies to better support and engage the larger community around the prevention, diagnosis, and management of hepatitis delta.
The five priority areas identified in the article are to generate accurate prevalence data, increase awareness, simplify screening and testing, facilitate research on linkage to care and follow-up and improve communication and outreach.
“Hep D can lead to the rapid progression of cirrhosis and an increased risk of liver cancer and death, yet nobody is aware of this,” said Lorraine Stiehl, Chief Executive Officer of American Liver Foundation. “It remains an enigma in the eyes of the public, healthcare providers, community groups and policy makers and that must change.”
“This article lays out what we call ‘Action Items,’ which are very specific and feasible measures that would go a long way toward addressing hepatitis D,” said Chari Cohen, DrPH, MPH, President of the Hepatitis B Foundation. “Our public health team, the American Liver Foundation, Hep B United and other organizations have been working hard on hep D awareness and education, but much more needs to be done, and more resources, particularly financial support, will be needed.”
In addition to identifying priority areas, the panel made specific recommendations on how to address these challenges such as improving and expanding education for different audiences, calling for simplified protocols for universal screening with reflex testing, expanding surveillance for hepatitis delta, requiring automated reporting and national notification, improving data sharing for research, and enhancing communications among different stakeholders.
“I am excited and encouraged by this document with its action items and priorities for hepatitis delta. We must remember that HDV is a vaccine preventable disease,” said Robert G. Gish, MD, Medical Director, Hepatitis B Foundation.
HDV can only infect people who are also infected by the hepatitis B virus (HBV); infection can occur simultaneously (co-infection) or after infection with hep B (super-infection). HDV is often called a disease amplifier because it causes HBV to progress more rapidly resulting in cirrhosis or liver failure, making it more deadly. The Roundtable Panel findings stress that the recent Centers for Disease Control and Prevention (CDC) recommendations for universal vaccination against hepatitis B and universal adult hepatitis B screening, and the anticipated availability of new therapies for hepatitis delta present a unique opportunity to focus attention on HDV. The Roundtable Panel urges prompt action to make significant progress in addressing hepatitis delta among individuals living with hepatitis B.
“Currently, there are no FDA approved drugs to treat HDV in the U.S. although new therapies are in development,” said Emmanuel Thomas, MD, PhD, Board Chair, American Liver Foundation. “This publication focuses on additional needs that must also be addressed to more optimally serve this neglected patient population."
About Hepatitis B Foundation
As the nation’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 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. 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 www.hepb.org/blog, follow us on Twitter, Instagram and Facebook (@hepbfoundation) or call us at 215-489-4900.
About the American Liver Foundation
The American Liver Foundation is the nation’s largest non-profit organization focused solely on promoting liver health and disease prevention. The American Liver Foundation achieves its mission in the fight against liver disease by funding scientific research, education for medical professionals, advocacy, information and support programs for patients and their families as well as public awareness campaigns about liver wellness and disease prevention. The mission of the American Liver Foundation is to promote education, advocacy, support services and research for the prevention, treatment and cure of liver disease. For more information visit liverfoundation.org or call:1 800 GO LIVER (800-465-4837).