Building the Path Forward for People Living with Chronic Hepatitis Delta: Improving Care and Treatment Outcomes

Since first discovered in 1977, hepatitis delta has remained the most overlooked and aggressive form of viral hepatitis, often advancing faster than healthcare systems can identify and treat it¹. Global public health experts, clinicians and advocates recently gathered at the World Hepatitis Summit to address critical challenges in hepatitis elimination, with a session focused on chronic hepatitis delta (CHD) care. Panelists discussed gaps in diagnosis and linkage to care, and the need for treatment strategies centered on meaningful patient outcomes.

“There’s a huge gap in terms of awareness and education, both at the healthcare provider level and community level,” said Yasmin Ibrahim, MD, PhD, senior public health program director at the Hepatitis B Foundation. “There’s also no universal standard of care for hepatitis delta testing.”

Panelist Su Wang, MD, senior advisor, global health, Hepatitis B Foundation, pointed to increased testing as a critical need, “We need to make sure patients with hepatitis B get tested, and we also need to develop better delta tests and make them streamlined to include double reflex testing.”

Ibrahim emphasized that improving CHD diagnosis must be paired with expanding and strengthening linkage to care. She referenced that too many people are diagnosed late in the course of disease progression or are lost to follow-up before receiving specialized care, monitoring, or access to clinical trials and emerging treatment options. Ibrahim pointed to direct outreach at diagnosis as an important first step, so people with hepatitis delta connect with specialists as early as possible.

“Out of the 168 patients we identified with hepatitis delta, we’ve seen around 60. They are lost in follow-up. We need to do better,” said Mark Sonderup, BPharm, head of hepatology and professor of medicine at the University of Cape Town, while discussing the challenges of identifying and reconnecting patients to ongoing care after diagnosis.

Panelists underscored the need for greater education amongst providers, including CME-accredited training for healthcare practitioners, particularly as survey findings have shown a lack of knowledge and confidence around hepatitis delta even among specialists.

As the conversation turned toward treatment strategies, panelists and audience members discussed the growing focus on achieving undetectable virus - or “target not detected” - as the most clinically meaningful efficacy marker for people with CHD. Experts noted that achieving undetectable virus is critical when assessing treatment decisions.

“The main purpose of the treatment is to get people to target not detected,” said Sonderup, emphasizing the role of achieving undetectable virus in the management of hepatitis delta.

At the same time, speakers stressed that laboratory markers alone do not define success for people living with CHD. The session closed on a shared call to action to continue elevating hepatitis delta within the broader global hepatitis conversation and to keep the needs of people living with hepatitis delta at the center of future progress.

“There needs to be a better understanding of the lived experiences of people living with hepatitis delta,” said Ibrahim. “It’s very important to keep their needs in mind so it doesn’t turn into caring about only biomedical markers.”

¹ Hepatitis delta: virological and clinical aspects | Virology Journal | Springer Nature Link