New Insights on the Burden of Hepatitis Delta, With Chari Cohen, DrPH, MPH

New research aids clinicians' understanding of the impact of hepatitis delta (HDV) on patients’ quality of life (QoL) and emphasizes the need for broader screening, increased provider and public awareness, and the holistic integration of mental, social, and financial support into HDV care.1

Chari Cohen, DrPH, MPH, a professor at the Baruch S. Blumberg Institute and president of the Hepatitis B Foundation, presented the data at the American Association for the Study of Liver Diseases (AASLD) The Liver Meeting 2025, and highlighted the prevalence of physical symptoms, even in patients without fibrosis or cirrhosis, and the importance of raising awareness of the psychosocial impacts of HDV to improve overall patient QoL.

Understanding of the severity of HDV continues to evolve, with the International Agency for Research on Cancer classifying the disease as carcinogenic to humans in June 2025. Since HDV can only exist in individuals infected with the hepatitis B virus (HBV), dependent on the HBV surface antigen to create its own outer protein coat, patients with HDV are inherently living with comorbidities and a greater disease burden.

Previous studies have linked the HBV/HDV coinfection to a higher risk of severe liver-related outcomes, including liver decompensation, hepatocellular carcinoma, liver transplantation, and death. Patients living with these diseases are at 2-6 times higher risk of liver cancer compared to HBV monoinfection.2,3

“For the public, I think there’s just an utter lack of awareness, and if you ask most people in the world or the US what HDV is, they just won’t know. Among clinical providers, there are definitely misconceptions, and some don’t appreciate the true burden and impact on people who live with hepatitis delta,” said Cohen in an interview with HCPLive. “We’ve perpetuated this for many years, saying ‘Well, hepatitis B and HDV are silent diseases.’ That’s not really true. People living with HDV who don’t show clinical evidence of liver damage still feel the impact.”

The findings presented at AASLD were based on a Qualtrics-generated survey with questions developed from prior literature. The survey was distributed through social media, newsletters, Google ads, and website postings. Virtual, in-depth qualitative interviews were conducted with interested survey participants and analyzed via Dedoose using grounded theory to describe QoL impacts.

There were 72 survey respondents from 25 countries, between 34 and 44 years of age (31%) and between 45 and 54 years of age (27%). A majority of participants came from Pakistan, the United States, and the Philippines, while 71% of respondents were male. A total of 13 participants completed qualitative interviews, most of whom were male with an average age of 42 years; 50% were from the U.S. and Pakistan.

In the survey data, investigators found a majority of patients (70%) experienced HDV symptoms, including fatigue (69%), abdominal pain (41%), muscle or joint pain (38%), and loss of appetite (38%). On a severity scale ranging from 1-10, 27% of participants ranked their symptoms as a 7, underscoring the disease’s impact and burden. Overall, 50% had been prescribed treatment for HBV and 65% for HDV.

In the qualitative interviews, participants reported lifestyle impacts such as difficulty concentrating and concerns about stigma. Investigators also identified financial challenges, such as reduced job performance, and mental impacts, including frequent anxiety, depression, despair, and fear. Healthcare-related concerns included strained communication with providers, limited access to treatment and care, and ongoing hope for a cure.

"We need to do a better job of improving the entire care cascade for hepatitis Delta by making sure that people with hepatitis delta are diagnosed. We need to have better recommendations and access to affordable screening and testing for hepatitis delta in the US,” said Cohen. “Especially since the recommendations are risk-based screenings, which are very hard to implement, and add a level of burden for both the provider and the patient. We need to do a better job incorporating patient-reported outcomes and quality of life into the clinical care journey that a person lives through."

Editor’s Note: Cohen reports relevant disclosures from Gilead Sciences, GlaxoSmithKline, Vir Biotechnology, Dynavax Technologies, and Roche.

References

1. Chari C, Beatrix Z, Shreya K, et al. Understanding Quality of Life Impacts of Hepatitis Delta Virus. Abstract presented at: American Association for the Study of Liver Diseases (AASLD) The Liver Meeting 2025; November 7-11, Washington, DC.

2. World Health Organization. WHO urges action on hepatitis, announcing hepatitis D as carcinogenic. Who.int. Published July 28, 2025. Accessed November 9, 2025. https://www.who.int/news/item/28-07-2025-who-urges-action-on-hepatitis-announcing-hepatitis-d-as-carcinogenic

3. Furquim d’Almeida A, Ho E, Govaerts L, et al. Severe Liver‐Related Outcomes in Patients With Hepatitis Delta: Results From a Multi‐Ethnic Multicenter Long‐Term Follow‐Up Study. Journal of Viral Hepatitis. 2025;32(2). doi:https://doi.org/10.1111/jvh.14060