Recent research has shed light on the significant impact of hepatitis delta (HDV) on patients’ quality of life (QoL), highlighting an urgent need for enhanced screening and greater public awareness. In a presentation at the American Association for the Study of Liver Diseases (AASLD) The Liver Meeting 2025, Chari Cohen, DrPH, MPH, a professor at the Baruch S. Blumberg Institute and president of the Hepatitis B Foundation, emphasized the prevalence of physical symptoms in HDV patients, even among those without fibrosis or cirrhosis.
Cohen’s findings indicate a growing recognition of HDV’s severity, particularly after the International Agency for Research on Cancer classified the virus as carcinogenic to humans in June 2025. As HDV relies on the hepatitis B virus (HBV) to thrive, individuals infected with HDV face a compounded disease burden, often accompanied by additional health complications.
The correlation between HBV/HDV co-infection and severe liver-related outcomes is well-documented. Studies reveal that patients with this dual infection are at a 2-6 times higher risk of developing liver cancer compared to those with HBV alone. Cohen stated, “For the public, there’s just an utter lack of awareness… Many don’t appreciate the true burden and impact on people who live with hepatitis delta.”
The data shared at AASLD stemmed from a survey conducted using Qualtrics, which gathered responses from 72 individuals across 25 countries. The survey targeted participants aged 34 to 54, predominantly from Pakistan, the United States, and the Philippines, with a significant male representation (71%).
The survey revealed that a significant majority, about 70%, reported experiencing HDV-related symptoms. Common complaints included fatigue (69%), abdominal pain (41%), muscle or joint pain (38%), and loss of appetite (38%). These symptoms significantly impact daily life, as evidenced by 27% of respondents rating their symptom severity at a level of 7 on a scale of 1 to 10.
Treatment patterns showed that 50% of participants had been prescribed medication for HBV, while 65% received treatment for HDV. Qualitative interviews with 13 participants further elucidated the lifestyle challenges faced by those living with HDV, including difficulties with concentration and stigma-related concerns.
Participants also reported financial burdens, such as reduced job performance, alongside mental health issues like anxiety, depression, and despair. Healthcare access emerged as a critical concern, with respondents noting strained communication with providers and limited availability of treatment options.
Cohen stressed the importance of improving care for those with HDV, stating, “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.” She advocated for more comprehensive recommendations and access to affordable screening and testing in the United States.
She acknowledged that current risk-based screening recommendations complicate the process for both patients and providers, adding to the overall burden. The necessity of integrating patient-reported outcomes and quality of life measures into the clinical care pathway was emphasized, demonstrating a holistic approach to managing HDV.
Cohen’s disclosures include affiliations with Gilead Sciences, GlaxoSmithKline, Vir Biotechnology, Dynavax Technologies, and Roche. The insights presented at AASLD not only underscore the complexities of living with HDV but also call for urgent action to enhance patient care and support systems for those affected.
