Breaking the Silence for Change: Rav’s Journey to Hepatitis Delta Advocacy

Rav is a devoted husband, father of two and a finance leader at work. Amid building a loving home and his professional career – he is forced to manage life living with both hepatitis B and hepatitis delta, which has continued to present him with significant challenges.

“When I was a young child in Uzbekistan, I acquired hepatitis from a dirty needle during a regular vaccination. I was only 2 years old,” Rav shares. “Due to the limited knowledge about the disease, worry and uncertainty ruled my childhood. My parents spared no resources to treat my hepatitis, but the disease was stubborn. When I was 6 years old, doctors told my parents that my hepatitis B is chronic, and I will have it for the rest of my life. While my friends were outside playing carefree, I remained on the sideline and mostly stayed indoors.” So, Rav grew up focusing on his studies, eventually earning a scholarship that brought him to the United States. Later, life, love and work led him to Canada.

“On the surface, I’m your everyday neighbor with a family and professional job,” Rav says. “But I have what feels like a secret life dealing with hepatitis – going in and out of the hospital for care.”

Balancing his aspirations and the reality of his condition became increasingly difficult to navigate when he moved to Canada. During a routine visit, he filled out a family doctor’s intake form, checking a box that he was living with chronic hepatitis B.

“The moment felt casual. But when the doctor reviewed my answer, her face went pale. She immediately referred me to a liver specialist,” Rav recalls. After additional testing, Rav learned he was not only living with hepatitis B, but he also had hepatitis delta and cirrhosis.

Diagnosing Hepatitis Delta: Why Awareness Matters

Hepatitis delta is a liver infection caused by the hepatitis delta virus (HDV). HDV is known as a "satellite virus" because it can only by acquired by people who are already living with hepatitis B. Chronic HDV is considered the most severe form of chronic viral hepatitis due to more rapid progression towards liver-related death and liver cancer.

“It was clear from the moment I was diagnosed that knowledge and awareness about hepatitis delta is lacking. If I, an educated person who has lived knowing I have hepatitis B my whole life, didn’t know about hepatitis delta, then I’m sure others don’t know about it either.”

Unfortunately, testing for hepatitis delta is less common than it should be, even among people living with hepatitis B. Without clear diagnostic guidelines or best practices embraced across the healthcare provider spectrum, many individuals with hepatitis B are never tested for or educated about the possibility of being diagnosed with hepatitis delta. Physicians often lack the time, awareness and accessible pathways to request testing. And with no U.S. FDA-approved treatment in the U.S., there is limited knowledge about what to do after a positive diagnosis.

Patient Advocacy: Why Raising Hepatitis Delta Awareness Is Critical

“After finding out I had hepatitis delta too, getting the right specialist, consistent tests and follow-ups are a maze that I’m still trying to navigate. This is why I need to speak up, there’s not enough information about hepatitis delta out there.”

Rav started his advocacy journey by doing just that – speaking up. “If we speak up about our journey and struggles, others will be willing to do the same, and we’ll hopefully ignite change,” he reflects.

But Rav is candid about why few people come forward about living with hepatitis delta. He says there’s stigma, internalized shame and uncertainty about the future that comes with a positive diagnosis. For Rav, advocacy begins with honest conversations with our doctors, family members and policymakers. It means demanding better screening, comprehensive research and compassionate treatment.

“You have to advocate for yourself first,” says Rav. “You need to push, to ask questions, to insist on care.”

Hope on the Horizon: Advances in Hepatitis Delta Clinical Trials

Advocating for people like Rav is at the heart of Vir Biotechnology’s mission, and its efforts to deliver a new treatment option for hepatitis delta since there are still none approved by the FDA. Vir Biotechnology’s registrational ECLIPSE program is evaluating the promising combination of tobevibart and elebsiran, offering hope of a new treatment option for those diagnosed with this devastating disease.

“We deserve better options,” Rav says. “The more we share our stories, the more we break stigma. We must move forward toward a brighter future for people with hepatitis delta.”