Joe's Story
After being diagnosed with hepatitis B, Joe didn’t seek regular monitoring because his doctor didn’t provide information about what his diagnosis meant. Years later, he learned that his liver was inflamed and that he was also infected with hepatitis Delta, a serious coinfection of hepatitis B. Joe began to learn as much as he could about his coinfection, and after discovering that treatments were limited for hepatitis Delta, he joined the only clinical trial available at the time. Although Joe had to discontinue the trial early, his health is now stable, and he is glad he has been able to contribute to important research. Even after his difficult journey, he is still hopeful that better treatments, and even a cure, are on the way.
Discussion Questions and Answers:
What led Joe to initially put off seeking follow-up care, after he tested positive for hepatitis B? (His doctor did not educate him about hepatitis B, or let him know that he should be monitored by a doctor.)
How did Joe become his own healthcare advocate? (He did his own research after receiving very little information from his doctors, talked to his loved ones and community about his hepatitis, and found a clinical trial to join so that he could be monitored and treated by doctors who were more knowledgeable about hepatitis delta.)
What does Joe wish was available in the 1970s, before he contracted hepatitis B? How would this have changed his story? (The hepatitis B vaccine. It could have prevented both hepatitis B and delta.)
After watching Joe’s video, what might you tell someone who is living with hepatitis B? (Get tested for hepatitis delta, and be your own healthcare advocate.)
Joe’s Clinical Trial Story
Joe is a #justB storyteller who has been living with hepatitis B since 1978 and later learned he was coinfected with hepatitis delta, prompting him to seek a clinical trial when no treatments were available. When his doctors did not mention research options, he independently searched for and enrolled in a multi-phase trial, communicating directly with the study physician to understand the protocol and expectations. Over six years, he traveled more than 70 times to the NIH, often alone, undergoing frequent fasting visits and extensive blood testing. Joe emphasizes that participants should ask difficult questions, communicate side effects, and remember they can leave a trial at any time if circumstances change. He also stresses the importance of hepatitis delta testing for people with chronic hepatitis B and highlights the Hepatitis B Foundation as a vital source of support and guidance throughout his journey.