May is Hepatitis Awareness Month – NVHR is going Back to Basics to raise awareness of hepatitis A, hepatitis B, hepatitis C, and hepatitis D. Click here to check out our other blog posts in the 2022 Hepatitis Awareness Month advocate series.
As part of Hepatitis Awareness Month, NVHR is celebrating the contributions advocates are making in raising awareness for viral hepatitis. Joe, a patient advocate, spoke with NVHR about living with the hepatitis delta virus (also known as HDV or hepatitis D), and why he decided to get involved in clinical trial research.
NVHR: What would you like to share with us about your journey with hepatitis Delta?
J: It’s been a long, strange trip. I contracted hepatitis B in the 1970s and didn’t know until the 1990s that I was still living with the virus and that it was chronic. It was surprising and shocking because it also meant I was infectious. Then I found out in the late 1990s that I had a co-infection with hepatitis delta, a virus that at the time, no one knew much about. I had to do much of my own research about hepatitis D, and I found out that HDV doesn’t have complete DNA, only RNA, which makes it dependent on the hepatitis B virus to replicate. Only people with chronic hepatitis B can become infected with hepatitis D. And hepatitis D is considered deadlier than the other hepatitis viruses, and there’s no effective treatment or cure for it.
My hepatologist told me that I had hepatitis delta. I wasn’t too alarmed at that point because I had no side effects from viral hepatitis since I first was diagnosed in 1977. I had a little bit of jaundice just for a few days, but nothing really bad. It was only in 2002 that my doctors told me that my liver was getting damaged, and I was on the verge of cirrhosis. That was very upsetting. I had tried so hard to keep myself safe from HIV, I had learned about hepatitis B, and I was leading a fairly healthy lifestyle, very little drinking, no drugs, and eating well. So, I had avoided HIV, but I had two infectious viruses, one of which was kind of an unknown. I felt so down at that point like I hadn’t escaped a serious illness after all.
In 2013, I saw another hepatologist who reconfirmed that I had HDV and there were no treatment or cure options for me. It was very bleak and I kind of went into denial. Then I reread her message and it was like getting water splashed on my face. I realized that I myself had to do something. I couldn’t wait ten to twenty years for something to come along. I went online and within a day had connected with the National Institutes of Health in Maryland and was approved to participate in a clinical trial for hepatitis delta. I made 70+ round trips to D.C. in a six-year period and got to see the inner workings of research and clinical trials. I felt like a citizen scientist. I had to record and report accurate observations of how my body was reacting to the treatment. I had always wanted to be a scientist and here I was helping the researchers.
Eventually, with the third combination of drugs that we tried in the clinical trial, my hepatitis delta count went to undetectable. I was told at the time that I was likely the first patient with HDV to ever reach undetectability with medical treatment.
But within three weeks of my HDV count dropping, my liver health took a nose-dive for the worse and I had to get off the study drugs a couple months early. It took several months to get back to feeling normal.
NVHR: We’ve made progress in raising awareness about hepatitis delta, but work remains. What are some ideas of ways to raise awareness about hepatitis delta?
J: Patients and their family caregivers can start by raising awareness for themselves and their own communities. In other words, do the research. Understand as much as you can about hepatitis delta. That not only helps you, but you’re going to find that a lot of medical providers really didn’t know that much about HDV. For the doctors I’ve worked with, I’m usually the first person with HDV they have provided care for.
So, after educating myself, I share what I’ve learned with the doctors, nurses, and lab technicians when appropriate. It may seem like doctors wouldn’t be receptive to patients telling them what they should know or what they should do. But they’re usually open to it because they really do care about you and want to help you.
NVHR: What are your priority actions as a hepatitis D patient advocate, i.e., what is most needed for the community?
J: Hepatitis delta advocates and others have an opportunity to help spread the word. There are a few things advocates can do to help, in addition to educating themselves and passing along what they have learned to medical providers and engaging your representatives.
First, learn the best sanitation practices to limit the possibility of infecting others and get the word out about hepatitis B vaccination. The CDC recently expanded their HBV vaccination recommendation to all adults. It’s the best way to get protection from HBV and HDV, especially anyone who’s sexually active and/or pregnant.
Encourage people living with HBV to get tested for HDV. There are drugs with minimal side effects that are effective in controlling hepatitis B, especially if treatment starts early.
People who have chronic hepatitis B with or without a hepatitis delta co-infection need to get serious about caring for their livers. I have been living with a coinfection for decades. I think the relatively slow progression of my liver disease is due, in part, to living as healthy a lifestyle as possible.
Finally, get involved in activism. Write letters to your congressional representatives at the local, state, and federal levels to educate them and urge them to fund research for HDV and HBV.
NVHR: What message would you like to share with other patient advocates about hepatitis delta?
J: There is hope. There are a few treatments that could be approved by the FDA this year. Speak up for yourselves, for your loved ones and for other coinfected patients who can’t speak up because of backlash and prejudice around viral hepatitis.
NVHR: What’s one thing you wish you knew when you started your hepatitis delta journey?
J: I wish I’d known at the start that I needed to be very strong and determined. I could’ve educated myself and others sooner. We must be our own advocates and work with doctors and researchers to figure this virus out and to save lives. I also wish that I and others hadn’t been so singularly focused on HIV/AIDS prevention that we couldn’t deal with other serious infectious diseases, including one that is preventable with vaccine.