This colorized electron microscope image provided by the Rockefeller University and NIAID shows a hepatitis C virion. (Maria Teresa Catanese, Charles M. Rice/The Rockefeller University, NIAID via AP)
Maria Teresa Catanese, Charles M. Rice / The Rockefeller University, NIAID via AP
According to the Centers for Disease Control and Prevention, more than 2 million people in the U.S. are infected with hepatitis C. The bloodborne illness attacks the liver and can lead to cancer or death if left untreated. Injection drug use is the leading risk factor for hepatitis C, which is also more prevalent in rural counties where diagnosis and treatment can be hard to come by, especially for people experiencing homelessness.
Scientists at Oregon Health and Science University demonstrated a new strategy that could significantly boost the diagnosis and successful treatment of hepatitis C in rural communities. In a recently published study, they showed that peers with lived experience in drug use were able to successfully enroll and facilitate treatment for people who tested positive for hepatitis C in six rural Oregon counties using telemedicine, which was seven times more effective than referrals to clinics for in-person treatment. Joining us to talk about the results and the role peer specialists can play to combat the spread of hepatitis C is Dr. Andrew Seaman, an associate professor of medicine at OHSU, the medical director of HIV and hepatitis C services at Central City Concern and head of substance use disorder programs at Better Life Partners.
Note: The following transcript was transcribed digitally and validated for accuracy, readability and formatting by an OPB volunteer.
Dave Miller: From the Gert Boyle Studio at OPB, this is Think Out Loud. I’m Dave Miller. We turn now to a promising approach for treating hepatitis C. More than 2 million people in the U.S. are infected with a potentially deadly blood-borne virus. Injection drug use is the leading risk factor. In a recently published study, scientists at Oregon Health and Science University found that peers with lived experience in drug use were able to successfully facilitate telemedicine treatment for people in six rural Oregon counties. That intervention was seven times more effective than referrals to clinics for in-person treatment.
Lead author Andrew Seaman joins us now to talk about these findings. He is an associate professor of medicine at OHSU, and the medical director of HIV and hepatitis C services at Central City Concern. Welcome to Think Out Loud.
Seaman: Thank you, Dave.
Miller: So this study focused on hepatitis C. How common is the disease among IV drug users and people who are homeless?
Seaman: Among people who inject drugs, it depends a lot on where you are. Probably somewhere between 10% and 40% of people who inject drugs in the United States have hepatitis C.
Miller: And what about people who are experiencing homelessness?
Seaman: It varies widely as well. Probably a relatively similar number, there are a lot of crossover risk factors. But very prevalent, 20% maybe.
Miller: Do prevalence rates of hep C infection broadly differ in urban areas and rural areas?
Seaman: Across the U.S., the prevalence in rural areas is slightly higher than the prevalence in urban areas. And this is striking because if you look at other major bloodborne pathogens or diseases like HIV, the prevalence is much higher in urban areas. So hepatitis C not only is as prevalent, but more prevalent in most rural areas than urban areas.
Miller: How do you explain that as somebody who is really focused on infectious diseases broadly?
Seaman: Injection drug use, all the social determinants of health that lead up to injection drug use, trauma related to economic disparities – all of those factors tend to be worse in rural areas. Also, the things that we know help prevent hepatitis C transmission, such as medications for opioid use disorder, like buprenorphine or methadone, and access to safe injection supplies at certain service programs, they tend to be worse in rural areas.
Miller: What are the potential health effects of hepatitis C?
Seaman: Hepatitis means inflammation of the liver [and] is often thought of as a liver disease, but it’s really so much more than that. Hep C is a systemic inflammatory illness. It is a virus that, once you develop a chronic infection – which happens in about 60% to 75% of people who are infected – hepatitis C can increase the likelihood of diabetes, it can worsen mental illness like depression or bipolar disorder and can lead to more than one different type of cancer.
Beyond the direct health effects, people who use drugs or people who inject drugs don’t get hepatitis C because they inject drugs. They tend to get hepatitis C in these highly stigmatizing situations. So you’re in an intimate partner violent situation and you don’t have access to any control over when or how you inject drugs. Or you’re in jail or prison, and you’re desperate and sick, or you’re in severe withdrawal and you ask someone to just borrow a rinse, which is what someone might mix up their drugs with just so they’re not severely sick anymore.
Having hepatitis C in your body, as someone who either does inject drugs, used to inject drugs or has some other risk factor, is this constant internal reminder of all of these highly stigmatized events in their past. And it can really stick with them. It affects relationships, it affects their likelihood to engage in substance use disorder treatment, and a number of other things. So hep C, it goes well beyond the tangible.
Miller: How effective is treatment for hepatitis C?
Seaman: Since about 2016, or a little bit earlier, we’ve had highly effective medications that are pills only – one to three pills per day – that have anywhere between a 95% and 99% cure rate. Prior to that, the treatments were very difficult. They were like chemotherapy essentially, and they weren’t that effective. So we really had a revolution in our ability to cure hepatitis C.
Miller: What are the barriers that can get in the way of that treatment or prevent somebody from seeking that treatment?
Seaman: One of the barriers can be insurance. In Oregon, until about 2021, we had these highly restrictive criteria for Oregon Medicaid to initiate on treatment. You had to be very sick and have advanced liver disease. You could only be treated by certain providers. You couldn’t be using substances. We have thankfully been able to move through those and we no longer have a prior authorization in Oregon, but they still persist in many other states.
But most of the barriers now revolve around the general barriers for care for people who may be houseless or people who use drugs. So health system stigma; inadequate access to transportation, phones or internet; mental illness and inadequate access to mental illness support; houselessness [and] all of the things that go along with that. Again, most of these different barriers are amplified in rural areas.
Miller: So this gets us to your new study. What did you set out to learn?
Seaman: One of the things that I think is important in this study is that we went to people who use drugs and we went to peers or people who had experience of substance use. And we asked them, what do you think will work? What’s important? What we learned is that we need to decentralize healthcare. We need to make the doctors, and the pharmacists, and the institution of medicine less important. We need to make the medications easily available to people, even if they don’t want to come into healthcare settings.
So we tried to figure out what would be an intervention that would allow for all of that, that would empower communities, peers and other people who use drugs to access treatment, without having to jump through all of the sometimes stigmatized and challenging healthcare systems that they otherwise have to engage with? We wanted to figure out, can we treat hep C without anyone ever having to go into a clinic, and really empower peers, other people with histories of substance use to lead the way?
Miller: How did you find subjects?
Seaman: The OR-HOPE peer hep C study [Oregon HIV/Hepatitis and Opioid Prevention and Engagement study] is based in six rural Oregon counties that were part of an earlier study. That looked at trying to figure out how we implement peer support in helping prevent hepatitis C, and helping to engage people in substance use disorder treatment and harm reduction. So these peers were already there on the ground in all of these counties, had relationships with others and people who use drugs, and were already running syringe service programs and engaging with people in homeless camps, and in the community in general. So in the process of their work, while engaging with people and supporting them through their lives, the study began to test people for hepatitis C in the community, and offer them access to the study.
Miller: What kinds of offers of care did these two randomized groups then receive? So everybody here, you’d already found out that they had tested positive for hepatitis C. And to get that testing, if I understand correctly, they’d already had some interactions with peer support providers. And then they were randomized, and they could get two different versions of potential care. What were the offers?
Seaman: Once the peers had confirmed hepatitis C, including taking all of the participants to the lab to get a number of different blood studies done, they would offer them either randomization to what we call enhanced usual care … which is, a peer would help a participant go to a local health clinic that we knew offered hepatitis C treatment in their community.
Versus the intervention arm – what we’re talking about here today – which is direct contact, via telemedicine, with a provider who the peer could vouch for and who [they] knew personally, in Portland at OHSU. And the peer would literally go out to their trailer, to a homeless camp, anywhere in the community. They would whip out their phone or maybe an iPad. They would initiate a telemedicine call with the provider and immediately have a visit. Then [they] organize for the medications to be sent either directly to the person (if they had housing) or to one of the organizations that the peer works for, where the medications could be stored in a locker and the participants could access their medications there.
But it didn’t stop there. They also supported them in adherence, so they supported them in taking their medications. They helped them talk to the doctor again if they had any side effects or other issues. They helped them sometimes with supportive housing during their hep C treatment. And then at the end of the study, they would go find folks in the community and complete a blood test to make sure that the participant had cleared their disease.
Miller: What were the differences in the uptake rates in terms of the two offers of treatment? And both of them are relatively high-touch, right? Taking somebody to a clinic takes a fair amount of person-power. But what were the differences in terms of the likelihood of somebody with hepatitis C taking these peer support specialists up on these different offers?
Seaman: Yeah, so the folks who were randomized to the peer telemedicine arm that I just described, 85% of them started on hepatitis C treatment. Which is not just high compared to the comparison group, but it’s high in all of the studies that we’ve done in the past, nationally and globally, on treating this population for hep C. Compared to just 12% of the people in this enhanced usual care arm, people who had facilitated treatment in the local community clinics. So roughly seven times more people were started on treatment.
Miller: And what did that eventually translate to in terms of clearance of the virus? In the end, it’s that number that I suppose a public health expert would care most about. Are people actually being cured of this infection?
Seaman: Yeah, so 63% of all people randomized to the tele-hep C arm were cured of the virus at the end of the study, as compared to just 16% in the enhanced usual care arm. So that’s four times more. And like you said, this is really about hepatitis C elimination. This is about, how effective is the intervention itself? One of the things that sets the study apart … most studies only look to see, did you clear the virus or not, if you started on treatment? But we’re not only saying 63% of the people who started on treatment were cured. We’re saying 63% of the people who were exposed to this intervention, who were offered treatment through this telemedicine approach, were cured of the virus at the end of the study. And that’s a really profound number in this field.
Miller: What do you think made the difference here? Because the way you controlled for this, it seems significant. You already had a peer support person there no matter what. There was an existing relationship – that’s how you found these people to begin with. And that person, if I heard you correctly, they were going to take someone to a clinic. So even in the clinic version, there was still a trusted person with them.
Is the biggest difference the time here, the offer that, “Hey, right now I have an iPad, I have an iPhone, I can get you help right now,” as opposed to, “We’ll go tomorrow”? What do you think is the crux of the difference?
Seaman: Yeah, well, there’s several factors. I think one of the things that’s tough about this study is that it’s complicated. The biggest thing is the involvement level of the peers in the peer tele-hep c intervention arm was much, much higher. They would get them in directly with the provider, which probably was the single most important piece, that immediate access that you talked about.
But it’s not just any provider. This is a provider that the peer has weekly meetings with, that they know they’re trauma informed, that they’re going to treat them with kindness, they can really vouch for them. And they can have that visit right there, or maybe a few hours later, but in the community. They don’t have to go into any healthcare setting. And they also helped them get their medications, and they helped them do all of the other factors that are so challenging for even people like me, with a medical degree, to navigate.
On the other hand, when you’re referring someone to a local clinic … And they would try to take people to these clinics, but you can’t get an appointment tomorrow. Maybe it’s in a month-and-a-half. Maybe that participant has a bad relationship with the clinic already. There was only one of them and they didn’t like the doctor there because they judged them last time. Maybe they felt they were judged last time they went in to receive care there. Maybe their cousin is there, and they don’t want their cousin to know – these are small communities – that they maybe have risk factors for hepatitis C. And then there’s transportation. So even if the peer offers to support them with transportation, it’s still hard to track people down, it’s hard to find them again.
So that immediacy is really important. And then the trusted providers and the ease of access to those providers coming from the community, not ever having to step foot in a healthcare setting, is really important.
Miller: What would it take to scale this up – to have all of these things that were a part of an experiment design be built into the fabric of, let’s just say, rural healthcare; to have peer support specialists make contact with IV drug users or people living outside; to get them testing; to get them set up with a telehealth appointment with a trusted person who is trauma-informed; and then, to follow up and get the medicine? What you’re talking about is almost like, I don’t know, roving concierge medicine for a very specific population, with very specific needs. How could that become the norm?
Seaman: The first piece is we need that infrastructure of peers. Peers are so important for so many reasons, but one of them is that these peers specifically, for instance, came largely from the communities they served. But that’s not a rarity. There are thousands of people who used to use drugs, who are living in communities across the country. The training to become a peer is important, but it’s not that substantial. It’s not that much time. This is a really wonderful use of time for people who want to get back to their communities, who have a history of substance use. So the potential for these networks of peers is absolutely there.
But what we need is some funding for that. And peers, frankly, they’re not that expensive. We should pay them more than we do. But the value of paying for people like peers is so much higher than just hiring more and more nurses and doctors, in my opinion.
On the side of the providers, that’s also a pretty low barrier lift. All you need is a Zoom account and you need to find just a handful of providers anywhere in the state who are willing to set aside some time to do this work. The telemedicine piece is worked out. It’s not that hard to set up. The peer networks are worked out, but you need to find the funding to set it up.
But I think this goes way beyond hepatitis C. I think this is really a community healthcare worker model, which we tested across Sub-Saharan Africa for HIV treatment. It’s not that new. It’s the combination of these approaches that I think is new and really important.
The other piece to remember here is that even though we’ve talked a lot in the past about how expensive hep C treatment is, hepatitis C itself is extraordinarily expensive. Before COVID, it killed more people than any other virus in the United States. People with hepatitis C, a small percentage of them, go on to develop end stage liver disease, liver cancer, and leads to very, very expensive things like liver transplants that cost $250,000 to $500,000 dollars apiece. So actually, treating hepatitis C and interventions like this saves money. The Biden administration proposed a hepatitis C elimination plan that costs billions of dollars, which is still working its way through Congress. But it’s one of the few interventions that’s been proposed like this that will save money over time.
So there are lots of opportunities and different ways we can fund this. We just have to make the decision to do it.
Miller: What do you want healthcare providers to take away from this study? You started by saying that one of the big lessons of this is you need to decentralize healthcare. What do you want your fellow doctors and nurses to actually change?
Seaman: We, in healthcare, need to recognize that we play a role, but we are way less important than we think we are. All we really need to do is know how to do our job, but then show up with kindness, show up with deference, don’t pretend that we understand the lived experience of the people we’re serving, when they live dramatically different lives. And we need to build up people who have that experience, who do know what it’s like to live the life of someone who’s houseless, who is living in a part of Oregon or the country that really stigmatizes people with substance use disorders. Peers have a PhD in what it is to live the life of someone who injects. drugs, and we need to recognize that, we need to build them up, and we need to tell them how important they are and listen.
Miller: Andrew Seaman, thanks so much.
Seaman: Thank you.
Miller: Andrew Seaman is an associate professor of medicine at OHSU and the lead author of a new study that found a really promising approach for treating hepatitis C. He is also the medical director of HIV and hepatitis C services at Central City Concern.
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