Expansion of Community-Based Interventions for HCV

At the Core of Care

Published: November 29, 2021

SARAH: This is At the Core of Care. A podcast where people share their stories about nurses and their creative efforts to better meet the health and health-care needs of patients, families, and communities. 

I’m Sarah Hexem Hubbard, Executive Director of the Pennsylvania Action Coalition and the National Nurse-Led Care Consortium.    

As part of our Housing is Health series, this episode is about community-based hepatitis interventions for HCV or the Hepatitis C Virus. We’ll be hearing about one effort in Philadelphia where nurses and patient navigators collaborate to test and treat HCV.

According to the Centers for Disease Control and Prevention, injection drug use accounts for up to 70% of new HCV cases in the United States.

If treated, however, most HCV cases clear up in eight to twelve weeks through the use of oral antiviral medication and primary care provider oversight. Prior to 2011, that was not the case. HCV treatment was managed by an infectious disease or liver specialist and required 24 to 48 weeks of a combination of weekly injections and oral medication with severe side effects.    

As we’ll hear, the switch to all oral antiviral treatment has been a game changer and allowed for more community-based HCV treatment. 

Joining us for this conversation is Bibbi Stokes, an infectious diseases nurse manager in Philadelphia. She is an experienced population health manager and works with the Public Health Management Corporation, which runs five federally qualified health centers.   

Welcome Bibbi to At the Core of Care.  

BIBBI: Thank you, Sarah, thank you for having me.  

SARAH: Before we dive in, tell us a bit about how you became a nurse and what led you to population health and specializing in infectious diseases?  

BIBBI: I became a nurse totally by accident. It was 100% accidental I always wanted to be an advertising executive. I was going to make commercials for the Superbowl. That had been my dream since kindergarten. And in high school, I started volunteering for HIV and AIDS efforts and that volunteerism turned into a career. I worked on a project in Africa in the early 2000s. And when I came home, I decided that I wanted to be more involved with care. And that's when I went to nursing school.

SARAH: And how did you end up in your current position overseeing the Hepatitis C treatment? 

BIBBI: So, I've worked in infectious diseases since 1998, HIV and Hepatitis C has been closely cared for together under infectious disease physicians, and sometimes like you said with hepatologists. So, after my years of experience working with some of the best infectious disease physicians in South Jersey, I applied for the job at PHMC. I live in South Jersey, and that's how I ended up here. So, I oversee all the programs related to HIV, Hepatitis C, COVID, and infection control for PHMC.  

SARAH: I'd love to hear a little bit more about what is an infectious disease nurse? What qualities come with being an infectious disease nurse, and what have you kind of picked up along the way?  

BIBBI: Prior to the HIV pandemic, no one knew about infectious disease physicians. They only work in very rare cases. So, a lot of them were hidden. So, I didn't know much about it either. But during my work in HIV, I worked in a practice where we were in full infectious disease practice. So, we did travel medicine, you know, immunizations, for people who are traveling globally. We treat all the Hepatitis's, HIV, some lupus, people have different things, you know, parasites, fun fungus. So, there's a plethora of disease states. And then also when a lot of times, if you go to the doctor, you have something going on and they can't figure it out. That's when you go to an infectious disease physician.

SARAH: So, you've been working in the HCV space for about a year now, right. And you have extensive experience as we just heard managing infectious diseases. So, before we hear about the specific work you're doing, can you first talk about how Hepatitis C has historically been treated? And how the big switch to oral antivirals has, you know, been a game changer? How has it changed outcomes for the better?   

BIBBI: It is a very big thing. So Hepatitis C first began being treated around the same time as HIV, because they're both caused by viruses. The way that your body naturally fights diseases is it creates interferons, which is a protein that fights viruses. So the first treatment was interferon. It was a recombinant interferon that works like the interferons that you naturally produce. However, it was an injectable. The treatment was very long. The side effects were very severe. And it didn't work well. The cure rate was something like less than 20%. So a few years later, they started to add an anti-viral medication. And keep in mind that this was all happening along with the HIV pandemic. So as new drugs are being created for HIV, and they were learning new things about the HIV virus, they were also learning new things about the Hepatitis C virus. So they learned that adding the anti-viral helped increase a person's chances of getting to cure for Hepatitis C. So they added Ribavirin. And then they created the Pegylated Interferon, which it's just a glycol. It adds extra molecular weight to the medication. So once the medication is injected, it has more time to get where it needs to go and do what it needs to do. So that kind of increased the cure rate as well. But it still wasn't very high. I think it maxed out somewhere like 50%. And the side effects that went along with the treatment, which was like almost nine months, was so severe to some people, they lost their hair. And then Hepatitis C is something you don't feel. So you went from feeling well, and then they tell you something is wrong with you. And then they're treating it and you feel terrible. So it was just a not a nice time to be treated for Hepatitis C. 

SARAH: And as we heard at the top of the show, Hepatitis C is most prevalent among drug users often being contracted from sharing needles. In Philadelphia, some of your outreach efforts are concentrated on direct community outreach in areas where drug users are often found. So can you tell us a little bit about the work you've been doing with the Philadelphia Hepatitis Outreach Project or P-HOP to screen for HCV?   

BIBBI: The P-HOP program works very well in the community to target areas of high risk. So what they do is they go out to recovery centers, shelters, day programs, or even just geographic areas that are highly concentrated with IV drug users. And they perform screenings in the field, point of care tests in the field. And if the point of care test is reactive, they also can do a blood draw in the field. For every patient that comes back with a positive screening, that person is linked to one of our patient navigators. We have five federally funded health centers in the city, and our patient navigator connects with that patient. They're supposed to go to the clinic with the person and explain to them what exactly is about to happen, and prepare them for Hepatitis C treatment, if they choose so.  

SARAH: And is that one-time or ongoing?   

BIBBI: So patient navigators, it's usually that initial time. And then if the patient has any kind of questions or needs to link with them during the process, they can. But most of the time, once the treatment is started, the patients usually connect with a nurse at the clinic, and they keep the relationship with the nurse.  

SARAH: So in terms of the outreach, obviously, you're in Philadelphia, are there specific neighborhoods where you're focused or particular locations where you're really doing that outreach?

BIBBI: Well, currently P-HOP is in the Kensington area, so a lot of their outreach is in the Kensington area, which is one of the larger needle-sharing neighborhoods in the city. And then we also have one of our clinics is at Congreso, it's in that neighborhood. So a lot of the patients are able to go there it's a walking distance for them to get care.

SARAH: So through this relationship at the same time, what other social determinants are you addressing to sort of optimize the outcomes related to the HCV treatment? Obviously, with a population that's heavily revolving around drug use, there are probably other issues, right, around addiction, stable housing. So how do you weave that in?  

BIBBI: Our clinics do have M-A-T, which is medically assisted treatment for people who have a substance use addiction. And so we can treat them at our clinics, both for the substance use and for the Hepatitis if they so choose. But other determinants, you know, people tend to be of a lower socio-economic class. Homelessness is a very big problem. The Hepatitis C medications are very expensive. They're usually delivered through a specialty pharmacy. And if a patient doesn't have a place to live, where are they going to receive these drugs? How are they going to complete this therapy? So those are things that we think about. We link them to as many programs to help them as we can. Some people, it used to be a deterrent if a person was still an active substance use. But sometimes people will pause while they get treatment or they say, you know, this is something that readies them to stop the substance use and to get other helps in their life. So sometimes being diagnosed with Hepatitis C can help someone along the path to recovery. So we deal with the patient as a whole, even if, once they complete the treatment, they're still a patient.   

SARAH: And obviously, you're not talking about years long treatment. But even, you know, eight, twelve, weeks of consistent treatment. How do you keep people engaged? Could you tell us a bit about like some of the challenges you see and how you try to address those.  

BIBBI: So some of the challenges are, of course, a person is still an active substance use and homeless, or either one or a combination of both. Those are the highest of the hardest patients to engage, because you don't know where they are. They are sometimes street sleepers. And when you're an active substance use, your first mind is how am I going to get the drug first. So sometimes they will sell their cell phones, and it's hard to get in touch with them. So during the intake process, we try to get as much information as we can from a person. Where do you hang out? Who's your friend? A lot of times grandmoms, they still live in the same house for 50- 60 years, you know that they're going to be there. So we try to gain as much information as we can. So that we're able to contact them during the treatment. Because there's some things that you have to do before you get treated, during the treatment and then the monitoring after the treatment.

SARAH: Can you sort of walk us through what a situation would look like in this sort of outreach, this initial screening? What that looks like?

BIBBI: So a person will come in and speak to the screener. They ask a certain level of questions out first, like, do you know what Hepatitis C is? Have you ever heard of Hepatitis C? They assess their risk for Hepatitis C. Largely, they are speaking with substance users who, even if they're tried to be safe, tend to share needles, if they get into a situation where they feel like, you know, they're desperate like, oh, it's no big deal. I know this person, you know. So even though there are safe syringe access programs around, people still share needles. So they ask them some questions and ask them if they would like a point of care test. A point of care test is like a finger stick, very similar to the way we measure blood glucose in an office visit. We prick your finger. We take a drop of blood. It takes about 20 minutes to process one line negative, two lines positive kind of thing, almost looks similar to a pregnancy tests. If that test is reactive, we don't say that you have Hepatitis C. That's when we draw the labs because only the bloodwork will tell us what is actually going on. You can have a reactive point of care test and your body, some people, maybe like 25% of the people are able to clear Hepatitis C on their own. Like I said, in the beginning, your body naturally creates interferons to kill off viruses. And some people do clear the virus on their own. So if the test is reactive, it is not a diagnosis for Hepatitis C. It causes us to draw the labs and the labs come into our clinics. So that's when the person who was out doing the screening in the testing connects with the navigator. So the navigator is expecting the patient, making the physician alert that the labs should be coming in, so that we can look for them and get them in the office for a visit to discuss their lab work and next steps.  

SARAH: Within a population of drug users, what is the reality of ongoing drug use? And how does that impact HCV treatment?  

BIBBI: I don't have specific data, but in our in our day to day work life, it is an issue. Like I said, people who are in active substance use their first mind and even they will tell you their first mind is how am I going to get the drug today? I need this much, how am I going to get it? But we do have patients who actually go through the treatment process still with the substance use. It happens. And we do have patients that tried to put it on pause. They do the best that they can because their health is that important to them. They feel like, since the success rate for cure is so high, this is their opportunity to get it, they won't have to worry about it again. And then they can go back on with their life. And then we have some people, it's through the treatment process, they actually get into recovery. So we have seen a spectrum of things that can happen for a person that is a substance user getting into Hepatitis C care.  

SARAH: And so while someone's being treated, do you, do you test regularly?  

BIBBI: Absolutely.   

SARAH: To how they're responding? 

BIBBI: Yes.   

SARAH: And then what does it look like at the end of treatment?  

BIBBI: So in order to start treatment, you have to have certain labs and they stage your liver, because everyone is not eligible. Because if the disease is so far advanced, you're not eligible for treatment. So there's testing prior to starting treatment. And then there's testing every four weeks during treatment and after. Say, if you're an eight-week plan, you get all your tests before. And then you know, we a lot of patients, if they don't have insurance, we work with social workers and case managers to get the patient insured, signed up for Medicaid or the Affordable Care Act. Some people are veterans, and they have services available to them that you know, they weren't using. So that's one of the first things we do. And according to the insurance, we have to follow the steps to get them approved. So it's a pre-authorization process. And they need labs for that. We explain exactly what's happening in the labs, what we're checking for. And then they start treatment after they get labs in two weeks, four weeks, and then every four weeks after treatment, two more weeks after the treatment has ended. And then four weeks, six, and then it goes further and further out. And they just keep checking to make sure that they're not reinfected.  

SARAH: And so it sounded like the patient navigators are really critical in that first phase in terms of outreach and sort of getting folks into treatment. And then I think you said that education, that a nurse is really kind of providing that ongoing education. 

BIBBI: Yes.   

SARAH: Are a patient navigators involved at any point in the ongoing treatment or connection to other resources? 

BIBBI: No, patient navigators or a nurse and sometimes they’re nurse navigators. Their job is really to help a patient feel comfortable in the health system. A lot of people don't like going to the doctor. They don't understand what's going on. They think that we want too much of their time. It's too much time for them to hold on the phone to try to get things taken care of. So the navigator helps with those things to make a patient feel comfortable in receiving the care. If the patient disappears, we call on the navigator, because they've established a relationship, a rapport with that patient, they'll probably say, Oh, they hang out here, navigators are not restricted to their desk, they can go out and find a patient, talk to people that they know, so that we can kind of like boots on the ground, and then go with that patient back to that appointment. So they do play a very, very integral role in the process. And a lot of patients, they remain patients, most of them. And you know, it could be five years later, and they still rely heavily on their patient navigator.  

SARAH: We'd love to hear any final thoughts you have about the work you do and what you want listeners to take away when they think about community-based care.  

BIBBI: One thing I appreciate about community-based care and I just want to say that I am a nurse, I am a working individual. My doctor is also at an FQHC. I still go to an FQHC. There are so many resources, they have so many things to help people stay connected and get well. And so we have things like case managers patient navigators, social workers, who have relationships with other programs that are in the city. So we can do warm handoffs to a housing program, to a recovery program, get helping you with transportation to and from your appointments. Because if you have to go to an appointment every two weeks, it gets expensive, people don't always have transportation to get there. So you have the helps that you need in FQHC. And I just like to remind people that we work hard, and we really do care about patients. I always say, take it easy on them, and take it easy on yourself, you know, because patients don't always do what you want them to do. And sometimes we do the most expecting a great outcome, and it doesn't work out. But we go back and do it another day. And we just keep trying is a team effort. Everybody has to contribute something, and it's hardest on the patient.  

SARAH: Yeah, and I'd love to just, you know, hear you expand on that a little bit, both with the HCV program, with the community of patients that the FQHC serve. There are a lot of social determinants of health that are weighing upon them. Housing, of course, the topic here, but really many compounding factors. So how does that look, when you're designing treatment plans or reaching out to patients? How do you take that into account?

BIBBI: We have to meet patients where they are, and we have to accept what the patient says is most important to them. And that's why I say, you know, take it easy on them and take it easy on yourself. And to us, we're saying I have this dream, I have this great thing for you. But if they're not ready for that, they can't receive it right then. And so if you continue to work with the patient, to help them through some of the other social determinants of health, helping them with housing, helping them with getting mental health treatment, you know, helping them reconnect with other family members, you know, things like that, then they can be ready for such treatment. And so sometimes, like I said, things don't go the way you planned. But you know, we just keep going, just another day to tomorrow, it could be different. So we do have a plethora of resources available. And we use our case managers or social workers, our navigators to keep patients connected to as many things as they qualify for. And then of course, the COVID-19 pandemic doesn't make things any easier. 

SARAH: And how have you seen the COVID-19 pandemic play out? You know, especially with this program?

BIBBI: Well, first of all, we weren't out testing as much, because of the limitations that we have with the gatherings and things like that. Also, when people are isolated, mental health issues escalate. So there's a much larger need for mental health care. And then people who self-medicate with substances also increase because of the limitations because of the COVID pandemic. We're starting to get there, we're back out, we're back talking to people, people are coming back into care, but it's a slow process. And then we're dealing with the residuals of you know, during the pandemic, I lost my place to stay or during the pandemic, I lost my income or I lost my job or I have all of these food stamps. I have nowhere to store food, cook food, eat food. So there's a lot and we're just trying to meet people where they are to help them along the way.

SARAH: So thinking ahead about the future of the HCV treatment space, especially in light of the COVID-19 pandemic, what are some of the things you're thinking about in terms of how to improve the health care delivery model? 

BIBBI: COVID is here to stay. And as we weave COVID into our daily operations, what we also tried to do is to make treatment, screening, and point of care testing more available to all of our patients at all of our health centers.

I've only been at PHMC for a year. And one of my goals is to get the point of care tests in the clinic. So that when patients are there for appointments, you know, we have Mary Howard Health Center, which is a health center for the homeless. So when people walk in, it's not a lab draw. If they have an appointment, or because they take walk-ins, is something else that we can offer to help screen and see if people are Hepatitis C positive and to get them into treatment. So that is something that we are trying to do. Our Infectious Diseases Program is mostly a care clinic now. But my goal is to make it an enterprise program and not just concentrated at this one clinic.

SARAH: Thank you so much for making time to talk with us. And just really thank you for what you're doing in the community and providing this treatment as well.

BIBBI: Thank you, Sarah, for having me. I enjoyed it. 


SARAH: Funding for our special Housing is Health series comes from the Center to Champion Nursing in America, which is a joint initiative of the Robert Wood Johnson Foundation, AARP, and AARP Foundation.

For more about us and our programs, log onto  paactioncoalition.org and nurseledcare.org.  And you can connect with us on social media @PaAction and @NurseLedCare. 

At the Core of Care is produced by Stephanie Marudas and Emily Previti of Kouvenda Media and mixed by Brad Linder.

I'm Sarah Hexem Hubbard of the Pennsylvania Action Coalition. Thanks for joining us.