Episode Transcript
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Tony: Hello and welcome back to another episode of Micro Matters, presented by ID pitstop, where we discuss, dissect and demystify topics in infectious diseases with our experts here at UPMC and the University of Pittsburgh. I'm your host, Toni Morrison, media specialist here at Pitt, ID, and I'm just as curious as you may be about navigating through a world full of microscopic organisms. Please join us as we examine both the dangerous and beneficial microbial microcosms that surround us. Promote public health, and showcase research and treatment of modern infectious diseases.
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Tony: In 1984, a healthy, vibrant teenage boy from Indiana started to notice unusual bruises appearing all over his body. His strength faded day by day, and his doctor struggled to identify the cause. Surely this sudden decline in the boy's health was a result of his hemophilia, an often genetic medical condition that severely reduces the blood's ability to clot. It was only after months of tests that he received the official diagnosis.
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Tony: “You have AIDS,” said Doctor Kleiman, Ryan's pediatric ID provider at the time. It then became clear that his illness was the result of a contaminated factor eight blood transfusion, which he was receiving to treat his genetic hemophilia.
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Tony: Ryan White's HIV diagnosis became a headlining story globally, not just for his illness, but for the stigma that followed. In the mid 1980s. Fear gripped the nation. HIV was spreading, but misinformation was spreading even faster. Ryan's school administration banned him from attending classes and his family ostracized within the community. What followed was a fight not just for his health, but for his right to live a normal life.
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Tony: Yet through his struggle, Ryan became the face of a movement that changed HIV care forever. From Ryan White's courageous story came the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act, which still supports thousands of individuals with HIV across the country, providing the care and services they need to lead long, healthy lives. Today, we'll explore the evolution of HIV care, focusing on the work being done at UPMC PACT clinic, where patients receive not just treatment, but support and hope.
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Tony: For today's episode, we're diving at HIV care as it stands today. Joining me are two incredible professionals from UPMC’s Pact Clinic, a team dedicated to providing care to patients with HIV. Our first guest is Doctor Nupur Gupta, Clinical Associate Professor of Medicine at the University of Pittsburgh and UPMC’s Division of Infectious Diseases. Doctor Gupta is a leading physician at Pact and has a wealth of experience in treating patients with HIV.
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Tony: Always a pleasure, Nupur. Thanks for joining us on the show today.
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Nupur: Hi Tony, thank you for having me on today's episode. This is a topic that is very near and dear to my heart, and I'm excited to discuss it with you and our audience and shed light on how HIV care is managed and what we here in the clinic are doing to support our patients with HIV.
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Tony: We're also joined by Ella Kaplan, one of the clinic's social workers. Ella is deeply involved in the clinic's community outreach efforts and plays a vital role in connecting patients to the care and support that they need. She works closely with the Ryan White programs and is the administrative expert on today's episode. Thank you so much for joining us today, Ella.
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Ella: Thanks so much for having me. I think we do really great work at PACT, and I'm excited to talk to you all more about it.
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Tony: So why don't we get started? Nupur, can you tell us a little more about how patients with HIV are supported here in the US, and specifically where the Ryan White services fit into that framework? Could you also explain the significance of the Ryan White Act for listeners who might not be familiar with it?
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Nupur: Sure, Tony, I'd be happy to talk about the history of the Ryan White program and how we support patients living with HIV. As you mentioned in your intro, Ryan White was 13 years old when he was diagnosed with HIV after a blood transfusion in December of 1984.
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Nupur: He had hemophilia at the time, which, like you mentioned, it's a genetic disorder. It doesn't allow, you know, blood to clot normally, so bleeding can't stop. Patients with this condition, they can bleed for a long time after an injury and require the missing clotting factors to treat this illness. So, he faced, unfortunately, a lot of significant stigma related to HIV when he tried to return to his school in Indiana.
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Nupur: And so, because of this, both him and his mother, they rallied for him to attend school. And through these efforts, he became a really well-known advocate for HIV research and awareness. So, in his name, Congress passed the Ryan White Comprehensive Aids Resource Emergency, or the CARE Act in 1990. He actually passed away.
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Nupur: Just a few months before this, before this legislation was passed by it. And it is in his honor. It became apparent at that time that, you know, many of the people who were living with HIV had little or no insurance at all. And so, they were really struggling to obtain medical care. And at the same time, providers were also really struggling to take care of patients living with HIV just because of the lack of funding.
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Nupur: So really, this is the largest federally funded program in the United States for people with HIV that makes funding available through grants that are given to local community-based groups, to clinics, to states, to cities, that make, that provide medical care, medications and essential services to help patients with HIV stay in care. It funds five different, five different parts, to that, to the program.
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Nupur: And that's how we support all of these programs. It's typically a pair of last resort, so it can fund treatment when there's no other resource that's available, especially to those who are low income, uninsured or underinsured. So, through this program, we can help patients get onto lifesaving medications, stay in care, and provide other important services for, you know, especially for pregnant persons, for infants, and youth.
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Nupur: So, this program really has been instrumental in improving HIV related health outcomes and reducing HIV transmission. I mean, it has saved countless lives, and it really continues to be a pillar of HIV care in the United States.
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Tony: So, shifting focus to the impact clinic itself. Can you discuss the role of interdisciplinary care in managing HIV, particularly at PACT?
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Tony: How do you work with social workers, like Ella, case managers and other professionals to support patients?
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Nupur: Our PACT clinic is great. I mean, I love the clinic. I'm a little biased though. But, packed clinic, which stands for Pittsburgh Area Center for treatment. But I really like the name PACT because I think it really emphasizes that this is a strong pact or a bond that we form between our patients and the whole team at the clinic support one another. So, we opened up the, at the UPMC campus since the early 1990s, and that's when our Ryan White funding also began. There's so many people at the clinic who, I mean, help support people with HIV. This, you know, includes obviously, our providers who do both HIV and primary care. But there's also pharmacists and social workers.
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Nupur: We have a whole behavioral health team with high risk psychologist, a peer object, dietician, nurses, you know, other doctors who run our anal dysplasia clinic and women's health clinic, and a huge research staff who also supports our patients and our clinical trials and research activities. So, all of these services and roles are really closely integrated and we work together to provide the best care possible for our patients.
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Nupur: For example, you know, whenever we have a new patient at the clinic, they, they not only see the provider in person, but they also meet with our peer advocate after their visit or before their visit. I think this is really great because the patients, they get to know more about our clinic, they get to learn more about community resources.
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Nupur: We also try to do warm handoffs, meaning that after we see the patient and for instance, if they have a social work or a psychology need, we introduce them to that professional. So just like Ella right after that appointment and connect them face to face. Additionally, you know, many of our providers have weekly check ins with their social worker and nurses to follow up on their really vulnerable patients and figure out, you know, what else can we do to help support them and help them stay in care?
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Nupur: So in taking care of persons with HIV, you know, it's really crucial to provide interdisciplinary care because there are a lot of barriers, that may be present that, you know, sometimes we as providers are not aware of, or the patient might tell, you know, for instance they might tell Ella about it. So, it's really good, I think, to have an open dialog and work really closely with the whole team that we have in the clinic, because, again, we're just there to provide the best care possible for our patients.
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Tony: Ella, you're on the front lines of community outreach. Can you talk about your experience linking patients to care through the Ryan White programs? What strategies have been most effective in connecting patients to the support that they need?
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Ella: Absolutely. So, I think I would echo a lot of what Nupur said. What we try to do is act as a medical home for these patients as much as possible.
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Ella: A lot of patients who have HIV, there's also a lot of other, you know, co-occurring issues going on. And navigating the health care system can be really challenging. You know, as you all mentioned, when folks are uninsured, a lot of these medications can cost thousands of dollars a month, even with insurance. So, if somebody is uninsured, you know, or needs help navigating that system, it can be a huge barrier.
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Ella: So, I think a big part of what we do, the message we want to convey: if you have HIV, we can help you. So regardless of like, maybe you do have insurance, but it's not a good plan. You know, maybe you're underinsured, maybe you had no other way to get to the clinic. You have no way to access resources.
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Ella: We will help you figure it out. As far as community outreach, you know, I think we also partner with other organizations. So, an agency that we work with a lot as Allies for Health and Well-Being, which is a community agency. And they also have a clinic as well. So, we work with linkage to care in that agency, trying to help folks connect with us.
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Tony: Building trust with patients is crucial, especially when some are hesitant to seek care, and this may be because of the stigma surrounding HIV or any past negative experiences that they've had with health care. Ella, how do you and your team build that trust?
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Ella: So, I think the first thing we do is acknowledge the stigma. So, a lot of patients, you know, they're afraid to come into our clinic for whatever reason.
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Ella: You know, people may see them. They're people make no information about them, you know, that they don't want getting out. Acknowledging that and then talking about what we have in place to try to help. So, things like telehealth, things like, you know, trying to be aware of who else is in the waiting room. I think the other thing about our clinic, there's other things happening there as well.
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Ella: So, there's an ID practice, as well as a PrEP clinic, too. So, you know, there are other reasons perhaps why someone is there, besides, you know, getting HIV treatment.
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Tony: And, Nupur, can you add how telemedicine has factored into these efforts?
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Nupur: I agree with Ella. You know, this population has faced and still continues to face so much stigma. And it's so important to do, you know, to acknowledge that and, you know, try to build trust with them because that's how we can help these patients stay in care. So, one of the things that we've been doing at our PACT clinic is providing, you know, extensive telemedicine services. You know, since the pandemic began, every clinic in the country, you know, they provide some telemedicine in some sort of capacity.
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Nupur: But here at PACT, we've been doing it since before the pandemic. So, this meant doing video to home visits, and they didn't have to come into the clinic. But we took it even a step further than that by taking our clinic, our model here in Pittsburgh of the PACT clinic, to where the patient is. So fortunately, UPMC has several outpatient tele consult centers, and they're scattered throughout the state of Pennsylvania, and they're located in, you know, smaller communities where specialty care like HIV may not be accessible or that the local provider, they may not be as comfortable managing HIV, or that due to stigma because of the small community that they might live in, as Ella mentioned, you know, person with HIV has not told anyone about their illness, or that the closest provider is still hours away. And, you know, in this country, transportation unfortunately, is still a huge challenge. So, for those reasons, we use these tele consult centers to see patients with HIV at a city or clinic.
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Nupur: The provider is located in Pittsburgh. The patient comes to this clinic. They're checked in the help of a nurse, and they sit and talk and get examined by the provider. We can help them stay on their medications and stay in care. So, and we realize, you know, just like how the importance of social work and case management here is in Pittsburgh, like Ella alluded to.
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Nupur: We work with local case management groups in those communities to support these patients as well. So, I think telemedicine, you know, it's really in care and help more people connect with providers, without leaving the comforts of their home or community and without hopefully having to face the stigma surrounding HIV that they otherwise might be facing and, you know, use it as a tool to build trust and keep patients in care.
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Ella: I think if I may, going off of that, there are also a lot of patients who prefer to travel miles and miles away from their communities because of the stigma. So, we have patients coming from Ohio, from West Virginia, you know, from rural parts of Pennsylvania, outside of like the Pittsburgh metro area. And there are other options for them to get treatment in their communities, but they prefer to come here because of, you know, I'm not going to find someone who knows me, hopefully, you know, and it's less likely to happen if I come into the city for the care.
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Ella: So, we do a lot of facilitated transportation for folks like this as well.
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Nupur: That's such a great point, Ella. And I think, you know, that can't be understated how much of that type of care we provide at or clinic here in Pittsburgh, and how that can be a big barrier to staying in care, too.
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Tony: The goal of ending the HIV epidemic in Pennsylvania is ambitious, but we've seen some significant progress so far. What milestones or successes have you seen so far in the journey towards this goal, and what are the next steps, particularly with new treatments and the works of organizations like AIDS Free Pittsburgh?
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Ella: Okay, well, I can say some thoughts that I have. I think a huge change and a huge positive development has been long-acting injectable medication.
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Ella: So there actually are medications. You can get injected once a month or once every two months. They're working on, I believe once every six months. I don't know if that's a thing yet that that is on the horizon. Rather than taking a pill every day. So that has been huge for patients who have, you know, lots of barriers to staying in care.
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Ella: I would say a lot of work is being done toward what they call a status neutral approach to care. So, whether you are HIV negative and at risk or whether you're living with HIV, you can get treatment, you know, in the same facility, in the same system. And that does a lot to address the stigma as well. So, I would say those things.
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Tony: Nupur?
Nupur: Yeah, I agree with Ella. You know, especially the medical milestones that she mentioned. They're really just been astronomical in the world of HIV prevention. We have had oral pre-exposure prophylaxis or PrEP around for over a decade now. And it has prevented countless new HIV infections.
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Nupur: We've had approval of long-acting Cabotegravir, which is an injectable, used for prevention of HIV, just like oral PrEP. And it can be given every two months, as you would imagine, a lot of patients like this. If you can just take an injection every two months, as opposed to a daily pill. Most recently, like Ella alluded to, we've had excellent results from a clinical trial that showed a drug called Lenacapavir, can be given twice a year for prevention.
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Nupur: And it showed that it can reduce HIV infections by 96%. I mean, these are just astounding efforts and medical milestones in the world of HIV prevention. So, we have come really far in this, but I think we still have a lot of ways to go. Because, you know, not everyone has access to these, medications.
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Nupur: These medications are often expensive. The, you know, the Lenacapavir drug, the big issue is going to be, are insurers going to cover this because it's going to be expensive. So, you know, as much as we can do from the research side, it's really great. But we also need a lot of uptake in the community.
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Nupur: And, you know, a lot of advocacy for drugs like these to show that, hey, look, if we can prevent a HIV infection down the road, we can make huge inroads in terms of, you know, morbidity and mortality devoted to having an actual HIV infection.
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Ella: And then to answer your question regarding AID Free Pittsburgh, they do an enormous service in our community as someone who can sort of connect community players together.
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Ella: So we attend monthly or quarterly meetings with AIDS Free Pittsburgh and lots of the other providers in the area, whether they're doing medical care or social service work or all of the above. They also do a lot of outreach to communities. So, I don't know if folks have seen all these billboards and bus station ads and things that are, you know, throughout Pittsburgh.
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Ella: These are things that are actually done by AIDS Free Pittsburgh, is my understanding. And they say things like, do you have HIV and need housing? We can help. Things like this. So even if you're not currently engaged in care, this could be a pathway for you to connect to care and to resources.
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Tony:I have just one last question for you both. What message would you like to convey to our listeners about the importance of clinical and community support in ending HIV?
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Ella: I think it really takes a lot of players from a lot of different parts of the community to both raise awareness about what resources exist and what services exist, and to help people kind of filter into those resources.
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Ella: So, it takes your PCP, someone maybe, who is not an HIV provider, knowing that these resources exist. It takes other social service agencies working, you know, on other aspects of care that aren't necessarily HIV-related. It takes community members and, you know, peer advocates were mentioned. The peer advocate is actually someone else living with HIV who works for the clinic, who can meet with you and talk about their experience and help you with like, patient navigation.
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Ella: So, you know, everyone has a role. And the more we can incorporate different kind of stakeholders in that role, the more successful we're going to be.
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Nupur: I think that's a really great point to make Ella, you know, that it really takes a village to take care of patients with HIV. And I think the most important thing that I can say, you know, to our audience, is that everyone can get tested for HIV. You know, I think it's so important to understand that even if that test comes back positive, living with HIV is no longer a death sentence, right?
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Nupur: We have excellent support, and we can manage HIV just like any other chronic illness. But by getting tested, you can do your part in reducing transmission and helping to end the HIV epidemic. You know, as much as I love taking care of my patients with HIV, I would also just be happy if, you know, if they never had to see me again for their HIV care or if I was out of a job, taking care of their HIV as well. So, go get tested.
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Tony: Thank you so much, Nupur and Ella, for your insights into HIV care today, the importance of interdisciplinary collaboration, and how the Ryan White programs continue to make a difference in the lives of so many.
Ella: Thank you.
Nupur: Thank you for having me. It was great to talk with you guys.
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Tony: If you or someone you know is living with HIV, the PACT clinic at UPMC and the Ryan White programs are available to provide compassionate, comprehensive care. Together, we can work towards a future where HIV is no longer a public health crisis.
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Tony: And that's it for this week's episode. Please join us next time as we continue to explore HIV care and innovative research in the world of infectious diseases.
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Tony: Thanks for listening. If you enjoyed today's topic, please rate, write a review, and be sure to subscribe to the show wherever you listen to podcasts so you never miss an episode! Want to keep up with the latest IDPittStop news? Follow us on social media at IDPittStop, where you can view behind the scenes content, discover more of our research, and be the first to know about upcoming projects.
