Thousands Of Americans Are Set To Lose Access To HIV Medication And Care

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0:26Just a few decades ago, human immunodeficiency virus, or HIV, was a death sentence for those who contracted it. Over the past 35 years, federal investment, more effective medication, and widespread access to care and treatment through AIDS Drug Assistance Programs, or ADAPS, have helped those with the virus live longer, healthier lives. As of 2024, roughly a quarter of a million people received care through ADAPS. But in the coming months, tens of thousands of people living with HIV in the U.S. could lose access to that care. That's because states around the country are trying to save money, in part, by making cuts to their programs that provide HIV meds and care.

1:05Take Florida, for example. In March, more than 16 ,000 people lost coverage when the state slashed eligibility for ADAP overnight. Weeks later, Florida's Republican Governor Ron DeSantis signed a law allocating $31 million to keep thousands of those who lost coverage on their meds. But that money is only slated to last through June, and it's not just happening in Florida. 23 states and Washington, D.C. have implemented or are considering implementing cuts to their own HIV treatment and care programs to help balance their budgets. That's according to data from the National Association of State and Territorial AIDS Directors.

1:41We'll hear from them later in the conversation. But first, if you rely on your state's ADAPT to get HIV meds in care, what do you need to know about the changes that could be coming? And what's at stake for U.S. public health if thousands of people lose access to these life-saving medications? I'm Jen White. You're listening to the 1A Podcast. Answers to those questions and more after the break. We'll be right back.

2:09On Consider This, NPR's afternoon news podcast, we cover everything from politics to the economy to the world, but every story starts with a question. At NPR, we stand for your right to be curious, to make sense of the biggest story of the day and what it means for you. Follow Consider This wherever you get your podcasts. Welcome back to the 1A Podcast. We're talking about changes to the AIDS drug assistance programs and what that means for people living with HIV in the U.S. Joining us from New York is Tim Murphy. He's written about HIV, AIDS, and LGBTQ issues for more than 30 years for publications like New York Magazine and Paz Magazine.

2:52He also writes the substack, The Kaftan Chronicles, about life as an older gay man. Tim, welcome to 1A. Thank you so much for having me. I love this show. Thank you. So, Tim, state-level ADAP programs are funded in part through the Ryan White Care Act. Congress passed that law in 1990. Just explain what that law does. Well, you're right. It was passed in 1990, the same year of the death of Ryan White, the heroic little boy with AIDS that the bill was named for. and this is what's called a payer of last resort for people with HIV in the U.S. who have no access to other health coverage, whether it's through a job or whether it's through Medicaid or Medicare because they're not old enough or they make a little too much money for Medicaid.

3:42So it's a really important program because like you said, it covers about 25 % of people living with HIV in the US, which is probably somewhere in the realm of like 300 ,000 people. There's about a little over a million people living with HIV in the US. And it's a really well-designed program because it provides core services like meds and treatment, but it provides also a lot of what's called wraparound services, which are services that a lot of folks that use the program who are low income really need, like it's support with transportation, like getting to and from medical appointments. If you live in rural underserved areas, it provides rental assistance.

4:26It provides food assistance. It provides substance use and mental health assistance. It sometimes provides dental assistance. So it's really ingenious and it's been pointed to as a model, quote, wraparound program because it provides not just core medicine treatment, but the other things you need in your life to access those things and stay on them. And we should note that in 2024, more than 600 ,000 people living with HIV in the U.S. received support through the Ryan White HIV AIDS program. Now, Tim, you have experience with this program. You write in a piece in New York Magazine that before getting private insurance coverage through your spouse's job, you qualified for New York State's ADAP.

5:06And this was while you were working for several years as a freelancer. Just help us understand and the support the program provided for you? The main thing is that it allowed me, because I was income eligible, because I was a lowly freelancer writing about these issues of HIV AIDS and LGBTQ health, it covered my, both before and after Obamacare, it covered the premiums on my private plan. So, you know, I was making between maybe$60 ,000 and$70 ,000 and these plans were, you know, about a little above or below$1 ,000 a month, I just couldn't afford them. If ADAP hadn't existed, I would have had to get any job I could get just to have health care.

5:56And frankly, you know, the cost sharing and the co-pays would have been onerous as well for like these drugs that are, you know, until they go generic, they're generally really expensive. Well, over the past few months, activists, including some celebrities, have traveled to Washington to advocate for ADAPT funding and to raise awareness about the importance of HIV medication and prevention. I hope that people see that this is not like a gay problem. This is a human problem. This is a disease that like everybody can contract. So we really need to stop stigmatizing people and the fear and the shame and all of that does not help the situation.

6:33And that's singer Erica Jane. She's a cast member on the reality TV series The Real Housewives of Beverly Hills. She was at Capitol Hill in March. The Ryan White Care Act has generally received broad bipartisan support since its passage, Tim. Why are various states looking to cut funding related to that program now? The main underlying reason is that it's a federal state program, right? So like the feds pay for most of it and then states chip in to various extents what they can and what they're willing to. But on the federal level, the underlying issue is that the program has been flat funded at about$900 million for over a decade, even as the sticker price of the meds and of the premiums that the program covers have gone up.

7:23And now we have a situation where the extensions on premiums for ACA or Obamacare plants have been taken away by Republicans in Congress. they passed a quote big beautiful bill that's going to knock millions of people off of medicaid and you know for ad up what this means is a lot of these folks are going to get crowded onto medic uh ad up programs that are already strained and already making cuts in several states so you know we're seeing the beginning of a mess that's probably going to get worse next year because you know republicans deliberately set up the huge medicaid cuts to not go into effect until after the midterm.

8:03So we haven't even felt the pain yet. And people with HIV will feel it. About 40 % of people with HIV are covered by Medicaid. A lot of them are probably going to get knocked off and they're going to have to crowd onto this program and this already burdened program that's been flat-footed for so long that's going to become even more burdened. We'll talk more about ACA and Medicaid a little later, but I just want to make sure to note, current HIV treatment options allow people with a virus to reach undetectable status. So that's when the medication has reduced the amount of virus in the body to very low levels and it can't be sexually transmitted.

8:39More than 91 % of patients receiving HIV medical care through the Ryan White program were undetectable in 2024. So that's up significantly from 2010 when just 69 % of patients were undetectable. And among all people diagnosed with HIV in the U.S., roughly two-thirds were undetectable as of 2024. So we see a significantly higher rate of undetectable status among people in this program. So Tim, what are the stakes here? What happens if someone living with medically suppressed HIV stops taking their medication? I mean, nothing will happen right away. HIV is a slow-moving disease, but slowly, over weeks and months of being off these meds, you will not be.

9:21your viral load will become unsuppressed. HIV will start replicating in your system. It will make you transmittable or to be blunt, infectious to other people sexually, you know, if you don't, if for whatever reason you don't use a condom. And then slowly over the course of, you know, the coming months and years, you will get sick at, you know, at first small things, but then you will get very sick. You will get the illnesses that were the classic, ugly, hallmark symptoms of full-blown AIDS that we saw all the time in the 80s and the 90s, and you will die. You will die. That's what will happen.

10:02What do you think people might not understand about what's at stake for the thousands of people with HIV who could lose coverage if states cut ADAP? well i mean i think what's at stake is is you know several people becoming sick as you know they have in parts of the world where we once supported you know this really terrific pepfar program that this administration has if not 100 decimated that they've really packed into it in really ugly ways but we'll we'll see those health repercussions but this is a public health issue as well because like you said when you're on meds and you're suppressed you're untransmittable so there will be more forward spread of HIV in the U.S.

10:43than there's been in a very long time. And we could start having a situation that looks really ugly again, like it did in the 80s and the 90s, before the occurrence of these incredible meds that turned everything around starting in the late 90s. Well, that's Tim Murphy. He's written about HIV, AIDS, and LGBTQ issues for more than 30 years. And he writes the substack The Kaftan Chronicles about life as an older gay man. Tim, Thank you so much for having me. Well, we have to take another quick break, but when we come back, we'll have a panel of new guests to discuss the future of care and research as the president proposes deep cuts to HIV funding.

11:19What could those cuts mean for public health if implemented? Stay with us.

11:28Welcome back to the 1A podcast. We're discussing how the treatment options for people living with HIV are changing. That's as many states move to restrict eligibility for programs that provide medication and care. Let's meet our panel. Joining us now from Baltimore is Dr. Anthony Todd Fohjo. He's an associate professor of medicine at the Johns Hopkins University School of Medicine and the director of their program in HIV outcomes and research. Dr. Fohjo, it's great to have you. Thank you so much for having me. Also joining us is Lindsay Dawson. She's the Associate Director of HIV Policy and Director of LGBTQ Health Policy at KFF.

12:05Lindsay, thanks for being here. Thank you for having me. It's great to be here. And Tim Horn. He's the Director of Medication Access at the National Alliance of State and Territorial AIDS Directors. That's a leading nonpartisan, nonprofit association that represents public health officials who administer HIV and hepatitis programs in the U.S. Tim, welcome to the program. Thank you. It's great to be joining you all today. We're also hearing from you. My name's Michael. I live in Fort Lauderdale, person living with HIV for 30-plus years. I'm so grateful that you all are bringing some awareness to the AIDS Drug Assistance Program crisis issue here in the state of Florida.

12:43I was actually up in Tallahassee advocating and working with legislators of how critical it is for the legislators to fully restore the program with premium assistance to ensure that people living with HIV have all the tools in the toolbox to lower the possibility of new cases of HIV. Michael, thanks for that message. Lindsay, we touched on this with our previous guest, but what factors are contributing most to the strain that various states' AIDS drug assistance programs are experiencing right now? Right. So as Tim described, there is not a single factor that is putting the strain on ADAPs. Rather, it's multiple factors that are coming together and acting in concert with one another that are putting downward pressure on ADAP budgets.

13:31Certainly, ADAP budgets are complex and are made up with different streams of funding, but one notable stressor is those congressional appropriations that Tim spoke about. And they have been flat funded for over a decade. And when you adjust them for inflation, they're just not keeping pace with need. Today's funding looks quite like it did in 1999. And that is despite increased enrollment, so more clients needing the services, increasing costs of drugs, increasing insurance costs. And while ADAPs have been trying to tap into other resources to bolster their budgets, that's really difficult. Certainly looking at state public health budgets for additional resources is difficult.

14:13Those budgets are completely strained, whether it's for HIV or not. And all of these factors have come together to make it very difficult for ADAPs to ensure their solvency. And when you say more people need access to these programs, Is that being driven by an increase in infection rate, or is it about people not having access to care through, say, private insurance? So I think we can think about both of those factors. People consider HIV, in the public, I think they think of the 80s, the 90s as the height of the epidemic. But today we have more people living with HIV than ever before. And that's for two reasons.

14:50One points to a success and the other points to a struggle. The success is that we have access to highly effective antiretroviral treatment, and so people can live long, healthy lives with HIV. But we still have tens of thousands of new infections occurring each year, and so we have more people living with HIV, more HIV prevalence, and so more demand for the program. But separately, we are looking forward now to coverage losses, both because of the increase in insurance premiums and the loss of enhanced tax credits, but also in the future to those Medicaid changes that Tim spoke about. And we'll see people losing Medicaid and, again, needing access to ADAP.

15:29Tim, this isn't the first time state ADAPs have struggled to meet the needs of everyone who qualifies for their services. When were these programs last in a situation like this, and how did states respond? Sure. So we did see a major fiscal crisis in the early 2010s, and that followed an initial fiscal crisis in the early aughts. And I think what's important to remember is just how the treatment landscape has changed. And just as the treatment landscape has changed, the ability of ADAPs to meet the needs or to rise to the occasion of addressing those changes has been super important. So think about it back in the early 1990s.

16:12ADAPs went from having to cover one or two drugs in the early 90s to three or more drugs in the later 90s. Second, a big part of this was we started to see treatment recommendations to start treatment as soon as possible. So that really saw ADAPS having to respond very quickly. They were having to cover more drugs for people with HIV. And with more people living with HIV, having to start treatment earlier. So both of these are really seismic changes in the science that were compounded by nationwide fiscal crises. Again, things like the fiscal crisis of 2008, which really put fiscal streams on ADAPs, which were factors that led to budgetary struggles in the early aughts and the 2010s.

16:57And really, the end result for many states, especially in the early 2010s, was the implementation of waiting lists for enrollment and services. In 2011, for example, we had nearly 10 ,000 people with HIV on waiting lists, a very grim period in our response to the HIV epidemic. Now, fortunately, we did see new federal funding streams launched during this time, the ADAP Emergency Relief Fund. And while these emergency dollars are still there, the levels haven't changed significantly since 2010, as Lindsay alluded to. And as you can imagine, there's now increased competition for those finite pools of funds.

17:36Dr. Fouhou, you're an HIV primary care physician in a Ryan White clinic where you care for many patients supported by this funding. what populations are most likely to rely on Ryan White-funded care for their HIV treatment? Yeah, so, you know, in general, it will be people who don't have insurance, right? So if you don't have access to insurance, Ryan White steps in, and ADAP programs step in to fill the medicines. Patients who have also, even if they have insurance, but a lot of challenges, right? I see a lot of patients who have substance abuse issues, right, or mental health issues, And the wraparound services that Ryan White provides is really critical to keeping those people plugged in, in care, getting their medications.

18:20We got this email from Sterling, who writes, I'm a person living with HIV in Virginia. Late last year, I received a letter from my local Ryan White clinic with an extensive list of services it can no longer offer. The letter ended with the toll-free number to a suicide prevention line, if that puts things into perspective. Thankfully, my medication is covered by ADAPT. It's a common regimen and it costs$59 ,000 annually. No amount of financial responsibility would allow me to manage that cost, nor anyone else I know, HIV positive or otherwise. That's just my medication cost alone, not including office visits, labs, or anything else.

18:58Dr. Fouhou, I just want to hear your response to this because it's striking and also disturbing that Sterling received this message. and Sterling, thank you for sharing that with us. But that line, the letter ended with the toll-free number to a suicide prevention line, if that puts things into perspective. Just help us understand what people are facing in this moment if this care goes away. Yeah, I mean, that truly breaks my heart, right? And I just can't emphasize how much Ryan White Program has really helped me as a physician keep my patients in care and engaged. I can think of one gentleman I have, substance use issues.

19:42He's unstably housed, right? And he was supposed to come to me for a visit a few months ago. Didn't show. So my Ryan White funded social worker calls him, says, hey. And he says, my friend was supposed to come pick me up. You know, I'm sitting here. I've got no one, right? The Ryan White social worker manages to order a lift, get in there, bring him in, right? And he comes to see me for the visit. We're able to get him his medications. If that didn't happen, you know, he's going to lose his viral suppression, right? And he's going to have health consequences for him and potential health consequences for other folks.

20:14Tim, if more states move to restrict ADAP eligibility and the services they offer, which patients or which people are most likely to be affected by these changes? Yeah, you know, as Dr. Fouho touched on, I mean, I think we definitely see where there's going to be a disproportionate impact. And I think when we think about it, it's important to remember that HIV disproportionately impacts people of color in the United States, for example, notably blacks and African Americans and Latinos, which make up around 32 % and 38 % of all ADAP clients, respectively. And it's also important to remember that ADAPs serve people with low incomes.

20:54That's who these programs are for. So when ADAPs are facing budgetary deficits and the implementation of cost containment measures like we've been discussing here, these effectively disproportionately impact these populations of people with HIV. So Dr. Fouhou, just help us understand the choices people face if they lose ADAP coverage, given the fact that HIV medications are such a costly drug regimen in most cases, but they're also critical for their quality of life. Yeah, so if people lose access to medications, right, or coverage from medications, it puts us in a very difficult situation, right?

21:32So what can you do? Well, you can just not take medicines, right? And, you know, as your previous guest was saying, you won't feel anything bad immediately, but eventually, you know, you will start to suffer long-term consequences. Choice B is I go begging to a drug maker and try and get this person enrolled in the patient assistance program, right? Which is painful, it's challenging, right? And it doesn't always work. And that's not really a long-term sustainable plan, right? Choice three, we could go reaching back for some older antiretroviral medications. You know, there are some that have been around for decades.

22:09Those medicines are hard to take. Older HIV medicines had a lot of side effects. You have to take them multiple times a day. They interact with a whole bunch of other medications. And so that really ends up being a big challenge to be on older regimens. So, you know, if ADAP coverage goes away, it suddenly becomes very challenging for me as a provider to give the care that people need. Susan emails, I was diagnosed with HIV in 2001. My condition has never progressed to AIDS. This is due in large part to ADAP and the Ryan White program. When I had no insurance, I received care via Ryan White and my meds via ADAP.

22:45Now that I'm 65 and on a Medicare Advantage plan, ADAP helps me with the remaining copay, which is$1 ,000 a month on a$3 ,000 medication. Without these programs, I'd be dead. We also got this question from Rodrigo. He writes, is this also impacting access to PrEP in these states? PrEP, pre-exposure prophylaxis, has been instrumental in the last decade at reducing the contraction of HIV, helping to control the epidemic, and further pushing down the need for antiretroviral drugs at a population level down the line. Lindsay, does this affect access to PrEP? No, Ryan White programs are dedicated to the care and treatment of people who are living with HIV.

23:27And ADAP funds HIV drug treatment for people who are positive, not PrEP access. But I do think there are questions to be asked about what the future of prevention access looks like, certainly when we look to a budget that slashed HIV prevention at the CDC. We got this email from Seth who says, let me get this straight. Through medical advances and access to medications, we've managed to keep HIV in check until there's a cure or a true vaccine that approach has worked. We've reduced new infections and we've protected the people living with HIV. And now we're talking about pulling that back. How does that not lead to a surge in new infections?

24:05And just as concerning, faster and more punishing outcomes for people who are already living with the virus. Dr. Fouho, you recently co-authored a study that examines the role Ryan White-funded care plays in curbing the spread of HIV in the U.S. What did that study find? Yeah, so let me step back and outline the big picture, right? Your letter writer there was very astute. As you mentioned earlier in the program, when people with HIV take their medicines, their virus is undetectable. So all the active replicating virus is eliminated from the body. And in that situation, not only is their health optimal, but they cannot transmit HIV.

24:46And if you take away ADAPS, Ryan White Services, some people with HIV who are currently suppressed will lose that viral suppression and their virus will become detectable and will be able to transmit infection. So we ran a study to try and quantify that and say, hey, if these programs go away, how many new infections are going to result? We used a mathematical simulation model of HIV. I get very excited about the math. I realize that not everybody shares my excitement. So from a big picture, what that does is we fitted it to 31 different cities that have a high burden of HIV. And we represent the population by straight of age, race, sex, risk factors.

25:28and simulate average behaviors within those groups of people. And one of the key behaviors or factors that's in the model is the number of people with HIV who are virally unsuppressed. So we simulated what would happen if Ryan White programs, not just the specific drug assistance, but also all the wraparound services that were mentioned, what happens if those programs go away and all of a sudden a large number of people with HIV become virally unsuppressed? And what we see is over the next six years, if those programs were to go away, you see a large increase in infections, right? So across these 31 cities, if everything continued, we would expect to see over six years 150 ,000 infections, just baseline.