Understanding Why Medicaid Matters for People with HIV

Anna Person: [00:00:12] Hello! We are excited to welcome you to the HIV Medicine Association's podcast series, Let's Talk HIV, why Medicaid matters. This podcast series will cover the ins and outs of Medicaid, the federal health care program that provides care for millions of low-income Americans. I'm your host, Dr. Anna Pearson, an infectious disease doctor at Vanderbilt University Medical Center and HIVMA vice chair. For the first episode in our series, which will walk through the basics of the program and why Medicaid is such an important lifeline for people with HIV, we are thrilled to welcome two guests with us today. Our first guest is Lindsay Dawson, who is the associate director of HIV policy and director of LGBTQ Health Policy at KFF, where she conducts research and analysis of HIV policy in the United States. Hi. Thank you so much.

Lindsey Dawson: [00:01:10] Hi. Thank you so much for having me. It's a pleasure to be here.

Anna Person: [00:01:12] Our next guest joining us today is Dr. Wendy Armstrong. Doctor Armstrong is an infectious disease doctor and professor at Emory University and a member of HIVMA.

Wendy Armstrong: [00:01:24] Thank you so much. I'm excited for this conversation.

Anna Person: [00:01:26] We're so happy to have both of you here. Let's dive right in today. And when people think Medicaid, they may not think that this is a very riveting topic, but we're here today to tell you otherwise. Lindsey, can you give us an overview of why Medicaid matters, what it is, why it's important for people with HIV.

Lindsey Dawson: [00:01:51] Medicaid is a national health program. It provides comprehensive health coverage and long-term services for over 80 million low income people in the United States. It was established almost 60 years ago, in 1965, and it's actually a voluntary state and federal partnership, but all states elect to participate in it. There is a federal floor, meaning there are standards as to what states have to provide and to whom. But beyond that, states do have a fair amount of flexibility. And for this conversation, it's really important to recognize that Medicaid plays a particularly important role in the lives of people with HIV. Medicaid is the largest source of insurance coverage for people with HIV. 40% of all Non-elderly adults with HIV in the US have Medicaid. And for comparison, 15% of Non-elderly adults overall have Medicaid. So it plays a really disproportionate and important role. Medicaid's role for people with HIV has grown over time for three reasons. First, people with HIV are living longer thanks to highly effective treatment and care. So longevity means that you may be with the program for longer and staying alive longer on the program. Secondly, new infections continue to occur, so people get diagnosed with HIV, they may be enrolled in Medicaid already or get enrolled once they meet with a caseworker. And then third, thanks to program expansions, particularly ones under the Affordable Care Act. So, as I mentioned, states do have some flexibility in what they provide. But the Medicaid services typically cover services that you might consider part of health insurance.

Lindsey Dawson: [00:03:35] So physician visits, inpatient visits, outpatient visits, X-rays and other services. However, there are optional services too, and probably the most important one when we're thinking about people with chronic disease generally and certainly people with HIV is the optional drug coverage benefit, though all states do elect to provide it. And then the final thing I think is important to understand about Medicaid is that it is different from Medicare and from Ryan White, and sometimes there is confusion about what those programs are and how they relate to one another. So Medicare is the federal insurance program for people over 65 and people with long term disabilities, but people who are under 65 can have both. And in fact, a quarter of people with HIV are duly enrolled in both Medicare and Medicaid. And it's different from Ryan White. Ryan White is not insurance coverage. It's the social safety net for people with HIV. And it is a pair of last resort. Meaning if you have Medicaid or Medicare or private insurance, those payers have to cover your care first, and then Ryan White can fill in the gaps or wrap around what the care and coverage that you have. People with HIV who have Medicaid and Ryan White actually have higher rates of viral suppression than people who have Ryan White alone. And it really suggests that companion role that Ryan White can play to Medicaid is really important in optimizing health outcomes.

Anna Person: [00:05:05] Thank you Lindsey. That's a really helpful overview and a great place, I think, for us to get started. We know that Medicaid has been in the public eye for years, and in large part because of the Affordable Care Act, which you mentioned. Can you tell us a little bit about how the ACA changed Medicaid and where things stand, particularly with Medicaid expansion in the states?

Lindsey Dawson: [00:05:32] The Affordable Care Act fundamentally changed the Medicaid program and what access meant to for millions of people. When the ACA was first signed into law in 2010, it was envisioned that all states would expand their Medicaid program to nearly all non-elderly adults, with income up to 138% of the federal poverty level. In dollar terms, today, that means about $21,000 a year in income for a single individual. This expansion was really important because prior to the ACA, you had to be categorically eligible for Medicaid. What that meant is that you had to be low income and something else. So low income and pregnant, or low income and disabled. And for many people with HIV, that created a catch 22. You couldn't get access to a health insurance program until you had become disabled. Even though that health insurance program may have provided the supports you needed to prevent disability. Even though the law envisioned all states expanding, a legal challenge effectively made this a state option. And today there are 41 states that have expanded their program. These states are home to nearly 70% of people with HIV. However, this means that over a quarter of people with HIV do not live in a Medicaid expansion state.

Lindsey Dawson: [00:06:54] Most of those folks live in Florida, Georgia, and Texas. And for those people they're without access to Medicaid, but many are also caught in the coverage gap. That means that they don't have access to the Medicaid expansion program, but because they're below 100% of the poverty level, they don't have access to insurance subsidies on the exchange because those subsidies begin at 100% poverty level, and were created because of the belief that all states would have expanded their programs. This means that there's a more important role for Ryan White in non-expansion states that must provide HIV related care, because that care isn't being delivered through the Medicaid program. Individuals in those states can see quite good HIV care outcomes, but really struggle with accessing care for other conditions. We did a focus group and met people in non-expansion states, and I met one man who said, look, Ryan White is my lifeline and my HIV is well controlled, but I'm buying insulin out of my neighbor’s fridge. And so you can see the real disparity in access to care and looking at Medicaid expansion in non-expansion states.

Anna Person: [00:08:04] Wow. That's really powerful. Lindsey, thank you for sharing that. I mean, I think it's clear that Medicaid expansion and you made these points is a really big deal for people with HIV. But as you mentioned, we have a whole lot of individuals left out of Medicaid in states like my own Tennessee that chose not to expand. Wendy, I know you also have a deep familiarity with this living in Georgia as another state that did not expand Medicaid. Tell us about living and working in a non-Medicaid expansion state. What does that mean for you and the patients that you serve on a daily basis?

Wendy Armstrong: [00:08:48] So you mentioned that it is really tough in Tennessee. And I'm going to say it's really tough in Georgia as well. And I think the way to really explain what this means is to give some fairly specific examples that really highlight these problems. So as you said, Georgia is not Medicaid expansion state. It is also the number one state in the country for new incidents of HIV. The clinic that I work in is one of the largest clinics in the country and serves persons living with HIV predominantly, we serve 8000 patients and then another 1500 at risk for HIV. I'm in the best-case scenario in a non-Medicaid expansion state. Our clinic is Ryan White funded. It's large. We can offer a lot of different services to our patients. But even in that reality, which is really different than if you are a much smaller clinic in a different area of the state. Even in that reality, of 8000 patients, 3500 of our patients are uninsured, meaning that their only coverage is Ryan White. So the majority, the largest subgroup of our patients have no insurance, 1700 have Medicaid, 1700 have Medicare. For those patients, as Lindsay mentioned, there are significant coverage gaps. So while anything I can do in our building, so we provide our own primary care, I have access to some specialists, we have, you know, access to some other services. Those things that we can do in our building can be covered by Ryan White.

Wendy Armstrong: [00:10:17] All the other things that happen aren't. And so that may be the admission to the hospital for opportunistic infection associated with their HIV. It may be the admission to the hospital to get needed breast cancer surgery, for example, or any other issue that requires either inpatient admission or referral to a specialist that doesn't exist within a Ryan White covered entity. We have a safety net hospital in our city. It serves two counties. Our clinic serves 20 counties. So if I have a patient who lives in one of the 18 counties not served by our safety net hospital, this was a patient of mine who developed breast cancer. We diagnosed it. She had nowhere to go to get the lumpectomy and radiation that were necessary for appropriate treatment of her cancer, because she did not fall in the catchment area of the safety net hospital. So Ryan White is wonderful coverage, but it has significant holes, particularly in inpatient coverage and subspecialty service. The other pieces are Ryan White dollars would go so much further if we had Medicaid expansion, because then some of the basic needs of our patients could be covered by Medicaid. And Ryan White, the payor of last resort, could be providing again the wraparound services that were already mentioned. And that's one of the reasons why patients with both Medicaid and Ryan White have better outcomes.

Anna Person: [00:11:36] Thanks, Wendy. That is a really striking example of what it's like to live in a non-Medicaid expansion state. Lindsay, you made the point about just how important it is for folks with HIV in terms of having Medicaid. And yet here we are, two of us, Wendy and myself, in a state that has not expanded Medicaid. Can you tell us, Lindsay, more about whether state decisions to expand Medicaid might be changing over time, or do you think that it will change? It seems like it should be a no brainer that that states should expand Medicaid, because, as you mentioned, Wendy, Ryan White dollars can go further. We can do more for our patients.

Lindsey Dawson: [00:12:22] So state decisions around Medicaid expansion have absolutely evolved over time. And there is significant public support for this. KFF polling has revealed that over two thirds of people who are living in states that have not expanded their Medicaid programs want to see their programs expand. Today, as I mentioned, there are 41 states that have expanded their Medicaid programs, and this is a really significant increase from what we saw when the expansion was first adopted in 2014. In 2014, there were just 27 states, and this has happened over time. There isn't a single catalyst that I can point to for these policy shifts, but it is something that health policy experts expected would happen early on. They look to the traditional Medicaid program, and we saw a similar thing, though an expansion there, for the most part, happened a little more quickly. When Medicaid was enacted in 1965, it took about four years for most states to adopt traditional Medicaid expansion, but it wasn't until the early 80s that all states and D.C. had expanded their program. So more recently, these shifts in states adopting the expansion have happened for a number of reasons. In some cases, it's been about a shift in political makeup in the state or bowing to public pressure and others it's a recognition of the financial benefits and the real evidence around how good this can be for states to expand their programs. Under the ACA right now, it would be 90% of the costs for an expansion program is paid by the federal government and just 10% by the states.

Lindsey Dawson: [00:14:04] But the American Rescue Plan added another sweetener to that, saying there's an additional 5% of states who newly adopt the expansion for two years. And then most recently, several states have expanded due to voter led ballot initiatives, though that process is not available in every state. There is another avenue. Early on, we did see some states use waivers to implement their expansion, and at the time they were using measures to do this, it wouldn't have traditionally been allowed under current law. And this was really an effort to gain public support for doing expansion, but not tying it as closely to the ACA. So some of the measures included things like additional premiums or cost sharing or having to adopt healthy behavior incentives. But those have morphed over time. And the differences in these states are really less pronounced. And the final thing I'll say about waivers, in some ways, we have to also think about the administration and what the current administration would allow for Medicaid programs. Under the previous administration, under the Trump administration, we saw things like work requirements allowed as Medicaid waivers, which have been withdrawn under the Biden administration, but certainly something to keep an eye on in terms of how Medicaid can change, both in the traditional program and in the expansion program based on the administration.

Anna Person: [00:15:28] Okay. That's helpful. That's something I want to hear a little bit more about. You mentioned the work requirements and that some states have proposed something not quite like full expansion or with some limited Medicaid expansion. Wendy, I know you're in a state that has a pathway to Medicaid with work requirements. So can you tell us a little bit about how that has looked in Georgia and what impact it has had for access for people with HIV in Georgia?

Wendy Armstrong: [00:15:58] Georgia has actually enacted what they call the Georgia Pathways to Coverage as a way to get Medicaid coverage, and it requires logging that an an individual needs to log 80 hours of qualified activities per month, and they have to do monthly reporting. And those activities are in categories of work, study, volunteering or some vocational rehab training. Right now, this program, because of the withdrawal by the Biden administration, is set to end in 2025. But there is a Georgia is bringing a suit to try and extend the program. But let's get down to what that's meant for individuals. There are 430,000 roughly individuals who could benefit from Medicaid expansion in the state of Georgia. The hope was that with this particular pathway, that at least 150,000 or so individuals would sign up for Medicaid in this way. It turns out that a six months into the program, which was this past December, there are only 2300 persons on the books. They require monthly submissions and reporting of their hours. There are a lot of requirements that it's bureaucratic. There are forms. It's not easy for an individual and they are removed off the program if the monthly reporting isn't successful. These kinds of requirements, though, are so infrequently helpful for people with disabilities or chronic illness. Clearly, this has been challenging for individuals in Georgia with all kinds of backgrounds, not just living with HIV, but for those with disabilities or chronic illness, it's particularly hard because chronic illness makes it difficult to do 80 hours of qualified activities. So at the end of the day, this doesn't increase access for the individuals, who in many cases, one could argue, need it most because they have conditions that already require significant access and expenditures. And so at the end of the day, it is not equitable across groups of persons who don't have access to Medicaid. It's discouraging because that has been advertised as a pathway to further help. But in our case study in Georgia, it has been anything but.

Anna Person: [00:18:08] I appreciate your spotlight on equity and how the program has not worked out, perhaps as it was hoped. I really have learned so much from this conversation about Medicaid, and I wanted to sort of end with one final question for both of you. Why is it important for us to be listening right now to this podcast, and to be putting in the effort to learn more about Medicaid? How is it that HIV clinicians can actually move the needle and participate in some of these Medicaid policy decisions in their states? I'd love to hear your thoughts, Lindsey, if we could start with you.

Lindsey Dawson: [00:18:50] Sure, thank you. As clinicians, as you develop a deeper understanding of this policy area, it creates a unique opportunity to be able to share the stories that you see in your clinics, that you experience with it in your states, with policy makers. As medical providers, this offers you credibility with these stakeholders and enables you to bring day to day clinical experience to show the real-world impact of these policies on people with and vulnerable to HIV. It can be incredibly helpful to humanize the impact policy has, and to put a face to the experience of people in the crosshairs of policy and in fact, maybe the very thing that can help change hearts and minds on these issues.

Wendy Armstrong: [00:19:39] Can I add to that? I 100% agree, and I just want to reinforce the really important role that clinicians can play in advocacy. It may feel that this is happening at the state, house or distant from wherever you are practicing, but the voice of people with experience is so important. Clinicians carry a gravitas. They are a trusted representative. And so every single person listening to this call, no matter what your role is, can play a role in advocacy. And what does that look like? How do you do that? There are options with existing groups. And so looking in your state, there's a covered Georgia coalition, a covered South Carolina coalition. Many of the states that have not expanded have groups of interested people working on this. But I'll tell you even more also is that our state representatives have offices in their districts. They like to hear from people in their districts. You can go to the office and speak to them or to their aides. You can invite lawmakers to your clinic to see what's happening and to, again, make this a very human face in Georgia right now, for example, while there has been an announcement that Medicaid expansion is not on the docket for the current legislative cycle, it has been an active discussion, and there is every reason to believe that perhaps it could be on the docket in the next year's cycles. It is the push from us as advocates, and that's all of us that can make the difference about whether that appears in front of our lawmakers or not. And so I just want to, again, really put it out there that that you have a voice and it's not as intimidating, scary or hard as it seems to be. Even a call to a representative's office saying that you support Medicaid expansion as a physician or a clinician in your state can make a difference.

Anna Person: [00:21:34] I love that. Thank you. That is so inspiring. Thanks so much to both of you, Lindsey and Wendy, learning more about Medicaid, really learning about how we can make a difference in the lives of the people that we care for. Even being from Medicaid Non-expansion states, this is really inspiring. And thank you all for joining us for part one of our Let's Talk HIV mini-series. Our next episode is going to be hosted by our co-host, Dr. John Fangman, and he's going to be joined by Drs. Kate McManus and Ryan Westergaard to discuss how HIV clinicians can improve access to medications for their patients with Medicaid coverage. We thank you for your attention today, and please join us for the next installment of our series.