Why Medicaid Matters: Why Protecting Medicaid Matters for People with HIV

Anna Pearson: [00:00:11] Hello everyone! We are excited to welcome you to the next installment of HIV Medicine Association's podcast series, Let's Talk HIV. Why Medicaid matters. I'm your host, doctor Anna Pearson, an infectious disease doctor at Vanderbilt University Medical Center and HIV EMA vice chair. And this podcast series really serves to build off of four episodes that you may recall were recorded last year and will further delve into the emerging threats to the Medicaid program and how infectious diseases and HIV care professionals can really support Medicaid as a critical safety net for people with HIV.

And so, for our first episode in 25, we will talk about some of the actions that Congress is considering that threaten the Medicaid program and how this could affect people with HIV. And we are very lucky to have two guests with us today, Amy Kyle. Amy is an assistant research professor at the Georgetown University Center on Health Insurance Reforms, and a consultant to the HIV Medicine Association.

Amy Kyle: [00:01:25] Hi. It's great to be here.

Anna Pearson: [00:01:27] Thanks, Amy. And we have Doctor Kate McManus, who is an infectious disease doctor and HIV doctor and researcher at the University of Virginia and a member of HIV, Ma.

Kate McManus: [00:01:39] Hello. Great to be with you guys today.

Anna Pearson: [00:01:42] Thanks so much, Kate. So we're so happy to have both of you here. There's a lot to unpack. Let's dive right in. And Amy, I want to start with you. Can you set the stage for us about what's happening in Congress right now? Because it's a really crucial time. What exactly is on the table for Medicaid changes?

Amy Kyle: [00:02:02] Absolutely. Happy to provide a rundown there. And I think that it's important to start with the political dynamics that that really were set up with the 2024 elections in November. So let's start with with Congress. And that's that's where a lot of the action that we're going to be talking about is right now, the Republicans in Congress now control both chambers. There are slim majorities, but Republicans still hold those majorities in both the House and the Senate. In the House, Republicans lost a few seats but ultimately hung on to the majority. So they have a pretty thin majority there with 220 seats. And then in the Senate, Republicans flipped a few seats and ultimately took control of the Senate. But again, slim, slim majority there only 53 seats.

And then obviously, we have a Republican in the white House with President Trump's victory. So that's a trifecta of Republican power, which is why we're seeing a lot of different legislative priorities sort of coming to the fore, including health care. But it's razor thin, assuming there really isn't a whole lot, particularly when we're talking about health care, where Democrats are going to join with Republicans. There are very few votes to spare in the House, and far short of the filibuster proof majority in the Senate, which will become important when we talk about the specifics of how Republicans are pushing their policy agenda.

Amy Kyle: [00:03:23] It's interesting to think about this time as a little bit different than the first Trump administration. We really don't have the same out of the gate health care policy energy that we saw during that beginning days of that Trump administration, where we dealt with a huge ACA repeal and replace fight in Congress. But make no mistake, the health care fights are coming, and this time around, they're really at least out of the gate. They're focusing on Medicaid. And that is really because Republicans are eyeing Medicaid and the federal spending for Medicaid cuts to that program and cuts to federal funding as a pay for for other Republican priorities, namely the extension of a huge package of 2017 tax cuts. So what's on the table in terms of potential changes to Medicaid and potential cuts to Medicaid? Probably the biggest changes are are proposed changes to the structure of the program right now. Medicaid is an entitlement program. And that means if you're eligible, you can enroll in funding increases to absorb new enrollment. So there are sort of two policies that are similar that are in play that would change that fundamental structure.

The first is a block grant and that is the name signifies. That would mean that states would get a fixed amount of money. That end of the day is far less than what they get right now for the Medicaid program. And then the second policy that aims to sort of restructure how Medicaid is funded is a per capita cap, which also an extreme reduction. That's the through line of these proposals. It's a reduction in federal funding, but a per capita cap puts the reduction and the cap at per enrollee for federal spending. So the cut is the point. The cut is the point of these types of policies and their mechanisms that their main aim is to drastically reduce federal spending on the program. And that would trickle down. So once federal spending and federal funding is cut, states would really be in the position to have to make significant cuts to eligibility and services to make the program work.

Amy Kyle: [00:05:29] The second big change that has gotten a lot of attention as of late are Medicaid work requirements and imposing work requirements, where enrollees are required to prove that they are working or engaging in a set of work related activities to be eligible to maintain their eligibility in the program. And this is not new. We saw this policy in the first Trump administration where states tried it out as a demonstration project. And long story short, there did not go well, and evidence bears that. It did not end up supporting People working, but really instead caused a huge dip in enrollment as people could not navigate the complex administrative requirements that were needed to report work and work related activities. And, you know, data out from our friends at the Center on Budget and Policy Priorities, which is a think tank here in D.C. they estimate that imposing a national work requirement. So for every state Medicaid program could lead to 36 million people. So people in every single state losing coverage. So that's a big deal. Some people think this one is not as bad as the others. But again, the cut is the point, the cut is the point.

And the last piece that that is really at threat right now or under threat right now is the Medicaid expansion. So that has been the subject of discussion. And what is on the table there. So the Medicaid expansion population is new as of the Affordable Care Act has expanded coverage for millions of people across the country and states that have chosen to expand Medicaid. So that's 41 states and the District of Columbia. And so the proposal there is to reduce federal funding for that specific group to pay for the ACA expansion population, whereas right now the federal government funds the major portion of that group, the Congress would say, no, we're going to reduce the federal funding for the expansion group. And again, the the trickle down effect of that. Once the federal funding is limited, states will decide that they cannot afford that expansion population and may make cuts to that group or eliminate the expansion altogether. So other things are percolating. But those are the big hits.

Anna Pearson: [00:07:34] Wow, that's a lot. Thank you so much for walking us through that. It sounds like there's several possible actions that Congress could take that would have pretty dramatic effects on Medicaid. Tell us a little bit about the timeline for these changes. What can we expect?

Amy Kyle: [00:07:54] Yeah, I think I'll say first, for all of you listening out there, that at this moment it is Friday afternoon, Noon February 21st, and we are in the midst of just a lot of congressional action. So check in with HIV, EMA, and other trusted sources for up to the minute. So I'm going to tell you sort of what we know right now and what's what's in the works. And what we know right now is that Republicans are trying to use a fast track process called budget reconciliation. You know, the point of using that process is that it allows Congress to pass legislation without the usual 60 vote majority in the Senate. So typically, to pass regular order laws, you need to have 60 votes, not just a majority. But we talked about why that would be a problem for Republicans because they do not have 60 votes in the Senate. They only have 53. So they're using this this fast track budget process to push through legislation with majorities in the House and the Senate. And the cuts to Medicaid are on the table there. And it's safe to say the Democrats aren't going to vote as a block against those massive cuts to Medicaid. So what we're watching here in real time is basically two paths that Republicans in Congress are debating.

The first path is coming out of the House and has the support of President Trump, and that's kickstarting reconciliation, sort of using that fast track process and using the process to pass one so-called big, beautiful bill. Those are not my words. And that bill would really be jammed, right, with all of the Republican legislative priorities. So that would include everything Republicans want to do. The tax cuts that we talked about, in addition to defense spending, border immigration, it would all be in this one gigantic mega bill. And that would also have to include Medicaid cuts, again, as a pay for for these other priorities.

Amy Kyle: [00:09:43] The Senate is sort of looking at a potential different option. And what they're calling it now as of this morning is sort of their plan B, it's their fallback if the House can't muster enough votes for that one bill route, then the fallback is that they'll do it in two bills, so they'll use reconciliation first to pass a smaller bill just on immigration, defense and border security, and then a second one later on in this year that will tackle extension of the tax cuts, which would also include Medicaid. The long story short here, if the House is successful in getting Congress to go along with its one big bill plan, we could see this fight play out on a really fast timeline over February and March, with a vote in late March and April. If that doesn't happen, and it's a two track timeline where you've got one bill that doesn't touch taxes and then a second bill later on in the year, we're looking at late summer or fall for this, this fight to really heat up. The takeaway here is that the Medicaid fight is not really a question of if, it's a question of when. And so engagement as soon as possible and sort of prolonged is really, really important.

Anna Pearson: [00:10:50] Thank you Amy. That's a really fast timeline. And I think what you said really resonates. You know, Medicaid threats are here Are now, and it's just a matter of when. And Medicaid is a critical lifeline for people with HIV. So, Kate, I want to hear from you. Tell us what you might worry about with some of these proposed federal changes to the Medicaid program.

Kate McManus: [00:11:14] Thanks, Anna. When we think about Medicaid nationally, about 21% of people have health insurance coverage through Medicaid. And the most recent data shows that about 40% of people with HIV rely on Medicaid. All of this health care information is local. So when I look at my state, 17% of all people have Medicaid. And in my clinic, a non-urban clinic supported by Ryan White HIV Aids program in Charlottesville, Virginia, we serve about a thousand patients, and we have 33% of our patients served by Medicaid. Virginia expanded Medicaid in 2019, and before that, only 12% of our patients had Medicaid. Because it was very hard for our patients to qualify, they had to have a very low income, and they had to also fall into a category of being eligible, such as being disabled, being pregnant, or being a parent. And so with Medicaid expansion, we've seen a really big increase in insurance coverage for our patient population. With even just the talk of cuts to Medicaid, there's a lot of fear and chaos that's going on.

There's information, there's misinformation, there's sensationalized headlines. People are very worried that they're going to lose access to Medicaid, Medicare. Ryan White, support vaccines. Our clinic is getting a lot of phone calls. We're reassuring people with facts, but we also need to be thinking about who's worried and is not calling into clinics or reaching out to clinicians. We know that these sorts of issues and these sorts of times are critical times when people can fall out of care. So we really need to be thinking about who's falling out of care and then proactively doing some sort of outreach. As Amy mentioned, all these cuts really could impact eligibility and might result in reducing the income levels or changing the eligibility criteria.

Kate McManus: [00:13:02] So then again, limiting the eligibility to those who are disabled or pregnant or a parent and waiting until someone with HIV is disabled until you provide them Medicaid coverage is really a shortsighted decision. It lacks foresight because you're requiring someone to get very sick before you help them, and that's not good for the individual. And then it's also very expensive for the health care system. Another thing when Amy talked about that the federal the federal dollars going to Medicaid might be cut.

There are 12 states that have laws that trigger expansion going away if the federal funding is cut. I've paid particular attention to this because Virginia is one of those states. I'll name the other ones so that if you're listening to the podcast and you're in one of these states, you can pay attention to what's going on and talk to people about it, because I don't think that this is widely known. So those states are Arizona, Arkansas, Idaho, Illinois, Indiana, Iowa, Montana, New Hampshire, New Mexico, North Carolina, and Utah. So I think if you're in those states, talk about that, talk to your colleagues, talk to your friends. This is not something that I think is being widely publicized. If there are cuts, we might also see issues with drug formulary restrictions that can make access to first line HIV medications very difficult, either by putting them on specialty formularies or requiring prior authorizations, both of which can be barriers. It could also damper innovation, especially strides that states have made in substance use disorder treatment and things like that. So I think there's a lot, a lot that we're concerned about and why we need to watch this very carefully.

Anna Pearson: [00:14:45] Yeah, that's a lot of reasons to be worried about what happens if Medicaid cuts were to occur. And certainly in Tennessee, we're hearing from patients as well who are worried about the future of of their health care. Kate, I know you've really done a lot of research in this area. This is one of your areas of expertise. I'm curious what you think the impact of Medicaid cuts will have on viral suppression.

Kate McManus: [00:15:11] This is definitely an area that we're watching closely. So we we've studied Medicaid and Medicaid expansion in Virginia. When we looked at the viral suppression rates, we saw that the viral suppression was actually higher than what had previously been published. So we found 87% viral suppression for people who had Medicaid both before and after the Medicaid expansion, and 85% for those who gained Medicaid through Medicare expansion.

These are high viral suppression rates for people with HIV who have the lowest incomes, who are often some of the sickest patients, and who face the most challenges with social determinants of health. We also had an opportunity to talk to people with HIV who gained Medicaid through Medicaid expansion, to talk to them about what is the perspective, right? Because you can measure the numbers. But unless you talk to somebody, what what exactly do those numbers mean? So people said they had really positive perceptions of their care, both before and after enrollment and Medicaid expansion. They felt that their own health care had improved after Medicaid enrollment, and that Medicaid allowed people with HIV to have good care. They specifically talked about affordability of care, access to HIV care, as well as other medical and dental care, access to HIV medications, non HIV medications, and the transportation assistance. You know, having Medicaid is really an important part of fulfilling the ending the HIV epidemic initiative because that plan talks about whole person care, you know, as well as our white House plan for HIV and Aids.

Kate McManus: [00:16:38] Whole person care is really going to be very essential and Medicaid supports that. There's always room for improvement, but that can be expected when there's Medicaid expansion or when there's a program that's providing care to people who are very vulnerable. During the last federal administration, the office of the Inspector General had started to look at Medicaid for people with HIV and had started to identify opportunities for improvement and was engaging with the states on this topic. We want to see that kind of interest and improvement continue, and we don't want to lose that momentum of trying to improve the quality of care for people with HIV who rely on Medicaid. Another aspect of that is Medicaid. Providing coverage to people with HIV with low incomes allows the Ryan White program to really provide wraparound services. The Ryan White HIV Aids program is not public insurance. And so if Medicaid goes away, that puts additional pressure on the Ryan White program and on those dollars dollars that are now used for transportation support, food assistance, mental health services would have to go to HIV medical visits and HIV labs. And so we might have we might see a reduction in what the Ryan White programs would be able to do.

Anna Pearson: [00:17:47] Yeah, thanks for that. I mean, we we all know just how important those wraparound services are to the well-being of our patients and the people that we serve. And it's clear from what you're saying that Medicaid really plays a crucial role in Virginia and nationally for us to be able to end the HIV epidemic. And, you know, I'm always reminded the HIV and the HIV Epidemic Initiative was an initiative launched under the first Trump administration. So, Amy, I'm curious. Aside from congressional action, is there anything that the administration can do or will do with regards to Medicaid?

Amy Kyle: [00:18:26] Yeah, I think that's a good question and I will note that the acute threat to Medicaid and sort of the existential threats to Medicaid are really the congressional threats that that we've talked about. But we also have to look at the the power that the administration has and federal agencies have to to make changes to the program. I should preface this, too, with we are really seeing an unprecedented challenge of legal authority when it comes to the executive branch and unilateral actions to control program spending. And really beyond that, a challenge to overall norms when it comes to federal agencies and the people who work there. And so I think that that is something that is concerning, and we don't yet know how that plays out and how that eventually affects agencies that that run federal programs like Medicaid. But but that is that is concerning. And so, so that's sort of one that we are looking at the workforce and the people with expertise to run complex programs like Medicaid. You know, when it comes to to sort of unilateral funding pauses, which is something that, you know, did not happen in administrations before the current one.

There was a brief pause several weeks ago on the ability of Medicaid programs to draw down federal payments. That pause was brief, and they were able to to continue to get their federal funding. We know that the law gives funding authority to Congress, but we also know that we've seen this administration not necessarily abide by that. And I think that's something that's something to watch. And with all that said, though, legally, the agency that oversees Medicaid, the centers for Medicare and Medicaid Services or CMS, they really do not have the same power that Congress has to change the way that Medicaid is funded or make changes to the entitlement structure of the program.

Amy Kyle: [00:20:15] Only Congress can do that. But, you know, the agency can still and has in the past implemented different approaches to the program. So one thing to watch that will be the types of waivers or demonstration projects that CMS ultimately approves. Waivers are a mechanism that have been in existence a long, long time, and they allow states to waive certain federal regulations for Medicaid, and in return, they get flexibility to test out new things. They can experiment with different ways to pay for and deliver services. And we've seen it used in all sorts of different ways, and it usually varies a bit depending on who's in charge at the at the top, at the presidential level, over the past four years, we saw the Biden administration use these waivers and really encourage states to use waivers to pay for new sort of non-traditional services that address social determinants of health. But under the last Trump administration, we saw sort of a different tack, and we saw waivers and CMS push waivers to implement things like work requirements or additional cost sharing in Medicaid. So we could for sure see that again. I think we're we're we're watching to see now that there's a, a new secretary of HHS in place, and we're sort of watching to see next steps on that.

Anna Pearson: [00:21:27] Yeah, it sounds like there's a lot of moving pieces and potentially a short time frame. And this conversation has been great. I so appreciate both of you. I want to ask you both one final question. And this this is a question that weighs heavily on me as a clinician. You know, how can we as individual HIV clinicians, people who care about people with HIV, how can we weigh in on Medicaid policy decisions and how can we advocate For full funding in Congress and with the administration. I think all of us are really hungry for action, and I would love to know what you think the best line of attack might be. In this case.

Amy Kyle: [00:22:14] Hiv clinicians and other infectious disease providers have a really unique voice and expertise, and really have an important and impactful platform to explain to policymakers what taking away health care by cutting Medicaid. And that's what we're talking about. We are talking to massive cuts to the Medicaid program, what they would mean for people with HIV, what they would mean for the institution or clinic that you work at, what they would mean for the efforts to end the HIV epidemic in your state or jurisdiction. So I think that's a really important perspective to to lift up. And I think that the time right now and the focus right now is, is really on Congress. It's about contacting your representative, your senators in any way that you can, and really making the case of why Medicaid is so important to the people that you serve, and why you want your member of Congress to hold the line on Medicaid.

I would would certainly urge people to look to the resources that the HIV Medicine Association is, is putting out to help amplify the voices of infectious disease clinicians. And this is now a time, just like in other fights, where we've been defending safety net programs to sort of link arms with other groups, where sort of Medicaid is a vast program and it is providing coverage and services, certainly not not only to people with HIV, but for other constituents. And so I think looking at groups that really have the most to lose. So looking at disability advocates, looking at advocates for for kids, healthcare, pregnant women, there's lots and lots of people who could be very hurt by Medicaid cuts. And so really linking arms and speaking with one voice I think is important.

Anna Pearson: [00:24:05] That's a great point. I think that importance of coalition building when we have a common goal in mind. Kate, I'm curious what you have to add about this. How can we affect change?

Kate McManus: [00:24:16] Infectious disease and HIV providers should weigh in with Congress and with state level representatives. You can talk with other sorts of state officials about the impact of Medicaid cuts on patients. Local and specific stories are important, and people remember them. We live this. We see this every single day. But we need to remember that many people, sometimes including policymakers they don't know about on the ground and frontline impacts. And we need to tell them within your state, you can reach out to your governor's office. Governors have been really opposed Medicaid to Medicaid taxes because of the impact on state budgets, so they might be an ally. You can ask your clinics, your colleagues that you can understand the impact of Medicaid in your area. What's the current percent of patients who have Medicaid? And if your state did expand Medicaid, ask what was the Medicaid coverage rate before expansion? You know, Ryan White clinics often have to report this for grant proposals and progress reports. So they have this available. And many other clinics will be tracking this sort of thing as well. And then finally a plug to make the phone calls to your representatives. I used the script in the fact sheet for this podcast. I called my representative, my two senators, and my state senator. I was able to make all four calls in ten minutes. And your calls can make a difference and can save Medicaid. And we know that Medicaid saves lives.

Anna Pearson: [00:25:36] Thank you so much, Kate. Amy, both of you have really shared such important light on just the crucial role that Medicaid plays in our society and certainly for people with HIV. And I also made some of those phone calls today. I agree, it takes very little time, very easy to do. And they want to hear from us. You know, we have stories to tell about how important this program is for our patients. So I can't thank you enough for highlighting this today and also highlighting the tight timeframe and how action is really needed now for us to try to save the Medicaid program. For those of you who are listening and want to hear more podcasts like this, and to find the one page fact sheet about Medicaid and tips for making some of these calls to your representatives, please visit HIV Dma.org slash. Let's talk HIV and you can find all the information that we discussed today. Thank you Kate. Thank you Amy. I greatly appreciate your time and your expertise and your passion.