Federal ACA Threats and How They Could Impact Access to HIV Care and Treatment

John Fangman, MD, discusses threats to the Affordable Care Act and how they could impact people with HIV with JoAnn Volk, MA, research professor, founder, and co-director of the Center on Health Insurance Reforms at Georgetown University’s McCourt School of Public Policy and Tim Horn, Director, Medication Access at NASTAD.

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John Fangman: [00:00:14] Hello! We're 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, Dr. John Fangman, an infectious disease doctor at Mass General Brigham in Boston and the chair of HIVMA's Innovative Service Delivery Task Force. This podcast series builds off of four episodes recorded last year, and will delve into emerging threats to the care systems that people living with HIV rely on and how we, as infectious disease clinicians and healthcare providers, can support continued covers for people living with HIV. We've spent a lot of time talking about Medicaid, but we will be talking today about related programs and coverage sources that low-income people living with HIV rely on for their care and treatment. For the second episode in 2025, we will talk about some of the actions that Congress and the administration are considering that threaten the Affordable Care Act's marketplace coverage, and how this might impact people living with HIV. We have two great guests today to talk about this topic. The first is JoAnn Volk, who is a research professor, founder and co-director of the Center on Health Insurance Reform at Georgetown University's McCourt School of Public Policy. Welcome, JoAnn.

JoAnn Volk: [00:01:30] Thank you. Glad to be here.

John Fangman: [00:01:31] And our second guest is Tim Horn, who is the director of medication access at NASAD, an association that represents HIV, hepatitis, leadership at the state, territorial and local health department level. Welcome, Tim.

Tim Horn: [00:01:44] Thank you John. It's good to be here with both you and Joann.

John Fangman: [00:01:48] So we're happy as well to have both of you here to talk about this timely and really important topic. And let's dive right in. Joanne, I'll start with you. Let's start with the administration and the new rule that was released several weeks ago that impacts marketplace coverage. What are some of the highlights of that rules and ways the proposed changes could impact people living with HIV?

JoAnn Volk: [00:02:08] The Trump administration released a rule they're calling the Marketplace Integrity and Affordability Proposed Rule. They've only allowed for 30 days of comment, so they're trying to move this quickly. It would essentially rewrite marketplace rules at a time of historic enrollment in the marketplace. 24 million people enrolled this past year, two times what we saw under the Trump administration's final year in office, round one. They are essentially proposing a number of technical changes that, on their own may seem very small and inconsequential, but really add up to the same sort of threats we're seeing with the Medicaid proposed cuts that I know you've heard about in the earlier podcasts. Fewer people will have coverage. The proposed rule officially estimates up to 2 million people will lose coverage in the first year, but experts expect more. And those that do get to keep it will pay more to do so. The justification they're offering for these changes is that there is fraud which has actually happened, except that it's been brokers committing the fraud, not individuals for the most part. And in non expansion states, states that have not expanded Medicaid, where people are just desperate to get coverage, and if they can demonstrate they have income over the eligibility line, they get it. And the brokers are sort of pushing them or creating applications without their knowledge.

JoAnn Volk: [00:03:18] So that has been happening. But they are targeting not the brokers here, but individuals who need coverage. And they also say that those who have coverage should not be getting it. They're misrepresenting their eligibility for enrollment and income. This comes on top of dramatic cuts to navigator funding, by the way. They cut immediately once they came in office, navigator funding from $100 million to $10 million. So we already had some challenges to people getting help getting enrolled. So just to break down a couple of the top lines from this very technical rule, it will be harder to enroll. And they've done that by shortening the open enrollment period. It's back to 45 days when it's been as much as 75 days, and even more during Covid. It used to be that the open enrollment ran into January 15th, and I flagged this in particular for folks who may be listening to this podcast, because we know that that cutoff is important for people who don't realize, you know, what, they were automatically re-enrolled in the premium and the coverage that they have until January. And so the later open enrollment date allows them to go back and change their plan to one that better suits their budgets and their health care needs.

JoAnn Volk: [00:04:21] They're imposing this on SBMs too, the state run marketplaces, where in the past they've had flexibility to determine their own enrollment periods. They're also removing a special low-income enrollment period for individuals who have low incomes. They have an opportunity to enroll monthly and not wait for the more rare opportunities that others have. So it will be harder to enroll with that. They're going to require more documentation for special enrollment periods, including the ones that are most often used, like loss of other coverage, marriage, adoption, or getting a Medicaid denial. They are also putting this on SBMs too, the state-based marketplaces to do for most of their new enrollments. Insurers can deny coverage for past due premiums, and in fact, some are completely cut out of coverage. They've removed the eligibility for Deferred Action for Childhood Arrivals or DACA recipients. They will no longer be eligible for marketplace coverage under this proposed rule. Just quickly, a couple other highlights. They're making it harder for people to maintain coverage. There is this auto enrollment process where people are just automatically rolled over into coverage that they had in the previous year with the tax credits they had before. If you happen to be able to roll over with a $0 premium, they're just going to sort of artificially impose a $5 premium.

JoAnn Volk: [00:05:33] So you have to come back and pay to get in, even when your premiums should be zero. And there's really no legal basis for doing this. And they've made it more expensive to keep coverage. Playing with an index that applies to a number of different pieces of coverage, including raising the maximum out-of-pocket limit that people will have. Lowering the value of the premium tax credit and reducing the assistance for people who qualify for subsidized Out of pocket coverage. And then finally, they're making dramatic changes to the coverage itself. They're prohibiting coverage of gender affirming care as part of essential health benefits. It's care that I know many HIV docs may be providing. The rationale is that it's not covered in a typical employer plan, which is sort of the basis for the essential health benefits standard. But in fact, surveys show that 72% of fortune 500 companies do cover it, and 24 states in the District of Columbia interpret nondiscrimination laws to prohibit insurers from excluding coverage for this care. The upshot is that if it is covered, premium tax credits will not help defer the costs associated with that coverage, and it won't count towards your out-of-pocket limit.

John Fangman: [00:06:40] That's a daunting list of changes. Joanne, thank you so much for going through them. And if that doesn't get the listeners attention about what we're facing here, I don't know what will. I also want to flag that you made a comment about the opportunity to comment on these proposed rule changes. I think that's an important thing for our listeners to be aware of. There is an opportunity to share our perspective as clinicians about what the implications of these myriad administrative barriers to care will produce for our patients. So thank you for that as well. So now that you've really gotten our attention about proposed changes on the administration side, I'm wondering if you could also talk to us a little bit about the congressional proposals regarding the Affordable Care Act are, and things we should be aware of as we think about care for people living with HIV.

JoAnn Volk: [00:07:23] Quickly, the comments are due on April 11th, so it is quick turnaround. You know, they only afforded 30 days for that. But we also have running in Congress some other attacks there. I know you've heard about the proposed substantial cuts to Medicaid. And as listeners to that podcast know, the political landscape is really one that the Republicans are in charge here of the House, Senate, and, of course, the presidency, with very thin majorities in both the House and the Senate. But they're going to be using a streamlined voting option that is known as reconciliation, where they can pass legislation in the Senate with just essentially 50 votes, with the vice president weighing in to put them at 51 to pass something. These bills will not be subject to a filibuster. Medicaid is on the table, but we also expect there could be proposed cuts to the Affordable Care Act. One big must do matter is that right now we have enhanced premium tax credits that were enacted during Covid, and they will expire at the end of this year. It made possible $0 premiums for many people, and was one of the key pieces that really led to the historic enrollment I talked about. At the top of the hour. They may take this opportunity for this enhanced premium tax credits, aspiring to, in fact, rewrite the tax credits entirely with this reconciliation maneuver, where they can pass something with fewer votes and restructure them entirely. Right now, they provide the greatest benefit to the lowest income individuals. They seem to have some concern about people who are at the higher income, paying more out of pocket for their premiums. So we might see changes there, and there might be other changes too, to the tax credits using this reconciliation maneuver.

John Fangman: [00:09:00] Obviously, the ACA was a game changer for people living with HIV, many of whom were locked out of private insurance coverage before the ACA. So we'll be weighing in on any efforts that are out there to roll back coverage gains. Tim, turning to you, can you set the stage for us and talk a little bit about how the ACA expansion of coverage impacted HIV care and treatment programs?

Tim Horn: [00:09:22] John, to your point, I think we can all take great pride in the fact that the ACA really has substantially improved equitable access to comprehensive health insurance for people with HIV. So, generally speaking, rates of uninsurance among people with HIV are now similar to rates I've seen in the general population, so around 10%. Of course, this is both a success story. Notably, rates of uninsurance among people with HIV have more than halved. You know, since 2013, the year before the full ACA implementation began. And an observation that we still have a lot of work to do to get all people who are uninsured insured in this country. Now, it's important to note that Medicaid expansion has been the biggest contributor to improved health care coverage rates among people with HIV under the Affordable Care Act. Nevertheless, you know, the ACA has also ushered in vast improvements in private insurance coverage options for people with HIV, notably those who are not eligible for Medicaid. So more affordable coverage for people with pre-existing health conditions has certainly helped to ensure that people with HIV have access to truly comprehensive medical services, which is vitally important given that HIV requires truly comprehensive medical care. No. Less importantly, it has enabled the Ryan White HIV Aids programs, especially state and territorial Aids drug assistance programs, to purchase affordable private insurance from clients otherwise eligible for Ryan White and ADAP services. The net result is that people with HIV who have low incomes, especially where they don't qualify for Medicaid, including in states that haven't expanded Medicaid, can receive premium and cost sharing assistance support from state ADAPs, which not only covers a variety of outpatient services, but also inpatient care if needed. And again, an important reminder is that inpatient care is not covered by Ryan White.

Tim Horn: [00:11:20] And the savings to Ryan White programs in APS is considerable. So for eight APS, purchasing insurance and providing cost sharing support remains more affordable to these flat funded programs than purchasing costly HIV and other medications outright by these programs. Additionally, with more Ryan White clients on insurance, substantially less federal funding needs to be allocated to core medical services for uninsured individuals, which has effectively allowed Ryan White programs across the country to more fully fund support Court services that get at many of the social determinants of health that greatly influence health and well-being among people with HIV. Nationally, of more than 240,000 clients served by state and territorial aid apps in 2023, around 35% of clients had private insurance. More than 60% of which were commercial plans with ACA protections, and were receiving premium and cost sharing support from state aid apps at annual cost, substantially below the estimated cost associated with the ADAP paying for medications directly. Sort of in closing around this, I just sort of wanted to return to the 50,000 foot view. And I do think it's important to note that if we are going to end HIV as an epidemic and ensure that we are supporting people with HIV in reaching the highest attainable standard of health possible, maximizing coverage under the ACA, and ensuring that individuals have continuous access to affordable, comprehensive coverage is vitally important.

John Fangman: [00:12:59] That was an amazingly clear explanation of the relationship between these programs, and it sounds like ACA's insurance expansion really changed the landscape for care in a lot of the states and allowed an expanded scope of services, which is really an important message. We've heard from JoAnn about changes to the ACA being contemplated by both the administration and Congress, including premium hikes for marketplace enrollees, special enrollment periods closing, annual enrollment periods shrinking. How do those changes impact Ryan White HIV Aids programming and the people they serve?

Tim Horn: [00:13:34] Yeah, thank you for that, John. So I think one super important consideration here is that at least among ADAP clients, you know, those who have healthcare coverage, including private insurance coverage being paid for by the state, you have higher virologic suppression rates than clients who are uninsured or underinsured and receive direct medication support from the programs. This has been a consistent finding of NASTAD's data monitoring project, which includes an annual report based on data provided annually by state ADAPs. Now, if we lose ACA protections, including those that ensure affordability and comprehensive coverage, we really risk backsliding on this very important metric of success. To put a finer point on this, around 90% of ADAP clients receiving premium and or cost sharing support have undetectable viral loads in 2023. Again, 90%. One of the best biologic outcome rates among HIV populations nationwide. Additionally, and this is getting to your point, where private insurance starts to become prohibitively expensive for Ryan White programs and ADAPs, particularly where those programs are now contending with a number of financial strains and considerable uncertainty in the current climate, paying both premiums and cost sharing potentially becomes an unaffordable option for these programs. So not only is this bad for clients, it substantially increases the financial strain on these already stretched safety net programs, which means that prescription drug, medical and support services need to be scaled back. We had an ADAP enrollment waitlist in the early aughts, in the 20 tens. And to be blunt, if ADAPs cannot afford comprehensive private insurance for their clients, we really will be in serious jeopardy of returning to those very scary and difficult times.

John Fangman: [00:15:31] This is just such a sobering conversation for me, and you alluded to it, that many of these changes seem to be really threatening. The progress that's been made, not just in access and retention, but to the broader effort to end the HIV epidemic, which is a reminder, was an initiative launched under the first Trump administration. JoAnn, aside from the rule change and congressional debates over premium tax credits, are there any other things that you want our audience to be aware of in terms of threats to the Affordable Care Act that could have a big impact on our patients living with HIV.

JoAnn Volk: [00:16:00] I think I'd mentioned two other things. One is the preventive services requirement under the Affordable Care Act. As folks may remember, this is a requirement that health insurers and employer plans must cover expert recommended preventive services with no cost sharing to the patient. There's a lawsuit against that challenging that requirement its made its way to the Supreme Court, and we're going to have oral arguments later this month with a decision expected before the end of June. You know, these expert recommendations include things like cancer screenings, vaccines, well-child visits, contraceptives, and they're continually updated to reflect the latest evidence and science, for example, to require coverage of Prep in recent years. Interestingly, the administration has submitted a strong defense of the law, which is good. But the other thing to watch for here is that even if we retain the law and that requirement, we have a secretary of HHS who does not necessarily follow science and take expert recommendations on what people need to stay healthy. We have that additional threat that perhaps he either fires the experts on those panels that make the recommendations, or reject their expert advice on what should be covered with $0 cost sharing.

JoAnn Volk: [00:17:10] And then the other thing to really watch for is what we call junk plans. It's basically the plans that don't have to comply with the comprehensive suite of consumer protections that the Affordable Care Act requires of plans sold to individuals and small employers. In particular, there's something called short term plans that are intended to be short term. Currently, they can be offered for no more than three months. You cannot renew them. You cannot continue to try to be covered under a short term plan because they can discriminate based on health status. They can charge you more. They can exclude key benefits like mental health services or pregnancy or prescription drugs. We expect this administration to rewrite those rules to allow them to be offered for up to a year, multiple years in a row. And unfortunately, people do not often knowingly buy these plans. There's a lot of misleading marketing that people are sold these plans over the phone without even seeing any plan documents. And it's, you know, not until it's too late when they submit a claim for coverage that they thought they had, they find out, in fact, it's this one of these junk plans that doesn't have to cover them at all. So we expect that could be coming down the pike, too.

John Fangman: [00:18:14] So we're coming to the end of the conversation. And I just want to say thank you to you both. You know, this is such a powerful example of partnership and listening and learning from experts. So people that are really paying attention to this and understand the mechanics of this, just call out the kind of interrelatedness of Medicaid, ACA, um, marketplace. And then Ryan White and the interplay between these programs. And I'm really sobered and activated by what you've shared today about the real threat to the lives of the patients we take care of. I'd like to sort of close us off with kind of your guidance and recommendations for how we can take this knowledge and translate it into action, and see if you guys have recommendations for how we as clinicians can weigh in, both with Congress and with the administration on potential impact of these devastating changes to our patients.

JoAnn Volk: [00:19:00] Well, certainly on the proposed changes to the rule. Get your comments in. There is this rule and the comments close on April 11th. But there is an annual opportunity to rewrite the marketplace rules. And we expect other rules too, like the short term plan rule that I said and I think really driving home what it means for real people is an important piece of this. You know, you may hear from clients who find out in January they have the wrong plan and need that extra time to change it. You may hear what it means, or you could offer thoughts on what it means to have higher premiums and higher out-of-pocket limit on their out-of-pocket costs. And really, and based on what Tim was saying, what it means to lose coverage altogether for their health, those are important stories to bring forth in comments and also to talk to your members of Congress. And similarly, you know, make these stories real, put these proposals into real, you know, examples so that they have to really contend with what their decisions mean for people.

Tim Horn: [00:19:50] Yeah, thank you for that, JoAnn. I mean, and I think from a public health advocacy perspective, I think a quote unquote like yes and approach is really essential here. So, you know, perhaps now more than ever, really, you know, we need, really need to ensure the continuation of the Ryan White HIV Aids program. And that's the yes part. Now, the and part is recognizing that the Ryan White programs, including ADAP, can only maximize their reach and scope if they are able to get and keep people on insurance, including commercial plans. So defending the ACA really is the key to defending one of the most important safety nets for approximately one half of all people living with HIV in the United States. And I'll just add that, you know, somewhat unrelated to the very specific proposed rulemaking that was beautifully reviewed by JoAnn, is is that state insurance commissioners are possibly the best guardians of ACA protections when it comes to private insurance plans. So for clinicians, if you see something, say something, and don't hesitate to reach out to community based HIV organizations in your state to discuss and act when necessary.

John Fangman: [00:20:58] So thank you both for those affirming and practical guidance for how we, as clinicians, can support our patients during this really complex and challenging time. And thanks again for both of you for sharing your wisdom and expertise in this area. I think our listeners will come away with a lot more clarity around the challenges that their patients are facing and, importantly, have some real practical guidance for how to respond. For those of you that are listening, we referenced previous podcasts around the importance of Medicaid that were recorded last year, but I would also point to a recent broadcast on implications of threats to Medicaid. Those podcasts can be accessed through the HIVMA website. HIVMA.org. So thank you for JoAnn and Tim for this session and for sharing your insights into this really complicated issue.

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