Amanda Wilde (Host): Welcome to Recovery unscripted, the Haymarket Center Podcast where we discuss meaningful conversations focused on the integration of substance use disorder, mental health, and primary care treatment. I'm Amanda Wilde with Dr. Dan Lustig, President and CEO Haymarket Center. And we have the pleasure of hosting President and CEO of AIDS Foundation Chicago, John Peller. We're talking about essential services and the impact of federal funding cuts. Welcome to you both. Thank you for being here.

John Peller: Thank you. Thanks for having me.

Host: John, to position this discussion, can you sketch out what the current picture of the HIV epidemic looks like?

John Peller: Sure. That's a great place to start with this conversation. So first of all, there's about 1.2 million people living with HIV in the United States. And that breaks down to about 40,000 people living with HIV in the state of Illinois and about 20,000 living in the city of Chicago. The good news about HIV right now is that we have incredible medical technology that when someone is diagnosed with HIV early and treated throughout their lifetime, someone living with HIV can live a near normal lifespan, which is just an incredible, incredible advancement from where we were even 20 years ago.

The other amazing news about HIV right now is that we have PrEP, pre-exposure prophylaxis, and there's now three different forms of PrEP. There's a daily pill. And there's an injectable. And the injectables can be taken either every two months or, just introduced about a year ago, every six months. So today, someone can get a shot every six months that is over 99% effective at preventing HIV.

So, we have the technology that we need to end the HIV epidemic. We know what we need to do to end the HIV epidemic. The challenge is putting the policies in place that get us there and also addressing some of the real societal factors that are driving the HIV epidemic, and one of probably the most important is the stigma of HIV.

Host: Yes, that is something Dr. Lustig is also quite familiar with, dealing with the stigma of substance use disorder. Dr. Lustig, are there similarities in the stigma faced by people with substance use disorders and people with HIV?

Dan Lustig, Psy.D., CAADC, CODPII: Both conditions are highly stigmatized, both in how they're treated and both on how they are funded. And so, many people don't understand that these are chronic relapsing conditions that are highly treatable. And that's what families and friends need to know when they're faced with both of these conditions, is that it is treatable.

What is also very similar in both of those conditions is how we are funded. Many of these grants are funded not through direct funding streams, but through grants. And so, it's a highly stigmatized funding situation that both conditions represent.

Host: So, how are current and anticipated federal and state funding cuts expected to affect the HIV care continuum in illinois?

John Peller: So, that's where things get really challenging. The good news, at least for federal funding, is that it's mostly level and the president, in his budget that he proposed in 2025, proposed cutting completely all CDC HIV prevention funding. Congress, fortunately, felt that that was not a good idea and overturned those cuts. So, federal funding for HIV prevention and for the Ryan White CARE Act, which is where AIDS Foundation Chicago gets a lot of support and Haymarket gets support too, is level funded in the federal budget.

However, and this is the big however, we know that there are other major policy changes coming that are going to really threaten our ability to provide services. And one of the biggest is the changes to the Medicaid Program. And starting in the beginning of 2027, all people who are on Medicaid who joined as a result of the Affordable Care Act are going to have to meet work requirements monthly. They're also going to have to prove that they're eligible every six months. And the impact of this is going to be that people are going to be kicked off Medicaid. And we're estimating that 5,000 to 6,000 people in the state of Illinois are going to be removed from the Medicaid roles as a result of these policy changes, and that is already straining the systems of care that we know are so vital.

Dan Lustig, Psy.D., CAADC, CODPII: You know, John, one of the things I wanted to ask you, it's kind of interesting that you're bringing this up, but what are you hearing—I know so many of our patients, when they heard about these cuts, were petrified. What are you guys hearing from the AFC route about how these kind of rapid decisions are impacting individuals?

John Peller: Yes, we are hearing the same thing from our clients, from community members. They're really frightened about the future. And the state of Illinois expanded Medicaid in—was it 2014? I think, yeah, 2014. And remember, before we had Medicaid expansion, if you were poor, you know, just low income and maybe able to work, you couldn't get health insurance. People living with HIV could legally be denied health insurance because health insurance companies could say, "You have a deadly health condition. We don't have to insure you."

And so, the amazing change the Affordable Care Act brought is that people could get insurance through Medicaid, they could get marketplace coverage, and it covers the whole person care. It's not just for HIV care, it's for someone's heart disease, diabetes, and also—so vital—mental health and substance use treatment. We know that people living with HIV have mental health and substance use challenges at higher rates than the general population. We can't expect people to take a pill every day and go to the doctor every couple months and eat healthy food if they are depressed or if they're using substances. And mental health treatment, substance use, it's vital because it's whole-person treatment. We've got to treat the whole person, not just one slice of what's going on with someone's health.

Host: And that's what Haymarket Center does as well as we've explored on a previous podcast. Haymarket Center provides comprehensive services from walking in the door till way beyond treatment. Are you expecting similar impacts from funding cuts and Medicaid changes, Dr. Lustig?

Dan Lustig, Psy.D., CAADC, CODPII: Yes. Haymarket Center is planning for cuts as we look around our strategic events and planning. But I think what's key is that we have always experienced funding cuts when budgets have gotten tight, because people really don't understand the importance of the life-saving treatment that Haymarket Center provides.

What people need to understand is that treatment saves lives. So whenever there is an impact to our funding, so goes that service. It's not like we can provide a lower level of service or a higher level of service. That service category tends to go away. But providing treatment really does mean that you're providing someone with life-saving treatment.

And I think that's a key piece to understand, that treatment as a whole has to be ongoing and the individual has to be addressed as a chronic relapsing condition, just like any other medical disorder. So if you take away the medication or the treatment of any other medical disorder, you'll experience profound consequences for that individual. And unfortunately, it is Haymarket Center's hope that the cuts can be reduced or eliminated by that simple understanding that treatment does save lives.

Host: From AIDS Foundation Chicago's perspective, where do behavioral health providers like Haymarket fit into maintaining the continuity of care when these supports shrink?

John Peller: Haymarket has played really a vital role for people living with HIV for decades. And we have partnered on a number of levels to provide services. One of the areas we work together is corrections. And so, people who have substance use challenges who are leaving prison and jail can go to Haymarket for treatment.

And we have an intensive case management network system for this population. And the case managers help people not only get connected to medication, to medical care, the substance use and mental health treatment is being provided in-house by Haymarket, but also get linked up to housing, to food and nutrition; connected to benefits. These are very intensive services, so there's a low client to case manager ratio, which is really critical. So, folks can get really personalized care and services as they need them. And the case managers really get to know people's needs.

What's so important about this program is that it has the ultimate impact of reducing recidivism. If we can help people address their mental health needs, substance use needs, and then also take care of their physical health, also get on HIV treatment so their viral load is undetectable, address if they have diabetes, you know, heart disease, asthma, it helps people get to a place where they can be functioning members of society and aren't engaging in the behavior that resulted in them ending up in prison and jail in the first place.

Host: And many of these folks have complex needs. Are you seeing early indicators that individuals who have concurrent needs, maybe dealing with addiction and homelessness or justice involvement, do you see any early signs those individuals are falling out of care due to funding stability or instability?

John Peller: I think it's a little hard for us to see that impact yet. There's certainly been moments like when all SAMHSA funding was cut, we had threats two weeks ago. It's actually still an ongoing issue of $600 million in CDC funding to Illinois, and three other democrat-led states being cut off overnight. And a judge stepped in and said, "Put a temporary restraining order in place," which is good. We need that funding permanently stayed so that it can flow to the state of Illinois.

What we are seeing though at AIDS Foundation Chicago is that the state of Illinois seems to be moving funding away from services to programs that get people medication. For people living with HIV, absolutely a hundred percent getting people medication is vital. And that is what is literally keeping people alive and making sure that we don't have new HIV cases in the community. So, we understand how that priority has to be number one.

The challenge, however, is that services are critical too. We need case managers like the corrections case managers that I talked about to connect folks to resources and to support them, to get to medical care, to get to places like Haymarket if they need substance use treatment, to pay for housing. People living with HIV, the number one reason folks come to AIDS Foundation Chicago who are living with HIV is for housing because they're unststably housed. And we provide about a thousand units of housing to people living with HIV every year, but the demand is far greater than that. We have about 800 people on our waiting list.

Dan Lustig, Psy.D., CAADC, CODPII: I think this is a really good example that John has pointed out is these are real services in real lives. What we've heard on the news is cost savings, cost savings, cost savings. These are real lives, real people that, if they get into the right system of care with the support of AIDS Foundation's case management program alone as one specific example, it saves money long-term in addressing chronic healthcare conditions. These are key programs like Haymarket Center and AFC that truly are partnership has saved millions of dollars and it's saved lives. And that's where, I think, families kind of get with all of this chaos going on about funding, This is the biggest challenge. It's not just the loss of funding. But it's when someone hears there's no more funding, do they ever hear that the funding's been restored? Families are scrambling right now. And when you look at AIDS Foundation of Chicago and the resources that they have to the community, that's what we want people to know, is that there are resources, there are services that are life-saving.

Host: So, how can organizations like yours present a unified message about the impact of cuts on the whole person and on real-life outcomes?

John Peller: I think, the partnerships that are happening right now around advocacy are so important and are frankly thriving and working really well, which is some great news about what's come out of this really, really difficult time in our country. We're a co-leader of Protect Our Care Illinois, which is a group of organizations that are focused on healthcare advocacy and focused at the state level at making sure state legislators, state-elected officials understand the impact that the changes to the Medicaid program that Medicaid cuts are going to have on organizations like Haymarket, like AIDS Foundation Chicago, and understand what decisions state policy makers with the Medicaid Program can make that will mitigate some of these impacts.

For example, for people living with HIV, the state can say these folks are medically frail. And if the state defines people living with HIV as being medically frail, they will be exempt from the work requirements and be able to stay on Medicaid. So, those kinds of decisions are so vital for continuing care uninterrupted for people living with HIV. So, those are the kinds of decisions that we want to make sure policy makers understand and are making decisions about that are going to have the best impact.

Host: So, that is one way you are investing to protect access for the highest risk populations. Where else should organizations like AIDS Foundation Chicago and Haymark Center invest?

John Peller: I think it's really critical for us to be working together and continuing to partner because, particularly as we move forward with Medicaid cuts with other funding impacts, we're not going to be able to provide the same levels of services that we have in the past. And so, it's going to be really vital to be around the table together. And we do that through our service providers council, where we convene each of you providers to communicate about what services are still available, what changes organizations might have made, what are changes coming to programs out there. Just the communication is really vital. That's also a really critical platform for advocacy.

And we just released our state policy agenda, which includes a request to the state legislature for an additional $6 million for the AIDS Drug Assistance Program. If we can make sure that people living with HIV have uninterrupted access to medications and there's more funding for the AIDS drug assistance program, then some of these cuts to services don't need to happen. We'll still be able to have the same number of case managers or have more case managers in the system to be able to provide more people with housing to make sure that they're stable.

Dan Lustig, Psy.D., CAADC, CODPII: John, if there's just one more thing that you want families to know, one thing from this podcast that you want families and individuals to know from AFC's perspective, what would that be?

John Peller: So number one, I would say, get tested for HIV. It is critical that everyone be tested annually for HIV when you go to your primary care visit, because everyone is potentially vulnerable to HIV and should know their status. It is also critical if you're living with HIV to getting care. And those care services are still there. They're very robust and there are people who are ready to help, and folks can learn more at our website, aidschicago.org.

Host: Well, John Peller, thank you for explaining how you are flexing and focusing your efforts and reminding us that we are also stronger together. Thank you both for an important and insightful conversation and for the thoughtful work you do with vulnerable individuals and communities.

Dan Lustig, Psy.D., CAADC, CODPII: Thank you, John.

John Peller: Thank you Dr. Lustig. Thank you, Amanda.

Host: That was John Peller, AIDS Foundation Chicago President and CEO, and Dr. Dan Lustig, President and CEO Haymarket Center. For more information, visit hcenter.org. Make sure to subscribe to our podcast, share and connect with us on social media at hcenter.org/recoveryunscripted. Thanks for listening to Recovery Unscripted with Haymarket Center.