Vivent Health celebrates 40 years of HIV/AIDS care in Wisconsin

Joy Powers: Vivent Health is celebrating 40 years of providing HIV care in Wisconsin. Formerly known as the AIDS Resource Center of Wisconsin, it's been supporting patients since the very beginning of the epidemic. When the AIDS epidemic began, the disease had no treatment. There was also a lot of fear, misunderstanding, and stigma that resulted in discrimination, preventing people from getting care. Vivent Health addressed those needs through both medical care and a community-built model of care that continues to help Wisconsinites today. To look back at how HIV care has adapted over the last 40 years, Lake Effect's Audrey Nowakowski is joined by Dr. Brandon Hill, the executive director of Vivent Health, and Doug Nelson, the former longtime director of the AIDS Resource Center of Wisconsin.

Audrey Nowakowski: So Vivent Health is marking 40 years of serving the community this year. And, to really understand the impact of the work and also how it's changed over the decades, we're gonna take a holistic look back. But before we get to the roots of the mission, I'd love to go over current outlooks. Where is Wisconsin right now in numbers of people living with HIV, and how are the rates of morbidity and mortality currently?

Brandon Hill: Sure. So, you know, for the state of Wisconsin, there's about 8,400 people living with HIV. Among those, it's always important to note there's still about 1,100 who are unaware that they're living with HIV. For those who are engaged in care, we are happy that about 80% of the people living HIV in Wisconsin receive some service from Vivent Health. And for those who were engaged in care, the Vivant health model has really helped. We have individuals who are so engaged and so adherent to their medication that, with an HIV test, you can't even detect that they have the virus, and we call that virally suppressed. And for those in our care, that's about 95% of individuals who reach viral suppression here in the state. And that has driven down the new diagnoses significantly since the '90s, where we were at about 700 cases a year, to now, we're right around two, or less than two, depending on what year we're looking at. But the new diagnoses are overall down.

Audrey Nowakowski: Now, to take a step back to really appreciate how great these numbers are, let's set the scene for what the earliest years of the epidemic were like here in Milwaukee. Doug, you were the director of the ACRW for over 20 years. Can you share your perspective of that time and the initial, "What are we doing? How do we figure this out? How do help people?"

Doug Nelson: I'm happy to do that. Going back to the very early years of the AIDS epidemic, it was a brutal disease, and it was a disease that had no treatment that was successful for over 15 years. And there was a lot of fear around AIDS. There was a a lot misunderstanding about how HIV or AIDS was transmitted. And that combination of fear and misunderstanding resulted in significant discrimination in schools, in workplaces, and in the healthcare system. One of the first challenges that I had when I became the CEO of ARCW was that we had some patients who were nearing the end of life, and they needed hospice care. They needed nursing home care. And try as we might, with great social workers trying, there was not a nursing home in Milwaukee or in Wisconsin that would take an AIDS patient. So what we did was to threaten a lawsuit against the nursing homes, a lawsuit about discrimination based on disease specificity and on sexual orientation. Once we threatened that lawsuit, a nursing home in Milwaukee came forward and then another one, and we began to make those improvements. But that experience said to us, at that time, that there was going to be a need for aggressive, aggressive advocacy in support of people with AIDS. And that was the impetus for us making a conclusion that we needed to build a comprehensive, integrated care and treatment system where AIDS patients would be welcomed, respected, and get comprehensive services, regardless of their ability to pay.

Audrey Nowakowski: There's an important central point to all of this in that medicine alone cannot stop the spread of HIV. So let's talk a bit more about that integrated care. But to start with some of those earlier challenges, how does the traditional healthcare system not really serve or support people with HIV? And we can start with those early years, if you like, and maybe some of the shortcomings today yet, even.

Doug Nelson: Well, it was all new. And there was a tremendous concern with regard to making sure that in the health care system there were proper infection control procedures, so that HIV/AIDS would not be spread among health care workers, or certainly from patient to patient. That was particularly significant with regard to dental care. We had a hard time getting AIDS patients into dental care because there was this fear that other patients getting care might be fearful and concerned about that. So what we did... That's really the beginning of the integrated system that we built. We opened a dental clinic for HIV/AIDS patients. And from there, we moved to build a medical clinic, a behavioral health clinic, mental health, and ultimately a pharmacy. And so those healthcare systems were integrated also with a very robust social service system: extensive case management by social workers and legal assistance with attorneys, support groups, food pantry. So all of that came together. It took a while, when you're desperately searching for the funding to pay for that, to pay for the outstanding healthcare providers and professional people who would care for the HIV/AIDS population.

Audrey Nowakowski: Yeah, I want to talk about some of those challenges and limitations you faced early on and how you feel the community did mobilize to help you give these resources so that you could do housing, food access, advocacy, and care during a time when there were few treatments and enormous stigma, I imagine, still, in those early years.

Doug Nelson: I have tremendous pride in Milwaukee and the Milwaukee response to AIDS. It was outstanding. It was powerful. It was progressive. The City of Milwaukee provided funding for AIDS prevention and education. Milwaukee County provided funding for the Clean Needle Exchange Program. The corporations and businesses in Milwaukee were outstanding in making donations: Northwestern Mutual Life, Aurora Healthcare, Miller Brewing Company, the Milwaukee Foundation. Business was excellent in coming forward. And then, wonderfully, thousands of volunteers came forward, and I am heart-warmed by that response of people that wanted to volunteer to help at a very difficult time. Many of them were women, mothers, grandmothers, aunts, sisters who had a gay member of their family and were wanting to make a contribution. So the thousands of volunteers that came forward were really helpful. The other thing, our sports teams came forward. Paul Molitor, who was a Milwaukee Brewer, was an honorary chair of the AIDS Walk. And Clay Matthews from the Green Bay Packers was an Honorary Chair of the Aids Walk. The Milwaukee Bucks also contributed. So it was nice to see those entities join with business and join with so many donors to help us fund the services and build the integrated system that we did.

Audrey Nowakowski: I'm going to take a moment to reintroduce you both. I'm Like Effect's Audrey Nowakowski, joined by Dr. Brandon Hill, who is from Vivent Health, and also with Doug Nelson, the former director of the AIDS Resource Center of Wisconsin. We're talking about the 40th anniversary of Vivent health and how the landscape for caring for people with HIV and AIDS has changed here in Wisconsin. Branching off of building the system, Dr. Hill, can you add and explain to how the Vivent model of care has continued to change and adjust over the decades, because as things improve, needs change as well.

Brandon Hill: Certainly. You know, we've always adjusted to the needs of the HIV epidemic here in the state, and really, Vivent Health is really situated right within the health ecosystem. To your earlier question about how has this maybe better or enhanced, and really, it's another model. It's another. It really sits on par with all the other types of services that are out there. And individuals find which model of care works for them. And what we've always strived to do is make sure that we are meeting the epidemic where it is. And it has been quite a transformation over the course of the 40 years. And that is really adding and enhancing the same services that Doug mentioned and that they started with: building facilities that parallel other health systems within the environment, so there's no difference between. Whether you walk into one or the other here in our community, you're getting a state-of-the-art facility. Within the departments, we've done even more enhancements with what we've been able to do within dental. So early on we were just able to be a support. Now we're doing full dentures and replacements and building all of that care out, making sure that we are no longer just focused on just HIV. That's pretty well managed. Now we're looking at what other primary care is needed to keep people healthy, and then what HIV prevention efforts, like the use of PrEP, or pre-exposure prophylaxis, can be mobilized to address where the epidemic is today, that being mostly with younger, gay, bisexual, or queer-identified people of color, so our black and brown communities in particular, and finding out how we engage with that population and make sure that we provide the same type of service that we did early on in the care space.

Audrey Nowakowski: So would you say it's fair to say the need for a crisis response has ebbed, and now it's heavier promotion of prevention and education in that front too?

Brandon Hill: Fortunately, yes. We sit right now so close to the finish line for the ending the epidemic that prevention is going to be our strongest tool, so long as we're able to continue providing prevention.

Audrey Nowakowski: Yeah, are there, like... What are the main setbacks and limitations you face today? I mean, obviously, we can attest here in public radio, federal funding is a thing that can be taken away, come and go. When we last spoke with Vivent, I believe it was 2021, that was a lot of federal funding cuts happening at that same time. So what are main challenges you're trying to fortify yourself against, so that you have the longevity and that you can continue providing care for so many people?

Brandon Hill: Sure. So changes in federal funding are, you know, by far the most direct impact. So, you know, again, the administration in its budget proposed, I think, over a billion dollars in cuts, both domestically and globally, to HIV-related funding, primarily for prevention. So, changes in CDC, changes in what HIV testing and STD testing would become available, and how those funds move down through the states. That was definitely a target. Housing for people living with HIV. The actual ending the HIV epidemic program was on the chopping block, which was originally initiated by the current administration. So they might be cutting their own, proposed cutting their initial plan. And just the overall funding for this effort to actually end the epidemic. So that's a direct threat. A kind of more indirect threat that definitely affects us as the level of awareness about HIV and the AIDS crisis, and the level engagement when it comes to both all the wonderful things Doug talked about in the history of mobilizing, of advocating and donating towards this. When you have a life-managed disease, it kind of moves to the back-burner for the general public. So the general awareness isn't where it was 30 years ago.

Doug Nelson: One of the unique aspects of Wisconsin... I talked earlier about Milwaukee being outstanding, but in Wisconsin, what we were able to do was to build a bipartisan coalition to support AIDS funding. It began way back with Governor Tommy Thompson, who was a Republican, and it continued with Governor Jim Doyle, who was Democrat. And those two governors made it clear to the legislature that they wanted a bipartisan commitment to fund AIDS services. It helped us build the integrated system that we've been talking about, that the Centers for Medicare and Medicaid Services declared the AIDS Resource Center of Wisconsin and Vivent Health as the very first HIV medical home in the country. We led the country with this model. We made certain that we would replicate this system in other parts of the state, believing that the person living with AIDS in Superior, Wisconsin, is ever as important as the person with AIDS in Milwaukee. And we did that in expanding statewide, to make this system of care and treatment available to anyone with HIV/AIDS in the state of Wisconsin.

Audrey Nowakowski: Taking a very broad look back and forward, as things have changed over the 40 years for the better, how do you continue to shape this legacy and emphasize the need for this in an era where, fortunately, we're past the crisis, but not past the need of care for everybody?

Brandon Hill: Yeah. Today we're really looking at this entire continuum of the HIV epidemic. For the onset, the early days, a lot of the work focused on care. And we're reaching a point where we have many people engaged in care, whether with us or other models of care, and prevention now, so this is the new arm. This was something that only within the last 15 years became possible, was the use of antiretroviral medications for prevention. And this has become a game-changer for folks who might be at risk for HIV exposure. And bringing that to life is the new challenge. So we see this full arc of managing the virus for folks were living with HIV and then preventing any transmission or subsequent infection for those who are not. So we're doing a lot of work to identify those individuals and promote education and testing and access to prevention for populations who might be at an elevated risk for HIV exposure.

Audrey Nowakowski: Well, I want to thank you both so much for joining me today to share this big look back and what's yet to come. So, for today, Brandon and Doug, thank you so much for being on Lake Effect.

Brandon Hill: Thank you for having us.

Joy Powers: Dr. Brandon Hill is the executive director of Vivent Health. Doug Nelson is the former director of the AIDS Resource Center of Wisconsin. They both joined Lake Effect's Audrey Nowakowski to reflect on HIV care over the last four decades.