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

Vivent Health is celebrating 40 years of providing HIV care in Wisconsin. Formerly known as the AIDS Resource Center of Wisconsin (ARCW), Vivent has been supporting patients since the very beginning of the AIDS epidemic.

When the epidemic began, the disease had no treatment. Stigma resulted in discrimination and prevented people from getting care. Vivent Health addressed those needs through both medical care and an integrated, community-built care model that continues to help Wisconsinites today.

Vivent Executive Director Dr. Brandon Hill says 8,400 Wisconsinites are living with HIV today, with 80% of them receiving care through Vivent Health. For 95% of those patients, the virus is at an undetectable level.

“That has driven down the new diagnoses significantly since the ‘90s, where we're at about 700 cases a year," Hill says. “Now we're at right around two, or less than two [per year].”

To look back at how HIV care has adapted over the last 40 years, Lake Effect’s Audrey Nowakowski is joined by Hill and Doug Nelson, the former director of the ARCW for 24 years.

This interview has been edited for length and clarity.

Audrey Nowakowski: Let's set the scene for what the earliest years of the AIDS epidemic were like here in Milwaukee. Doug, you were the director of the ARCW for over 20 years. Can you share your perspective of that time?

Doug Nelson: 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. There was a lot of fear around AIDS. There was a a lot misunderstanding about how HIV or AIDS was transmitted. That combination of fear and misunderstanding resulted in significant discrimination in schools, in workplaces and in the health care 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, there was not a nursing home in Milwaukee or in Wisconsin that would take an AIDS patient. So, we threatened 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. That experience said to us that there was going to be a need for aggressive, aggressive advocacy in support of people with AIDS. And so, we concluded 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.

An important, central point to all of this is that medicine alone cannot stop the spread of HIV. So, let's talk a bit more about that integrated care. How did the traditional healthcare system fail to serve or support people with HIV?

There was tremendous concern to make sure there were proper infection control procedures, so that HIV/AIDS would not spread among health care workers, or from patient to patient. That was particularly significant for 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 concerned about that.

So, 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. Those healthcare systems were also integrated with a very robust social service system — extensive case management by social workers, legal assistance with attorneys, support groups, a food pantry — all of that came together. It took awhile, when you're desperately searching for the funding to pay for that.

Courtesy of Vivent Health

But, I have tremendous pride in Milwaukee and Milwaukee’s 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. Corporations and businesses in Milwaukee were outstanding in making donations – Northwestern Mutual Life, Aurora Healthcare, Miller Brewing Company, the Milwaukee Foundation.

Thousands of volunteers came forward – many of them women, mothers, grandmothers, aunts, sisters who had a gay member of their family and were wanting to make a contribution. Our sports teams came forward. Paul Molitor from the Milwaukee Brewers and Clay Matthews from the Packers have both served as honorary chairs of the AIDS Walk. The Milwaukee Bucks also contributed. So, it was nice to see those entities join with businesses and so many donors to help us fund the services and build the integrated system that we did.

Dr. Hill, can you explain how Vivent’s model of care has continued to change and adjust over the decades?

Brandon Hill: What we've always strived to do is make sure that we’re meeting the epidemic where it is, and it’s been quite a transformation over the course of the 40 years. It’s adding and enhancing the same services that Doug [Nelson] mentioned and building facilities that parallel other local health systems, so there's no difference between them. Whether you walk into one clinic or another in our community, you're getting a state-of-the-art facility.

Courtesy of Vivent Health

We've done even more enhancements with dental. Early on, we were just able to be a support, but 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. HIV prevention efforts like the use of PrEP, or pre-exposure prophylaxis, can be mobilized to address where the epidemic is today, mostly among younger, queer-identified people of color, so our Black and Brown communities. Fortunately, right now we sit so close to the finish line for ending the epidemic that prevention is going to be our strongest tool, so long as we're able to continue providing prevention.

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: Changes in federal funding are by far the most direct impact. The Trump administration proposed, I think, over a billion dollars in cuts – both domestically and globally – to HIV-related funding, primarily for prevention. So, that’s CDC changes, changes in HIV-testing and STD-testing availability, that was definitely a target. Housing for people living with HIV was a target. The HIV Epidemic Program is on the chopping block, which was originally initiated by the current administration. So, they might be cutting their own initial plan, cutting overall funding for this effort to actually end the epidemic. So that's a direct threat. A more indirect threat that affects us is the level of awareness about HIV and the AIDS crisis. 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: I talked earlier about Milwaukee being outstanding. But in Wisconsin too, we were able 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 a Democrat. Those two governors made it clear to the legislature that they wanted a bipartisan commitment to fund AIDS services.

That helped us build the integrated system that we've been talking about. 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, Wis. is just as important as the person with AIDS in Milwaukee. And we did that, expanding statewide to make this system of care and treatment available to anyone with HIV AIDS in the state of Wisconsin.