Experts Say Florida’s HIV Epidemic is Fueled By Stigma, Lack of Access to Care

WLRN Public Media | By Denise Royal

Published November 29, 2019 at 12:00 PM EST

Lynn Ismael performs a rapid HIV test on a blood sample at an event in Wilton Manors in 2013.

Stigma, poverty, immigration issues and access to care are among the main causes to blame for Florida’s high rates of HIV and AIDS.

More than 115,000 people in Florida live with HIV, according to the Centers for Disease Control and Prevention. That’s more than 12 percent of all the cases in the United States. In 2018 alone, Florida reported 4,906 new HIV diagnoses, a 3 percent increase from 2017.

To mark World AIDS Day, this Sunday, The Florida Roundup invited experts and advocates to discuss the HIV epidemic in Florida.

Dr. Hansel Tookes, director of the IDEA Exchange; Stephen Fallon, executive director of Latinos Salud; and Robin Lewy, program director for the Rural Women’s Health Project; shared their insights on the state of HIV in Florida.

This transcript was lightly edited for clarity:

The Florida Roundup: Dr. Tookes, let's start off with you. What's driving the high rates of HIV infection here in Florida?

TOOKES: It's a number of things, but I'd really like to point out that the Trump administration identified 48 counties nationwide that are high-priority counties, where more than half of the infections in the country occur. Seven of those counties are here in Florida. So we have a tremendous amount of work to do here in Florida.

Stigma is a large reason why we continue to have that. We continue to have many cities in Florida that stay at the top of the new HIV infections in our country. For instance, the Miami metropolitan area has had the highest rate of HIV many years running. That includes Fort Lauderdale and West Palm Beach. We need to make sure that people who are living with HIV are diagnosed and increase our testing efforts and make sure that we reduce barriers to stigmatize populations to getting into care.

Dr. Tookes, what is it about those seven counties in Florida? It is the state with the second most number of counties in terms of those high infection rates in the United States. What are the commonalities?

TOOKES: So the counties are [Miami-Dade], Broward, [Palm Beach], Orange, Hillsborough, Pinellas and Duval.

And basically we're seeing the vestiges of the South. The South has always been the part of the United States where we have the highest rate of HIV. There's the intersection of poverty. We have a lot of very impoverished communities in the South. We have the vestiges of segregation. So we [had] slavery. We also have the confluence of immigration. There are people who are scared to come into care, because they're scared about their immigration status. We also have very tough drug laws in the South. Miami was the first city in Florida that had syringe exchange programs.

We have all of this structure that actually makes it even more difficult for people who are at risk for HIV or living with HIV to get into care. And all of that has really come to a head in our state.

So there are special barriers here in the south. Stephen Fallon, tell us about the work of Latinos Salud and how you address some of these problems.

FALLON: Latinos Salud was founded 11 years ago, primarily to serve gay and bisexual Latinos, as well as the transgender community and anyone living with HIV. We provide education, testing and linkage services, which is similar to what many other organizations do.

We focus on the Latino population. ... People come in the doors, and they see a face that's familiar to them, in a language and even a dialect that's familiar to them. Cultural norms put them at ease. The Latino population has historically put family ahead of self-care and delayed taking care of themselves. And when you can speak among peers, you're more likely to finally get that test or finally get into care.

Are you seeing that kind of acceptance grow, that kind of self-interest grow?

FALLON: Yeah. Our number of HIV tests that we conduct every year has gone up in the past three years from about 1,000 to 5,000 tests a year.

This is a complicated, big state with lots of different demographic groups, urban areas, rural areas. Robin Lewy, you're with the Rural Women's Health Project. Addressing the HIV epidemic has special challenges in more rural areas of the state. What are some of those?

LEWY: Working here in north central Florida, what we are aware of is really the historical challenges. Isolation is just a great problem, and it's the combination of isolation that distances people from services, but it also keeps people to themselves.

And our concern has been: How do we make sure that the amazing advances that take place in some of our larger urban communities can be reflected in the work here? We know that, historically, the epidemic within the state has impacted those in larger cities. But we really are under-testing the rural community. And so it concerns us greatly about what the true impact is of the epidemic within this state.

Do you work with trans women, as well?

LEWY: In terms of women that we serve, we serve two populations: One is women living with HIV who come from a 15-county area. And the second is really the Latinx community, and that would be a much broader. So that does include transgender, heterosexual, single, young, old people.

Let me ask all of you about the assistance at the state level and obviously the federal aid that is expected to come here with the president's initiative to reduce infection rates by 90 percent over the decade.

Dr. Tookes, you're on the front lines of this. You pioneered a needle exchange program in Miami that has gotten support now statewide. Does that have, at its heart, an HIV infection directive to try to address that threat? And what kind of support are you seeing from local and state and federal governments?

TOOKES: The fact of the matter is: If you don't share needles, you can't share infectious diseases. So you can't spread HIV. You can't spread hepatitis C. It's going to be really important for our cities and our rural communities to implement syringe exchange programs.

I do the inpatient HIV service at Jackson Memorial Hospital. It's probably one of the largest public hospitals in the country. The thing about Florida is, every single day in Florida, black people die of AIDS. Every single day in Florida, Latino people die of AIDS. People don't realize that. But I've looked it up many times every single day. And I don't have to look it up because when I'm attending on the HIV service at Jackson, I see this. I see this every single day.

And so not only does Florida have the highest rate of new infections in such a high prevalence of HIV — Miami, we have the highest rate of AIDS. So those are people with end-stage disease. Those are people with very high viral loads, where it's very easy to spread HIV. And those are also people who are at very high risk of dying from the disease and dying of preventable death.