Florida health experts battling stigma surrounding HIV to stave off rising case numbers
In 2019, President Trump announced a challenge to lower HIV case rates to 75% by 2025 and 90% by 2030. It was and is an ambitious goal, but a local team has a plan that focuses on diminishing stigma and increased testing.
HIV/AIDS numbers continue to rise in Florida, the state with the second most new cases. Orange County has the third-highest total in Florida, behind Miami-Dade and Broward, but local experts believe they may have found a way to stop the spread and diminish the stigma surrounding the epidemic.
One fighter in the war to end the AIDS crisis is Dr. Marie Francois, the co-founder of the Center for Multicultural Wellness and Prevention in Central Florida. Francois said she became invested in the crisis after the Centers for Disease Control and Prevention labeled Haitians as the originators of HIV and a "gay disease" in 1982.
Francois, who was a doctor in Haiti, saw this as not only offensive, but also harmful.
"HIV is a human issue," she said. "The CDC put the disease in a box, and anyone who is not gay, who is not a heroin addict, who is not a hemophiliac, who is not Haitian, they think they are safe. So they are practicing the behavior that will put them at risk to acquire HIV."
Experts believe stigma still contributes largely toward soaring case numbers. Kara Williams is a coordinator for the state health department’s team working to reduce HIV numbers in Central Florida, designated as "Area 7."
Williams' jurisdiction includes Orlando, which ranked as the city with the sixth-highest total of new HIV cases in the country.
"We're one of the 48 jurisdictions within the U.S. that due to the burden of HIV, we were designated to come up with new innovative ideas," Williams said.
In 2019, all 48 jurisdictions were challenged by then-President Donald Trump to lower HIV case rates to 75% by 2025 and 90% by 2030. It was and is an ambitious goal, Williams said, but her team has a plan to get cases down that focuses on diminishing stigma.
"That's one key thing, because a lot of times, we have people that are not getting the services that they should receive, and then they have the stigma that's preventing them from receiving it," she said.
Williams' plan to lessen HIV loads is a multipart strategy that includes making more testing available to more affected demographics such as black and Latino communities.
At-home tests could be the key in fight against stigma
While Central Florida experts have created a myriad of ways to improve access to screenings, including making more available after 5 p.m., one important tool making a difference is HIV at-home test kits. The kits were first introduced in 2012. Williams led the Central Florida team to invest in at-home test kits beginning two years ago.
"That was due to COVID happening, and of course, everything started to shut down. But we wanted to make sure access was still available. So we started the home test kit initiative," she said. "What made our program unique is that we utilized social media and started using geofencing to reach (target) populations."
Williams admits that HIV numbers in Florida increased since 2019, with a 3% increase in diagnoses, but she has seen recent progress in Central Florida. Orange County was one of the only areas between 2019 and 2021 to experience a decrease in new cases and reported a minus-5 percentage points relative change.
The only other county in Florida's top 10 highest HIV-diagnosed counties was Pinellas, which ranks seventh and had a minus-32 point change.
Williams is hopeful that her efforts in getting more testing to community residents are responsible for the decrease in Orange, but she'll have to wait for 2022 data released this summer to see if the drop is a trend or is temporary - due, possibly, to fewer people socializing during the height of COVID. Although the at-home tests have been growing in popularity, Williams said, with a spike in demand of about 300 kits over the summer.
Francios believes Central Florida’s focus on getting at-home test kits to people with limited access to screening is a game changer because of how it normalizes HIV.
"In a way, it's more private, you don't have to be ashamed," she said. "The same way you go and have your blood pressure, your blood sugar, think about having your HIV checked. The same way you have a mammogram test done, you have your colon cancer test done, have your HIV test. Make it part of your health maintenance."
Changing the conversation from 'stigma' to 'hope'
Part of Williams' plan includes hosting more public events with survivors speaking about their experience to normalize the discussion around and provide education as well as preventative tools such as condoms and pre-exposure prophylaxis.
Violet Scott, a 23-year AIDS survivor, works with the center in peer support to help newly diagnosed HIV patients in Orange County. Recently, she spoke about her life experience during a World AIDS Day Festival at the Orlando Shakespeare Theater.
She thinks her position as a survivor has served to give hope to those recently infected, showing them they can still live perfectly normal lives. Although, she remembers how hard the adjustment can be. When she told her family about her diagnosis they didn't take it well, she said.
But that was because of the stigma they had come to associate with the disease. She still sees some of that same stigma.
"I think it's still lingering because people don't really understand the disease. Even though we educate, we put fliers out we have, you know, billboards and stuff people still don't understand," Scott said.
It doesn't bother Scott too much anymore. She recognizes that patience is required in educating the public, in the meantime, she's happy to keep sharing her story of survival.
"Twenty-three years ago, my hope was that I would live to see this day 23 years later. So you know, it's just time for me to share and encourage other people that you can live long, healthy, happy, successful lives," she said.