“HIV lives with me — I am not living with HIV,” Saul Villalobos said.
Villalobos, a Venezuelan immigrant and case manager at OASIS Florida, an HIV testing center and care facility in Pensacola, still remembers every detail of the day he was diagnosed five years ago.
It was midnight on Aug. 2, 2016, when he sat down with his physician at the IDET clinic in Barquisimeto and the four impending words of doom were presented before him: “Your results are reactive.”
In what he described as his “world coming to a full stop,” Villalobos knew from that moment that the entire course of his life was about to change. The thought of telling his family was terrifying and the state of political corruption present in the Venezuelan government left no room for an HIV/AIDS conversation, nonetheless proper medications and treatment.
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HIV is the virus that can lead to AIDS, which is the late stage of HIV infection that occurs when the body’s immune system is badly damaged because of the virus.
The 40-year mark of the HIV pandemic and the first reported cases of AIDS fell on June 5. Today, there are treatments, easily accessible testing, services and programs and a range of prevention options including pre-exposure prophylaxis of PrEP.
HIV is a disease that affects about 37 million people as young as 13 years old worldwide, and of whom 22 million are on treatment.
Villalobos has learned to live, not just survive, as one of those statistics.
However, Kurt Goodman, executive director of OASIS Florida, said as numbers steadily rise and fall, the one issue that has not changed within those 40 years is the stigma surrounding AIDS, especially in Pensacola.
It is what drives people to avoid testing and treatment altogether. For years, clients have strolled through the back entrance of OASIS to avoid being seen by the public eye and once taken into care, refuse and hesitate to make life adjustments and take medications — a “sad” and “embarrassing” reality with a tough pill to swallow.
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Although the “gay disease” stereotype surrounds the AIDS conversation today, Goodman counters that claim and urges everyone to become better educated on the trending numbers in heterosexual communities.
“43% of new HIV infections were heterosexual in Escambia and that percentage is climbing every year, partly due to ignorance and the very conservative area of Northwest Florida. The rate of new HIV infections is obviously a concern because we would like to be seeing significant decreases,” Goodman said.
Almost 1 million people still die every year from HIV because they are unaware they have the virus and are not on treatment or start treatment late, according to the World Health Organization.
From 2017-2019, 2,133 people have died from HIV in Florida, 38 of whom were in Escambia County, seven in Santa Rosa and three in both Walton and Okaloosa counties.
The new AIDS cases and death rates remain consistent annually. Last year, 16 people died of AIDS-related complications in Northwest Florida, according to Goodman.
“That’s 16 people who, if they were in care with us, would not have died. Anyone developing AIDS or passing away is only due to lack of treatment. I can’t stress enough how good HIV treatment is today — we’ve gone from a death sentence to a manageable chronic condition, if treated,” Goodman said.
In 2020, OASIS provided 15,437 units of medical treatment services medications, dental services, mental health services, housing services, food services and other social services to 8,841 clients at no cost.
Alexys Hillman, a family medicine doctor at Pensacola Osteopaths, said a seismic cultural shift needs to take place in Northwest Florida, and should have happened years ago.
Hillman said we need to end the “bootstrap mentality” that one day in the future, we will arrive at a happy ending with the spread of HIV/AIDS. She strives to remind people that living with the disease is not their fault and they shouldn’t be judged or blamed.
“Nobody considers that HIV is something that they necessarily need to worry about or anything that they need to think about, which deepens the stigma surrounding the disease even more — we need more preventative care as we don’t invest enough time or money in it,” Hillman said.
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Last year, there was a 6% decrease in new HIV infections in Northwest Florida, a step in the right direction. But metropolitan cities like San Francisco are reaching milestones with new HIV diagnoses declining 19% from 204 diagnoses in 2018 to 166 diagnoses in 2019, according to the San Francisco Department of Public Health annual 2019 HIV report.
“Our trends should be decreasing in double digits. Those cities are essentially eliminating new HIV infections because they have such great programs in place and the public and media really get behind it and help drive that message,” Goodman said.
Yet Florida has the third highest rate of HIV diagnoses behind the District of Columbia and Georgia, totaling about 23.9 diagnoses per 100,000 people in 2019, according to Statista health care research expert John Elfein.
Both Goodman and Hillman stressed the necessity of sex education, safe sex and getting regularly tested in order to stray away from the judgmental mindset surrounding sex.
But HIV continues to have a disproportionate impact on certain populations, particularly racial and ethnic minorities, with Black communities nationally adding 42.1 HIV infection diagnoses per 100,000 people in 2019 and Hispanic and Latino persons adding 21.7 per 100,000, according to the Centers for Disease Control and Prevention.
With new research from OASIS Florida, Goodman said 1 in every 292 white adults have HIV in Florida, 1 in every 156 Hispanic adults and 1 in 49 Black adults.
“Those numbers really stick out to me as kind of a wake-up call, particularly in the heterosexual community here in Pensacola, that it really is affecting everyone,” Goodman said.
Hillman believes that HIV awareness, especially in Northwest Florida, is not strong enough due to the ongoing stigma surrounding LGBTQ communities and people of color.
“There are active organizations like OASIS Florida that can help bring an end to the spread of HIV in Northwest Florida as they do really great work — but not enough people know about it. It’s time to stop the judgment and start with education,” Hillman said.
Villalobos stressed how the stigma is not only present in the Pensacola community, but worldwide, where HIV is an issue decidedly ignored.
“The mindset of the conservative Catholic population doesn’t like to talk about it (HIV) too much. My sister, who is a neurologist, was the one person who educated me about it, on a personal level, but that education is not something the government and the public health system are willing to speak out about openly,” Villalobos said.
However, at his lowest point, Villalobos arrived in the United States in search of a better life. A disease Villalobos once unquestionably denied having has become an integral part of his life.
“I am now a model in the Pensacola community for HIV/AIDS prevention — so I guess I can say in some ways HIV saved my life,” Villalobos said.
