Florida leads the U.S. in the number of new HIV cases and has the nation’s third highest infection rate, according to Centers for Disease Control and Prevention data.
The state reported almost 4,400 new HIV infections in 2019, the most recent data available for the federal agency’s HIV surveillance report. Florida’s infection rate averages out to 23.7 cases per 100,000 people, trailing only the District of Columbia and Georgia. Florida is also well above the national average rate of 13.
Hillsborough and Pinellas counties have been listed by the federal government as among 48 “areas of concern” in the nation based on infection rates. Hillsborough reported 266 cases in 2019 and another 184 people in Pinellas were diagnosed with the virus.
Despite the increase, Florida’s 2019 caseload is still below 4,700 infections it recorded in 2016. But Tampa Bay groups that work with AIDS patients remain concerned that people are putting themselves at risk because of a lack of awareness that they’re infected and could potentially transmit it and the availability of antiretroviral medications allows those who have HIV to lead relatively normal lives.
There is also concern that Florida is failing to persuade enough people to use PrEP, or pre-exposure prophylaxis, a daily medication targeted at high risk individuals that significantly reduces the risk of catching HIV.
“We’ve taken the fear out of being infected,” said Joy Winheim, executive director of Empath Partners in Care, or EPIC, a group that provides one stop treatment and counseling centers for patients. “Because of that, people are more willing to take the risk of getting HIV and are not using condoms or PrEP.”
The pandemic likely prevented people from getting tested too, Winheim said, potentially putting others at risk even as the lockdown may have reduced risky behaviors.
“The number of people tested will be lower,” she said. “We won’t know what it does to our infection rates until the end of this year when infection numbers come out.”
PrEP is estimated to prevent more than 90 percent of infections in men who have sexual relations with men and 70 percent of infections in people who inject drugs, according to the Journal of America Medical Association.
But only about 8 percent of the estimated 121,000 Florida residents considered suitable candidates for the drug took it regularly in 2018, according to a recent study by the Division of Infectious Diseases and International Health at the University of Virginia.
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By comparison, New York’s usage rate the same year was almost 30 percent. Its statewide infection rate per 100,000 of population is 12.6, almost half of Florida’s.
“The sheer number of people they can get on PrEP; we’re not having that kind of success,” Winheim said.
Education programs aimed at Black, Hispanic and gay men are considered critical to curb the spread of the disease. Almost 60 percent of the Florida infections diagnosed in 2019 were of gay men, according to Florida Department of Health data. Black and Hispanic people made up 74 percent of Florida’s new infections.
Winheim said it’s tough changing the behavior of people who are already dealing with destabilizing issues like poverty, substandard housing and homelessness. Her group works in both Hillsborough and Pinellas to help at-risk individuals stabilize their lives so they are better able to care for their own health. It recently opened a new sexual health center just north of St. Petersburg’s Childs Park neighborhood in the next few weeks where people can get help with housing and other social services — and also get tested for HIV.
“The more people that know their status,” she said, “the better chance we have to reduce the number of people who are becoming infected.”
Under the banner “undetectable = untransmittable,” education material from the Centers for Disease Control and Prevention has highlighted how antiretroviral medication suppresses the amount of the virus in the bloodstream. The low level of virus helps prevent “transmission to others through sex or syringe sharing, and from mother to child during pregnancy, birth, and breastfeeding.”
Metro Inclusive Health is one of the nonprofits groups charged with educating communities that have a higher risk of contracting HIV.
Before the pandemic that included attending community events like church fairs and street events in predominantly Black St. Petersburg neighborhoods like Jordan Park and Childs Park. Metro Inclusive Health works with health ministries at local churches and has persuaded several of them to add HIV to the list of conditions such as diabetes and sickle cell that they discuss with their congregation, said Brian Bailey, the group’s chief marketing and experience officer.
He said working with churches is critical to overcoming the stigma still attached to HIV that makes people less inclined to get tested.
“If you get in front of these influencers and share the data it’s eye opening and they want to make differences in their communities,” Bailey said.
The pandemic makes that more difficult. There are far fewer community events to reach people and the group suspended for about six weeks in 2020 a mobile bus service that goes into neighborhoods and provides screening, education and, if appropriate, a PrEP prescription.
Bailey said there is no one-size fits all message for the communities they serve. For example, there may be more “closeted” men in the Black community who don’t identify as gay and have sexual relations with men and women.
Black women made up nearly 60 percent of the Florida women diagnosed with HIV and over 95 percent of Florida women who contracted HIV did so through heterosexual sex, according to Florida Department of Health data. About half of all Florida women who have HIV are over the age of 40.
“You have to really get into those communities that are getting impacted,” said Bailey.
St. Petersburg retiree Michael Tollar was living in Buffalo, N.Y., when he was diagnosed with HIV back in 1985. His partner succumbed to the disease a year later.
It was an era when HIV was fatal for most. Tollar, now 74, was put on an experimental drug called Crixivan that he believes prolonged his life.
He moved to Tampa in 1995. When he reads about the high number of cases in Florida, he grows frustrated that people are not taking precautions. Even with the antiretroviral medication available today, he worries there will be a cost.
He has hepatitis C and severe kidney damage, serious conditions that he blames on the decades of medications he has taken.
“I want to say, ‘What’s wrong with these people?”