While some HIV prevention program funding ended in June, organizations have long been preparing to keep meeting their patients’ needs.
Florida receives significant HIV funding from both federal and state sources. Earlier this year, the Trump administration eliminated five CDC HIV prevention branches, including public health communications, modeling, behavioral surveillance, training and non-lab research, even with Congressionally appropriated funding.
Many grants also have ended, including the Take Me Home testing program. CDC grant programs are also necessary for clinics and pharmacies to utilize the 340B program.
This program allows them to purchase medications, such as PrEP, at reduced prices and use those savings to assist un- and underinsured people while providing other essential services, including HIV testing.
Some organizations like Pineapple Healthcare decided to look at other options for funding.
Owner Ethan Suarez told Watermark Out News in May that Pineapple Healthcare does about 150 rapid HIV tests a month, and with each test costing $6.75 a piece, that would add about $12,000 a year to their budget.
It led the organization to purchase Orlando’s One Magical Weekend, which now acts as an annual fundraiser for their work. It returned in early June under their guidance.
26Health will still offer free testing in Orlando, having taken funds from other areas to put finances toward HIV test kits.
“We were able to be in a financial standing to absorb costs of HIV test kits, which I know is not the same for many other health centers that don’t have the budget and the size that we have,” Chevalier Lovett, vice president of impact and advocacy, says.
Lovett says he wants people to know that it won’t just be 26Health that still offers free testing. He worries that people will hear about the funding cuts and think testing will come out of pocket, therefore making them not want to know their status.
“The verbiage around it is extremely important. Not only does it affect organizations and how we have to figure out how to structure HIV testing and still provide it for free for our communities, but it’s going to affect people in their psyche,” he says.
As a non-partisan organization, 26Health tries its best to work with anything and everything they have, Lovett adds.
Dr. Luisa Mena, chief medical officer, says as long as 26Health is standing, they will continue to provide free HIV tests. She says they have to consider those organizations that may not be as fortunate as them.
“We have a mission and a vision to impact the community in positive ways the best that we can, to change lives, to help people reach their goals with their health, not only mentally but physically,” Mena says.
HIV attacks the body’s immune system, specifically the CD4 cells (T cells), leading to the condition known as AIDS. While HIV is a manageable health condition with proper treatment, it remains a significant global issue: the World Health Organization estimates that approximately 38 million people worldwide are living with HIV.
With the latest available data, Florida ranks third in the nation for HIV diagnoses. In 2022, Florida identified 4,606 new HIV diagnoses, according to the Florida Department of Health.
Orange County had a high rate of people living with HIV in 2023, with 10,404 cases. The year prior, there were over 14,000 people living with HIV and 588 new diagnoses.
In 2023, Pinellas County had 5,270 people living with HIV and Hillsborough Country had 8,263 people living with HIV.
Demographics in Florida’s HIV cases also show that Black and Hispanic communities are particularly affected, with infection rates significantly higher compared to white Americans.
According to the Florida Department of Health, there were 2,129 HIV diagnoses for non-Hispanic Black people and 1,545 HIV diagnoses for Hispanic people in 2023. The number of HIV diagnoses for non-Hispanic White people was 975 in that same year.
To meet the needs of Tampa Bay’s community, Metro Inclusive Health is able to use contributions by both donors and patients to increase testing capabilities. There have been additional supply purchases in the past, notes Brian Bailey, chief marketing and experience officer.
In 2024, Metro Inclusive Health received donations from Trevor Burgess and Gary Hess to bolster their testing program. Over $700,000 was put into savings where it could then go back to the community, Bailey says.
“HIV is one part of it,” Bailey explains. “But STIs have also been on the rise. This is an example of how we’ll meet the needs of the community. We were very interested in going to full STI testing kits, and their donation made that possible.”
At Metro Inclusive Health, there were 31,761 health center visits, 31,085 lives assisted and 2,992 total new patients in 2024, according to their most recent annual report. There were 4,351 HIV positive patients and 100% of them were linked to care.
Testing goes hand-in-hand with preventions and health navigators at Metro Inclusive Health. They work to maximize each testing experience to educate patients about PrEP and nPEP to prevent HIV and DoxyPEP to prevent common STIs.
“In our 30-plus years of being in this area, we’ve faced a lot of challenges, but we always find a way,” Bailey says.
Bailey says the organization is ahead of the curve when it comes to fulfilling its mission. They exist to provide inclusive and supportive health and wellness services to the diverse communities in the Tampa Bay area.
Some healthcare clinics are contracted with a for-profit, like BLISS Health in Orlando. Johnida Pena, executive director, says this allows for assistance with purchasing HIV tests.
“BLISS Health purchases their own testing, and they’re willing to go ahead and donate to the nonprofit to make sure that we have those, so we are fortunate for that,” Pena says. “Had we not had BLISS Health’s ability to donate those things, it would put us in a very tough situation.”
She says that if BLISS Health couldn’t offer free testing, the community would suffer the most. She wants patients to know that they will stand up for those in need to make sure everyone has a voice in this time of constant change.
“With us all standing together, we have the ability to be louder than any line that’s being signed by someone who doesn’t know better,” Pena says. “…They’re signing off on a [budget] document that they think financially, ‘This is going to help us,’ but don’t realize how it’s impacting the people down at the bottom, financially or health-wise.”
Pena says HIV testing is life changing and that she doesn’t want people to be afraid to get tested. People who don’t know their HIV status are the most at risk when it comes to the federal changes, she notes.
According to a statement on the CDC website, the usage of PrEP can no longer be monitored due to its HIV Division staff reduction. As part of a staffing reduction, the Division of HIV Prevention branches that produced HIV incidence estimates and provided the statistical expertise needed to assess PrEP coverage were eliminated.
The CDC is currently evaluating plans and capacity to resume this work.
In Florida, most of the organizations produce data with electronic medical records to keep up with the number of patients being tested. This allows them to report any positive HIV test to the health department.
When it came to looking at options for funding, Inclusive Care Group in Tampa Bay didn’t look toward the government. Dr. Antonio Luis, its founder, says when he started his practice, he focused on looking at other sources of funding to offer free HIV testing.
“I really focused on not looking at grants that the government would be able to control… and not relying on somebody else to be able to make the money for us, so we’re not really changing anything,” he explains. “We’re still getting people’s insurance. We’re still getting people access to care.”
With the CDC not monitoring PrEP, Luis says smaller organizations in rural areas will suffer the most. He worries that there can be a rise in cases as it can start in different populations.
“The problem is, it’s not the community centers… it’s not the private practices that have large clinics with LGBTQ populations,” Luis says. “It’s the smaller places that might all of a sudden have an HIV infection or an STI and not really know what to do next, not know that HIV is still a thing. There are a lot of people who still don’t know what HIV is and doctors kind of turn a blind eye to that.”
As of March, the Florida Department of Health was slated to lose $495 million in funding for infectious disease control, including HIV, due to a federal move to cut public health funding, the Sun Sentinel reported. A judge temporarily blocked these cuts, but the initial loss of the funding had already impacted HIV prevention and treatment efforts.
Watermark Out News reached out to the department for comment. Communications Manager Kent Donahue advised he would research the request but did not respond to our additional request for comment as of press time.
For some locations, HIV tests can cost the organization $15 per test. Dr. Steven Barnett, chief medical officer of CAN Community Health, says the CDC might have gotten a better price for tests but it may not be by much. He says the company will not let this decision impact their services throughout Tampa Bay, Sarasota and Central Florida.
“I would say, even as a nonprofit, CAN Community Health has been very good financial stewards,” Barnett says. “And what we’ve been able to do is to absorb [costs] so far … we remain 100% fully committed to continuing to do what we do.”
CAN Community Health will have to “tighten up” to be proactive in their savings, Barnett adds. The organization wants to provide services but it knows they won’t have grant funding. There are donors who have built their brand and have become loyal to CAN Community Health, Barnett says, and this has pushed the community to rally and unite behind them.
Barnett says he would like to see change in the government funding and CDC, noting he thinks this decision was made haphazardly.
“I think a lot of this is geared towards certain segments of the LGBT population, but it can sweep everything along with it,” Barnett says. “If they’re doing things to one [demographic], it still pulls us all in.”
Health organizations want Floridians to support them in these challenging times, as almost all of them said having advocates behind them allows them to campaign for further assistance. The support can mean showing up to their events or sharing news from the organizations on social media.
Becoming a patient can be the most impactful way to show support for the organizations, most add. They want communities to know they aren’t alone and that they know how serious the matter is — but most importantly, that it won’t stop them from serving patients’ needs.
“I think a lot of people right now are disappointed in what’s happening,” Luis says. “I’m not surprised, and I don’t think a lot of us are… I’m glad that we’re here and that we’re growing as much as we can so we can be a beacon of hope.”
For more information about Central Florida-based clinics and their services, visit PineappleHealthcare.com, 26Health.org and BLISSHealth.com. Learn more about Tampa Bay-based clinics at MetroTampaBay.org, InclusiveCareGroup.com and CANCommunityHealth.org.
