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Florida cities lead the nation in new HIV diagnoses and very little has been done about it 

State of denial

Editor’s note: This story has been updated with comments from Gov. Rick Scott’s office and the Florida Department of Health.

When Charlotte Davis was 16 years old, she could easily carry her mother's frail body in her arms.

During the late '80s in Miami, Davis became the primary caretaker for her mother, Primrose Rolle, who had been diagnosed with HIV. As the virus progressed into AIDS over the next two years, the beautiful, vibrant woman deteriorated before her daughter's eyes. Toward the end of her life, Rolle's face was sunken in, her head was covered in wispy, soft baby hairs, and she was so thin that Davis could pick her up out of the tub after bathing her.

One afternoon after school, Davis found her mom lying in the car, too weak to drive to the pharmacy to get medicine. Davis held onto the wheel and, step by step, with her mother's head in her lap, her mom taught her how to drive.

"I can remember family members turning their backs on us," Davis says. "I can remember an aunt spraying her couch down with bleach and spanking her child for drinking out of the cup that my mom had. I can remember when she passed away in 1990, nobody really wanted to admit what she died with – everybody was saying it was cancer. So I definitely understand how it feels to still feel alone when you're diagnosed. There's not a lot of people who are willing to stand in the gaps with you for this disease."

A year after her mother's death, when Magic Johnson announced he was HIV-positive, Davis remembers watching it on TV and crying, wondering if the same medicines could have saved her mother. The experience pushed Davis, who now lives in Orlando, to help others diagnosed with HIV in African-American communities. Sometimes, that means taking people to get tested, even traveling to clinics as far as Miami and Tampa to keep their diagnoses confidential. Other times, it means picking up medications or driving people to doctor's appointments.

She's also recommended some people leave Florida for Atlanta and New York City, where there are better services and state officials have committed to ending HIV transmissions through injection drug use by 2020. Last month, New York Gov. Andrew Cuomo announced the expansion of a state program to help almost 7,000 asymptomatic HIV-positive residents get public assistance for food, housing and transportation. The city and state have committed more than $83 million for the first-year expansion of the program, which already serves 32,000 low-income residents with symptoms.

Although HIV rates have plummeted nationwide, in Florida the virus continues to ravage communities, with no significant decreases in new HIV infections since 2010 and more than 1,916 deaths in 2014. Among states, Florida had the second-highest rate of HIV diagnoses among adults and adolescents in 2015, with 27.9 new cases per 100,000 people, almost double the national rate, according to the Centers for Disease Control and Prevention. The Orlando metro area ranks sixth among U.S. cities for the highest rate of new HIV diagnoses, behind Miami; Jackson, Mississippi; New Orleans; Baton Rouge, Louisiana; and Atlanta, according to 2015 federal data presented by AIDSVu, an interactive project developed at Emory University. In Central Florida, the rate of new diagnoses peaked at 25.7 cases per 100,000 people in 2015, adding 614 new diagnoses to the state total of 4,849 cases for that year. In February 2016, CDC researchers predicted that if current HIV diagnosis rates persist, about one in two black men who have sex with men and one in four Latino men who have sex with men in the U.S. will be infected with the virus.

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Unlike the focus on AIDS during the '80s and '90s, advocates say Florida's epidemic is silent, with little attention paid by the public or state lawmakers in terms of increasing funds for testing and care, after years of cuts to the health department.

"It just seems like Orlando is so far behind when it comes down to programs provided for communities of color," Davis says. "Can you imagine getting an HIV-positive test and being told you have to wait three months for an appointment with the health department? These people just found out that something is going on in their bodies that for the most part they know nothing about. All they know in their minds is it kills you and that it's something you can never get rid of. In three months, can we really say their life is not in danger if they're not getting the medications they need?"

Rep. Carlos Guillermo Smith, D-Orlando, looked into Florida's HIV/AIDS funding this past legislative session after Dr. Kevin Sherin, director of the Florida Department of Health in Orange County, said at a local meeting that lawmakers needed to provide the agency with 23 more epidemiologists and look at HIV funding statewide, especially if they wanted to expand the use of pre-exposure prophylaxis, or PrEP, a daily medicine for people at high risk for HIV that lowers their chances of becoming infected.

"We need to look at the HIV funding statewide," Sherin said at the Jan. 17 meeting. "Here in Central Florida, we have the fifth-highest HIV rates in the United States, we have the third-highest HIV rates statewide and we have 14,000 prescriptions filled in our clinic alone. ... It would take dollars."

But Smith says there were no major increases this year to HIV/AIDS funding in Florida. Smith provided Orlando Weekly with a copy of the summary of HIV/AIDS funding in Florida for the 2017-18 budget given to him by Rep. Jason Brodeur, R-Sanford, which shows a less than 1 percent increase in funds.

The document provided by Brodeur, chair of the legislative health and human services committee, outlines $285 million in federal and state funding spent on HIV testing, patient care, prescriptions, public education, prevention, medications for inmates and budgets for county health departments, with $164 million of that money coming from the federal government. The document doesn't count the $95 million in federal Ryan White CARE funds for primary medical care and essential support services, distributed directly to counties, or the $45 million given to Florida by the CDC in the past for disease monitoring and research on preventing HIV. The federal government provides to the state the majority of the funds described in the document for distribution based on need – in fiscal year 2015, almost $317 million was given to Florida through HIV/AIDS federal grants, including money from the CDC and a housing assistance program for low-income people with HIV/AIDS, according to data from the Kaiser Family Foundation.

The money Florida puts toward its HIV/AIDS epidemic is mostly recurring funds, some of which it's required to do if it wants to receive federal matching grants at all. The one non-recurring fund in the state's 2017-2018 budget was $1 million for Florida academic and research institutions designated as Centers for AIDS Research by the National Institutes of Health. At the same time, $1 million in non-recurring project funds in the 2016-2017 budget for the HIV/AIDS Outreach for Broward Health, Hope and Health Center, HIV Care program and the GLBT Center of Central Florida were not renewed.

The Weekly reached out to Brodeur for a comment but did not hear back by press time.

"The budget is a reflection of our values," Smith says. "And so, until we have a budget that fully funds these types of HIV programs, we're going to be stuck in the same place. The reality is we have not expanded investments in test-and-treat programs, we have not expanded the needle exchange pilot program, we refused to expand Medicaid and we have not expanded when it comes to making sure our most vulnerable populations who are uninsured have access to medications like PrEP, so there will be likelihood of new HIV transmissions. Some people in Tallahassee don't even know what PrEP is."

Mara Gambineri, spokeswoman for the Department of Health, clarified that the agency spent in the 2016-2017 period more than $258 million in federal grant and rebate dollars, as well as $36 million in state general revenue for HIV/AIDS prevention, surveillance, treatment and other HIV/AIDS activities. That includes $218 million in Ryan White funds provided at the local level and almost $41 million provided by the CDC to DOH for prevention and surveillance.

Gambineri says the DOH is committed to reducing the incidence of HIV infections through four key strategies: Routine screening for HIV and implementation of CDC testing guidelines; increased testing among high-risk populations and getting people into the care system; the use of prevention strategies, like PrEP to reduce the risk of contracting HIV; and increasing public awareness about the virus and high-risk behaviors.

"Florida is a national leader in HIV testing with a wide-range of statewide services," Gambineri says in a statement. "The department provides high-quality HIV testing services using the latest testing technology at each of the 67 county health departments. Last year, over 367,000 tests were conducted."

It's difficult to pinpoint dollar for dollar exactly how much Florida is spending specifically on HIV/AIDS programs, but a September 2016 report from the Department of Health on Florida's financial resources related to HIV/AIDS funding says the state provides only about 12 percent from its coffers. The same report includes HIV/AIDS plans from each of Florida regions, including a plan for the Orlando service area put together by partners from the Health Council of East Central Florida.

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"Many local regions, including East Central Florida, have had to reduce funding for services from eligibility determination to medical case management to ambulatory care," says the report from Orlando providers. "These reductions have translated to a shrinking healthcare workforce, and in some areas, wait lists for newly HIV-diagnosed and identified individuals to enter care. ... The simple math of an ever-increasing HIV-positive population trying to be served in a healthcare system whose funding cannot keep pace with the need and with rising costs yields an unfortunate product: shortfalls in care to a critically fragile community."

Last year, when Gov. Rick Scott was asked about the state Health Department removing more than 1,500 HIV diagnosis cases from state rolls in 2014 because they were duplicates, a spokesperson for Scott touted that Florida had invested $34 million in AIDS/HIV prevention in 2016. But as PolitiFact reports, that money was actually from the CDC, not from state coffers – that same year, Florida actually invested an additional $1.65 million out of its $82 billion budget.

Lauren Schenone, spokeswoman for the governor’s office, says Scott recognizes the importance of providing a robust response to combat HIV.

"We are proud that over $290 million dollars of federal and state funds will be allocated in Florida this year to combat and treat HIV/AIDS," Schenone says in a statement.

David Poole, director of legislative affairs at the AIDS Healthcare Foundation, says the decades he's worked to help people with HIV have been gratifying and heartbreaking. He watched many of his friends die in the early '90s – now, people are still dying, though much more quietly and with less visibility because of the stigma still surrounding the virus. Poole says 30 to 40 percent of the population in Florida living with HIV is not on sustained medical treatment.

"That sense of urgency is gone in the Florida Legislature because there's other priorities," Poole says. "Our greatest source of funding for care is still the Ryan White safety net program. It's tough because we talk to bipartisan leaders, we get a lot of positive nods and we're not able to rally the troops. I've been doing this for 25 of the 36 years of the epidemic, and it's frustrating to have so many good tools at our fingertips to prevent the disease and not be able to use them."

 After years of struggling to get a bill passed through the legislature, Dr. Hansel Tookes finally opened the first needle exchange program in the state last December in Miami, decades after many states opened their needle exchange programs in the '90s. IDEA Exchange, which hopes to curb HIV infections in drug users who share and reuse needles, is still prohibited from obtaining federal, state and municipal funds, and runs solely on donations. Tookes says he regrets that the pilot program was limited to Miami, because places like Orange County need the program to combat the heroin and HIV epidemics.

"One of the really sad things about what we see in South Florida is there's a disproportionate affect on the poor community," he says. "People from already disadvantaged backgrounds don't have access to care. South Beach has the highest rate of new infections ­– more than sub-Saharan Africa."

Arianna Lint, founder of Arianna's Center in Fort Lauderdale, says the state and other nonprofits could do more to reach out to transgender women who are HIV-positive, like herself. After immigrating to Florida from Peru, she says she was diagnosed with HIV at the Orlando health department in 2006.

"I thought it was a punishment for who I was," she says in Spanish. "I didn't know anything, and other girls like me didn't talk about it because the stigma was so bad. Thank God in 2008 I went to a national HIV conference in Orlando and met other transgender activists who understood the same struggles."

Working at various organizations and now at her center, Lint says she caters specifically to the trans community living with HIV. Like Davis, Lint's work sometimes involves going to pick up medications for people at the pharmacy because they don't want to be misgendered, helping people get hormone treatments along with their HIV medicines or even helping organize their pill box with the new medicines.

"It's very difficult to get transgender girls to stay in care because of the discrimination they face at agencies or just bad treatment at the clinic," Lint says. "Discrimination comes from partners who divulge HIV status or are criminalized by the state for having HIV, even if they're undetectable. It's devastating for me to test women negative one year and then positive the next. I try to give them strength and be a healthy example."

If Florida doesn't step up now, it's not clear yet how funding for HIV/AIDS will be handled at the national level. Last month, six people resigned from President Donald Trump's advisory council on HIV/AIDS for various reasons, including that the administration has "no strategy" to address the epidemic and Trump's efforts to repeal the Affordable Care Act, which advocates say has strongly benefited HIV-positive people and helped fight the epidemic.

Dr. Patrick Sullivan, lead research for the AIDSVu project, says he decided to remain on Trump's advisory council because he felt he could make more of an impact that way, though he doesn't blame those who left. The rate of new HIV diagnoses has decreased by 18 percent in the nation in the past seven years because of investments in testing, care and health measures like Obamacare, Sullivan says, but that could be easily reversed with the wrong policies.

"If we don't take prevention steps, this virus will re-emerge and reassert itself," he says. "Stigma actually threatens the gains we've made in HIV prevention – I'm talking about stigma against people with HIV, anti-gay stigma, homophobia, racism and other types of marginalization. That's at odds with the goals of public health."

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