As World AIDS Day approaches, philanthropic organizations adjust to changing times and perceptions in the world of HIV

By : Billy Manes
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A little over a year ago, Orlando resident Logan Donahoo, 33, was frightened into a new reality. After receiving the typical glossing over on issues of STDs and HIV/AIDS from primary care physicians throughout his adulthood, the awkward nudges toward using protection during sex that ring in distant absolutes as if to brush the subject away, he got a clearer view.

“I got my annual physical done, and for my first time, even though I’ve been tested for HIV over and over again throughout my life. I finally got tested for [sexually transmitted diseases] and I got tested for HIV,” he says. “I got a little STD scare when the health department called me and gave me the scary news. Even though I knew that was within the realm of possibility, and I knew about partner notification, finally getting that phone call and knowing what that feels like made it hit home. So, I was like, ‘OK, if I can never have this happen again, and I can know that it’s something non-life threatening, then I will.’

Finally, he opened up with his doctor.

“The only other time I think I’ve ever talked about sexuality with a doctor, they asked if I was sexually active, 10 years ago, maybe,” Donahoo says. “And I told them, ‘yeah.’ And they asked if I used a condom every time, and I said, ‘Yeah, most of the time; there are lapses in judgment,’ and all he had to say was, ‘Never have those lapses again.’ And that was it. … It was just blunt and sex-negative and ugly.”

That’s when Donahoo, who was referred by his physician to the Orlando Immunology Center, began taking sexual preparations and personal care beyond the typical condom prevention methods: He started pre-exposure prophylaxis, commonly known as PrEP (or Truvada). It was a decision neither he nor his doctors took lightly.

“Finally getting to talk face to face to a medical professional who knows what they’re talking about was really impactful. I personally didn’t get any of the side effects,” he says, adding that any stomach discomfort was comparable to “eating bad food,” and, regardless, it went away within weeks. A $45 copay and prescription for Truvada that was effectively free (there are patient assistance programs offered through most HIV organizations).

“I’ve been on it for over a year and never even missed one dose,” Donahoo says. “You have to go to a lab and do your tests every three months, then you come back a week or two later to talk about your results. The three-month test is for all STDs including HIV, and then they check your kidney function; it’s the full battery of tests.”

The PrEP phenomenon is relatively new science in a three-decade health battle that has seen many within the LGBT community die instantly in horrific immune system failure or seemingly manage their way into undetectable viral loads through the course of what was once referred to as the “gay cancer” or the “gay plague.” We’ve seen Philadelphia, we’ve seen the AZT and the cocktails, we’ve seen the black markets, we’ve seen Dallas Buyer’s Club. And yet we seem to be forgetting.

“Hearing and seeing these early people that were training me, I’m like, ‘No, no. I saw the face of it.’” Donahoo says, saying he’s been training people about HIV since he was a teenager.

It’s a peculiar predicament facing Florida’s HIV-supportive network of agencies as the state’s reactive numbers of HIV infections is spiking. Earlier this year, it was reported that Orange County jumped up 47 percent in HIV-positive diagnoses. Similarly, Hillsborough County leapt 63 percent between 2012 and 2014; Pinellas jumped 32 percent, the Florida Department of Health reported.

At the same time, the U.S. Centers for Disease Control yanked its annual funding from the Greater Orlando area, choosing to concentrate Florida’s portion of a $216 million national campaign to redress the AIDS crisis, limiting its funding to three organizations in Florida that are located in St. Petersburg and in South Florida. Central Florida organizations are clearly feeling the pain of this, but they also seem more concentrated than ever on pooling their resources and facing down misconceptions in the AIDS fight.

It’s World AIDS Day on Dec. 1. Does anybody care anymore?

At a Nov. 9 lunchtime event-planning meeting of the Central Florida AIDS Planning Consortium in the offices of Heart of Florida United Way, the answers come quietly as to how to beef up the network in the region. The word “frustrating” appears more than once, as does “complacency.” In fairness, the group – or those who were able to make it to this meeting – is actually gathering to work out the logistics of its annual World AIDS Day celebration at the Walt Disney Bandshell on Lake Eola in Orlando. There will be testing starting at noon, a performance featuring local notables like entertainer Doug Ba’aser, testimonials are expected including one from the Orlando mayor’s office, as are speeches from the likes of Florida Health Department director Kevin Sherin and Orange County Health Department HIV/AIDS program manager Debbie Tucci, among others. Calls have been made to the mayors’ offices, arrangements are in the works for AIDS quilt panels being on display, but the excitement is clearly quiet. Everyone seems to know that there is some element of going through the bureaucratic motions here. At one point, Watermark was promised email responses to broad-stroke questions about services and redundancies. They didn’t arrive by press time.

“Last year, there were a few more people than there were before,” Tucci, who we spoke to after the meeting as she was unavailable for that particular gathering, says. “I think bringing it back to Lake Eola was imperative. Lake Eola, if nothing else, it brings out the diehards like me. It also brings around the people who are just walking around the park. And they stopped. You’ll get a message out to a lot of people who would never think to be tested.”

“Talk to the younger gay men in this community, and they don’t know about it. They don’t know what the panels mean [on the AIDS quilt]. That’s the double-edged sword,” Tucci says. “I don’t’ think it’s awful. I think we can turn it around … and find a way to make Prep in our toolkit for prevention to where we have that available, that everyone understands how it’s to be used.”

“On the other hand,” she adds, “I can talk to my nieces and nephews, but you know, there’s no fear. Which is really what we strove for. We strove to have one pill a day. It’s a case of be careful what you wish for.”

Apparently, 60-70 people showed up for the Orlando event last year, group leaders say. That’s a far cry from those counted in Orange County’s 47 percent leap in cases, a huge leap from Florida’s status at the top of new reactives (most of the region is in the top 20). Though at this year’s Come Out With Pride, only one new positive case was reported at a mobile testing facility, the GLBT Center is seeing a new case once a day on average as of November, according to Center executive director Terry DeCarlo. The disconnect is disconcerting to DeCarlo.

“Today is Nov. 11 and we already have 9 reactives,” he says over the phone.

“There’s been a large uptick in HIV reactive cases. We’ve got to get the word back out. There are alternatives with PrEP and nPEP [a similar treatment used after exposure], but people are confused about PrEP and nPEP.”

“You remember back in the late ‘80s and early ‘90s, we had ACT UP. It was in every newspaper, on every newscast,” he says. “You could not get HIV out of your mind. People are down to one pill a day. There is a good treatment. For lack of a better word, it is a manageable disease. They figure, ‘oh, it’s no big deal.’ My main big thing is it’s a disease. Why in the hell would anybody want a disease?”

So what’s stopping the message from resonating among the gay population? For one, many are living under the misguided notion that the disease is merely a manageable disease, one that has bypassed the LGBT community through the active communication of medical options and through the stories of our past; now it’s someone else’s problem. Another, most agree, is the continued stigma attached to HIV/AIDS cases. And, surprisingly, many with the infection are choosing to just give up on their care.

“I think the biggest thing is getting people back into care –to find people who have fallen out of care, and get their viral loads suppressed. That way they’re not spreading it,” Florida Department of Health of Orange County patient care contract manager Earl Hunt III says, adding, ““It’s being swept under the rug still. I just don’t think the prevention stuff is working, really. I mean, I hate to say it. But we’ve had plenty of effective interventions in the area. … it just doesn’t seem like it’s working. I think that’s another reason why the CDC didn’t fund us this year.”

Additional root causes run the gamut from politics to media to poverty. At the Nov. 9 meeting, Orange Blossom Family Health special projects coordinator Alelia Munroe directly addresses the indigent populations in Orlando, as her organization deals directly with homeless care.

“It is the last thing on their minds,” she says. “The first thing is to find shelter. But we have not really been able to quantify the number and/or percentage of homeless individuals who are HIV infected.”

Similarly, though jail populations are offered tests, the interest in maintaining care after release, and the seeming indifference of the jails themselves, has put some of the most threatened populations in the path of danger.

But even the most vulnerable of demographics, at least as far as wages go – another reason Orange is so high on the list, members of CFAP agree, is because of wandering populations and people looking for lows costs of living (meaning, low paying jobs) – is likely the most obvious.

“It’s so much instant gratification now through Scruff and Grindr,” Hunt says. “MSM [men-seeking-men] make up the majority;18-29 year-olds who were not around for all of the death.”

“I’ve seen studies on that and we’re definitely seeing increases in those younger populations,” Raymond adds. “We’re seeing it in older populations as well, but they’re more managed. Where we’re seeing the most increases in infection rates are in 18- to 24-year-old MSMs, black and Hispanic heterosexuals and MSMs.”

Also, it’s a complex philanthropic world of government and grants to right the ship in the ongoing AIDS crisis. There’s a relatively new playbook.

“The result of the researchers’ work was the HIV care continuum (or “cascade”), which they defined as having the following stages: diagnosis of HIV infection, linkage to care, retention in care, receipt of antiretroviral therapy, and achievement of viral suppression. Many in the HIV field at the Federal, state, and local levels have since used or adapted this HIV care continuum to better identify gaps in HIV services and develop strategies to improve engagement in care and outcomes for people living with HIV,” the federal website reports. “In 2013, President Obama established the HIV Care Continuum Initiative, directing federal departments to prioritize addressing the HIV care continuum as they continue to implement the National HIV/AIDS Strategy, accelerating efforts to better address drop-offs along the continuum, and increasing the proportion of individuals in each stage along the continuum.”

The president’s goals for HIV, which include a rate of 85 percent with undetectable viral loads, are currently unrealistic in Central Florida, especially when key funding grants have been quashed. At least for some, like Hope & Help and Miracle of Love, two Orlando organizations that are feeling the cuts in the services and staffs.

In July, at the same time that Orlando-area organizations were losing their funding, St. Petersburg-based Metro Wellness and Community Centers, a “one-stop shop” that raises and spends more than $5 million a year in donations and grants according to tax documents, was granted $350,000 over five years from the CDC to help with prevention.
Metro Vice President Priya Rajkumar reports that the organization is currently monitoring 28 people on PrEP. Some, she says, are taking it because they have HIV-positive partners, others because they are “tired of hearing the message.”

“We have our PrEP navigator,” she says. “That’s part of the process that we go through: to make sure that you’re not just handed the pill. There’s definitely a lot of controversy around PrEP.” Other STDs among them, she adds.

“I’ve been working in the HIV field for 16 years now. There’s more complacency than there ever has been,” she says. “In fact, we’re seeing young adults being infected more than any other group. For us, more media, World AIDS Day, through continuing to keep working, talking to the youth in schools” is the plan to counteract the rise. (Metro, she says, has about 10 new diagnoses a month).

“Some traditional prevention still works,” Orange County Health Department’s Tucci says. “We still need to talk to people.There’s some fear and there’s still complacency. There are kids who come in and say, ‘I’m gay and of course I’m going to get it.’ You just need to take the time to explain everything.”

For Orlando’s Donahoo, who is willing to share his experiences with everyone through all media, social or traditional, helplessness isn’t an option. PrEP has actually made him more proactive in his life decisions, he says.

“I’ve heard some people think that taking a pill every day is being complacent, but actually, taking a pill every day is a constant reminder to stay safe, for me at least it is,” he says. “At the same time, if the threat of death is the only thing that we have to keep us feeling safe about ourselves, that shouldn’t be the way. Vice-versa, I’ve seen guys pass up on PrEP because they don’t want to talk about it with all of the weird stigma behind it. They think that people taking PrEP implies certain stuff about them.”

“It’s a new era,” he says.

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