World AIDS Day reminds of what was and what can never be again

By : Billy Manes
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Thom Bland, 54, sits across the table from me at a downtown eatery. His signature shovel beard and glasses speak very much to the currency of fashion – we’re all dialing our time machines backward these days – but his cadence is certainly rooted in the trauma that brought him here. There are tears.

“I knew Patient Zero,” he only half-jokes. Bland is HIV-positive and, though his numbers may read “undetectable,” he’s fallen into the gray area – even the blackest of holes – that has picked off his friends and much of his history indiscriminately. He once woke up from anesthesia while having his lungs scrubbed for Kaposi Sarcoma. He has seen the worst. Bland was diagnosed in 1991.

“I started going to New York in ’82, and we’d all heard about GRID [Gay Related Immune Deficiency, the initial terminology for AIDS], and people were paying attention,” he recalls.“In ’83, I moved there to go to school and started meeting people. The first person I remember meeting was the vice president of a very large bank, and as soon as he was diagnosed, his parents completely cut him out. And then we had friends, and we all paid for his grave in Queens. He was buried in a pauper’s grave, even though he was a millionaire. And that’s the first time I saw how people could disassociate themselves from family for something they didn’t understand.Nobody knew, so everybody treated everybody as a leper.”

December 1 is World AIDS Day, memorialized and patronized by those who saw the worst in our world, medically and socially. In Orlando, Tampa Bay, Sarasota and virtually everywhere else in Watermark’s reading rainbow, there will be ceremonies and quilts, memories and anger, apathy and staring off into the pale distance, mouths agape as if to ask, “Why?” Why did so many people die in a pointed news vacuum?

“Oh my God, it just started and it just didn’t stop,” Bland says. “And in ’84, I had to come back to Orlando [from New York], because my psyche was about to break. I was 24 or 25 and I’d already witnessed at least 100 people die. And I came back here, and I had just beat the wave, because then my friends in Orlando started getting it.”

There is no denying that HIV/AIDS remains a devastating force in the LGBTQ community – and elsewhere, as it always has – but the numerical data doesn’t do the scourge its historical justice. A 2015 report from the Florida Department of Health revealed that in Tampa, 14,305 had contracted HIV/AIDS, with only 12,540 aware of it. In Orlando, 13,135 were carrying HIV, with only 11,507 actually aware of their status. Moreover, 30-40 percent of those infected in both areas were not seeking treatment. AIDS isn’t gone; it’s only changed its face. Charted increases include significant leaps in HIV cases in both key Florida areas, looping black heterosexual males into the standard mix of men-seeking-men into the pie charts. The most recent studies show Florida leading the nation in increased HIV diagnoses.

That’s why World AIDS Day is important, Bland says. People need to see what’s happening.

“I think it’s absolutely something we should memorialize, because without those people, we would probably still be fighting in the street,” he says. “It’s the war we ended up in. We didn’t choose it.”

That war is 35 years old in 2016. And this week a new vaccine trial – the first in 10 years – is scheduled to take place in South Africa.

THE WAY WE WERE

“The first time was as a medical student,” says longtime Orlando Immunology Clinic medical director Edwin DeJesus of his first recognition of HIV/AIDS. “It was 1986 when I started doing clinical work, and there were already people infected with HIV and opportunistic infections. We didn’t have a clear understanding of the disease, but it was already known as AIDS by then. There was only one drug available, which was AZT, and that’s it.”

But AZT brought with it heavy side effects, so much so that 50 percent of the infected population couldn’t handle the drug. As documented in How to Survive a Plague (2012) and fictionalized in Dallas Buyers Club (2013), that didn’t stop patients from looking for their own options. It was, in fact, a do or die moment.

maxresdefault“The stigma around the disease was such that unfortunately even healthcare providers were consciously or unconsciously discriminating. And that’s healthcare workers,” DeJesus says.

“Before the advent of what we call highly-active anti-retroviral therapy, or HAART, which didn’t become available until 1996, there were patients who were slowly progressing, and not having any drugs to give them to make them better, seeing them as frequently as we saw them,” he adds, “it was very hard seeing them deteriorate to the point of death. It was hard having our hands tied and not being able to do anything.”

In the wake of relative inefficacy, protest groups like ACT UP! formed in order to pressure the Food and Drug Administration and the National Institutes of Health to rush trial treatments, especially given that the life expectancy of HIV/AIDS patients was remarkably short.

“I was very understanding about the situation. I think they wanted to do whatever they needed to, so I understand the period that people went through experimenting with multiple other treatment options,” DeJesus says.

AIDS Service Association of Pinellas (ASAP) operations manager David Franks came into the AIDS maelstrom more by chance than choice.

c4f7471b7d05a1cd5af1c6bfe1c1e362“What kind of propelled me is that I had an identical twin brother who was HIV positive. We were in a bone marrow study with the National Institutes of Health,” he says. “As a case manager, back in those days, what we really worked on was trying to help people live a comfortable and meaningful life before they died. That involved very intensive case management. And in terms of trying to bring income to those people, to give them disability benefits, and getting them medical care – getting them insurance of some sort through Medicaid or some other source. Back in those days, we didn’t have the Affordable Care Act. So it was a challenge.”

That challenge, of course, was exhausting.

“I think people who have been in it for so long, especially during those very early days, sometimes I wonder if we don’t have a certain degree of Post-Traumatic Stress Disorder, because we were fighting a war.

Worse still, families didn’t care in many cases, Franks says.

“I remember one person I was with when he died, the father of that guy wasn’t around at all during the treatment until the day that his son was dying,” he says. “And then he was there just to take a clip of his son’s hair to take it back to his mother. Imagine remembering that.”

MOVING ON

St. Petersburg’s Metro Wellness chief executive officer Lorraine Langlois is wary about the gains seen in HIV/AIDS treatment, for one main reason, and one reason only: “politics.”

“Over the past eight years the Obama administration brought forward HIV/AIDS treatment and prevention more than any other administration by developing a National HIV Strategy that gave us a game plan to reduce HIV and treatment folks as soon as possible… the ultimate goal is getting to zero increase of HIV. More energy and money and direction were put into domestic HIV under this administration,” she says in an email. “Last week a group of HIV leaders and agency leaders like myself gathered at our usual bi-yearly meetings and were there to discuss what happens now that we have a very different looking administration. We walked away in unison with uncertainty and with a ‘wait and see’ attitude.”

But we’ve been waiting and seeing for decades, most agree. Langlois is among them.

“Over the years treatment has changed in the number of pills people take and lesser side effects but we have not had a breakthrough where the virus is killed. The introduction of PrEP gives us yet another tool to reduce the new number of infections. It also brings up many questions about its use and the need. Does it increase promiscuity? Can anyone take it?”

Among expected new infections are those attached to an entire generation that did not see the sunken faces, the lesions, the weakness, the scabs, the broken families, the sudden deaths, the spit, the vomit and everything else that this disease has brought along with it.

Alexandra Melnick, a recent college graduate who has worked with HIV/AIDS sufferers of all ages sees some hope for the evolving nature of the disease. Beyond the antibodies that are currently showing promise is erasing HIV/AIDS in test tubes and will begin their human testing soon, she knows that it is upon her generation – the Millennials – to carry the torch of awareness.

“I think HIV and AIDS are still very much stigmatized in my generation,” she says. “I don’t think it’s seen as a moral failing as much as it was in the ‘80s, when it was, ‘Oh, because you’re gay.’ When I volunteered with AIDS patients of all ages, they were aware of that stigma, and they wanted to go to a place where they were accepted.”

“I think World AIDS Day is actually a memorializing thing, but I’ve also seen a lot of great activism to help teach people at World AIDS Day events,” she adds. “I think there’s a healthy combination of both.”

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