A False-Positive HIV Test Result Turned Me Into a PrEP Evangelist
February 10, 2016
For some, a false-positive HIV test is miraculous news. For me, a false-positive test while on PrEP and discussions with two longtime HIV activists transformed me into Miami's biggest PrEP promoter.
It had been an ordinary, beautiful South Beach day -- hot, cloudless and quiet. On the west side of South Beach, where I live, the streets were clotted with gaunt women, skateboarders and dogs. Descending the stairs of the AIDS Healthcare Foundation testing site into the bright summer sun after receiving the news that my test turned up positive, I walked slowly, stunned.
How did this happen?
I'd been taking PrEP -- short for pre-exposure prophylaxis -- the two-drug combination approved for HIV prevention in 2012. I knew that Truvada (tenofovir/FTC), the only approved PrEP, was exceptionally effective. In fact, in clinical trials no one had ever contracted HIV when taking PrEP if they adhered to the daily regimen.
While the test would turn out to be a false-positive, I spent six days believing I'd been infected with HIV. Thus began my journey from PrEP patient to PrEP advocate.
Trying to understand the rapid test result showing I was HIV-positive, I instead discovered just how little was being done to extend PrEP as a prevention option. I also found out just how much the community needed to act and not wait for others to act on our behalf.
I contacted Sean Strub, a friend and the founder of Poz magazine. Reaching out around the world, we found only one person who may have seroconverted on PrEP. (His case is under review.)
I also tried to understand Miami's HIV landscape.
Miami has the highest HIV prevalence in the United States. One in 67 adult males in Miami-Dade have HIV. (Among black men, the rate is one in 29; the prevalence among men who have sex with men is estimated at 25%.) On average, four people test positive every day in Miami; three more test positive in the county that includes Fort Lauderdale. The statistics are staggering.
What I found even more astonishing was that, in the epicenter of America's HIV epidemic, there was no education about PrEP.
What's more, I knew from personal experience that PrEP was hard to get. When I asked for PrEP, my Miami clinician told me to "tape a condom to my leg." When I acquired a prescription from another doctor, my pharmacist said he didn't think insurance should cover it because there were other ways for me to protect myself.
I knew my friends didn't always use condoms. In fact, I had only two friends I'd have bet money used condoms every time. (Today, I know only one.) I also had a friend who confessed that he blocked guys on Grindr who expressed interest in condoms.
Seeing the city's silence, and the paralysis of local nonprofits to reach those most at risk, I was aghast. Without education or access, I was certain at least one of my friends would contract HIV within the next two years. I continued to look for counsel.
An article on Huffington Post about PrEP featuring an interview with Sean and another longtime HIV activist, Peter Staley, caught my eye. I reached out to Peter, who told me about his grassroots campaign against crystal meth in 2004: "Buy Crystal, Get HIV Free!". That campaign, which Peter funded with $6,000 of his own money, involved buying ad space on New York City phone booths in Chelsea. Peter suggested I take a similar tack: spend my own money and spark a broader conversation about PrEP.
So I did.
A friend with an advertising background agreed to co-organize. My ex, a Colombian model, agreed to pose. Another ex, a photographer, took on the shooting. We fashioned our first ad, a bilingual palm card with the slogan, "I AM PrEP."
That weekend, we handed them out at 12th Street Beach, the gay heart of South Beach. A few weeks later we shot a model for another campaign, and printed a second set of cards for Fort Lauderdale Pride. A local gay businessman split the cost of our booth.
We were aggressive, if naïve, at first. I don't think we reached too many people on the beach. Fort Lauderdale Pride was slow. But it gave us momentum and materials.
Our next goal was to reach gay men at bars. Given our limited resources -- I was paying for everything out of pocket -- we strategized about what might be most effective. One of us came across Harlem United's spectacular "Swallow This!" campaign then running in New York City. I enjoyed our model shoots and took pride in our own campaign, but we all agreed that Swallow This! was better. I reached out to Harlem United to see if we could run Swallow This! ourselves.
Today, Harlem United's Swallow This! campaign runs at the two largest bars on South Beach. It also appears in Miami's only bathhouse, at local colleges and in health centers from downtown Miami to Key West. We've produced brochures for health centers, clinics, testing sites and community groups. We're creating brochures for trans women and are producing palm cards for Florida's ball community. We've helped encourage PrEP programs at health centers serving the uninsured. And we've put pressure on the county to act.
Naysayers in the gay community blame PrEP for a recent increase in sexually transmitted infections. This is impossible, as shown by simple math: in 2014 there were 1.4 million American chlamydia infections, 350,000 gonorrhea infections and an estimated 17,000 people on PrEP.
PrEP and HIV treatment as prevention are the best tools we have for curbing new infections. Those who are undetectable cannot pass on the virus, and no one taking Truvada as PrEP every day (confirmed through blood tests) has seroconverted in any clinical trial.
The late AIDS activist Michael Callen once wrote, "I am weary of AIDS --of having it, of fighting it, and of hearing and thinking about it." In Callen's lifetime, there were no approved drugs to prevent HIV. Today, we are availed of a pill that can allow us that luxury. It's time we put it to work.
John Byrne is the founder and CEO of the political news website RawStory.com and a Miami PrEP advocate. In Miami, he has worked with local community-based organizations to increase awareness of PrEP and has produced marketing materials, including brochures, posters and palm cards. A graduate of Oberlin College, he recently wrote about his personal experience with PrEP, "When Condoms Aren't Enough," for The Atlantic.
Copyright © 2016 Remedy Health Media, LLC. All rights reserved.
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