Were you to imagine the most important AIDS conference in the world, you probably would picture a meeting of world-renowned scientists and researchers rubbing elbows with the top brass of pharmaceutical companies and coexisting with the most prominent leaders of the AIDS community.
You’d probably assume the conference takes place in a major U.S. or European city or at some high-profile resort where your meeting also can serve as a luxury vacation. You perhaps also picture a conference during which groundbreaking research is presented for the first time, amid a flurry of press releases and media alerts.
You’d also expect the conference to feature businesses seeking AIDS-related dollars promoting themselves with seven-figure mega booths hoping to attract new sources of profit as they spread the word about their antiretroviral brands and other AIDS-related products and drugs.
But instead, what if I were to tell you the most important AIDS conference takes place in a small town on the panhandle of Florida, on an island with fewer than 20,000 residents known as the “Redneck Riviera?” I’m referring to an area that was one of the hardest hit by the BP oil spill shortly after Barack Obama took office. The area, also hit many times over the years by hurricanes, is still recovering from the BP destruction.
The island’s name is Okaloosa Island and it’s located in a region of the country where HIV and AIDS cases are on the rise — yet supported by only a single AIDS organization, OASIS.
The conference, which is hosted by OASIS, called Positive Living, marked its 16th annual gathering. At one point several months ago, Butch McKay, the long-time executive director of OASIS, considered cancelling the meeting altogether. Fortunately, Butch was able to pull together sufficient resources to keep the conference going once again.
So why is Positive Living most important AIDS-related gathering?
It is the only conference in the United States that caters almost exclusively to people who are HIV positive or living with AIDS. It is a conference that shuns AIDS-related stigma and whose attendees embrace their HIV status, sharing common experiences in hopes their openness can help others who live with HIV or AIDS and reverse the spread of HIV.
Positive Living focuses on people who must live with the AIDS virus, both those just diagnosed and those with years under their belts. Leaders in the field of AIDS from all over the country and the world, including Africa, spoke on critical AIDS- and HIV-related issues. Attendees travel to the conference from all around the country, many carpooling from southeastern states.
To me the most important focus of the conference, confirmed by many attendees I met during the weekend, is the social component: the opportunity for people living with HIV and AIDS to feel free to talk openly about what it means to be living with the disease. At one point, I saw a group of attendees spread out around the conference to try to find AIDS medication for a fellow attendee who had inadvertently misplaced this life-saving treatment. Unfortunately, the medication was an older antiretroviral that few patients take today.
The solution? “Hey, I will give you some of my meds (the same medication),” a selfless attendee said in a hushed voice, “and I can spread mine out over six days instead of taking them three days in a row.”
This action would, of course, be frowned upon by the pharmaceutical industry and AIDS doctors and even by some activists, yet it could be critical to the patient who needs the medication immediately. Risky? Perhaps, but what a tremendous show of support for those in need. Regrettably, over the years, this is something we seem to have lost as a community.
The idea that the group and its members are more important than the individual resonates with me. I believe most people, HIV positive or not, would find this one act of kindness extraordinarily compelling.
The pharmaceutical industry wields enormous power in the AIDS community, more today because of the economic downturn than it did in past years. However, I guarantee you sales of AIDS drugs are increasing, not dropping. In fact, profits never have been higher, propelled by the growing number of infections. Sadly, HIV infections haven’t gone down in the almost 33-year history of this pandemic.
It is my sincere hope that potential funders, especially the pharmaceutical companies, will fully support next year’s Positive Living conference. It may take place on a small island on the panhandle of Florida, yet it very well may be the most important AIDS conference in the world.