October 16, 2013 at 1:39 pm EDT | by Dave Purdy
The most important AIDS conference

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.

  • It would be nice were the Pharmaceutical Players with such a large stake in the struggle ($$$$$) would play a larger role in supporting this conference…. (not self-promotion, but grants and funding flows for helping clients to attend. Thanks Butch

  • Butch McKay does an amazing job (every year) putting this conference together. He is a true hero when it comes to helping improve the lives of people living with HIV in the South. Participants always look forward to this conference where they get to learn, laugh, and meet others living with the same medical condition! It is the most important HIV/AIDS conference! And I agree with Jt Talley!

  • Thanks Dave for such a touching tribute to Positive Living and the people who call it their conference, their space. It is a safe place where family comes together to share and grow, and weep and pay tribute to those who are no longer around to attend. Our Heart Circle, remembering those we have loved and still love in the confines of our hearts will always be a highlight for me. Knowing and appreciating our history, yet chartering a course that works in today's environment is so important to survival. It is now really not so much about surviving as it is about thriving. Positive Living brings hopes and empowerment and those participating are the ones delivering these messages.

  • It is a conference for Americans living with HIV and AIDS, and an important one, for Americans. But, it is not designed for the rest of us, HIV+ persons living in the other 190 or so countries in the world. So the title really should be The most important HIV conference in the USA.

  • This conference hope will educate participants about how to live long, keeping track their medical records and should to know when can ocurr interactions between medications and to prevent damage of immportant organs as liver and kidneys and to prevent cardiovascular deseases, overweight and obesity.

  • I have been very fortunate to have been able to not only attend this conference for the past 8 years but to have been able to give back by becoming a speaker and holding a women’s forum for the past 4. What a remarkable experience it has been. I am able to help others as well as myself. There are Positive folks who look forward to this conference all year. It is their one chance to meet, greet and yes sometimes console their very own peers. Butch is my hero on so many levels. He has provided an outlet for all American Poz folks. He works tirelessly all year to be able to do this for us as well as all of the other duties he has to perform as the fearless leader of OASIS. I hope that your words, Dave find their way into the hearts of the people who can really make a difference.

  • This conference was the single most important thing that I have done in my life, living as a HIV+ man who has struggled to not only understand HIV/AIDS, but to live with it. This conference armed me with the tools to live healthy by educating myself about HIV/AIDS and all of the stigmas that go along with it. I have not only learned to make wiser decisions and choices for myself, but have learned to have courage and to not be ashamed or afraid of who I am and the diagnosis that I have been given. So much so, that I have invited 10 people to come to next year’s conference, people who prior to attending Positive Living I could not have begun to discuss my status, and the challenges that I have endured as a result, with. Each of these 10 individuals are planning on attending, and like myself, I am sure they will take home a great education from this conference that will impact their lives forever.
    So, I want to thank you David Purdy for this very important and greatly appreciated article. I also want to thank you, Butch McKay and the staff at OASIS, for giving me the opportunity to not only attend this powerful conference, but to acquire the knowledge that I would have possibly never known, the courage to make a change in my life, and the wisdom to share it with others.
    Thank you all. Wow, what a team!
    David Beach

  • Fantastic article and right on the money

  • This is indeed a conference that I hold close to my heart because of the closeness we share between each other, the caring spirit that exist's between every participant .it is one of brotherly and sisterly love and respect that I have not experienced at any other conference in the 14 years I have been working in this field. We always make every effort to be at this conference and I will be submitting an abstract to present next year.

  • Great work Butch et al @ OASIS. I am proud to know you and your work.

  • Thank you for the good writeup. It in fact was a amusement
    account it. Look advanced to far added agreeable from you! By
    the way, how can we communicate?

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