The Endangered Wonder of the Positive Living Conference, and Why It Matters for Our Patients

Every spring, on the white, sandy beaches of the Florida Panhandle, an unlikely gathering takes place. On that narrow strip of land, between the Gulf of Mexico and Choctawhatchee Bay, 450 HIV-positive men and women from around the country, but mostly from the Southeast, come together amidst occasional spring breakers for a weekend of socializing, education, some silliness, a few tears, and just plain fun.

This year, the Positive Living conference turned 14, an extraordinary success by any measure, but even more poignant because it is the only remaining large-scale conference for persons living with HIV. It is a remarkable blend of individuals: Those who are well-known for their work in the field mix easily with positive men and women who may never have seen the ocean, or been able to spend a weekend by themselves at a hotel, or (most certainly) been around so many other positive individuals in one place.

I am always struck by the rich amount of valuable information available for both attendees and presenters. Tom Liberti, Florida's HIV/AIDS Bureau Chief, gives an annual review on the state of affairs, especially poignant this year because of the AIDS Drug Assistance Program crisis. There are medication updates and workshops on mental, physical and spiritual health. There is a daylong AdvocacyU workshop, where attendees learn how to use their voices to advocate on their own behalf.

And there is history. Until his death, Martin Delaney never missed Positive Living. And this year, as Martin Delaney did in years past, Paul Kawata, the executive director of National Minority AIDS Council, gave a keynote that captured a long-term view of HIV — where we have been, our successes, our setbacks, our power, and the many struggles to come.

The heart of the conference lies with the participants, and it is here that the immense benefit for one's clients living with HIV can be clearly seen. Most receive scholarships, which pay for the beachfront hotel rooms and meals. Many are from the rural South and simply don't have adequate access to medical resources — or, for that matter, each other. Positive Living fosters the formation of networks for both medical and social support; but mostly, at least for a few days, it normalizes the stigma of living with HIV. For one brief weekend, everyone is HIV positive (or a very close ally). One can feel a sense of joy and freedom in sharing this physical and emotional space.

The very existence of this conference is a tribute to the vision and hard work of Butch McKay, the executive director of a relatively tiny agency, Okaloosa AIDS Support and Informational Services, Inc. McKay and a handful of staff raise the necessary funds and organize this event with a mastery and focus that have a sense of life or death. And there is no doubt that Positive Living enhances, and even saves, the lives of persons living with HIV.

But the conference itself, like others before it, is at risk. Every year, fundraising is more difficult even as the need grows. Across many states vital programs are being cut, individuals are struggling with fewer resources, and bureaucratic shifts resulting from budget cuts make maneuvering the system, and surviving, that much harder. We witness our clients struggling with these issues every day.

It's easy to see why such events have disappeared. They require extraordinary determination to bring them to life, and the costs are daunting. But their demise represents one more great loss attributable to this virus. Without such gatherings, persons living with HIV have one less resource by which they can remain educated, connected, empowered and even sustained.

Too often we allow ourselves to focus on the objective data of HIV: CD4 counts, viral loads and years since diagnosis. Events such as Positive Living heal at a deeper, more subjective level: the spirit. They renew our determination as providers and they reenergize our clients' ability to integrate healing at multiple levels. For all this and more, they are well worth fighting for.