October 2, 2008

Looking Back, Moving Forward: Reflections on USCA

POZ's editor-in-chief Regan Hofmann recounts her experiences at the 12th Annual United States Conference on AIDS.

In a scene from Pirates of the Caribbean: At World’s End, swashbucklers from all over the equatorial region convened in Ship Wreck Cove on a steamy island to determine the fate of their “industry.” Many languages were spoken, many agendas were tossed on the table and there was a good deal of shouting and banging of hooks and iron mugs. But beneath all the tension, there remained a desire for the greater good of them all—in their case, that meant finding a way to continue their unfettered plundering of the high seas.

Breezing into the lobby of the Grand Hotel in Ft. Lauderdale on a warm evening two weeks ago, I walked smack into the gathering of AIDS activists, heads of AIDS organizations, doctors, nurses, policymakers, government officials, people living with AIDS, pharmaceutical folks and the media who’d come to Florida for the 12th annual United States Conference on AIDS (USCA, held September 18 to 21). It reminded me of that scene in Pirates. We had all journeyed from far away to discuss the state of AIDS in America, our agendas and our needs. There was a sense that no one was going to go home until we had properly hashed out some of the most important AIDS issues laid on the table. Only then would we go back to our business of helping people infected and affected by HIV/AIDS.

The hot issues included: trying to figure out how best to address the disproportionate HIV infection rates among blacks and Latinos, among gay men of all races and colors, and among women and teens; how to do a better job fighting stigma (hint: empower people living with HIV to come forth and speak up); and how to identify prevention and testing messages that will change people’s behavior to keep them HIV negative or, if it’s too late for that, help them become aware of their HIV status and get into care and treatment ASAP. And, of course, how to deal with the fact that funding for HIV/AIDS in America is no longer commiserate with the need which means that many of the people working tirelessly in the community have to work harder and for less money.

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A steel band played at the opening-night cocktail party as the wind blew through the harbor and across the patio where we were saying our hellos. As the air rustled the palms, I realized that no matter how tired I am when I arrive at a conference, I am enlivened by being around so many people—some familiar faces, some new—who’ve come to learn more about, debate and maybe even solve, the issues surrounding AIDS. Over there was Paul Kawata, executive director of the National Minority AIDS Council (NMAC), which sponsored the USCA (see my  interview with Paul Kawata below).




Over there was Puerto Rican activist Anselmo Fonseca and his partner, José F. Colón—subjects of our controversial September cover story about the state of AIDS in Puerto Rico. And by the pool sat Frank Oldham Jr., president and CEO of the National Association of People with AIDS. And so many wonderful others. It always amazes me that so many important people attend this conference; that is partly due to NMAC’s reputation and hard work; and it is partly is due to the fact that certain politicians, government officials and policy makers understand that we have a bigger problem with AIDS in America than ever before and are, thankfully, working hard to solve it.

There was a lot of talk about whether or not Senator Barack Obama and Senator John McCain would acknowledge, or perhaps even attend (in person, or by proxy), the conference. Senator Obama was allegedly campaigning in Florida during the conference so there was considerable hope that he would show, and considerable disappointment when he did not. In fairness to the senator, I am not sure when he was made aware of the conference and therefore whether it was feasible for his schedule to accommodate a visit to USCA, but the absence of both presidential candidates does speak to the candidates’ relative reticence to face the issue of AIDS. When men campaigning for the presidency do not seize the opportunity to speak to the leaders of the AIDS community, it shows where we are relative to both destigmatizing AIDS and making AIDS a critical issue on the political forefront. After all, 750,000 people in the United States know that they have HIV/AIDS. And that’s a pretty big swing vote…

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While I love the sheer volume of the International AIDS Conference, which was held this summer in Mexico, there is something really special about USCA. Especially after IAC, USCA feels deliciously intimate. You know you will see people more than once in the hallways. And you can attend most of the sessions as they don’t overlap 10 deep. As with most conferences, some of the most exciting discussions transpire in the halls, over drinks and at the coffee stands. Even before the opening plenary, people were chatting over cocktails about things like how they were dealing with federal funds for AIDS services getting slashed, the challenges of developing prevention campaigns that will speak directly to the incredibly diverse group of people who need to hear them (Teens! MSMs! The elderly!) and, of course, who will be our next president and how that will affect the future of AIDS in America.

*

Thursday morning, before the plenary breakfast, I opened the curtains of my first-floor room to enjoy a stunning view of sun-up over a channel of sapphire-blue seawater until…a behemoth of a cruising yacht anchored at the dock directly opposite my windows, blocking my view and forcing me to close my curtains so the men washing the giant boat (by hand!) couldn’t see me getting dressed.

The way the ship materialized and seconds later obliterated my rosy view reminded me of the appearance of HIV in my life: Just like that, the sun was hidden and everything went dark, even though the day was bright.

Under the feeling of optimism that pervades these conferences, I have to admit, I undoubtedly feel the weighty presence of the fact that we are still losing the war against AIDS. The infection rate is not declining despite the fact that the disease is preventable. Too many people are being diagnosed with HIV and AIDS at the same time (which speaks to problems with our programs designed to get people tested and to people’s unwillingness to get tested, due to fear of a positive result and the ensuing stigma). In addition, the media and federal government are not responding with adequate levels of press coverage and funding, respectively.

But this is why we gather: to try to resolve these issues. USCA is the largest annual AIDS-related meeting in the United States. It convenes HIV/AIDS professionals working on the frontlines of the epidemic throughout the nation, its territories and Native American reservations to learn new skills and build partnerships. This year’s conference was especially critical as it marked the first time that the community had gathered en masse since the Centers for Disease Control and Prevention had publicly released the revised numbers of HIV incidence in America (40 percent higher than previously estimated, with 56,300—not 40,000—new infections occurring in 2006 alone). Now we could discuss what factors might be responsible for our current infection rates.

The morning’s first session explored, among other things, the myth that AIDS is under control in the United States. As Paul Kawata said, “That idea couldn’t be farther from the truth—or more deadly to the health of this nation.” Indeed, this misperception likely played a central role in the increased infection rate among communities of color. Of the 56,300 new infections in 2006, African Americans accounted for 45 percent and Latinos for 17 percent. We are also seeing alarming upticks in infection rates of Native Americans and Asian and Pacific Islanders.

The opening plenary was called: Soy…La Voz Del Cambio (I Am…A Voice for Change)—Heroes in the Response to the Latino AIDS Crisis. The session, organized by the Kaiser Family Foundation and Univision with support from the Latino Commission on AIDS, was moderated by award-winning TV host and journalist Teresa Rodriguez, co-host of Univision’s Aqui y Ahora (see my interview with Teresa below).



The program also offered a sneak peek of a new public service campaign (“Soy”) scheduled to launch October 15, which is, National Latino AIDS Awareness Day (stay tuned for it on poz.com). The spots feature HIV-positive Latino men, women and teenagers. It was incredibly powerful to see the courageous testimonials from so many new faces of color.

As I listened to the program, I slowly scanned the room taking in the faces of the thousands of attendees. Giant panels from the AIDS Quilt were hung all around the edges of the room. The combination of the memorial panels and sea of people infected and affected by HIV/AIDS was a perfect illustration of the conference theme: “Looking Back, Moving Forward.”

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Thinking about the new Latino faces I saw in the “Soy” campaign made me realize anew the power of the community to affect change and alter behavior simply by showing our faces and telling our stories. The idea of overcoming your fear of stigma and discrimination and publicly disclosing your status was a big part of the panel discussion I participated in the next day. It was supported by Bristol-Myers Squibb (BMS) and hosted by the indomitable Marjorie Hill, PhD, executive director of Gay Men’s Health Crisis in New York City.

The panel, called Taking on HIV in the U.S.: Leveraging the Power of Women, brought together four women living with HIV. We talked about our experiences living with the virus and what we were doing to fight it ourselves and to engage other women (and those who care for us) in the fight against AIDS. (hear from Linda H. Scruggs, one of my fellow panelists, below).



For three hours, we hashed out the nitty-gritty of why, perhaps, women were disproportionately at risk and the unique issues they face (such as a desire to care for their families and friends, even at the expense of their own health). Hill managed to turn a room full of several hundred people into an intimate gathering; many women, and men, came to the mic and asked questions. To me, the longer, more interactive format is a wonderful way to advance discussion on these critical topics. Too often, conferences are about people presenting information and not taking any in.

I also found it impressive that an industry (the pharmaceutical industry) designed to focus on the treatment needs of HIV-positive people also supports conferences like these, sponsoring sessions looking at topics such as reduction of stigma and improving doctor/patient relationships. BMS was not alone. Gilead Sciences supported one titled Educating HIV Positive Patients; GlaxoSmithKline supported a session called Living Longer With HIV; Merck supported one on Special Issues in HIV Care; and Pfizer supported one titled New Targets in HAART: What Educators Need to Know.

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It would take too long to itemize all the great sessions and workshops at the conference. Friday’s plenary luncheon celebrated the 10th anniversary of the Minority AIDS Initiative and included a panel with Congresswoman Maxine Waters (D–Calif.), Congresswoman Donna Christian-Christensen (D–Virgin Islands), Miguelina Leon, Dr. Benny Primm and Ernest Hopkins. NMAC premiered its new public service announcement featuring Nancy Wilson and Speaking Hands, a gospel-music youth group that rocked the rafters.

The closing plenary on Sunday focused on HIV/AIDS issues affecting men who have sex with men (MSM). The panel at the final plenary included: Rashad Burgess, acting chief for Capacity Building at the Centers for Disease Control and Prevention; Tommy Chesbro, board member of the National Minority AIDS Council, co-chair of the Racial and Ethnic Minority Advisory Committee at the National Institutes of Health‘s Office of AIDS Research and past member of the Education Advisory Committee for the Association of American Indian Physicians; Wilson Cruz, actor and HIV/AIDS activist; Jack Mackenroth, renowned fashion designer, HIV/AIDS activist and POZ cover boy; Esera Tuaolo, former NFL football player of the Atlanta Falcons; and Jose Antiono Vargas, Pulitzer Prize–winning reporter of The Washington Post. Martha Wash, best known for the Weather Girls’ hit, “It’s Raining Men,” performed, and POZ’s founder, Sean Strub, gave an incredible speech on the rights of people living with HIV (to read it, click here).

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Listening to so many brilliant, determined, inspired and inspiring people talk about what has been done and what we have yet to do reminded me indeed of that confab of pirates. There was a similar ferocity to the discussions, a similar determination to fight for our cause—and if I dare say so, a touch of rebellion. Looking back, and moving forward, we must remember the spirit of those who came before us, who fought so successfully for treatment and access to care, equal rights for people living with HIV, adequate levels of funding and the respect of HIV-positive people’s dignity and freedom. Today, we work to become those who will be remembered tomorrow for ensuring that the legacy lives on.

Search: United States Conference on AIDS, USCA, African Americans, Latinos, National Minority AIDS Council, Paul Kawata, Anselmo Fonseca, Frank Oldham Jr., Barack Obama, John McCain, CDC, GMHC, Marjorie Hill, Teresa Rodriguez

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