August 31, 2007
Johnson (left) and Demetra Tennison share a lighter moment
at Women and AIDS Institute
The AIDS movement needs new leadership—particularly women and young people. That's why at last week's National Association of People with AIDS (NAPWA) Staying Alive conference, in Cleveland from August 23 to 26, left the old guard breathing a sigh of relief, when a handful of young people and women emerged as fresh voices to help move the fight against AIDS forward. No one crystallized that sense better than a woman named Nisha, who received a standing ovation for her stirring speech at the lunch plenary. "I talk to people and I hear there's been history with some organization or a beef with that organization," she said, to chuckles of agreement among the crowd. "Well, the new kids on the block don't have that beef, so use us. We can't tear each other down and expect to build a movement."
Nisha set a productive tone and Staying Alive had meeting, plenaries, and sessions on every AIDS-related topic imaginable. One well-attended event was the "Comprehensive HIV/AIDS Care and Services Legislation" sponsored by NAPWA and the Campaign to End AIDS (C2EA). The forum was the first of what will be many meetings the next year that is seeking to elicit input from people with HIV/AIDS around the 2009 Ryan White CARE Act reauthorization process—and avoid the putting regional interests before those of consumers that occurred in 2005. Ted Kennedy's office, which is overseeing the planning process, values consumer input. "We want to hear what's going on with the people living in the neighborhood," Connie Garner, a Kennedy advisor has told the Update. "They may not have the sophistication of the lobbyists, but at the end of the day they are the ones that can best show what they need."
"I was very, very pleased with the session," said Christine Campbell, Housing Works director of national advocacy. "It's a great beginning to a national dialogue. Decrease some of the angst and fighting that happened around the last one. Hopefully. We'll see."
Oldham addresses the crowd
Credit: M.Saidia McLaughlin
Moderated by NAPWA executive director Frank Oldham Jr. and C2EA member Fortunata Kasege, the participants spoke of struggles with care for themselves and those in their community. Transportation and housing were the top concerns, with multiple people describing the long process of getting services. "In order to get my ADAP I have to travel an hour and a half to two hours every month, and I don't qualify for a bus card," said Fredia Webster, a C2EA member from Miami. Others discussed the problems of earning too much income to qualify for Medicaid. "You almost have to go back to being poor," Kasege said. Some such as Rev. Joyce Keller suggested that people with AIDS receive the same health care as senators.
Women's Institute a hit; Youth Institute "good start"
Nisha, who goes by an assumed name because she is not out to her parents about her HIV-status, is part of Ms. Foundation-run new National Women and AIDS Collective (NWAC). NWAC ran a session that was part of a daylong Women and AIDS Institute. Some 100 female activists attended, leaving impassioned to mobilize women in their community. One issue that galvanized them was lobbying behind changing the Center for Disease Control (CDC)'s risk categories which only identifies a woman's risk for contracting HIV during heterosexual sex based on the exposure/risk status of her male partner. Forty-seven percent of women testing positive in the U.S. are assigned to the "no-identified risk" category. "We cannot be ignored," said NAPWA deputy executive director Vanessa Johnson. "But my long-term goal isn't just changing how women are counted— it's changing how women are treated."
The one big disappointment in Cleveland was the relegation of the YOUTH POWER! Institute to an alternate hotel due to space constraints. The elimination of NAPWA's Ryan White conference brought the youth with the grown-ups to one city and would have presented a unique opportunity for inter generational interaction. But the new guard of activists missed out on Nisha's speech as well as the mingling that went on during the day. Nonetheless, Housing Works' Charles Long thinks the youth conferences was a start. "I think the effort was there to be inclusive of youth, but the inter generational dialogue was just not there yet," he said. Fredia Webster, 21, of Miami, who attended the Youth Institute agreed. "We should have had more interaction with the other people," Webster said. "I would have liked guidance on how to do advocacy on our own."
Oldham said that it would have been ideal if the Youth Institute was at the same hotel, and said, in the future there will be more effort to be inclusive. "As someone over 50 I can say there is a different experience for those 14 to 30 than those who lived during the beginning of the epidemic," he said. "It's important that we share our experiences with one another. He continued, "People definitely question what's happening to our movement," said. "The issue is that we are in a new era of HIV/AIDS. That impacts our advocacy as well as our need for services."
One way to let your voice be heard is to tell your person struggle of living with HIV/AIDS. Everyone, young and old, is invited by NAPWA and POZ to share their stories about living with HIV/AIDS on . ourdignity.com.