Speaking Up

Some 50 people with HIV/AIDS, and AIDS service providers gathered at Gay Men's Health Crisis's Chelsea headquarters Tuesday for a "Ryan White Reauthorization Town Hall" to share the problems with AIDS care that they face in New York City.

Tuesday's forum, cosponsored by GMHC and the New York AIDS Coalition, is part of a nationwide series of meetings held in anticipation of the 2009 Ryan White Reauthorization. The last reauthorization's weigh-in, in 2005, was heavy on lobbyists and light on recipients of AIDS services.

This time Senate Health Committee chair Ted Kennedy requested to hear from "real people" to assess what is and isn't working, not just with Ryan White, but with all of the country's HIV/AIDS treatment and services. The first forum was held at NAPWA's 2007 Staying Alive conference in August, and sessions have been held across the country in Columbia, South Carolina, Philadelphia, Chicago and the Bronx. NYAC is planning more town hall meetings in upstate New York and on Long Island. And if you can't make a town hall summit, you can fill out the online survey "Creating New Ryan White Legislation". All comments received at the town halls and online surveys will be compiled and sent to Kennedy's office.

"Many days I don't feel well enough to take the subway, but I still need to go to my doctor's appointments across town," said one participant. "There should be a mandatory transportation allowance."

Another participant agreed that money was tight, noting that because the HIV/AIDS Services Administration rental assistance allowance isn't capped (like all other rental subsidies in the state), most of his social security income (SSI) goes to rent. "I have to live on $11 a day," he said. "Once you pay rent, you can't buy food."

Manny Rivera, the meeting's moderator and chairperson for GMHC's consumer advisory board, noted that issues seemingly unrelated to AIDS, like holding a bad landlord accountable, are important for Kennedy to hear about. "You might say that's not the point, but that is the point," Rivera said. "Sometimes we need to see how everything relates."

Others were concerned that the issues of women and those over 50 aren't being met. "As a woman going through menopause, I want to know the side effects of my medications," said Juanita Chestnut, a peer educator at GMHC.

Providing Questions

Providers were also asked how their services have been impacted by the cuts to Ryan White funding in the city. Some were forced to drop treatment adherence programs. "Now hospitals are doing it, but we were out in the community where the people are," said Ken Stewart, a provider with Village Care.

A representative from Bailey House also said that a treatment adherence program got short -shrifted, and a nurse was laid off after the cuts to Ryan White dollars in New York.

The consumers at the meeting agreed that treatment adherence was important. One participant also said that he and many of his peers with AIDS are also infected with hepatitis C and that there should be more treatment adherence programs relating to that.

Missing Faces

But despite the vocal consumer and provider input, participants mentioned that the highly engaged crowd wasn't a representative sample of people with HIV/AIDS. Missing in action from the meeting -- and from receiving care in general -- was anyone under 25. Also missing were the many with HIV who aren't eligible for many of the services people with AIDS are entitled to and aren't even allowed to start taking antiretrovirals under Medicaid or AIDS Drug Assistance Program guidelines. As one participant noted, "You can't even get medication unless you have a higher CD4 count."