Advocates for people with HIV and AIDS came to Raleigh Tuesday to talk to legislators and get tips for increasing support for people with HIV back home.
By Rose Hoban
Hundreds of people with HIV and their supporters descended on the capitol complex Tuesday for an all-day conference to learn about the state of HIV policy in North Carolina and to ask their legislators for support.
Many said that the release of Gov. Pat McCrory’s budget last month had given them a sense of urgency to visit Raleigh. The budget proposed to cut $8 million in funding for the AIDS Drug Assistance Program (ADAP) that provides access to anti-retroviral drugs for low-income patients with HIV.
“Being on ADAP allowed me to finish graduate school, start jobs that got me going professionally – and now I’m able to pay taxes, buy food, pay my rent,” said Joshua Wynne, a Gates County native who now lives in Raleigh. He was on ADAP through graduate school at N.C. State University and again when he was starting out as an uninsured contract consultant.
“ADAP is definitely an economic uplifter, not to mention the fact that it saves the state the costs of medical care that would have been a lot more if I’d been hospitalized,” he said.
Increasing the visibility of people with HIV and reducing stigma were also among the conference’s objectives, said Lisa Hazirjian, who heads the N.C. AIDS Action Network, which co-sponsored the conference.
Hazirjian said about a quarter of the people newly diagnosed with HIV in North Carolina have been sick for so long that they actually have AIDS at the time of diagnosis. She called that statistic “tragic.”
According to research, the 20 percent of people nationwide who don’t know they have HIV are responsible for more than 54 percent of new transmissions.
“People aren’t getting tested and diagnosed until they’re really sick, living for years and infecting others,” Hazirjian said. “And research from UNC showed us that if we treat people with anti-retrovirals, the rate of transmission drops by 96 percent.”
“At the end of the last fiscal year, there was $8 million of unspent state ADAP money,” explained Alison Rice, who teaches AIDS policy at the Duke University School of Law and helps run the AIDS legal project.
Rice explained that during the fiscal downturn in 2010, North Carolina reduced eligibility for the ADAP program from 300 percent of the federal poverty level (income of $34,470 a year for one person) to 125 percent ($14,362 a year for one person), and the list of available medications was also reduced. Medications can cost upwards of $5,000 per year.
For years, North Carolina was one of only a handful of states with a waiting list for the ADAP program, and the 125 percent eligibility threshold was the lowest in the nation.
But last year, the federal government released money to state ADAP programs to bolster their efforts, which allowed North Carolina to ease the eligibility requirements for ADAP and provide medications to deal with the many side effects caused by anti-retroviral medications.
“People in the Division of Public Health were asking for authority to return to the 2010 status quo. If they had gotten that when they asked for it, they would have used up the $8 million surplus,” Rice said. “But they were not authorized to expand for a long time, and the money sat.
Wynne spent some time on an ADAP waiting list in 2010.
“It was incredibly difficult, really stressful, on top of the fact I was looking for a job with health insurance [and] there was an economic downturn,” Wynne said. “I was lucky; the clinic I go to in Raleigh had some extra medications they were able to provide me with…. But someone in Bertie County may not have had the same luck.”
Learning to advocate for themselves
Hazirjian said many in the HIV-positive community need to learn how to speak up against the lingering stigma around an HIV diagnosis. So their legislative advocacy day also includes a conference to educate advocates.
“It’s a real big issue in North Carolina, especially in rural North Carolina, where about a quarter of new diagnoses originate,” Hazirjian said.
Overcoming stigma in the faith community was one of the topics addressed during a session on faith and advocacy.
“The church that I was attending did not want anyone who was gay or lesbian or transgender at their church,” said Pastor James Sizemore. “They didn’t want to address anything other than their upper-middle-class white lives.”
So Sizemore left and formed his own church, one that welcomes everyone.
“You have to remind people that what God ultimately wants to do is love and heal all people, no matter what and where they are,” he told the audience.
That’s been the experience of Asheville resident Jerry Lynch, 52, who attempted suicide after he was diagnosed with HIV a little more than a year ago. He said he’s found his church to be a huge support in getting back on his feet.
“At that point, I convinced my church to have a health fair,” Lynch said, “and five people were tested.”
The church, Varick Chapel AME Zion, has also developed a support group.
Lynch said he’d never before been to the legislature, but he was excited by the chance to tell lawmakers his story and to take the advocacy message back to Asheville.
“Today I’m out seeing first-hand and can go home and say, ‘This is what I’ve seen; this is what we need to do to get our legislation changed.'” Lynch said. “Because if funding is cut for medicines, then it’s going to set us back.”