Funding cuts and increasing demand for HIV/AIDS treatment and prevention mean an uncertain future for the South Jersey AIDS Alliance, one of the largest and oldest organizations of its kind in the state.
“We don’t know what our future is five years down the line,” said CEO Carol Harney, who’s battled the epidemic in and around Atlantic City for 19 years.
Contributions and grants for the nonprofit have fallen 17 percent in the last five years, to $1.9 million, according to its most recent IRS form 990 tax return.
The alliance, formed in 1985 before the virus was given its current name, has set an ambitious fundraising goal of $50,000 for Sunday’s New Jersey AIDS Walk on the Boardwalk. In 2011, the event brought in just $15,000, but Harney said registration has improved this year — up to 170 currently from 88 last year.
While the nonprofit was formed in response to a wave of infections and deaths from the disease, its focus has evolved with the epidemic. Over the last 29 years, it has added a wide array of treatment and prevention programs, which can be resource intensive.
Last year, more than 500 HIV positive individuals received services ranging from counseling to housing assistance to transportation. The organization even coordinated the distribution of 5,808 bags of food.
“When I first started working here, people were rapidly passing away and that was our focus: to make that passing comfortable,” Harney said. “Now, we prepare people to live, and we spend all our time planning for the future. That’s a lovely thing to be doing.”
An additional 1,277 individuals were enrolled last year in programs designed to prevent the spread of AIDS, and more than 72,000 condoms were distributed.
Harney said more than 2,000 needles were also exchanged to prevent the spread of HIV through reused needles. According to state Department of Health data, injection drug use is responsible for 46 percent of HIV cases in Atlantic City and, on average, 37 percent of cases across The Press of Atlantic City coverage area.
But funding has decreased while demand, from both HIV positive clients and those at risk of contracting the disease, has grown.
“We don’t know long-term what our funding is like or if the funding we currently have may go away,” Harney said.
While she’s optimistic the Affordable Care Act will ensure more people will receive the health care they need, it could mean less funding for service organizations such as the alliance.
“The climate in the federal government is not to provide as much social service assistance moving forward,” she said. “We have concerns about that.”
The problem, Harney said, is that while HIV positive individuals may have their medical care covered, that still leaves necessary support services such as transportation that need to be filled in order to make their treatment successful.
“There aren’t other services similar to ours, particularly for HIV-positive people,” she said.
John Schultz, one of the founding members of the alliance, said it started as a grassroots effort based on donated equipment, funds and office space. It did things like pay travel expenses for HIV positive clients to see their relatives.
The goal was to educate and help people, he said, but getting the message out about safe sex and injection drug use was difficult. The stigma about the disease in the 1980s and early ’90s was so strong that some funeral homes and even hospitals treated HIV patients differently — or refused service altogether.
“The goal was to try to help and educate people,” he said. “People are dying from this disease and no one cares. A lot of the religious groups came out against us, saying it was God against homosexuality.
“I get so upset,” he added. “So many young, talented people with good jobs and a good future died.”
From the very beginning, Schultz said, it was difficult securing funding for the new organization. That started to change once it became apparent that HIV was affecting a broad swath of the population, but it was never easy.
“It’s not a gay disease, so to speak — it’s an epidemic,” he said.
But glimmers of the old stigma still exist.
“Funding, you know, it’s like drug addiction or anything else,” he said. “It’s always hard to get funding.”
The AIDS Walk began in Atlantic City 15 years ago, but has expanded to five different service organizations across the state that have banded together to hold walks across the state.
That unity not only helps disperse the cost of the fundraising, Harney said, but hopefully spreads the word about how much their services are needed.
“That means that there’s five different locations all at the same time on the same day with people throughout the whole state walking,” she said. “Wherever you live in New Jersey, you can join in.”
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