On June 5, 1981, the Centers for Disease Control and Prevention (CDC) recorded the first AIDS case in the United States. Today it’s estimated that more than 1.1 million Americans carry the HIV infection. It’s also estimated that one out of five people are living with HIV and don’t even know it. In this region, approximately 4,000 to 6,000 people live with the disease.
According to the CDC, men who have sex with men account for only 2 percent of the U.S. population but are the demographic most severely affected by HIV and the only risk group in which new infections have grown steadily since the early 1990s.
To raise awareness of the disease’s 30-year anniversary, the U.S. Department of Health and Human Services (HHS) announced this year that June 27 will be National HIV/AIDS Testing Day. Unfortunately, some local AIDS organizations will miss out on the opportunity to raise awareness, as the Ohio Department of Health (ODH) earlier this year cut funding to Cincinnati’s oldest HIV/AIDS nonprofit organization, Stop AIDS. The agency provided case management, education and testing in the region for more than 28 years.
Ironically, the HHS (HHS.gov) still identifies Stop AIDS as a location for multiple services in the Cincinnati area. Perhaps the ODH forgot to inform folks at a national level regarding the change. Not surprising, says Stop AIDS executive committee member Kathy Nardiello who recounts the unorthodox manner in which the funding cuts occurred. She says the ODH notified Stop AIDS Feb. 28 that the agency no longer qualified for a portion of its funding and that the transition of case management services needed to be accomplished prior to March 31.
While the Ohio agency was deliberative about cutting funds to Stop AIDS, Nardiello says the ODH was uncertain who would be new recipient of the Ryan White Program grant (funding previously used to finance their case management). While the ODH had great certainty about cutting funds to Stop AIDS, they were unsure about the new Ryan White grant recipient. After putting the services up for bid, the ODH in mid-March selected Cincinnati HIV housing organization Caracole, leaving two weeks to transition 17 case managers and more than 1,000 clients, Nardiello says.
“The ODH took a different approach this year at looking at the agencies that it funded and found that we didn’t meet their new criteria for funders,” she says. “They notified us quite abruptly and didn’t follow the appropriate procedures for allowing us time to remedy whatever things that made us ineligible — they never even gave us an explanation, basically.”
Although the agency no longer provided case management, Nardiello says it planned to continue to provide a full array of education and testing services.
The city of Cincinnati thwarted those plans April 7 when it notified Stop AIDS that the remainder of its funding would be cut within 30 days, essentially closing the agency’s doors the beginning of May.
The office re-opened in early June, offering limited testing and education with a staff of two. Nardiello says she and other board members are currently in search of alternate funding to continue operations. She’s cautiously optimistic the community will rally to help the struggling organization that provided so much support for so many years.
“It’s almost like starting from scratch,” she says. “We’ll build the program, get the funding and deliver the program — that’s how we’re going to do it. Hopefully we’ll get back to 100 percent of the services we provided.”
Attorney Scott Knox filed a letter of complaint on behalf of the agency to the Ohio office of the inspector general stating that the ODH failed to follow Grants Administration Policy and Procedures manual (GAPP) rules regarding review, procedure and notification. The ODH based its decision using two-year-old data, according to Knox. In addition, he says the ODH informed Stop AIDS that it simply lost funding in a competitive bid process, but the aforementioned services weren’t put out for bid until after the ODH notified Stop AIDS. Even if the agency showed noncompliance for financial stability, Knox says the ODH made a highly irresponsible move by potentially abandoning clients and leaving them without access to essential services.
“A person with HIV who needs to be case managed, means that they’re vulnerable — they’re not good at dealing with the system, so this person is relying on their case manager for help,” Knox says. “If they can’t get their meds at a pharmacy and there’s no case manager to call, what do they do? If that person misses those meds, they could become resistant. You don’t play with that, and ODH was playing with that.”
Caracole executive director Linda Seiter says that after receiving funding notification from the ODH, her agency in less than two weeks went from serving 250 to 800 clients. She credits incredible dedication by both the Stop AIDS and Caracole staff, who worked tirelessly to make the change as seamless as possible.
While ODH funding covers the expenses of adding additional case managers (Caracole hired eight from Stop AIDS), Seiter says growing from 26 to 40-something employees nearly overnight posed administrative costs not covered by the grant. She says the agency is currently seeking funding to cover the additional expenses. Even with the added challenges, she says she’s grateful to keep services local, making the transition far easier on clients, especially those in rural areas.
“The main thing is that people don’t slip through the cracks,” she says. “There are people that need services who may not get their medical care through traditional sources, or just may not know that Stop AIDS is not available to them anymore. So our concern is how do we get the word out in the community that we’re here and we’re the resource for case management for people living with HIV in the eight-county region.”
Community Investment Coordinator David White, who joined Stop AIDS in 2009, says the agency provided many essential services that haven’t been restored, most importantly community education. With only two staff members, the agency lacks resources to visit high schools, colleges, prisons, recovery groups and support groups as it did in the past. White says education must continue as people in all walks of life are touched by the disease, with the largest number of new cases being reported in black males and both black and white women.
“Before it was the gay white man’s disease — that’s totally changed now,” he says. “The face of the disease has definitely changed here, as it’s changed all over the country.”
Even though the future of Stop AIDS remains somewhat uncertain, White says the organization will go forward with its annual AIDS Walk in September. The walk historically raises about $100,000 and includes more than 1,200 participants. White hopes residents will walk in support of the agency to help it restore funding.
“I think people will come together and make this happen,” he says. “Stop AIDS has the name and the expertise, they have supplies just sitting there — they just need to get some help from the community.”
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