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This article is the second in AFC’s Cuts to the Cascade series, which focuses on the people, programs and communities representing columns of the HIV treatment cascade. All of the Cuts to the Cascade subjects are under threat of losing vital state support as a result of Governor Rauner’s proposed cuts to the Illinois budget.
As Illinois legislators struggle to balance the state’s finances this spring, Governor Bruce Rauner’s proposed budget has put HIV programs that serve highly vulnerable populations on the chopping block.
In particular, the African American HIV/AIDS Response Act Fund (AAARAF), which supports programs that target HIV prevention, testing, linkage to care and treatment for African Americans, is slated for a 66% percent reduction in FY 2016, down to $500,000.
African Americans account for a full 50% of new HIV infections in the state, making this cut a devastating blow to the most vulnerable community in the HIV epidemic.
The Chicago Black Gay Men’s Caucus is one of 14 agencies that applied for and were awarded money from the AAARAF for FY 2015 but never saw a cent; funds were included in the budget but were mistakenly left out of the budget implementation plan, which authorizes bodies to actually spend the money.
Since 2005, the Caucus has attended to the long-term health outcomes of Black men who have sex with men (MSM), a group that is particularly vulnerable to HIV infections, in part due to limited access to health care resources.
“We cultivate community spaces where men are able to gather, share resources, develop strategies and learn about care that is accessible to them,” said Erik Glenn, the Caucus’ program manager. “There is such a lack of space for black gay, bisexual and same-gender-loving men to congregate, even socially, that our charge is to help fill that gap.”
That space has proven valuable to Caucus members like Aaron Parker Jr., who has found both a brotherhood and a valuable health resource in the Caucus.
“It’s a place to meet, talk and really get all the information about where to get tested and how to keep yourself healthy,” said Parker.
Many of the young men Parker has met through his involvement with the Caucus don’t have supportive families, and he has been able to help mentor young men who are still figuring out how to embrace who they are.
“I didn’t have outlets like this when I was young to go and get advice and learn. I feel like this such an important thing we need in our community,” he said. “It gives me the chance to say, ‘You don’t need to be ashamed or walk around with your head down. Even if you are positive. You can live, you can survive.’”
The Caucus is more than a space; it’s also a resource for Black MSM who need to access to medical services in a health care system from which they have been historically excluded. This is especially important as Illinois’ recently expanded Medicaid program and marketplace insurance plans now offer new health coverage to this population.
As racial and sexual minorities, Glenn said the Caucus’ clients often don’t have families or peers that have successfully navigated health care systems. Even men who have insurance and money to pay for care often don’t discuss sexual behavior and risk with their doctors, who may resist those conversations.
“We encourage our guys to be their own health advocate, but when they have to fight and struggle and claw and climb to find services they are entitled to, that is a sad state of affairs,” Glenn said. “So for us to be expert guides to the system is valuable.”
One of the Caucus’ most important roles is engaging men who are HIV-positive in medical care that is culturally competent and sensitive to their unique needs. Facilitating that connection to care, especially for young Black MSM, is a critical step along the HIV treatment cascade (this is a link to the cascade page, though you can’t see it with track changes formatting), which aims to achieve viral suppression for all people living with HIV.
Just as the Caucus provides targeted services for a population uniquely impacted by the HIV epidemic, the AAARAF provided specific funding to support that work, funding programs that specialize in fighting the HIV epidemic among African-American communities, which bear the brunt of the HIV epidemic.
Glenn said the Caucus applied for, and was awarded, funding for FY 2015 through the AAARAF. With award letter in hand, the Caucus began to plan for the next phase of work — individualized sessions for clients.
“Maybe someone expresses a concern they are at risk for HIV from a recent sexual episode,” he said. “That’s not always something we can handle in a group. How do we give them individual attention?”
Two weeks after that phase began, Glenn said there was an emergency conference call among AAARAF grant recipients explaining that the funds for the awards had not been allocated.
“We were all prepared, we had staff that we hired to be supported by this grant and it just … evaporated,” Glenn said. “The rug was pulled out from us an organization. All our guys are looking to us, in this case for HIV testing and individualized sessions for care.”
Glenn said the Caucus had to quickly re-manage expectations.
“We don’t have the same capacity now,” he said. “It changes the expectation of the guys we serve. We will have to re-earn their trust.”
Partner agencies that the Caucus had built relationships and referral agreements with were also dealt a blow when the AAARAF money did not come through. This has made it difficult for the whole community, which is trying to do more with less, to meet the needs of black MSM vulnerable to or diagnosed with HIV, Glenn said.
Though the HIV community is just one of many vulnerable communities facing tough times ahead with proposed budget cuts, Glenn says HIV impacts the broader society in unique ways.
“The individual will have to deal with [their diagnosis], but in the long run, we will all have to shoulder that burden,” Glenn said. “These are our teachers, our firemen, our police officers that will not be able to realize their full potential. Those are assets the community will never know.”
HIV in particular often causes people to suffer in isolation because of the stigma still associated with this disease.
“[HIV] can impact people in ways that happen in the dark. If people are not able to talk about their HIV status, they suffer alone. And when people withdraw, we lose them,” Glenn said. “People that we love, that we care about, people we grew up with, many times they struggle in silence.”
Slowing the work of organizations like the Caucus, which helps link individuals to accessible care, also stifles the sense of momentum for the larger HIV movement.
“We have a real opportunity,” Glenn said. “We are making progress. People are being empowered. We’re finding new interventions like PrEP (pre-exposure prophylaxis). But that progress won’t continue without support. And that support is not only federal and not only from the city, but that comes from the state.”
Despite the setbacks, the Caucus is committed to doing what it can for its clients with whatever resources are available.
“It’s just emotional. I know these guys. It’s hard to get to know people, and really listen to them, hear them when they honestly say what they need, and you are almost in a position to help them, but not all the way,” Glenn said. “But we will still listen, we will still learn, so that one day when we have the support, we’re able to make good on our promises.”