Throughout 2019, TheBody interviewed top providers at nearly 50 agencies nationwide as part of our Eyes on the End series, probing how close various hard-hit localities were to effectively ending their HIV epidemic—and what barriers stood in the way. Despite the fact that Housing Opportunities for Persons With AIDS (HOPWA), the longstanding federal funding stream for housing for low-income people living with HIV, has been consistently up-funded by Congress—most recently, to $410 million, a level that had been requested by the Democratic-led House of Representatives—providers say that, in their often rapidly gentrifying cities, the need for free or affordable units for their low-income clients almost always exceeds what’s available via their HOPWA allocations.
Those stories are backed up by Lauren Banks Killelea at the National AIDS Housing Coalition in D.C., who notes that HOPWA funding, while important, is small compared to funds that flow down for HIV services through the Ryan White CARE Act (which was funded at $2.34 billion in fiscal year 2018), and that HOPWA currently serves about 60,000 households nationwide, while it’s estimated that half of the 1.1 million Americans living with HIV will at one point face a need for housing.
“Housing continues to be one of the hardest resources to come by in almost every city in America where working a minimum-wage job isn’t enough to afford a decent living space,” says Killelea, who estimates that HOPWA would have to be funded at $1 billion to fully close the HIV housing gap. “Having a place to live is a fundamental of achieving viral suppression.” (Her remark reflects ample research showing that a safe and steady place to live is key to HIV-positive people being able to access, store, and take their meds daily, hence keeping HIV in their bloodstream suppressed to levels undetectable on labs.)
“It’s hard to thrive when you’re constantly worried where you’re going to sleep,” says Killelea.
A Problem Everywhere
And service providers nationwide say that worry is still far too common among their clients. At AIDS Center of Queens County in New York City, executive director Rosemary Lopez said, “We get HOPWA money, but everything here is getting gentrified and rents are sky-high. We housed 70% of our clients 15 years ago—now we’re lucky if we can house 30%. We have to move people to the [cheaper] Bronx, but then they lose services from us.”
At PALSS in Columbia, South Carolina, CEO Carmen Julious said, “We … haven’t been able to provide better access to housing for clients. Many of us [staffers] go home every night to a house, but we drive past clients who are walking to the shelter. Housing is a major issue in our community for all people with limited resources, not just those living with HIV.”
At BEBASHI in Philadelphia, executive director Gary Bell said that, for his clients, housing is “the number-one issue. It’s very hard to climb out of poverty if you don’t have a stable place to live. There’s some limited housing in Philly dedicated to people living with HIV, also some scatter-site housing, but the waiting lists are long, and not just for housing for people with HIV. Section 8 here has an 8-to-10-year waiting list. It’s very hard to get people into those systems. So in the meantime, you do what you can do to find a room for people. With gentrification, there’s less [affordable] housing available. There’s a lot of abandoned housing around the city, and I wish we could come up with more creative ways of making it available.”
And at AIDS Services of Austin, Texas, executive director Paul Scott said, “There’s a terrible housing shortfall in Austin. Getting all our clients housed is a challenge. Five or 10 years ago, the average one-bedroom rent was probably $800, and now it’s $1,350. It’s even a challenge for our employees.”
At RAIN in Charlotte, North Carolina, Chelsea Gulden said, “Transportation and housing come up the most in everyone’s needs assessment. Rent is high; an average one-bedroom is $900 to $1,100 a month. You have to make $20 an hour to make a living wage. We have so many people working 1.5 jobs who still can’t afford an apartment without a roommate. I live check-to-check and I’m a VP of operations. We need subsidies to pick up about half of people’s rent for those who are struggling. There’s been a HOPWA and Section 8 waitlist for 10 years.”
The stories like that go on and on. And if they’re not about how HOPWA funding doesn’t meet the need, they’re about some of the challenges of HOPWA. At FoundCare in Florida’s Palm Beach County, CEO Yolette Bonnet said, “We don’t take HOPWA funding anymore. It became a hardship. We were always waiting for them to reimburse us, but there was a huge lag. The housing we do is through Ryan White—short-term transitional housing for people coming out of prison or substance treatment, limited to six months but usually 90 days. It’s often hotels, and we pay the bill.” (Some Ryan White funding can be used for housing needs.)
All of this is not to say that HIV service providers haven’t found often ingenious ways to get or keep clients housed. One major trend is the growing number of service agencies that, rather than merely using HOPWA or other funds for rental assistance for clients in various apartments around a city, either build, buy, or rent their own congregate or scattered units and then rent directly to clients.
The most luxurious example of this may be Desert AIDS Project in Palm Springs, California, a generally affluent gay and HIV retirement mecca in the California desert east of Los Angeles. DAP has its own sleek, sprawling 11-acre campus, bought largely with money from the widow of McDonald’s founder Ray Kroc, which holds not only medical primary care but 80 units of housing—with 60 more on the way—as well as perks like yoga, massage, and reiki healing. And whereas many HIV agencies get by on public funds, DAP benefits from generous private donations—$2 million from its annual gala alone.
Says DAP CEO David Brinkman: “When I give people tours of our campus, which includes housing, medical clinics, dental and acupuncture clinics, a gym, a farmer’s market, and a food depot, people will ask, ‘How have you created this utopia?’ I say it has to do with the courage of Steve and the generosity of the Krocs, who were otherwise very conservative.”
Of course, not all agency-owned housing is this plush. More typical examples might be the four houses for homeless gay and bisexual men of color, complete with supportive services, managed by Brothers Health Collective in Chicago. “We make sure they’re provided with 90-day transitional housing, then we work with partner organizations to help get clients into permanent housing,” says the agency’s Ariq Cabbler. Or, in Las Vegas, the agency AFAN’s 20-unit permanent housing project for medically fragile clients who can’t work, “that’s always packed,” says AFAN’s Antioco Carrillo.
Or, in Cincinnati, the agency Caracole’s site-based housing, started in 2018. “The majority of clients who’ve come to live with us are actively using substances, particularly heroin, but there’s no requirement to seek treatment,” says Caracole’s Brent Hartke, reflecting the “housing first” ethos, which holds that people need to be stably housed before they effectively address their health issues. “We’ve had one person so far go for inpatient treatment. We do encourage harm-reduction practices. We have a case manager on site who’s available to provide transportation to syringe-exchange services, 12-step groups, medical appointments,” Hartke explains.
Also, like FoundCare in West Palm Beach, many service providers tap into Ryan White funding to meeting housing needs. But Killelea points out that this is more likely in states that, under Obamacare, expanded income eligibility for Medicaid, which moved many low-income people with HIV who relied on Ryan White for medical care onto Medicaid—thus freeing up Ryan White funds for other uses.
In the 14 states that have thus far chosen not to expand Medicaid eligibility, “often their Ryan White funds are stretched thin and they can’t use it for housing,” she says.
Yet another source of housing funds many agencies have turned to is revenues from their 340B pharmacies. This is a complicated government program in which agencies that become federally qualified health centers (as many have in recent years, often to stay alive), complete with in-house pharmacies, are allowed by law to buy prescription medications at slashed prices but still get reimbursed by insurers at the full (often astronomical) sticker price.
They are then allowed to use the overage as they please—including for housing, which is the case at AIDS Alabama. “They realized,” said Killelea, “that housing was their number-one need” when it came to a use for extra dollars.
One thing’s certain: To echo Killelea, there’s no keeping people with HIV on their meds, healthy, virally suppressed, and hence unable to transmit the virus—in other words, there’s no ending any city’s HIV epidemic—without keeping or getting low-income people with HIV stably housed. At FoundCare in West Palm Beach, chief operating officer Rik Pavlescak, Ph.D., tells of a client, more than a decade ago, in the agency’s housing program.
“Our housing director at the time wanted to discharge her because she was noncompliant with her lease, a variety of infractions,” he recalls. “I said, no, we need to meet her first. When I saw her, my heart broke. She weighed all of 80 pounds, very frail, substance-abusing, clearly not well. I said to my directors, ‘No, this is the type of person we’re here to serve—we’re not throwing her out on the street.’”
Recently, he says, he saw the client. “She’s in recovery, stably housed, and virally suppressed. She gave me a big hug and told me she’s one of the biggest advocates for the services we provide.”