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Read the first story in this series here.
In 1992, the stigma of an HIV-positive diagnosis was life-altering for those living with the disease. It was just shy of a decade after HIV became a medically recognized condition, and Michael Kharfen, the HIV/AIDS, Hepatitis, STD, and TB Administration’s senior deputy director since 2013, says it wasn’t uncommon for landlords to evict HIV-positive tenants; others weren’t able to find housing at all.
Patricia Wudel, executive director of Joseph’s House, an Adams Morgan–based shelter for low-income residents living with late-stage AIDS and terminal cancer, is more direct: “Everybody was afraid of AIDS.” It’s a discrimination that would, in the following years, make HIV diagnoses and homelessness inextricable.
It was in this year, and in this culture of shame, that Housing Opportunities for People With AIDS, a federal grant program designed to link HIV-positive residents with affordable housing opportunities, launched its D.C. office—not under the purview of D.C.’s housing department, but under HAHSTA in the Department of Health. Kharfen says that HOPWA—which functionally served as a hospice grant program—“has pretty much been the same since then.”
More than two decades later, HOPWA remains at DOH. And as D.C.’s HIV/AIDS administration has grappled with a per-capita HIV rate higher than parts of West Africa—as of 2013, 2.5 percent of District residents have the virus—it began to seem like HOPWA would never beget change.
But the last few years have seen startling breakthroughs: Mayor Muriel Bowser’s administration announced in June 2015 that, thanks in large part to robust diagnostic efforts and a needle exchange program, newly diagnosed cases of HIV had declined by almost 60 percent between 2007 and 2013. (Interim data from 2014 shows that percentage has grown to more than 70 percent.) In a huge coup for HOPWA, 74 percent of the program’s beneficiaries were virally suppressed, taking the antiretroviral drugs necessary to render HIV nearly impossible to transmit.
Future goals are more ambitious: By 2020, Bowser wants 90 percent of D.C. residents with HIV to know their status, be in treatment, and achieve viral load suppression.
“The fight against the AIDS epidemic in D.C. is working,” proclaimed NBC4’s Tom Sherwood that June, the sixth consecutive summer in which the number of newly diagnosed HIV cases had fallen.
But that astonishing progress is, in some ways, a new kind of challenge for a city that relies so heavily on need-based federal grant programs.
Since 2012, the Washington region’s overall HOPWA budget has decreased by $3 million. Almost two-thirds of that, $1.7 million, was slashed from the District itself. A reduction in that grant has forced HAHSTA to “scale back some of [its] other programs, because of this reduction in the available funding,” Kharfen says.
Simultaneously, wealthy financiers and banking agencies—those once willing to host lavish fundraising events and bankroll innovative health programs—moved on from the cause and pulled the plug on funding; some optimists might argue that, given recent successes in managing transmission rates, charities felt they’d done their jobs.
Altogether, the slowed trickle of public and private funds out of the city has spurred concern among advocates and city officials alike. They worry that decreasing funds for HIV initiatives will sacrifice the progress that’s already been made, and that the cuts will take effect just as D.C. hits its stride in patient care.
“It’s an unfortunate reality, and that’s part of the story. HIV is no longer a new and exciting issue,” says Channing Wickham, executive director of the Washington AIDS Partnership. “And it’s frustrating because… D.C. is turning a corner in terms of its prevention efforts. So now is not the time to slow down or budge, but the resources are diminishing. And that’s the challenge.”
To compensate, District officials have had to consolidate, shuffle, and renegotiate the most effective HIV programs among a handful of agencies and nonprofits. But not even the best management can prevent the quiet chatter that the District can’t seem to catch a break in the fight against HIV.
It started like a feel-good docu-drama: When the Obama administration launched the Social Innovation Fund in 2009, it promised $1 to $5 million annual grants to create “faster” and “ready to scale” community health and wellness initiatives. The receiving intermediary organizations would match the funds dollar for dollar.
One of D.C.’s recipients, AIDS United, granted about $800,000 a year to Positive Pathways, a game-changing program that linked about 13 salaried community health workers (often HIV-positive themselves) with high-risk, low-income D.C. residents who had fallen out of the network of care.
The program was a success, reaching hundreds of residents who’d lost faith in the public healthcare system. Other city organizations, like N Street Village, began to incorporate peer mentoring into their own programs.
But after about a year, the newness faded. It became more challenging to fundraise and match the grant money; at some points, Washington AIDS Partnership (the program’s administrative sponsor) had to use its own general operating funds to make the match.
“In this work, a new program in year one is exciting. By the fifth year, even if you have the results… it’s not the latest thing on the block,” Wickham says. “It was a very hard slug going up and raising $4 million for an HIV-specific program.”
And on Feb. 29, after five years, the SIF grant money ran out. Positive Pathways closed. The Washington AIDS Partnership, along with HAHSTA and countless other organizations that developed the community health worker program into a vital tool in reaching high-risk HIV patients, had to figure out a way to grandfather in those services across other local organizations.
“Now the next iteration begins, which is a more local initiative,” Wickham says. “It will be different. It’s up to these agencies to continue the work.”
In theory, the change doesn’t sound dramatic: Community health workers will merely go from being employees of various nonprofits (like the Women’s Collective or Helping Individual Prostitutes Survive) funded by the Washington AIDS Partnership to being employees of various nonprofits funded through Ryan White grant money.
But that transition is tricky.
The Ryan White CARE program is like HOPWA’s cooler, more successful older brother. Founded two years before the latter, it is, like HOPWA, a federal HIV grant program with a formula-based allocation system. But unlike HOPWA, Ryan White funds are more flexible because organizations can use them for any health-based, rather than housing-based, initiative.
Consider, then, that a whopping 3.4 percent of the national homeless population was HIV positive in 2006, per the National Coalition for the Homeless. It’s not known how many of D.C.’s 11,623 homeless residents are HIV-positive, but the number is likely high. Sixteen percent of the clients served by N Street Village—a shelter for homeless women known for its HIV-specific programs and housing—are living with HIV or AIDS, for example.
Though the two programs are intended to address different issues, Ryan White and HOPWA dollars are often inexorably linked. Community health workers have become especially valuable because they know how to navigate that overlap.
At HIPS, which on busy days can interact with up to 500 clients, providers have struggled with how to best meet the needs of its clientele, many of whom are HIV-positive, homeless, transgender, or living with mental health issues. By far, says Andrew Bell, HIPS’ health and supportive services manager, their clients’ greatest need is housing—and HOPWA, a program initially designed to provide hospice care, hasn’t met the needs of a city whose crisis is not AIDS-related deaths, but affordable housing for those living with HIV.
“HOPWA is basically not an avenue that we’re able to get people housed through,” Bell says.
To accommodate an increasing demand for extra services, HIPS moved last August to a cozy, bustling, and very pink two-story H Street NE building. The first floor, its patient intake center, is a one-stop shop for myriad needs, comprising a private medical care facility, a clothing donation center, a kitchen, laundry room, condom and needle storage, and an office. They’re now able to hold weekly housing meetings to address what Bell calls “misinformation” that circulates among the homeless about how to use the housing voucher system.
It was a necessary move. HIPS’ last office, located in a strip mall on Rhode Island Avenue NE, could be accessed only after walking through a liquor store and behind a fence. But the move has forced HIPS to tighten its belt: Operating costs grew by about 30 percent. HIPS’ Executive Director Cyndee Clay says they’ve had to cut administrative costs, like office supplies and other “programmatic things” from their treatment and adherence and community health worker programs, which now operate at a $6,000 loss following the end of Positive Pathways.
Of all the barriers to long-term care, homelessness is the largest. That’s why it’s even more valuable to employ community health workers who have dealt with that and other issues.
“For many, many years I turned to drugs, alcohol and really gave up on life until almost seven years ago,” says a HIPS community health worker who asked to remain anonymous. “After many years of depression, homelessness, substance abuse, sex work, in and out of jail, I decided I needed to clean my life up.”
“That’s what makes my work so pleasurable. That I get to get folks to a place where they’re surviving or living with HIV. It can be done.”
The HIPS health worker, who visits a roster of about 50 patients monthly, has been “able to help a doctor understand the living environment of the patients they see.” A client living without electricity, for example, has to be prescribed a completely different set of medications than someone who can refrigerate their antiretroviral treatment.
“That’s where the linkage comes in, the advocating comes in. Buddying with them. My link between the patient and the doctor is unquestionable,” says the HIPS employee.
But this job, which Bell calls “vital,” is about to get more difficult to do.
Ryan White funds will now cover only the basic salaries of community health workers (which a spokesperson for the Washington AIDS Partnership estimates runs between $40,000 to $45,000 annually), leaving individual community health worker sites responsible for costs like worker transportation and monthly training meetings that were once integral to Positive Pathways (Wickham calls the meetings “morale-boosting” for their work, which is often grueling and discouraging).
Between dwindling local funds and increased overhead, HIPS can’t afford to continue offering those benefits.
“To be frank, even under Positive Pathways we were operating at a loss,” Clay says.
Worse yet, diminished public funds could threaten the success of the program that has been highly effective in reducing new HIV initiatives: needle exchange, which is responsible for reducing the number of new HIV transmissions via drug injections by 87 percent between 2007 and 2013.
Clay says HIPS alone has seen a 25- to 50-percent increase in the number of needles it has exchanged in the last year. But it’s received level funding—$180,000—for three consecutive years.
“This year, it’s gotten to the point where we’ve tried to absorb the cost of [the increase in needles], we’ve tried to absorb the cost, but we’re running out of needles. And that’s the least expensive part of the whole intervention. Time, space, people—that’s the expensive part,” Clay says.
She says that HIPS has requested additional funds from HAHSTA each year it reapplies for syringe exchange money; the cumulative $10,000 to $20,000 it requested would pay for more needles, to “shore up the program,” and to keep from operating at a loss. But the agency has given them level funding each year. Clay says that at HIPS’ current rate of exchange, the organization will run out of needles in July if it doesn’t limit exchanges or start turning people away.
“We’re victims of our own success, in a sense,” Clay says. “And if we don’t continue to invest money in this program, even in times where it’s not a crisis, we’re never going to meet the goal of the national HIV/AIDS strategy.”
Even in the realm of private funding, where HIV-specific charities (like those belonging to Elton John, Bill Gates, and makeup giant MAC) have historically received millions from philanthropists with personal ties to the cause, coffers are running dry.
The backslide started in June 2011, when housing financing corporations Fannie Mae and Freddie Mac were placed in conservatorship in the wake of the financial crisis and directed by federal officials to “curb, if not eliminate, [their] nonprofit spending.” The pair donated an estimated $100 million to 500 local organizations between 2007 and 2011.
“I’ll never forget that when our grant came before the [Freddie Mac] board [in 1993], [founding member and former Congresswoman] Barbara Jordan, before any discussion began for the proposal, which was totally outside the guideline of what Freddie Mac’s plans were, said to the board, ‘I don’t want to hear anybody speak against this request,’” Wickham says. “And that’s why we were funded. That kind of leadership was all around the D.C. philanthropic community, and that type of leadership has really decreased.”
Aside from those companies, Wickham counts the AOL Foundation, Meyer Foundation, Mobile Oil, and Welfare Foundation among the “very long list of local philanthropies that were funders for HIV and that no longer are.”
The District “is not a philanthropic-rich community,” he says, which has been “a challenge for all nonprofits in D.C. In HIV services for sure, but also across the city.”
Mobile Outreach Retention and Engagement, a new pilot program run by DOH and the Washington AIDS Partnership, was funded in part by pharmaceutical giant Bristol Myers-Squibb alongside the MAC AIDS Fund. The project, only months old with a $500,000 annual price tag, funds two teams of medical providers that are expected to travel to about 300 HIV patients’ homes per year, providing them with viral load testing, medication, and a permanent healthcare contact. It re-engages high-risk patients in the health system, a client profile similar to those targeted by Positive Pathways community health workers.
Bristol Myers-Squibb Company recently announced it would sell the company’s HIV research and development portfolio. As a result, Wickham says, the Washington Aids Partnership will have to look elsewhere if it needs funding past the about $685,000 the BMS Foundation has already donated. A spokesperson says that “in most cases [the BMS Foundation] does not award additional funds following completion of the pilot.”
Aside from potentially reducing the number of HIV-related emergency room visits by promoting preventative care, MORE also fills a niche in the HIV care world: Medicaid doesn’t cover home visits for patients with HIV, so the service isn’t currently considered a reimbursable cost if an organization wanted to adopt a similar system of care.
By MORE’s two-year mark, when secured funding runs out, the Washington AIDS Partnership hopes to have collected enough data to convincingly petition the D.C. Health Care Finance Administration to pass a Medicaid amendment that would make this kind of service reimbursable. This includes statistics documenting MORE’s potential to increase savings in local health funds long-term.
If proven effective, the model could create a more efficient, lower-cost way to reach patients that would otherwise likely neglect to seek care.
This dance—being charged with innovation, only to have financial insecurity rattle the project’s long-term stability—is one Wickham is familiar with. But still, he says, it’s not the District’s fault.
“I’ve been doing this work for a long time, and there’s never been a more functional time in my 20-plus years of doing this work,” Wickham says. “The D.C. government is using the resources that they do have better than they’ve ever been using them before. But it’s just not enough.”
Putting aside the decline in private funding—and assuming that all HIV patients can find their way to an organization that improves their access to medication and mental health services—the absence of substantial District dollars to subsidize affordable housing makes paying for an apartment long-term almost impossible for this population, particularly for those who have been out of the job market and aren’t professionally competitive.
“There’s been nothing done to address that, overarching, rent isn’t affordable. Like, ‘We’re going to help people with three months of rent this year, but nothing to get them through future years.’ [There are] lots of great healthcare options here in D.C., lots of service providers. The housing piece is just unsustainable,” says Brittany Walsh, Whitman-Walker’s manager of patient retention.
She estimates that of the homeless, HIV-positive population that doesn’t already have a housing assistance voucher, only about two to five percent will be successfully rehabilitated through the network of care (the end goal being to afford their own rent). Ten percent “sounds way too optimistic,” she says.
The District’s own local funds for HIV resources are undeniably scant. Aside from $200,000 in local funds to provide short-term assistance for this community, the D.C. Council made a one-time allocation of $500,000 in the fiscal year 2016 budget to replace a reduction in federal funds for HIV-specific housing. That’s less than half of the amount required to run Positive Pathways for one year.
That puts pressure on nonprofits to double up on services. At Whitman-Walker and HIPS, service providers say it’s difficult—and not within their realm of expertise—to serve as a housing counseling service.
“Our health department isn’t a housing agency. And that’s why there’s all this misconception that, ‘My healthcare provider will be my housing expert,’” Walsh says. “Whitman-Walker had to come to terms with the fact that we want to assure you that you’re getting the best, quality healthcare and that means it’s our responsibility to refer you to the best for housing. We can’t pretend to be your best housing support. And also being really upfront—there are limited options, generally.”
Other cities receiving the largest portions of HOPWA dollars, like New York and Miami, also run HOPWA programming through their respective health departments. Kharfen says the District has considered moving HOPWA under the purview of the Department of Housing and Community Development, but that DHCD focuses more on capital projects and urban development than it does rental assistance or housing programs.
But in response to concerns like Walsh’s, Kharfen says DOH has created and filled a new housing expert position, which will formally begin this month.
Using non-HOPWA funds, HAHSTA is also creating a pilot program (which Kharfen says will be up and running in a handful of months) that will provide rental assistance to about 25 participants by helping them get into an apartment and pay rent while providing linkage to employment services and other workforce development opportunities. The city would pay for the tenants’ full rent for up to two years while they work and save their income.
Kharfen says it would partly use the model of rapid rehousing, but “enriching it for people with HIV.”
He says HAHSTA will also work with other D.C. agencies, like the Department of Behavioral Health, Department of Human Services, and DHCD, some of which also have housing voucher programs (though not specifically for HIV-positive residents), to better leverage their resources as a singular, “much more collaborative” unit, Kharfen says.
Wickham recognizes the value in that.
“We’re not going to win this battle against HIV with one technique. There’s not one answer,” he says. “[With] HIV—there’s so much stigma attached to the problem, and so much shame, and so many challenges—you really have to have a whole bouquet of approaches, and that’s the only way you’re really going to stop the epidemic here in D.C.”