Beyond ARVs: Prescribing Housing to end AIDS in New York City

BY JULIET GLAZER.
Photography by Ginny Schubert.

The relationship between homelessness and health has been widely documented. One aspect of this relationship came to light in the late 1980s as the fight against the AIDS virus began. According to the Centers for Disease Control, people who are homeless are far more likely to be HIV positive. Housing status predicts HIV risk and outcomes independently of a range of individual characteristics and service use variables, including race/ethnicity, history of substance use, mental illness, and primary care and case management.[1] Moreover, the National Alliance to End Homelessness reports that up to 50% of people living with HIV/AIDS (PLWHA) are at risk of becoming homeless due to prolonged absences from work because of sickness and the high cost of the anti-retroviral medicines used to treat the disease.[2]

An end to HIV may be in sight, through increasing the use of antiretroviral drugs. These drugs are extremely effective if taken as prescribed. Antiretrovirals work to suppress the HIV virus to undetectable levels, such that transmission becomes impossible. However, living on the streets or in emergency shelters is a significant barrier to starting and following up on antiretroviral treatment plans, and to maintaining good overall health. Insufficient food, untreated mental illness, intravenous drug use and living in close quarters in shelters and single room occupancy (SRO) hotels with people who have TB are some of the major factors that worsen health outcomes by decreasing treatment uptake and follow-through for homeless and unstably housed PLWHA. Ending the AIDS epidemic will require ending transmission by increasing the use of antiretroviral drugs, and this will require a special focus on homelessness.

In 1990, there were an estimated 35,000 homeless people living with HIV/AIDS (PLWHA) in New York City, but there were fewer than 350 supportive housing units.[3] Virginia Shubert, Charles King, and Keith Cylar founded an organization called Housing Works in 1992 to combat this problem. Housing Works’ mission is to show that HIV-positive homeless persons can be successfully housed, thus improving their health, through providing a harm-reduction approach to fighting HIV. The harm-reduction approach holds clients responsible for their behavior rather than for their status as intravenous drug users or returning prisoners, for example. In a 1995 article on Housing Works, Shubert and Mary Ellen Hombs wrote that “viewing homelessness as the ‘result’ of individual pathology that must be corrected will lead inevitably to the questionable denial of essential housing and services.”[4] Rather than requiring abstinence from drugs or alcohol, which may be very difficult for clients to maintain, Housing Works focuses on providing needle exchange services and mental health counseling, among other supports.

Housing Works also brings a unique approach to AIDS activism through public health research. I spoke with Shubert, who heads the research department at Housing Works, about the integral role of research in policy advocacy and activism.[5]  Shubert originally trained and worked as a lawyer and pursued advocacy for the homeless in court.  She worked on two legal cases that made the importance of public health research in activism clear for her. The first case, Mixon v. Grinker, involved a homeless, HIV positive man who had contracted tuberculosis in the city’s shelter system but was denied support for individual housing. Shubert won the case after a doctor at Harlem Hospital published a study that used DNA testing to prove the man’s particular strain of tuberculosis had been rampant in the shelter where he had stayed. In the second case, Shubert worked for plaintiffs who sued the city because rental assistance applications were not processed in the 45-day time period mandated by law. Shubert was able to win the case after conducting a study with outside researchers that tracked the rental assistance application process for clients in a new Housing Works residence, proving that it took the city an average of 191 days to process applications. Shubert says that the two cases “showed the power of having an academic researcher demonstrate something that you know is true but you can’t prove.”

Shubert has since shifted her focus to research. Since 2005, she has convened the Housing and HIV/AIDS Research Summit along with the National Coalition for Housing and the Ontario HIV Treatment Network to promote research on the interrelations between HIV and housing in North America.

With Housing Works, she has developed a method for “action-oriented” participatory research, to involve the community under study in the design and implementation of research. For a study at Housing Works’ Women’s Transitional Housing Program for women returning from prison and jail in Bedford-Stuyvesant, Brooklyn, Shubert and her colleagues developed a set of research questions in conjunction with the case managers and residents at the housing facility. While the case managers were nervous that researchers would ask women about intimate partner violence, residents were happy to discuss the topic, leading the researchers to revise their question set to reflect a compromise.

Shubert expresses sadness that the most effective kind of research in the advocacy world focuses on the cost-effectiveness of intervention programs. At Housing Works, “the whole point is to create an evidence base to support increased funding for similar kinds of housing programs, and to prove that [they are] cost effective,” she says. At worst, politicians view housing programs as a competing need, rather than an essential right and central support. However, she says that “if you can prove that savings in Medicaid or savings from reduced jail time will offset all or part of the cost of housing, you’re much more likely to get the housing funded or to hold onto the funding for housing.” Other offsets from supportive housing include fewer emergency room visits and ambulance rides. Shubert and the research teams she works with have been successful in demonstrating cost-offsets from supportive housing intervention programs.

Current research gaps are both national and global. Shubert says that the global issues of poverty and HIV are often perceived as “so intractable that there aren’t many interventions being tried to address the problems.” Consequently, cost-effective, intervention-based research projects are difficult to design. Nationally, Shubert points to a gap in research on the unique risks and circumstances that HIV positive transgender women face. Shubert also identifies a lack of research on intermediate level housing supports that could bridge the gap between involved and costly housing programs and non-intrusive rental assistance programs. “How little can you interfere in someone’s life and still provide effective interventions?” she wonders.

Housing Works has recently succeeded in involving New York State with a project to strategize an end to AIDS. The strategy will focus on ending new transmissions by accomplishing the goal of moving 90% of HIV positive people to having undetectable viral loads on antiretroviral drug treatment programs. Housing Works has taken on the challenge with its own clients and is developing studies in conjunction with researchers at the University of Pennsylvania on the use of cash incentives for case managers and clients to maintain undetectable viral loads. Looking forward, Shubert says, “It would be wonderful to be able to say they’ve ended AIDS at least in terms of new transmissions at Housing Works.” New paradigms for intervention-based and cost-effectiveness global health research will help to achieve the goal of ending AIDS in New York, across the nation, and across the globe.