Ending Homelessness to End AIDS
James, a 61-year-old former skydiver, was on a six-year journey bouncing from one health crisis to the next. For three years he lived in a tent in the woods, his belongings constantly stolen or destroyed. He had been out of medical care for over a year and had a CD4 count in the 200s. After a hailstorm caused him to slip and break his arm, he moved into transitional housing. That injury was his path to an HIV housing provider. Since then, his health and overall quality of life have improved dramatically.
The transformational impact of housing on James's ability to manage his HIV and other health issues is disturbingly common and unfortunately not well understood by policy makers.
For decades we have focused on people's behavior to stop the spread of HIV. That is important -- we should make sure people know how HIV is transmitted and how they can reduce their risk. But there are other powerful forces at work, referred to as "social determinants of health". The World Health Organization defines them as "the conditions in which people are born, grow, live, work and age, including the health system." Examples of social determinants include poverty, social attitudes like racism, availability of employment, education, and housing, and exposure to violence, to name a few.
"Housing is the greatest unmet need. At least half of people with HIV have experienced homelessness or unstable housing."
The social determinants of health actually affect the cause and course of disease more than genetics or behavior. This is true for conditions like diabetes or obesity, but they have an especially strong effect on the spread of infectious diseases like HIV. That means we must address these broader aspects of health, along with behavior change and medical care, if we are ever to see the end of AIDS.
Addressing such deep-rooted issues can be overwhelming, since there is no quick fix and real change can take many years. But we have to start somewhere. At the National AIDS Housing Coalition (NAHC) and Housing Works, we advocate for housing for people with HIV. But with so many social ills, why concentrate on homelessness?
Homeless and HIV+?
The fact is, each fundamentally affects the other. Not only is housing the greatest unmet need of people living with and at risk for HIV, at least half of people with HIV have experienced homelessness or unstable housing. There are many reasons: homophobia, intimate partner or family violence, poverty, discrimination against ex-offenders, addiction, mental illness, inadequate services for runaway and foster youth, and a severe lack of affordable housing.
Being homeless also makes it much more difficult to protect yourself from HIV. Among homeless people, the rate of HIV infection is 16 times higher than in the general population. Unfortunately, no matter what makes someone vulnerable to HIV infection, being homeless magnifies the risk.
Housing IS Prevention
Research has shown that whether or not someone is housed has a greater effect on HIV (both being infected and staying healthy after infection) than mental illness or substance abuse. People with stable housing are more likely to enter care, take their medications as prescribed, and have safer sex -- all behaviors that lower HIV risk or help manage HIV disease.
Stable housing is not only an effective HIV prevention intervention, it is also very cost-effective. Each prevented HIV infection saves $400,000 in lifetime medical costs. For homeless people with HIV, providing housing saves money that would be otherwise spent on crisis services like emergency hospitalization, prison stays, and emergency shelters. A University of Southern California study showed that providing permanent housing to just four chronically homeless people would save the city of Los Angeles $80,000 per year in substance abuse and mental health services, medical care, housing, and criminal justice costs.
Current Policy (And How to Win It)
Several programs are already in place to address affordable housing for people with HIV. The most well-known, the Housing Opportunities for Persons with AIDS (HOPWA), is run by the federal government through the Department of Housing and Urban Development (HUD). HOPWA was created in 1992 to provide housing assistance and other supportive services to low-income people with HIV and their families through grants to organizations around the country. The importance of housing was acknowledged again in 2010 with the release of the U.S. National HIV/AIDS Strategy. Housing was singled out among the many basic needs of people with HIV, one that must be provided to fully address the U.S. epidemic.
How can we advocate for this critical need? Well, advocacy takes on many forms and uses many strategies. In the following example, it was not a policy that needed to be put in place, but rather one that had to be stopped.
In late 2006, a proposal was made to change part of the Ryan White CARE Act's housing policy by imposing a lifetime limit on housing benefits of just 24 months. Knowing that such a limit would be catastrophic (partly because of the cyclical nature of HIV disease), the National AIDS Housing Coalition (NAHC) fought back with research that provided overwhelming evidence of the necessity of housing for maintaining the health of people with HIV. Armed with science-based evidence, and faced with a struggling economy and a maddening lack of affordable housing, NAHC began mobilizing to stop this policy.
NAHC started by presenting the research to members of Congress, earning important allies from both parties. Representatives DeLauro, Nadler, Waters, Hirono, Soude, and Abercrombie agreed to send letters opposing the policy to Dr. Elizabeth Duke, then Administrator of the Health Resources and Services Administration (HRSA). Over 100 concerned organizations also submitted comments protesting the rule. As a result, HRSA agreed to postpone its decision.
A year later, however, despite receiving hundreds of comments against the rule from organizations and over a dozen members of Congress (including then-Senator Obama), HRSA decided to implement the rule. With only one month remaining, strong action was needed. It was time for both organizational advocacy and grassroots action. Congresswoman Rosa DeLauro (D-CT) spearheaded Congressional action opposing the rule. NAHC sent a letter opposing the 24-month rule to then-Secretary of Health and Human services Mike Leavitt with copies to every member of Congress who supported NAHC's position. A day later, NAHC and Housing Works organized a nationwide call-in, mobilizing activists across the country. HRSA knew the public was watching, and those who would be hurt by this policy made their voices heard.
The proposed rule was dropped.
The Fight Isn't Over
The example above is typical of advocacy in many ways -- reaching a goal often takes a long time and requires patience, persistence, and vigilance. Many voices are always more powerful than one, and this requires collaboration. Flexibility is essential, because different strategies will be effective at different times.
This article was provided by ACRIA and GMHC. It is a part of the publication Achieve. Visit ACRIA's website and GMHC's website to find out more about their activities, publications and services.
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