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.
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?
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.
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.
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 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.
Although many improvements have been made in housing policy for people with HIV, there is still much work to be done. Advocates are working on a variety of policies even now. While the creation of the National HIV/AIDS Strategy was a critical step, it still must be implemented. The AIDS community is holding the government accountable for steady progress and actually prioritizing housing as a key intervention against AIDS. NAHC will continue advocacy to pass legislation introduced to Congress and to follow up on a Resolution passed by the House in 2010, titled "The Role of Housing as an Essential Component of HIV Prevention, Treatment, and Care".
Changes must also be made to the way HOPWA distributes funds to reflect what the epidemic looks like today. Funding must be based on the number of HIV diagnoses, not AIDS cases, since the latter grossly underestimates the true need. We must also demand a fairer grant-making process -- one that recognizes variations across the nation by factoring in rates of poverty and housing costs in each community.
Whether you work in an organization or you're an individual trying to make a difference, there are many ways to get involved. Successful advocacy depends on diverse strategies. This article focuses on national policy, but the following ideas will work equally well on the local level.
Education, both internal and external, is an essential first strategy, and it's something anyone can do. Internal advocacy means educating the HIV community itself. For example, it's important to find ways to combine housing advocacy with efforts to ensure access to care and prevention. A coalition makes each issue stronger, especially when everyone understands how they are related. External education is also essential. People who can move policy forward, like those in Congress, may be unaware how many of their constituents need housing assistance, or may not understand how effective housing is in preventing HIV. Anyone can call, email, or visit their representatives to provide this kind of education. NAHC is a member of the Federal AIDS Policy Partnership and works to ensure that housing is included as a priority in its work. NAHC also regularly holds Congressional briefings to educate new representatives and ensure that those returning keep our issues on their radar.
When it comes to educating government representatives, it is absolutely essential that people with HIV are included, and in meaningful ways. Often they are simply asked to share their personal stories. This is certainly important to humanize the issue and can be quite powerful, but it's not enough. People with HIV also need to be front and center when talking about policy. Ensuring that they are seen and heard beyond just telling a success or victimization story not only strengthens advocacy but breaks down the stigma of living with HIV.
Community or "grassroots" organizing is invaluable. While education is important, we can never forget that education alone is not advocacy! The goal is change, not awareness. And for that to happen people need to join together, since their collective voice can make all the difference. To stop the 24-month rule discussed earlier, it was crucial that HRSA hear from the community itself. Grassroots organizing has traditionally meant groups of people meeting in person. Now, it increasingly includes social media and online networking to bring people together.
But what happens when a community has joined together, educated decision-makers, and offered a solution, but nothing happens?
Direct action takes many forms and is used by activists to "turn up the volume" when they are not being heard. There are many different direct action tactics, but all of them are more public than education-based advocacy. An effective action always has a specific target: someone who can make change happen. Media coverage is often a major goal.
Using the media helps in several ways. Elected officials, concerned with staying in office, are very image-conscious and aware of what the media is saying about them. Media attention can bring an issue to the public's attention, which can create more support and help put pressure on the target. After all, it is much easier to ignore activist demands if no one else knows about them.
When advocating against the 24-month rule, direct action involved a call-in campaign to Members of Congress. Other types of direct action include Twitter and letter-writing campaigns, rallies and protest marches, and civil disobedience for those willing to risk arrest. Housing Works, among several other AIDS activist groups, is well known for creative and nonviolent civil disobedience.
Advocates are well aware of the truth in Frederick Douglass' words: "Power concedes nothing without a demand. It never did and it never will." The evidence shows us that to end the epidemic we will need to address housing and other community needs, along with biomedical interventions. We have the science, the treatments, and the resources -- all we need is the political will. If you're ready to join the fight, look at the resources below and get in touch with us.
We can and will end AIDS.
Nancy Bernstine is the Executive Director of NAHC.
Christine Campbell is the VP of National Advocacy and Organizing at Housing Works.
Christine Rodriguez, Program Associate at Housing Works, also contributed to this article.