In the 1980s, when AIDS was just beginning to wreak havoc in the United States, New York’s David Peterson was grappling with myriad personal demons. As a result of being addicted to drugs and dealing them, Peterson was incarcerated on multiple occasions. He was diagnosed with HIV in 1987—one year after his mother passed away while he was in jail. His wife of 12 years and two children, ages 16 and 18, left him for Miami soon after.
“I lost everything,” says Peterson, now 57. “I owed back rent on my apartment, but [taking] the drugs became more important.”
Arrested again in 1990, Peterson served a six-year sentence, and when he was released, he had nowhere to turn and no one to turn to. Without family, a job, health insurance, money or a place to sleep, his list of options was short.
“I didn’t feel like a person,” he says. “I liked the glamour of being a drug dealer, [but] the only thing that it was going to give me was death or jail. And jail doesn’t have a retirement plan.”
Peterson’s story is similar to those of tens of thousands of people across the country—and millions overseas—who have also faced the brunt of the intertwined epidemics of homelessness and HIV, neither of which is considered polite dinner conversation. The public’s, and government’s, reluctance to discuss both AIDS and homelessness has not helped society solve either issue. Indeed, distance only breeds complacency, and many who find themselves HIV positive and/or homeless thought that neither would happen in their lives. But the truth is that roughly 40 to 60 percent of all people living with HIV have reported some instance of housing instability since their diagnosis, attributed either to discrimination around their HIV status or an inability to pay for both housing and medical care, including antiretroviral medications.
The likelihood that HIV infection will lead to homelessness increases if a person lacks health insurance. On the flip side, being homeless magnifies the risk for contracting HIV; homeless people are more likely to use illicit drugs and alcohol, and that can lead to having unsafe sex or sharing needles. Being homeless (and hungry and unable to deal with harsh weather when living outside) can also lead people to do things they would not otherwise do if they had a safe home—like trade sex for money, shelter or food. It’s no surprise, then, that HIV prevalence among the homeless is estimated to be nearly three times higher than that of the general population.
The notion of providing stable housing as a prevention and treatment tool for HIV seems like a no-brainer. Stable housing can help prevent new infections and improve the lives of those living with the virus. If you have a safe, private place to keep your meds, you are more likely to take them—and take them consistently and correctly so you don’t develop drug resistance. If you have a place to store food, you are also more likely to be able to stomach (in some cases literally) the meds’ side effects. But despite the clear correlation between the spread of HIV and homelessness, those advocating on behalf of the HIV--positive homeless (and those without homes who have yet to encounter the virus) find themselves fighting particularly nasty battles.
Housing Works is the largest nonprofit grassroots AIDS service organization (ASO) in the country committed to improving the lives of the HIV-positive homeless. Created in 1990 by members of the AIDS Coalition to Unleash Power (ACT UP), Housing Works bolsters the efforts of New York City officials to help the 30,000 homeless people living with HIV/AIDS throughout the city. Today, Housing Works operates seven major housing facilities in three boroughs in addition to four daytime health care centers for adults. It provides clients with lifesaving housing and services such as primary medical care, case management, counseling and job training.
Charles King, who cofounded the organization, sits at the helm of Housing Works as its president and CEO. While he was diagnosed with HIV in 2002, he has always been an outspoken and iconic leader in the AIDS community.
“Housing Works has been around for 18 years and has grown to be the largest ASO in the country. But that’s not what I’m really proud of,” says King, 53. “What I’m really proud of is that in doing that, we have held true to the idea of Housing Works as a healing community.”
It was this philosophy that saved Peterson’s life. In 1997, he moved into Housing Works’ newly opened Keith D. Cylar House (named after King’s former partner and Housing Works cofounder) on Manhattan’s Lower East Side. There, he received the necessary medical attention he had been avoiding since his HIV diagnosis.
“In ’87, when I went to the doctor and found out I was HIV positive, I never went back,” Peterson says. “I didn’t want to go to the doctor to find out anything. I had infection after infection, and nothing was healing. Once I found Housing Works, they really took care of my health. They gave me the support I needed, they kept me off the streets, kept me from using and kept me from hanging out with the kind of people that would send me back to jail.” Peterson is currently taking methadone to help him manage his addiction.
“Housing Works accepts people where they’re at,” says Peterson, who, in addition to being a client, spent seven years working the front desk at Cylar House. “After living on the street, you don’t know any better. You think that’s the life. And if you’re on drugs, you can stay stuck and not realize that there’s something better. Now, I know there’s someplace better for me.”
According to King, roughly 90 percent of Housing Works’ clients could be described as chronically chemically dependent and many are dealing with mental illness. Once settled into secure, safe housing, about one third of those people stop abusing drugs altogether. Another third—in the course of six months to a year—are able to successfully manage their addiction, adhere to their antiretroviral and psychotropic medication regimens and perform daily activities. Only a third of drug-using clients continue to chronically abuse drugs once enrolled in Housing Works programs—and King is proving that even this group can be housed safely and successfully.
When I met with King at Cylar House, he was laughing it up with one of his clients, leaning over the edge of a pool table to line up his shot. Dressed more for the boardroom than the game room in a crisp dark suit and a brown and gold checkered tie, King greeted me warmly before taking me outside to a bamboo garden, where the ashes of his former partner are buried. I followed behind him, as he stopped every few steps to chat with enthusiastic clients and staff members.
Forty-five percent of Housing Works’ staff were themselves previously homeless. One of those staff members, Nelson Marti, arrived in New York City a year and a half ago from Puerto Rico, where allegedly mismanaged AIDS funds have left thousands of HIV-positive people without treatment. At the time, HIV was taking a tremendous toll on the 12-year Marine Corps veteran.
“When I came into Housing Works a year and a half ago weighing around 112 pounds, I was very sick. I wasn’t stable with medication because the medication I was getting wasn’t getting to me on time,” says Marti, 46, who was diagnosed with HIV in 1993. “I now have an undetectable viral load and weigh 150 pounds. The last time I weighed 150 pounds was when I was in the armed forces.” Today, Marti lives at Cylar House and works three days a week in Housing Works’ intake/outtake department and is enrolled in its job training program.
As King moved through his facility, I noticed his silver, twisted ponytail hanging halfway down his back. It’s a symbol of his counterculture convictions. King has, on more than one occasion, proved wrong those who said you can’t help the HIV-positive homeless.
“To me, he’s a great man, like a father,” Peterson says. “He gets down with you. If you’ve gotta walk a thousand miles, he’ll walk with you.”
Indeed. And walk and drive great distances he does. In September, King participated in his Campaign to End AIDS (C2EA)’s “Stand Against AIDS,” which drew caravans of AIDS activists from all over the country to Oxford, Mississippi, where Senators Barack Obama and John McCain engaged in their first presidential debate on September 26. The goal? To try to ensure that whoever entered the White House would develop a comprehensive AIDS strategy that includes specific attention to homelessness in the United States.
“I’ve been very dismayed at seeing some of the national AIDS plans that have been put forward—they don’t even mention the word ‘housing,’” King says. Housing is seen as this very expensive, complex intervention, he explains, when in fact it’s much cheaper than addressing the health care needs that result from people being homeless.
According to data presented March 6 at the National Housing and HIV/AIDS Summit in Baltimore by the AIDS Foundation of Chicago, providing stable housing and wraparound care for homeless people with chronic conditions such as diabetes, cancer and HIV/AIDS only costs an annual average of $12,000 per client.
The Chicago Housing for Health Partnership (CHHP) study found that the city’s health care system could save more than $1 million over the course of 18 months by providing housing as opposed to “usual care”—the system of emergency shelters and family and recovery programs. Clearly, providing supportive housing is much cheaper than caring for sick people living on the street.
Why, then, has housing not been fully embraced nationwide as a viable, realistic form of both HIV prevention and treatment? “People still don’t believe that homelessness is real. [Also people don’t think] it’s worth solving because they blame people’s individual choices for it. So in that way, there’s a lot of similarity with HIV/AIDS,” says Nancy Radner, CEO of the Chicago Alliance to End Homelessness, which works cooperatively with the AIDS Foundation of Chicago. “There’s a level of denial, which is insane.”
King has always supported expanding housing access; he criticizes New York City and New York State housing legislation that refuses to provide housing assistance to people living with HIV until they are diagnosed with AIDS (which means their CD4 count is 350 or lower and they have one of more than two dozen AIDS-defining opportunistic infections). King sees such laws as a hindrance to getting people on treatment early and ensuring that they remain healthy.
Indeed, it seems backward to wait to help people until they are critically ill. Plus, the cost to care for them will be significantly higher than if earlier interventions had helped them maintain their health. When people get housing, they can stay healthy, employed and self-sufficient. They are more likely to seek proper medical care and to treat themselves so that they successfully lower their viral load, thus reducing their relative level of infectiousness. Also, when people have housing they are more likely to have higher self-esteem and make better decisions about their health, treatment and interactions with others, including whether they disclose their HIV status and practice safer sex.
Two winters ago, an HIV-positive woman and Housing Works client visited King in his office with one request: She wanted King to pray that her CD4 count would be low enough for her to get a house of her own. At the time, she was sleeping under a tractor trailer, and winter was fast approaching.
“As you can imagine, it was tremendously painful to hear this woman asking me to pray for her health to decline,” King recalls. The next—and the last time—he saw the woman, her CD4 count was still high. “In a way, I felt responsible for that, because we stabilized her health, we got her on meds—and so we kept her from getting housing by keeping her healthy,” King says. “That’s a very sick thing when you think about it. I have to emphasize that I think you see the same thing around the world.”
King notes that while the President’s Emergency Plan for AIDS Relief (PEPFAR) provides billions of dollars for lifesaving drugs and prevention services globally, the plan does not contain any provisions for helping people secure affordable housing.
“We address the issue almost as if it were only an issue for developed countries, and the reality is that homelessness is a pervasive issue for people living with HIV/AIDS and people who are at-risk around the world,” says King who, just two months before speaking with POZ, attended the funeral of a 13-year-old orphan in Haiti, who died of AIDS-related illness after she was forced into the streets and to prostitution.
In August, at the XVII International AIDS Conference in Mexico City, Housing Works joined with the National AIDS Housing Coalition (NAHC), the San Francisco AIDS Foundation and the Ontario HIV Treatment Network in hosting the first International Summit on Poverty, Homelessness and HIV/AIDS, which united leaders from Mexico, Nepal, South Africa, Haiti, the United States, Peru and Canada to demand that all governments worldwide include housing as part of their national AIDS plans. Following that groundbreaking satellite session, NAHC introduced a joint resolution in both houses of Congress endorsing this declaration.
“I’m really excited about the possibility of getting the U.S. Congress officially on record as acknowledging the need for housing,” King says. “I’d love to see, in a few years from now, that declaration to be included in the United Nations’ Global Plan.”
Domestically, AIDS service organizations are struggling to meet treatment and housing needs for their clients and are increasingly crippled by dwindling funds. Housing subsidies account for just 1.45 percent of funding through the federal Ryan White CARE Act. According to the April 2008 HIV/AIDS Policy Report from the National Association of People with AIDS and the Treatment Access Expansion Project, the budget for federally funded Housing Opportunities for People With AIDS (HOPWA) will remain frozen for the next fiscal year. Meanwhile, the HIV infection rates and the rate of homeless Americans, continue to climb.
John Foran, CEO of New York-based ASO Praxis Housing Initiatives Inc.—which provides supportive services and transitional housing—is already feeling the crunch. He expects to lose funding for many of his organization’s client services, ranging from needle exchange to vocational training to housing placement.
“All of these cuts will result in not only more people [being pushed out] on the street, but [also] more people living with the virus on the street. And it’s going to contribute to the spread of AIDS,” Foran says. “[Making cuts to housing programs] is throwing the baby out with the bathwater. These are cuts that are not well thought out. We’ve made tremendous progress, but I see nothing coming but backsliding.”
With the global economy and U.S. housing market in crisis, one wonders how the credit crunch and spike in home foreclosures will impact the number of HIV-positive people tossed out onto the streets. On August 26, 2008, The New York Times reported that with high rental rates, ineffective antidiscrimination laws and a lack of public benefits, many people living with HIV in the Big Apple may be facing a year or more of searching for an affordable place to live.
These housing difficulties are not confined to major coastal cities. Panic on Wall Street stretches all the way to Waco, Texas, and threatens to force people—both HIV positive and negative—out of their homes in every state in our nation.
“Housing is a difficult problem for anybody, and this [economic] crisis can’t help but make it worse,” says Jimmy Dorrell, executive director of Texas-based Mission Waco, which services homeless or low-income people in the region, including those living with HIV. “And there’s just not adequate housing for those that are poor. Invariably, when they do find it, they end up in tough areas that are drug infested. And more people are going to become infected with HIV because they’re in that environment or they’re not taking care of their own lives.”
Despite the anxiety caused by the crumbling economy, King sees opportunity in our financial downturn.
“What’s happening right now is that the bottom is dropping out of the housing market,” King says. “If we had the resources and we could buy up some of these foreclosed homes and use them to house homeless people—particularly homeless people living with HIV—we’d be doing a number of important things. Most directly, we’d be providing people with HIV or who are at risk with a safe, secure place to live. In addition, we’d be taking inventory off the market, and we’d be stabilizing communities and the housing market as a whole as well.”
Stabilization seems to be the key component in the fight against HIV and homelessness. Just ask fashion stylist Mykel Smith, a former client of Praxis who, caught up in the hard--partying fashion industry, found himself homeless, with little money and HIV positive in 2006.
“I had been sleeping on a friend of mine’s sofa, so I had been [technically] homeless maybe for two years without realizing it. [During that time] I never had a place of my own,” says Smith, 45.
During his six-month stay at Praxis, Smith found that having a proper place to live was an integral part of his HIV management, which, in turn, helped him improve other aspects of his life. Praxis provided him with medical care, counseling and financial services to better equip him for independent life. He is now living on his own in the Bronx, New York, and held his first fashion show for designer Simon Duncan on October 28, 2008.
“I’m not stressed about HIV anymore,” Smith says. “I don’t ignore it. I go to appointments with my doctors, I take my meds and I feel healthy these days. Having my own place [to live] is the best thing that could ever happen to me because I don’t have to worry about where I’m going to lay my head the next day.”
Perhaps it really is that simple. Strip away the complications of a flagging economy, a housing crisis and uncertain AIDS agendas, and the simple fact remains: Stable housing is effective HIV treatment—and an integral tool in fighting new infections.
Says Chicago’s Radner: “What we’re lacking isn’t the solution; we’re lacking the political will.”
Mr. President, are you listening?