Now the state legislature plans to reintroduce the bill under Gov. Andrew Cuomo and advocates for AIDS housing are trying to persuade the new administration and City Hall that decreasing the rent burden for people with HIV/AIDS will save lives and—especially persuasive in this current budgetary climate—money.
Wanda Hernandez is one of the approximately 10,000 people with HIV/AIDS in New York who this bill would benefit. She receives a $200 monthly housing subsidy from the HIV/AIDS Housing Administration (HASA), a joint city-state funded venture.
Hernandez was diagnosed with HIV in 1995, but continued working at her job at an insurance company until her unrelated hypertension and neurological problems required her to go on disability in 2001. After the subsidy, Hernandez pays $800 of her $1,000 rent bill, and while she does have food stamps, this has her living on what she estimates is $12 a day for all other expenses.
"It's very difficult," Hernandez says. "You wouldn't believe how old my stuff is. Luckily I have no bugs. Out of necessity, I'm always sacrificing one thing for another."
HASA provides housing for 32,000 New Yorkers, and about 10,000 of them have outside income, such as veteran's benefits, social security or disability that HASA automatically uses to cover rental costs. For those without these income streams, HASA pays the entire rent burden.
If Hernandez qualified for Section 8 housing, NYCHA or any other housing subsidy that includes federal funding, there would be a mandatory cap on the amount of her income she pays towards her rent. But because HASA receives no federal funding, she is not protected by a cap.
However, if Hernandez didn't have HIV—if she only had hypertension, which is the reason she says she's on disability—she might not have housing assistance at all. People with symptomatic HIV/AIDS are guaranteed housing in New York City, but according to the NYC.gov's Affordable Housing Resource Center the city's only advice for people with other disabilities who don't have AIDS is "to enter as many of the standard City housing lotteries as they are eligible for."
The origins of the city's separate housing system for people with HIV/AIDS can be traced to the earliest, most terrifying days of the epidemic.
When the AIDS epidemic began, there was no effective medication. People were dying quickly. Hospitals had nowhere to discharge homeless people who were coming in droves. Discrimination by landlords was rampant.
"The 80s was a scary time that created a mass movement and created a lot of pressure. That's what generated the government response," says Charles King, the co-founder and current president and CEO of Housing Works, which in 1990 created the first housing for people with AIDS who were also active drug users. "AIDS housing happened at the beginning so incrementally. It was also informed by the fact that people weren't living long."
In 1983 the AIDS Resource Center, later renamed Bailey House, started the first housing specifically for people with AIDS. Other providers started designating AIDS housing, including the Cuomo family's charitable organization Help USA. The city's Department of AIDS Service was founded in 1985 to provide housing and other services for people living with HIV/AIDS.
Under the Giuliani administration, the agency was chronically underfunded. A 1997 City Council law required the city to provide more adequate case management to HASA clients. When the city and state refused to enforce that law, advocates went to federal court and compelled compliance.
State Sen. Tom Duane, the state's only openly HIV-positive legislator, was the city councilmember who sponsored that 1997 law. In a 2009 speech about HASA, he recalled the frightening days of its founding.
"Let me take you back," Duane said. "The early 80s. Visiting friends in hospitals. They'd go in one night. In the morning they'd be dead. That went on for months and years. You think if you got sick and your friends are dying, I would sit there and do nothing? But that's what happened. Every cold and virus, I thought I'd be dead."
Research points to an impact
The introduction of antiretrovirals in 1996 has dramatically increased life expectancy for people with AIDS, though less than those without the disease. According to a 2009 CDC study, a 20-year old starting antiretroviral treatment could expect to live, on average, to 63 years old.
And today HASA provides housing for New Yorkers with AIDS. To receive the benefits, one needs a T-cell count of under 200 or a diagnosis of two or more opportunistic infections.
New York AIDS advocates have been trying to push New York City expand HASA to people with HIV who are not yet sick. At the same time, the Bloomberg administration has tried to scale back the program through budget cuts to case managers. In last year's budget, Bloomberg proposed cutting one-third of HASA's case managers, though most cuts were restored through City Council discretionary funding.
Even with the strong AIDS housing program in New York City, and the advances in treating the disease, AIDS was still the number one cause of death in the city's homeless shelters in 2005, according to a Department of Homeless Services study, the latest available.
Because of the 1997 City Council law, people with AIDS aren't even supposed to be in the shelter system, and the approximately 1,000 people currently on waitlists for permanent housing are supposed to be placed in single-room occupancy apartments. But some people fall through the cracks, perhaps because they weren't diagnosed with AIDS before entering the shelter system.
"It's a communicable disease. It affects your immune system. It's deadly for homeless people with AIDS to enter the homeless shelters," says Sean Barry, executive director of VOCAL-NY, formerly the New York City AIDS Housing Network.
With housing for HIV/AIDS constantly under pressure from skeptical governments, advocates in New York and across the country have worked with researchers to prove the importance of housing for people with HIV/AIDS.
There is now a respected body of research showing that providing housing to people with AIDS increases their life expectancy and improves their health outcomes, saving the government money by reducing hospital visits and other medical costs. There is also preliminary research that has shown that people with HIV/AIDS who are stably housed are less likely to share needles and have unprotected sex, and thus are less likely to cause new HIV infections.
Armed with this research, Housing Works is planning to push Cuomo to expand guaranteed housing for people with HIV/AIDS as part of Medicaid restructuring. Currently, although New York City requires all people with symptomatic HIV/AIDS to be housed, the rest of the state doesn't .
Broader concerns about housing the sick
Angela Aidala, a researcher at Columbia University Mailman School of Public Health has been researching the health outcomes for New Yorkers with HIV/AIDS since 1994, with funding from the New York City Department of Health. Her ongoing research has shown housing is consistently one of the major needs of people living with HIV and AIDS.
Now, Aidala says, it's clear that housing is an important need for everyone with long-term illnesses. She noted a 2005 study by David Himmelstein at Harvard Medical School that noted that half of all people who file bankruptcy cite medical causes.*
"There are some issues specific to AIDS housing and HIV as an illness. For example, there is stigma surrounding HIV that is not the case with diabetes," she says. "But I'd like to see more collaboration at the research level of housing for people with AIDS and other chronic illnesses."
Aidala said that at the federal level, the Department of Housing and Urban Development is starting to note the importance of housing for maintaining positive health outcomes for individuals across-the-board.
However, AIDS housing advocates say, the fact that people with other illnesses should get housing help doesn't change the fact that there needs to be a rent cap for people with HIV/AIDS.
"We think everyone should be housed and don't want to pit one community against another, but we're not talking about creating a new entitlement or a new program," Barry says. "Homeless people with AIDS deserve rental assistance. The question is if there should be an affordable housing protection."
Cuomo hasn't indicated if he'll support this bill. Since the days when Help USA helped start New York City's AIDS housing system, Cuomo has been an advocate for housing for people with AIDS. When he helmed HUD, he increased federal housing for people with AIDS. And in his preliminary budget cuts released last week, the AIDS Institute, which coordinates AIDS services, wasn't touched.
"There's reason for optimism," Barry says. "Cuomo's record on affordable housing is one of his biggest assets with progressives and low-income African-Americans and Latinos."
A bill creating the 30 percent rent cap bill was originally introduced in Albany in 2006. It first passed in the State Senate in July 2009. Last year it passed the Assembly as well, before running into Paterson's veto. Paterson said he stopped the bill because he didn't want to impose an unfunded mandate on New York City. The state estimates the law would cost New York City and New York State $20 million in total.
But a cost analysis by Shubert Botein Policy Associates, a consultancy that "supports development and implementation of public polices and programs that impact low income people and communities," states New York City and State would actually save money under the new law because fewer people will go into arrears and face eviction. Using data comparing tenants who have the rent cap with those who don't, the study estimates that more than $16 million will be saved on evictions alone.
But Housing Works' Charles King is reluctant to base his case for the bill solely on a fiscal argument. "To be honest, there's lots of reasons people fall into arrears," King says. "There are still people using who will smoke up all their money if they have a larger income. The real argument is that it's the decent, humane thing to do."
* This paragraph was corrected from the original version.