AIDS Activists Seek Gains Amid High Infection Rate

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Frank J. Oldham, Jr., who has been HIV-positive for over 20 years, is still haunted by memories of the early 1980s when an unidentified, lethal plague wracked lower Manhattan. “AIDS was like a holocaust for the gay community in Chelsea and Greenwich Village,” Oldham recalls. “There’s a generation of us who saw friends and lovers dying all around us. We were going to memorial services daily.”

Since then, Oldham has dedicated much of his time to keeping the spotlight on HIV/AIDS. He served as head of the city’s Office of AIDS Policy Coordination in 2003 (whose functions have since been rolled into the city health department), and now leads the National Association of People with AIDS as president and CEO. “We can’t pretend as though it’s no longer fatal. The epidemic is still destructive and spreading so rapidly,” says Oldham, a Brooklyn native. “Given the statistics about who is most at risk, we definitely need more black gay male organizations doing intervention work.”

But the effort to reverse the trend that has HIV infection spreading most rapidly among black gay men will no longer include People of Color in Crisis (POCC), a leading gay advocacy organization that recently ceased operations. Founded in 1988, POCC received national recognition for its HIV/AIDS prevention services that catered to the city’s African-American and Caribbean populations. The group also sponsored a popular annual festival, dubbed Pride in the City, which blended raunchy revelry, on-site HIV testing and musical performances by major recording artists like En Vogue and Amerie.

Critics, however, charged that POCC engaged in dubious spending practices. By 2008, POCC’s budget was reportedly being audited by the federal Department of Health and Human Services. Two weeks ago, POCC’s website was up and running – but now even most of the content has been removed.

And while other community-based organizations including Gay Men of African Descent in Brooklyn, Harlem’s Black Men’s Xchange, and the Queens-based Hispanic AIDS Forum remain, the demise of POCC vexes some HIV/AIDS activists. “POCC was a place for innovation around prevention,” says Leo Rennie, a POCC board member in the mid-1990s. “It’s a huge loss for the community because they pioneered programs that have been adopted across the country.”

It’s been four months since the city’s Department of Health and Mental Hygiene released its latest HIV infection figures, which continue to show a disproportionate impact among black and Latino men who have sex with men – or MSM, as they’re called. That’s been the case for years now in New York, where the HIV infection rate is three times the national average.

From 2001 through the first half of 2008, newly-diagnosed HIV cases in New York City rose by some 37 percent among young MSM, particularly black males under the age of 30, according to the health department. The agency’s response has included distributing nearly 42 million male and female condoms last year, more than doubling the number of HIV tests performed at city clinics during the past six years, and launching a peer social networking program designed to increase testing among at-risk groups.

“We take the view that one infection is too many,” says Dr. Monica Sweeney, assistant commissioner of the city health department’s Bureau of HIV/AIDS Prevention and Control. “We’re working to make sure that everyone who is HIV positive will take steps to ensure that the infection stops with them and that anyone who is HIV negative will say, ‘I am responsible for making sure that I don’t become infected.’”

But why has that message, in tandem with many millions of dollars spent by the city, failed to slow the rate of new HIV infections among young gay men of color in New York? It’s a question that Darrell Wheeler, an associate professor in the School of Social Work at Hunter College, has grappled with for years. “The solution is in the complexity, not in the simplicity,” Wheeler says. “You can have 50 groups like POCC out there. But it’s not about putting $1 million into more programming and organizations. It’s communities coming to the realization that we haven’t done well with sex and drugs as discussion points.”

As the campaign to stem the spread of HIV inside communities of color continues – and along with it, the ongoing debate about the most effective means of doing so – local advocates are stepping up their efforts to preserve hard-won gains of the past while pushing the city and state to implement a number of initiatives they contend will improve the quality of life for the 104,234 New Yorkers reported to be living with HIV infection or full-blown AIDS. Here’s a look at several issues:

Housing: Inching closer to more affordable rent

For Wanda Hernandez, 46, a bright smile appears to come naturally. But it quickly disappears the moment she reflects on her life. “It’s hard to go outside. I’ll see the ice cream truck go by and I know that I can’t even afford to buy” a treat, Hernandez says. Diagnosed with HIV in 1995, Hernandez was born in Puerto Rico, raised in the Bronx and works each election period for the Board of Elections as a translator at the polls.
As one of the 30,000 low-income people who receive housing support from New York’s HIV/AIDS Services Administration (HASA), which is overseen by the city’s Human Resources Administration (HRA), Hernandez receives Social Security Disability Insurance. After paying $1,085 in rent for a one-bedroom apartment in the Bronx, Hernandez says that she’s left with barely $300 per month to live on. “It’s hard because you have to buy toiletries and use public transportation to get medicine. It’s just me with no family support,” she explains. “Some people tell me that I should find a cheaper apartment. But where is that supposed to be?”

It’s a complaint that HIV/AIDS groups have heard from clients for years – that the portion of their disability income paid toward rent is exorbitantly high. “Ultimately, New York still has an unparalleled support network for people with AIDS that was fought for and won by people with AIDS. It wasn’t because of government benevolence,” argues Sean Barry, executive director of the New York City AIDS Housing Network. “But if you kick the tires and look under the hood, you’ll see that support system is starting to fall apart.”

Case in point: The dissolution of the Scatter Site II program, which since 2001 temporarily relocated homeless people with HIV/AIDS out of the shelter system and helped them to develop independent living skills. During budget cuts this spring, City Hall attempted to get rid of both that and Scatter Site I, which funds permanent housing for homeless and formerly homeless people living with HIV/AIDS, but City Council restored $1.9 million for the latter program.

Meanwhile, after years of protests and intense lobbying, activists are pushing for a universal rent cap of 30 percent of income for poor New Yorkers with HIV/AIDS – the same structure as for other benefits programs, like federal Section 8 housing assistance. “It’s a top priority for our clients,” says Nathan Schaefer, director of public policy at the Gay Men’s Health Crisis. “The current structure forces them to pay all but $300 of their benefits toward rent and they’re basically left with the equivalent of $11 a day, which just is not livable in this city.”

Last month, Manhattan State Senator Tom Duane, who is openly gay and HIV positive, brought his proposed legislation enacting a 30 percent rent cap to the floor of the legislature, coupled with a fiery, emotionally-charged 21-minute late night speech that’s been viewed more than 16,000 times on YouTube. “This is the only group receiving public benefits carved out to pay more than 30 percent in rent,” Duane told City Limits. “I wasn’t going to allow my colleagues to cause people pain and sickness because of politics.”

The bill passed the Senate by a vote of 52 to 1 and is pending in the Assembly, where it’s slated for a vote during a special session next month. If the measure were to pass, Manhattan Assemblywoman Deborah Glick, who sponsors the bill, says that her “biggest concern” is an automatic veto by Gov. Paterson based on the cost. And while analysis by the Brooklyn consulting firm Shubert Botein Policy Associates estimates that the city could save millions over the long term, some raise questions about the measure’s viability. “We have some concerns about the additional costs to the city and the state,” says Human Resources Administration spokeswoman Barbara Brancaccio, who adds that the agency will “continue to monitor developments.”
Also watching is Frank Treadwell. For the past 26 years, he’s been living with HIV and now has the AIDS illness. By Treadwell’s count, he’s moved out of five different apartments after falling behind in rent. “I was pinching on rent to pay for toiletries, gas, electricity and cab fare to pick up medication,” says the 50-year-old Bronx native. According to Treadwell – who says that he’s a client of HASA – he isn’t required to pay more than 30 percent of his monthly income in rent for the Harlem studio he currently occupies. But that’s because he’s enrolled in a substance abuse program, which infuriates him. “I’ve been clean for 20 years,” Treadwell says. “I feel like I’m trapped.”

Immigration: Keeping health care in the community

There’s good news for HIV-positive travelers to the U.S.: On July 2, the Department of Health and Human Services published in the Federal Register its proposed rule to eliminate HIV from its list of communicable diseases. Doing so would overturn the HIV travel and immigration ban that has largely restricted HIV-positive people from entering the United States. The proposed change is currently undergoing a public notice and comment period. “For the past 15 years we’ve heard from relatives, friends and colleagues who wanted visas to come, but could not because of this ban,” says Oscar Lopez, health policy director at the Latino Commission on AIDS in Manhattan. “People have been responding to see it lifted.”

But there’s also bad news for migrants with HIV/AIDS and those who work with them. Staff and clients at the many smaller community-based organizations (CBOs) that provide healthcare to immigrants – along with critics like Comptroller William Thompson – contend that the city’s proposed plan to create a Core Coordination Program for people living with HIV/AIDS will consolidate funding inside large hospitals and health clinics, sidelining community-based providers in the process.

Launched in 1981, the African Services Committee in Harlem provides HIV/AIDS and tuberculosis testing, counseling, housing support and a range of immigrant-related programs. “We see Mexican gay men and Caribbeans from Brooklyn who travel [uptown] to avoid the stigma of being identified as HIV-positive in their community,” says Amanda Lugg, director of advocacy at the African Services Committee, which tests about 2,000 people annually for HIV and tuberculosis.

Like many nonprofit CBOs, African Services Committee receives clients from local hospitals and through its own outreach efforts. The city’s move to centralize services would be counterproductive, says Lugg. “We’d be losing our expertise,” she said. “The idea is to have testing, case management and link-to-care all take place within the hospital environment.”

According to Thompson’s critique, the city’s proposal would consolidate the funding the city receives through the Ryan White CARE Act, a $2.1 billion federal program launched in 1990 to fund initiatives for low-income people living with HIV/AIDS, and their families, nationwide. Last year, the city reportedly received $102 million in Ryan White funding – portions of which were used to fund HIV/AIDS-related mental health and family counseling services along with substance abuse programs at area hospitals, clinics and CBOs. And the state Department of Health’s AIDS Institute funds 108 CBOs citywide along with 74 other groups in upstate New York and Long Island.

Across the city, hospital emergency rooms are typically the first stop for low-income immigrants – both legal and illegal – suffering from illnesses related to HIV and AIDS. Following initial treatment, they’re often referred to CBOs. It’s a process that one middle-aged HIV-positive woman from sub-Saharan Africa (who withheld her name) knows firsthand. The woman is not a legal resident of the United States, and after falling ill five years ago, she initially sought treatment at a local hospital, where she was referred to African Services.

Today, she volunteers for the group by counseling people newly diagnosed with HIV. “People who share my status often don’t know where to go,” she says. “For me, African Services Committee has been everything. They assisted me with food, housing and they have really been there for me.”

CBOs maintain they’re particularly effective in working with populations existing in the city’s shadows by ensuring that they remain linked to care – helping to stem the spread of the disease as a result. In the past year, staffers at multiple CBOs say they noticed that some funding applications emphasized high-volume caseloads as a criterion. “We’re definitely seeing an effort to refocus funding,” says Wally Cantu, director of development at the Latino Commission on AIDS. “It’s making it harder for small CBOs to compete.”

And doing so, CBOs argue, places them at a distinct disadvantage in securing funding compared to much larger hospitals. “If that’s the direction the city is going, then hospitals won’t be returning those clients out to us. They’ll be taking care of the case management themselves,” says Lugg. “But we provide a space that allows us to deal with the stigma of HIV not only among African immigrants but in other communities of color.”

In response to a request for details about the funding process and reaction to complaints from CBOs, the New York City Health and Hospitals Corporation issued this statement: “We value our relationships with community-based organizations and rely on their unique expertise to provide a variety of services and support to HIV patients. We view our collaborations as an important element of our ability to holistically meet the needs of HIV patients.”

Advocates at already cash-strapped CBOs remain concerned. “It’s hard for CBOs to complain too loudly given where the money comes from,” says Cantu. “But you hear a lot of individual grumbling. We work with hospitals so it isn’t about taking anything away from what they do. There just needs to be room at the table for both of us.”

Prisons: Seeking HIV and hepatitis prevention

Tracie Gardner, director of New York State Policy and coordinator at W.I.S.H. – the Women’s Initiative to Stop HIV – has worked on a range of HIV/AIDS-related policy issues for nearly 20 years. From her perspective, focusing on the rise in newly-diagnosed HIV infections among black and Latino MSM is “certainly grounded in reality,” but doesn’t fully explain the increase among women of color. According to the last major study conducted by the Centers for Disease Control in 2004, HIV was the leading cause of death for black women aged 25-34 nationwide.

Often neglected as a contributing factor, many activists and observers contend, are correctional facilities. “There’s a direct correlation between prison admission, re-entry and how the epidemic is playing out in certain communities,” says Gardner, who co-produced a study that mapped out how New York City neighborhoods with the highest incarceration rates also have the largest concentration of women infected with HIV/AIDS.

The exact number of people living with HIV/AIDS inside New York state prisons and jails isn’t known. The New York State Department of Correctional Services estimates that out of nearly 60,000 people presently incarcerated, some 3,500 are HIV-positive – including 681 infected with AIDS. HIV testing is conducted for inmates who provide written consent. A 2007 blood sample survey of about 4,000 prison inmates by the state Department of Health showed that 3 percent of men and 10.7 percent of women who entered New York facilities were HIV-positive – which mirrored the findings of a 2005 survey.

This May, the state Department of Health released its report on the total number of people living with HIV/AIDS across New York – including correctional facilities. Yet a Department of Correctional Services spokesman explains that those figures include inmates who may have already been released. According to the study, which excludes New York City facilities, there were a little over 6,600 HIV/AIDS cases as of 2007 with more than 5,500 men infected and 1,100 women.

For its part, Correctional Services maintains that people leaving New York prisons are given condoms and HIV information packets. Yet some advocates and criminal justice observers like the Minority AIDS Council in Washington, D.C. have long called for distributing condoms behind bars – an idea opposed by state prison officials. Elsewhere, Vermont and Mississippi have long distributed condoms to inmates. And condoms have been available to inmates at Rikers Island for years.

“You’re not supposed to give out condoms because it’s condoning illicit behavior,” says Gardner. “It’s just like having clean needles. People are also injecting themselves and making tattoos in prison too, but we just haven’t seen much of an acknowledgment about what’s really happening inside prisons throughout the state.”

As a result, advocates have backed legislation, which recently passed both the state Assembly and Senate, enabling the state Department of Health to oversee health facilities run by Correctional Services. “There needs to be a review of prison and jail programs for the prevention and treatment of diseases like HIV/AIDS and Hepatitis C,” says Manhattan Assemblyman Richard Gottfried, who sponsored the bill. “Any health facility that is not accountable to independent and professional oversight will inevitably decay.” Officials with Correctional Services and the Department of Health declined to comment on the bill prior to Gov. Paterson’s decision later this month.

And while advocates like Gardner fear that fiscal realities will derail the legislation, they caution that overlooking the impact of correctional facilities will also prove costly. “A lot of jurisdictions acknowledge that prison health and community health are inextricably linked, but New York doesn’t,” she argues. “Until we recognize that, we will continue to see that the HIV infection rate endemic in some communities and a non-issue in others.”

– Curtis Stephen

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