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Dying for resources: AIDS activists in New York City analyzed the racial impact of the epidemic--and won an unprecedented $5 million from the city from communities of color.

HIV/AIDS infections have been on the increase in New York City's communities of color since the start of the syndrome's crisis.

But initially, most of the funding for prevention and for education programs to combat the disease was directed toward organizations that had little contact with people of color.

Jennifer Flynn of the AIDS Housing Network notes that Latino and black men were the first people of color to show high incidences of HIV/AIDS infections. As early as October 1986, the cumulative incidence of AIDS among blacks and Latinos registered at more than three times the incidence rate for whites. In 1988, the Centers for Disease Control had determined that African American men and women each accounted for 70 percent of all AIDS cases in their respective gender groups. By 1999, experts were estimating that 1 out of every 50 African American men and 1 of every 160 African American women was infected with HIV. Yet among whites, 1 in 250 white men and one in 3,000 white women were infected.

As statistic after statistic came out showing that in certain communities the rates of HIV/AIDS was rising, and that in others a large decrease could be seen, the obvious question became why weren't monies being provided to the communities where HIV/AIDS was having the most devastating effect?

In the 1990s, it took protests, political actions, and agit-prop activism to get New York City's government to realize that prohibitive measures were necessary to fight the onslaught of HIV/AIDS. The predominantly white, gay activists of ACT-UP took the fight for the funding of HIV/AIDS-service groups to the streets. By disrupting social gatherings and storming press conferences, ACT-UP made certain legislators see that there were people being affected by and dying from a then virulent, but little understood disease.

Groups serving mostly white, gay groups were the impetus for getting monies to combat HIV/AIDS. And, for years, these groups were granted the major portion of the HIV/AIDS funding.

"It was clear that prevention worked," Jennifer Flynn says, "because there were less white gay men being affected." But because New York City's people of color were not turning to white, gay HIV/AIDS prevention groups when they wanted information about the disease, the epidemic continued to spread.

By January of 2000, the Centers for Disease Control reported that, for the first time since the beginning of the AIDS epidemic, the majority of new HIV/AIDS cases could be found among African American and Latino men. That announcement was enough for the National Black Leadership Commission, the Latino Commission on AIDS, and Gay Men of African Descent to come together and declare their communities in a state of emergency.

At the time, media reports claimed that white gay men had been able to combat HIV transmissions because they'd educated themselves about condom use and had begun using prevention measures. Presumably, cultural homophobia and an attendant lack of HIV prevention and treatment services were leading to an increase in HIV infections in communities of color. Community organizations and cultural networks were encouraged to deal with their homophobic issues, if they wanted to decrease HIV infections.

But one organization, the New York City-based public policy advocacy group, Housing Works, used the Centers for Disease Control data and local New York state statistics to show how a funding disparity toward HIV/AIDS groups was just as much to blame for the high incidence rates in communities of color.

In January 2001, Housing Works published a report stating that persons of color made up over 83 percent of new AIDS cases confirmed in 1999, according to the New York State Department of Health. People of color made up the vast majority of the 56,698 people living with AIDS in New York by mid-2000. Forty-three percent were African American and 32 percent Latino. Whites made up just over 23 percent of the total.

"The magnitude of it didn't hit you until you saw the numbers for people of color against the numbers for whites," notes Suki Ports of the Family Health Project.

In New York City, according to the Housing Works report, people of color make up almost 80 percent of people living with AIDS, but groups of color received only 35 percent of $63 million in AIDS Institute funding.

"From the very beginning of this epidemic, you had people who were at the starting line and simply had to re-coup what they'd lost, and other people who just had to try to catch up," Ports said, comparing the health care situations of whites and people of color at the start of the HIV/AIDS epidemic. 'All of the problems of racism that you had before AIDS were alive and well when AIDS began. There were people of color who didn't have jobs that included health care or didn't have good housing. So New York City had a problem from day one because it had people of color who were primarily relying on a vastly underfunded and overused health care system, and it had its HIV/AIDS prevention funding primarily going to white, gay groups."

Armed with information, local HIV/AIDS service providers began talking about banding together to find a way to turn back the ride. "There was a paradigm shift," explains Housing Works' director, Tern Smith-Caronia. "The powers that be always knew it was better to have infighting--if they threw out five dollars and had people of color fighting for it, that would keep us too busy to even think about demanding more. So organizations of color just decided to stop fighting over the crumbs. We organized to get the whole pie."

Black, Asian, Native American, and Latino organizations that serviced HIV/AIDS populations came together to form the New York City Communities of Color HIV/AIDS Coalition.

The coalition eventually set up an April 2001 summit on HIV/AIDS in New York City's communities of color.

"[The coalition] spearheaded this summit where we were able to pull in the community and get people to come out," explains Hilda Melore, a coordinator with Voices of Women of Color against HIV/AIDS. "But, more importantly, we got something like a third of the city's council members to show up." Council members came to the summit because they were told they'd be given the opportunity to talk before a large, politically active crowd. But as each one made their way to the stage, they had to pass a large easel that listed each of their names and had a yes or no category right next to it. Before they were allowed to speak, they had to tell the summit's captive audience of potential voters whether or not they planned on supporting a proposal to have New York City grant monies to support HIV/AIDS-oriented groups of color.

Council members in attendance were unanimous in promising to support the idea. But just to make certain they wouldn't forget their promises, the coalition members followed up the summit with regular attendance on the steps of city hall where they would catch the politicians as they entered the building and remind them of their pledges to vote for the proposal.

In 2001, the coalition's campaign pushed city council to agree to a $3.2 million tax levy that, combined-with some $1.8 million in state matching funds, led to a $5 million allotment for groups of color working on HIV/AIDS prevention. This was an unprecedented sum, given that the city's entire AIDS budget for all HIV/AIDS service organizations was set at only $1.9 million in years prior.

"There never had been tax levies set aside for AIDS organizations before," Suki Ports says. "New York was the leader in showing how to get monies for people of color because, from the very beginning, we had the highest numbers of people of color with HIV/AIDS."

After the September 2001 attacks, some of that $5 million was re-routed. But in 2002, even with major budget curs, New York City's new mayor and the city council granted nearly the same amount of funding.

"Even with the budget cuts," notes Hilda Melore, "the money for HIV/AIDS was not cut--which says a lot. The money was not cut because of the rates of incidence. The rates are extremely high. We're not just saying, 'We want money!' The rates are there, everything is data driven.

"Everybody wants to help stem the epidemic, and the only way is by funding the community-based organizations that are of color," Melore added. "If rates are high among black men, we have to fund the agencies that serve black men. We all seek services with the communities we feel most comfortable in."

Karen Juanita Carrillo is a writer and photographer in Brooklyn, NY, who contributes to The Amsterdom News.
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Author:Carrillo, Karen Juanita
Publication:Colorlines Magazine
Geographic Code:1U2NY
Date:Mar 22, 2003
Words:1470
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