Grim Outlook: Women & AIDS

Community forum discusses impact on African Americans, youth

Sometime in the future, World AIDS Day may be an occasion for remembrance and the celebration of the end of a pandemic, but that hope seemed a distant prospect for the AIDS activists and young HIV-positive woman at a forum sponsored by The New York Times on Tuesday night, “Women, Girls, HIV and AIDS.”

“Women are half of all people living with AIDS in the world and 30 percent of those with AIDS in the U.S.,” said Ana Oliveira, director of Gay Men’s Health Crisis, in introducing the panel. “Black women bear a disproportionate burden. They are 12 percent of the of women in the U.S. and 64 percent of women with HIV/AIDS.”

Linda Villarosa, executive editor of Essence magazine and a science editor at the New York Times, moderated the discussion, noting her first major article for Essence was about how AIDS was about to hit black women in 1984 and that today, she’s writing about the same problem.

While Mary Fisher, a woman with AIDS who brought her message to the 1992 Republican convention, said her condition has given her the “blessings” of the people she has met and worked with, she later lamented, “I see this disease going underground. I don’t see people talking about it.” She attributed much of the invisibility to the advances in drug treatments that have given people with AIDS the opportunity to lead relatively healthy, normal lives with less compunction to come out.

Fisher cautioned, “I’m deeply grateful for the drugs, but I don’t know how long my body will allow me to take them.”

Marie St. Cyr, the director of Harlem’s Iris House, a center for women with HIV/AIDS, complained about the “AIDS fatigue” that has hit funders. “They have shifting priorities,” she said, making it extremely difficult to fund “ancillary” services such as simply feeding and clothing the women, things she believes are central to helping them take control of their lives and deal with their disease.

An anonymous 20-year-old woman with HIV, “Maria T.,” sees the support system that she had as a person with HIV a few years ago disappearing as services are cut. “Now I don’t have a social worker,” she said.

Marjorie Hill, who just left the New York City health department’s Bureau of HIV/AIDS to head the Women’s Initiative at GMHC, talked about the “delicate balance” of “having to focus on the global pandemic and not forgetting about the fight locally.” She echoed Fisher’s concern, saying, “Many people who can get medication have dropped out of advocacy.” The ACT UP movement was driven in large part by people fighting for their very lives, demanding treatment, services, and drug development, but now meetings in the few remaining chapters only attract a handful of dedicated people.

The major conflict resulted from a question from Ann Northrop, a veteran AIDS activist and educator, about how the Bloomberg administration is addressing the crisis, particularly given its continued policy of banning condom lessons in public schools. Hill defended her record at the health department, citing the expansion of needle-exchange programs, condom distribution, and rapid testing for HIV. “This administration has really tried to work hard to make HIV a priority,” she said.

“I agree it is a priority,” said St. Cyr, “but when I see the abstinence message and see schools not adhering to the AIDS curriculum and that there are not enough teachers to teach it, it is not good enough, I hate to tell you.”

Hill said that at GMHC, they are looking to develop a “citywide social marketing campaign” on HIV prevention, and that “if we can’t do it with CDC dollars, we need to find sources that will fund it.”

St. Cyr talked about the complex “survival issues” that confront women at risk for HIV, including being “threatened if you bring a condom in the household,” returning the discussion to the biggest challenge many women face in the fight against AIDS is men. “We give women condoms, but men have the perfect apparatus to wear a condom,” she said.

Not all was gloom. Maria T. works as a peer educator and said that to reach people her age, “what works is kids teaching them—they need to identify with a person.”

Hill said women and men “need to be talking to each other about their concerns,” including the inequalities in relationships that drive HIV infections, but that “women need the space to have their own frank discussions.” She is bracing for new federal guidelines for HIV education “more stringent” than the current ones that already have many AIDS organizations editing themselves. She cited Allan Rosenfield, dean of Columbia’s School of Public Health as saying, “Abstinence is okay—in moderation.”

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