NEW YORK (WOMENSENEWS)--Advocates for women of color with HIV/AIDS say women and their children are woefully underserved. They are urging the city devote $7 million in new government funding to minority-run organizations offering prevention and support services.
They also object to a proposed $20 million city budget cut for health services spending next year, which would eliminate the $2 million budget set aside for HIV/AIDS prevention services. The city council will hold hearings on the health services budget in mid-May.
These budget numbers were provided by advocates for infected people of color, as well as Latino and African American city council members, during a Wednesday conference on AIDS organized by Hilda Melore, coordinator of Voices of Women of Color Against HIV/AIDS.
Nationwide, women of color account for 80 percent of new AIDS cases and 76 percent of new HIV cases.
"How can you cut those services when there's a $2.3 billion surplus?" asked Democratic City Councilman Victor Robles of Brooklyn, chair of the council's health committee.
Robles and Democratic council members Margarita Lopez of lower Manhattan and Bill Perkins of Harlem said during the New York City Communities of Color HIV/AIDS Summit that they would make the $7 million initiative their priority and would urge their 48 fellow council members to support their demand for additional funding.
People of Color Are 76 Percent of Adults Living With AIDS in New York
Seventy-six percent of adults living with AIDS in New York are people of color, and 89 percent of female adults living with the disease are women of color, according to a report from Housing Works, advocates for more housing for homeless people living with HIV and AIDS. Minority-run organizations, however, receive only 34.7 percent of $63 million in state funding for prevention and treatment, the agency said.
This means that 85,533 of the 113,073 adults infected with HIV/AIDS in New York are people of color, and 26,362 of the adults with HIV/AIDS are women and 23,410 are women of color. Nationally, people of color represent 57 percent of those with the virus and women are 23 percent of HIV/AIDS patients.
"The money has to follow the infection," Lopez said and exhorted the audience to "make it be a scandal."
Women were not often affected with the disease, when it started 20 years ago, Lopez said in an interview. Given that the number of gay white men infected has been decreasing, she called the sharp increase in the number of women infected "unacceptable."
Lopez criticized the administration of Mayor Rudolph Giuliani, while Councilman Robles and AIDS activists emphasized the cultural obstacles to better prevention and treatment.
Because many homosexual Latino and black men feel ostracized by their communities and because drug abuse is condemned in their cultures, it is harder for HIV-infected people of color to talk about it or to seek help, said Dennis de Leon, president of the Latino Commission on AIDS.
Women Infected by Male Sex Partners, but Stigmatized as Drug Users
In between the conference's sessions, the participants continued to discuss the situation for women with AIDS.
Women living with HIV/AIDS are subjected to similar prejudice, said Vilma Santiago. She is a volunteer at Iris House, a community service organization run by women for women of color with HIV/AIDS and their families. Though many women at Iris House contracted HIV/AIDS through their sexual partners, most people still categorize and stigmatize them as drug users, Santiago said.
"When I talk to people," she said, "I tell them, 'I'm going to give you the choice: Either I got it through drugs or through heterosexual transmission. You choose which one it was.'"
Because initially women were not the population most at risk, virtually no thought or effort has gone into addressing their specific needs, participants said.
"It's more and more women and children who are being infected, and we have to do something about it," added Democratic Councilwoman Ronnie E. Eldridge of Manhattan, chair of the city council's committee on women's issues.
"From a women's point of view, we always have difficulty to place issues affecting women into the arena of general policy," Eldridge said. "That has to be changed. It's not only unjust, it's illogical."
"We have to come together and make sure they receive the services they're entitled to," Robles added.
Women Take Care of Everybody Before They Care for Themselves
The biggest problem for women with HIV/AIDS is access to care, said summit organizer Melore, because women not only have to care for themselves but also for their families.
"We all know that women take care of everybody before they take care of themselves," she said.
A related problem is the shortage of day care services. Participant Nilda Rodriguez has five children and has been HIV positive for 10 years. She was infected by her now-deceased husband.
Rodriguez, an Iris House volunteer, said she would like to take the so-called AIDS cocktail that is known to delay the onset of symptoms. However, the medical regimen requires ingesting doses of several different drugs on different timetables, and she said she is unable to meet the strict requirements given the demands of raising five children alone. Besides having HIV, she also is afflicted with hepatitis B and C.
"Stress is number-one" complication, Rodriguez said. "I can't take my medication. I know I would forget every single one of them."
Women Lack Child Care, Housing, Support for Selves, Children
Women also lack specific support programs for themselves and for their children, who sometimes become angry and depressed and "act out" when they learn their mother is infected with a deadly virus. Since no programs are designed to help families remain intact and fight the disease together, the only solution for single mothers facing this problem now is to place their children in foster care, said Iris House volunteers Rodriguez and Santiago.
Women over 50 living with HIV/AIDS face additional difficulties because of their isolation. Santiago and Rodriguez, both over 50, said that AIDS/HIV support groups usually attract younger women, whom they can advise.
"But who teaches us?" asked Rodriguez.
They are looking ahead to a bleak future, and their paramount concern is the lack of structure and services for their dependent survivors. Permanency planning, as Melore calls it, is a pressing need for women with HIV/AIDS.
"They need assistance with putting together a world, assigning someone to be the custodian of their children if anything happens to them," said Melore.
Rodriguez said that if she were to die soon, no government agency would be available to keep her children living together under one roof. In a city like New York, lack of planning and services is especially serious when it comes to housing. Many single mothers living with HIV/AIDS live in shelters, but when they die, their children no longer have a place to stay.
If single mothers were offered independent housing, instead of shelters, Rodriguez said, then the children could keep the lease after their mother's death--if they had additional support systems in place.
"We're at the bottom of the ladder," Rodriguez concluded. "We have to make demands."
Laurence Pantin is a journalist based in New York. She recently received an award from the Foreign Press Association to cover labor issues in Mexico and other international topics.
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Latino Commission on AIDS:
New York City Council Members Margarita Lopez, Victor Robles, Bill Perkins and Ronnie Eldridge: