Start AIDS Charity at Home, Groups Say
October 19, 2004
CITYWIDE, New York Times
By DAVID GONZALEZ
If Marie Saint Cyr presided over a business, these would be wonderful times. Three years since moving to a newly renovated building, she is running out of office space. More and more people are seeking her services. They come from all over the city, too.
Boom times indeed, but hardly wonderful. Ms. Saint Cyr runs Iris House, a one-stop support center in Harlem for women with H.I.V. and AIDS. She describes her 11-year-old organization as the nation's first community-based group to provide these women and their families with everything from counseling and housing to medical help and custody planning.
She sees daily what some politicians apparently cannot: H.I.V. and AIDS have increased to crisis proportions among African-American and Hispanic women. She is frustrated that Senator John Edwards sidestepped the issue during the vice presidential debate. And she is appalled that Vice President Dick Cheney admitted that he had no idea just how catastrophic the disease had been for African-American women, who are dying at a 13 times greater rate than white women.
Advocates like Ms. Saint Cyr said the statistics on the epidemic in urban America are hardly a secret. The United Nations said that North America had the world's largest increase in infections among women between 2001 and 2003. Federal data shows that although African-American and Hispanic women account for less than 25 percent of the country's female population, they account for almost 80 percent of all female AIDS cases reported to date.
One number still staggers Ms. Saint Cyr: 10. That is how many people affiliated with her group who have died from AIDS since the summer.
"How can one agency lose so many people?" she said. "I don't know what else I can do, and then I hear Cheney say he doesn't know the problem? It's devastating."
Granted, the vice president and the senator preferred to talk about what was being done in Africa. Even Harlem's most famous AIDS warrior - former President Bill Clinton - has focused on helping developing countries obtain medications, although his foundation did help with a $50,000 grant to two New York AIDS programs, including one in Harlem.
"President Clinton has been focused on the global H.I.V. problem," Ms. Saint Cyr said. "The reality is right here in Harlem. It's all around him."
But she has no time for anger. Her agency already serves 441 women, with at least one new client arriving each week.
Most likely poor, with children, perhaps recovering from abusing drugs or fleeing abusive partners, the women arrive at the point of desperation.
"You have all this, and then you put H.I.V. on top of it?" Ms. Saint Cyr said. "Most of the women who come here are dealing with issues of immediate survival. Once you deal with those issues, then you can deal with treating the disease."
New and more available medications have lengthened people's lives, but that only increases demand for already overtaxed services. The offices at Iris House attest to the needs. Downstairs, nutritionists counsel clients on healthy eating habits. A recently hired psychologist on the second floor holds regular hours, while support groups meet in a nearby conference room. Upstairs, clients are helped through the medical system while their children participate in after-school activities.
Ms. Saint Cyr is now trying to figure out how to jump-start a prevention program whose federal funds ran out this year. While attempting to spare a future generation from the disease, she has to deal with a federal government that stresses abstinence over condoms." It is everywhere, but it is not really a priority to the government," she said. "We have a president who talks about not leaving any child behind, but how many kids are orphaned by the disease? How many parents lose their lives prematurely?"
Those orphans, advocates said, present an imperiled generation, having grown up in households in crisis. The peril increases when they reach adolescence and become sexually active. Yet advocates say there is little in place to support them.
"For kids who lost a parent on 9/11, a complete support system was in place virtually two days later," said Chris Norwood, executive director of Health People, a community health groups in the Bronx that began dealing with AIDS in the 1980's. "We are now into 20 years of kids losing their parents to AIDS and there is virtually no coherent support system for them in the city or the nation. So they inevitably become the next group with a large level of infection."
As hard as it is for a child to lose his parent, how disturbing is it for parents to lose their children when the virus is the only legacy?
Denise credits prayer for giving her the strength to give up drugs and drink. It also fortified her during the ordeal when a doctor at Harlem Hospital told her in 1989 that not only was she H.I.V. positive, her infant daughter was, too.
"All I thought was, 'We're going to die. Who's going to die first?' " Denise recalled. "The doctor kept saying, 'Do you hear me?' I said nothing."
She went home and sank into denial, she said.
"I'm in this room feeling like I'm the only woman with a child who is H.I.V. positive," she said. "I stayed in my room and cried."
Denise, who told her story on the condition that her surname not be published, eventually learned that there were more than a few women like her when she went to Iris House. She sought out help for her daughter and herself. By late October 1995, however, the disease had ravaged her little girl. Doctors asked her what she would do if they could do nothing more for the child.
"I said I'd take her home," she said. "So, I took her home."
The next few days - her daughter's last - remain as clear to her as anything she has ever experienced since. Tearfully, she described in detail how her little girl looked, acted and sounded.
"To see your child go from playful to destroyed?" she said. "You are angry at the world. You don't know what to do."
One afternoon, Denise lifted her daughter into her arms. She noticed how the child seemed longer.
"I patted her," she said. "I felt her little heart racing, like she was trying to get to the finish line," she said. "I asked her, 'Do you want to go to the hospital?' She groaned. I put her on my lap. She looked at me. She gritted her teeth. 'You mad? You want something?' She shook her head. Then I said, 'What you like?' Her body went limp. She was just staring at me."
Her story is heartbreaking but it is not unique, at least not in Harlem, Bedford-Stuyvesant or the South Bronx. In those communities, people have seen the virus claim more than one life in one family. At a recent conference, advocates recalled hearing about families in which three generations had been infected.
Brenda Lee, an advocate who has AIDS, is the fourth person in her family to contract the virus. A sister and two half brothers have already died. A year shy of 60, she is looking to start her own group to deal the challenges facing older women with the disease. Like many who have lived to her age, she has no time for nonsense. Nor does she have any time for political games.
"I don't know why everybody is freaking out," she said. "Government is not concerned about poverty, low income or, God forbid, H.I.V. They could care less. That's why I'm not marching on Washington with anybody."
Living with H.I.V. makes you focus on yourself, advocates say. There is no doubt that Sylvia Ocasio has mastered that art. Ten years after contracting the virus, she is resolutely focused on living, here and now. At Iris House last week, she showed little patience for those who want to talk about all that's being done to fight AIDS in Asia or Africa.
"My backyard doesn't face the Ivory Coast," she said. "My backyard is in Harlem. I don't give a twiddle about anybody but me and mine. This is my survival kit, not Africa's. They're not doing anything for me."