THIS IS THE FIFTH ARTICLE IN A SIX-PART SERIES
By the time she found out she was HIV-positive, Millie Ross was already used to hardship. She had gotten pregnant at 13, married at 14, dropped out of high school, been battered and cheated on. Even so, when she got her test results in 1988, pregnant with her third child at 24, HIV seemed like the end of the road. “It was just crash and burn,” remembers Ross, shaking her head. She hadn’t understood how to protect herself against the virus, which she—and most everyone else back then—thought of as a gay men’s problem. And even if she had known what to do, doing it was another matter. “There was no way I was going to be able to ask anyone to wear a condom,” she remembers.
Twelve years later, much has changed. A health educator with the Brooklyn-based AIDS group Life Force, Ross now talks about condoms and the intricacies of sex seemingly without the slightest hint of embarrassment. (“Condoms come in colors, flavors, sizes, they come in magnum—14 inches if that’s what you’re dealing with,” she booms to one group of women.) The son who had been growing in her belly when she got her diagnosis is 11, old enough to run down to the pharmacy and pick up the prescriptions that have kept Ross fairly healthy. He is HIV-negative, a fact Ross considers “a blessing.”
When she gave birth, no treatments were available to reduce the roughly 25 percent risk she would transmit the virus to her son. These days, drugs, sometimes along with cesarean deliveries, can lower that risk to below 2 percent. And cocktails of the new antiviral medications can all but eliminate the virus, as they have in Ross’s own bloodstream.
But even as scientists make huge strides forward, some things have not changed—not enough to stem the spread of HIV among women, anyway. While safe sex has been famously successful in fighting AIDS in some gay, male communities, the age-old power imbalance between the genders has stubbornly stood in the way of efforts to protect women. Still, women don’t have a widely available prevention method they can control themselves, and many feel unable to request—let alone demand—condoms for fear of violence or being abandoned.
The most recent data reflect this persistent power imbalance: Women represent a growing percentage of new HIV infections, now 30 percent nationwide. Black women, roughly 15 percent of the population in New York City, now account for 19 percent of all new AIDS cases reported in the city, up from 5 percent in 1983, according to the city Department of Health. Even though sex has recently outpaced drug use as the primary mode of infection for black women in New York City (when you include cases of probable heterosexual transmission along with proven ones), fears and behavior tend to be caught up in dated ideas about danger.
“We’re still trying to pigeonhole who’s at risk, even though the numbers clearly show we’re all at risk,” says Debra Fraser-Howze, president/CEO of the National Black Leadership Commission on AIDS, which supports African American leaders in the fight against AIDS. That means that women might consider themselves safe if they don’t inject drugs, even though they may still be exposed to the virus through sex.
Ross tackles such denial head-on when talking to patients in the waiting room of a Brooklyn OB-GYN clinic. “You don’t have a beeper on your man’s penis,” she warns, as some women shift in their seats and shoot wide-eyed looks at each other. “When he goes to the back door to get a delivery, you don’t know if the UPS girl has a big butt and a smile or just a package.”
If all women would prefer to deny the possibility of their risk (and the UPS woman), some women are even less likely to consider themselves vulnerable. Among Haitian women, for instance, discussion of AIDS is still very much taboo. “They try to avoid the topic altogether,” says Lorna Fairweather, director of social services for the Caribbean Women’s Health Association. “Those groups that make their voices heard will be visible, and money flows into those communities,” says Fairweather. In contrast, the relative silence, she says, means both less money and lower awareness.
Older black women also seem to fly beneath the radar of public consciousness. For the first time, more than 30 of the 230 women with AIDS who receive supportive services—from housing assistance to case management—at Iris House in Harlem are over 55; some are well into their seventies, according to Marie Saint Cyr, executive director of the agency. Yet, says Saint Cyr, “prevention hasn’t reached older women because we don’t look at them as sexually active individuals.”
The effects of illness tend to ripple outward for these older women, who, like many women, spend much of their lives tending others. “Grandmothers have often stepped in to take care of their grandchildren when their parents have become sick or died,” says Saint Cyr. “If they are getting infected, where do we go from here?”
Iris House also assists women with custody planning, arranging for their children to stay with friends or other relatives if their mothers or sisters are unable to help (as is often the case). Though women may be even less inclined to think about what their children will do without them as their medical outlook improves, Gloria Morales, who handles custody planning for Iris House, says women still need to face the likelihood of ill health and even death. “If they don’t plan, the child may end up in foster care or with someone who’s not responsible,” she says. “We’ve had it where they’re in here on Friday and Monday we get the call that they’ve died.”
Indeed, family responsibilities may in part explain why the new medications have yet to bring about as significant a drop in AIDS deaths in black women as they have in others. While the overall death rate for people with AIDS declined by 91 percent between 1995 and 1999, after the introduction of new drugs, the decrease among black women was about 88 percent.
So far, there is no medical explanation for the difference, only the fact that women’s hectic caretaking schedules can make taking medications as prescribed extremely difficult. There’s some evidence that women who had recently given birth became less consistent about taking their own medications. And the problem of getting child care or a ride to the pharmacy can also stand in the way of compliance. Such complications of being female may also contribute to women’s underrepresentation in clinical trials of AIDS drugs.
Another part of the explanation is the heavy burden many black women face. “If you have to worry about whether you’re going to be able to pay your rent or how you’re going to feed your kids, you’re not thinking about getting tested for HIV,” says Gwen Carter, Life Force’s executive director. Consequently, participating in a drug trial becomes even less likely.
Millie Ross tries to encourage women to clear these hurdles. “Become empowered, ladies, and get tested,” she says to the group of women in the waiting room. “Today you guys have lots and lots and lots of options.”
AIDS AND BLACK NEW YORKERS, A SIX-PART SERIES:
Part I: Emergency Call by Kai Wright
How AIDS Is Hurting Black Communities
Part II: Black, Gay, At-Risk by Kai Wright
Homophobia, Racism, and Rejection Fuel Rising Infections
Part III: The Tuskegee Effect by Kemba Johnson
For Blacks, a 28-Year-Old Study Is One of Many Barriers to HIV Prevention
Part IV: Double Jeopardy by Kai Wright
In NY State Blacks Rank Highest Among HIV-Positive Inmates
Part V: Black Women and HIV by Sharon Lerner
Rising Infection Rate Reflects an Age-Old Gender Imbalance
Part VI: The Money Trail by Kemba Johnson
Dollars Don’t Always Follow New Trends in AIDS Cases