by Molly M. Ginty
A73-year-old grandmother in Kansas City, Kansas.
A 16-year-old Bronx girl living in a foster home.
A mother in Virginia, infected at 19 by a rapist and fighting years later to protect her daughter from her devastating disease.
Now that the human immunodeficiency virus (HIV) that leads to acquired immunodeficiency syndrome disease (AIDS) has crossed the gender divide, these are the faces of AIDS in America.
HIV/AIDS is spreading rapid-fire among women—especially senior women and those of color. Striking a new female every 20 seconds, it’s the leading cause of death among black women ages 25 to 34 and plagues a total 260,000 women in the United States.
Why is this incurable disease, once the scourge of gay men in major cities, killing women in small towns and suburbia? Since 1988, why has HIV quadrupled among females, who are the fastest-growing group of new patients and account for a quarter of new infections?
“This pandemic is about biological differences—and about political inequities,” says Dázon Dixon Diallo, president of SisterLove, an Atlanta-based health advocacy organization for women at risk of HIV infection. “Women’s social status is not a backdrop for HIV’s spread, but is instead its undergirding cause.”
The Easiest Targets
From the moment a woman first encounters HIV, the odds are stacked against her.
SAVING THE NEXT GENERATION:
Q & A WITH NANCY GENOVA
Without treatment, a pregnant HIV-positive
woman has a 30 percent risk of giving the
virus to her baby. As director of the Bronx
Community Action for Prenatal Care Initiative
(Bronx CAPC), Nancy Genova is battling to
improve those odds.
How has treatment for HIV-positive mothers
and their children changed over the decades?
At the beginning of this epidemic, there was no
specialized care for women in general or mothers
in particular. But today, most pregnant women in
the U.S. are screened for HIV/AIDS during prenatal
doctors’ visits. To prevent transmission during
pregnancy and delivery, mothers are getting
antiretroviral drugs and C-sections. To prevent
infection during breastfeeding, they’re getting the
drug nevirapine. These advances have reduced
mother-to-newborn transmissions from 25 percent
in the early 1990s to less 2 percent today.
What work still needs to be done?
We need to do a better job of reaching women at
highest risk: sex workers, recent immigrants, poor
women, those living with domestic violence, and
girls who’ve dropped out of school.
How does your program achieve this?
New York City has the largest number of HIV/AIDS
patients, and the Bronx has the highest number of
HIV-positive women giving birth. We serve at-risk
women by helping them where they need it most.
We place abused women in domestic violence
shelters so they have the security and stability
they need to stick with HIV treatment regimens
that require 95 percent adherence to work.
We give low-income women free baby clothes
and free subway fare so they can afford to take
public transportation to the doctor’s office.
Would you describe some of your clients?
We work with women in the most challenging
circumstances. One was a 36-year-old
schizophrenic and crack addict who was eight
months pregnant when we found her. Another
was a developmentally-disabled 18-year-old who
had bounced in and out of foster care and who
was homeless and sleeping in hospitals to stay safe
and warm. We got treatment for both of these
women in their third trimester of pregnancy. Both
were blessed to have children who were HIV
negative, and both are now doing well in
government-sponsored treatment and
What aspects of life for HIV-positive mothers
would you most like to change?
First, I would erase the stigma these mothers face.
Women should be able to discuss HIV just as openly
as breast cancer or heart disease. Second, I would
wipe away the judgment that too many doctors
show toward at-risk women, who may have no
control over whether they’re late for appointments
because they have to keep simultaneously-scheduled
social service meetings or lose welfare benefits.
Third, I would correct social imbalances such as
the fact that 80 percent of hospital boards are
comprised of men.
Above all, I would make sure no woman falls through
the cracks. Last year, a 16-year-old girl in our program
learned she was infected but needed her guardian’s
consent to get treatment. She was afraid to disclose
her status to her foster mother, and it took us eight
months to convince her to do so. During that time,
she went from having HIV to developing full-blown AIDS.
HIV is transmitted from men to women much more readily than it is from women to men, making females especially vulnerable during the heterosexual contact that accounts for 80 percent of their infections. An HIV-infected woman with half the amount of the virus circulating in her bloodstream as an infected man will progress to a diagnosis of AIDS in about the same time, reports the Rockville, Md.-based National Institute on Drug Abuse.
In both genders, HIV hijacks the immune system, swelling the lymph nodes, devouring fat stores and causing joint pain, fatigue and nausea. In women, however, it triggers more secondary complications such as pneumonia, rashes, liver problems, yeast infections, and susceptibility to other sexually-transmitted infections (STIs).
Like these physiological differences, women’s socioeconomic status boosts their risk. A woman earns 76 cents for every dollar a man earns, reports the Washington-based Institute for Women’s Policy Research. Women are 50 percent more likely than men to forgo medical screenings because they can’t afford them, notes the Kaiser Family Foundation in Menlo Park, California.
These inequities are especially pressing when it comes to senior women and women of color. While 7 percent of all women live in poverty, 13 percent of women over age 65, 25 percent of African-American women and 20 percent Latinas do so, reports the U.S. Census.
With race, age, money and health care intertwined as they are in the U.S., Hispanic women are five times more likely to contract it than white women; African American women are 23 times more likely to do so; and HIV has spiked 50 percent among senior women in the last decade
Making Love in the Dark
Like biology and money, mass ignorance of HIV’s threat puts women in its direct line of fire.
Less than a third of American women discuss HIV with their spouse or partner, according to the New York-based American Foundation for AIDS Research.
Sixty-five percent of men who have sex with men also have sex with women, reports the Atlanta-based Centers for Disease Control and Prevention. “Many women believe they’re in monogamous relationships with such men—or with men who are also having sex with other women,” says Dixon Diallo of SisterLove. “They don’t take steps to protect themselves because they don’t even know they’re at high risk.”
Sometimes women try to protect themselves, but are ignorant of how to do so correctly. “I know an HIV patient who thought she was being careful but contracted the disease using a lambskin condom,” says Terri Wilder, a columnist for the HIV/AIDS web resource TheBody.com. “No one ever told her these condoms are porous and don’t protect against this virus.”
During sex, only using latex condoms, dental dams, and taking care not to exchange blood or semen can prevent HIV transmission: facts not taught in abstinence-only sex ed programs prevailing in U.S. schools. Thanks to President Bush’s tripling of abstinence-only sex ed funding, students absorb HIV teachings that a Congressional report found “false or misleading” 85 percent of the time.
Like the failure of sex education, the shortcomings of the U.S. health care system also keep women in the dark. Doctors are not required to take special training in HIV/AIDS medicine, and HIV screening is not a routine part of women’s health care—even though amfAR surveys show 67 percent of women mistakenly assume they’re tested when they are screened for other STIs.
“My doctor never thought to discuss HIV with me because I didn’t fit the stereotype of someone at risk,” says 73-year-old Jane Fowler, who was infected on a date at age 50 and now runs the Kansas City-based HIV Wisdom for Older Women. “I didn’t use condoms because I was post-menopausal and from a generation that thought condoms were just for birth control. If I hadn’t taken a blood test required to get a new health insurance policy, I would never have known I was positive.”
Since so few women and so few doctors are effectively guarding against HIV/AIDs, an estimated 25 percent of HIV-positive American women don’t even realize they’re infected
A Blind Eye
Just as mass ignorance has fueled HIV infection among women, authorities’ indifference is allowing its continued spread.
Studies crushed hopes that diaphragms and the spermicide nonoxynol-9 could protect women against HIV/AIDS and a vaccine lies more than ten years in the future. Women’s health advocates are now battling to develop microbicides: colorless topical products that prevent HIV from infecting a woman’s cells and give her more control over prevention than condoms do.
To date, the Bethesda-based National Institutes of Heath has devoted only 2 percent of its AIDS budget to microbicide research.
“This funding amounts to little more than peanuts,” says Anna Forbes, deputy director of the Washington-based Global Campaign for Microbicides. “Authorities don’t perceive these products as big money-makers. And they don’t perceive them as important. They don’t realize that if you’re a victim of domestic violence, which half of HIV positive women are, asking your partner to use a condom can get you a fist in your face.”
Women account for 27 percent of HIV infections, but they account for only 17 percent of HIV/AIDS study subjects. Although women’s health needs are just as pressing as those of men, research shows female patients are less likely than their male counterparts to receive the most effective drugs: protease inhibitors and newer medications called antiretroviral drugs. A UCLA study conducted in 2007 found women were less likely to receive life-saving medications called “highly active antiretroviral therapy” (HAART). In the concluding words of their study, researchers underscored the need for “policies that reduce the income and education inequalities on health care and that narrow gender disparities.”
A Call for Change
While they can feel frustrated by the challenges facing HIV-positive women, health advocates are taking heart in some victories achieved so far. Thanks to new “rapid” blood and saliva tests, diagnosis that once took two weeks now takes 20 minutes. And thanks to new drugs, HIV is no longer the death sentence it was when the first American woman was diagnosed with it in 1982.
Last year, Congress approved $600 million in HIV/AIDS funding (via the Ryan White Comprehensive AIDS Resources Emergency Act) and ramped up support for the largest women’s HIV/AIDS research project to date (the Women’s Interagency HIV Study).
Even so, the strongest push to help HIV-positive women may be at the grassroots level, where many women leading this charge are HIV-positive themselves. From her home in Charlottesville and office in Atlanta, Dawn Averitt Bridge (the mother infected by a rapist at age 19) oversees an educational resource call the Well Project. In Miami, Sheri Kaplan counsels other young women at The Center for Positive Connections.
And in Baltimore, Marilyn Burnett is involved in a flurry of initiatives. “Women with HIV are giving talks at community centers and churches and sending vans into the streets to do on-site AIDS testing,” says Burnett. “We’re running discussion groups, creating advocacy programs, and organizing conferences.”
Activists are fighting to offer infected women better treatment—and to free them from stigma. Surveys by amfAR show HIV-positive women face more prejudice than male patients, often concealing their diagnoses so others won’t avoid them or judge them as promiscuous or immoral. One recent amfAR report found that 20 percent of Americans would not be comfortable having an HIV-positive woman as a close friend, 59 percent would not be comfortable having her as a childcare provider, and 14 percent would not support her decision to have children of her own.
Health advocates are lobbying Congress to pass the Microbicide Development Act (which would boost funding and preserve a microbicide branch at the National Institutes of Health) and to include funding for HIV initiatives in the next revision of the Violence Against Women Act, which supports programs for domestic violence survivors.
Activists say these and other initiatives will succeed best on one condition: if we right the balance of power so women have political clout, economic muscle and better medical care.
“When it comes to HIV, the real crux of women’s risk is not the virus itself,” says Forbes. “The real problem is the gender, social and economic inequality that we must all fight to overcome.”
|From Molly M. Ginty:|
Covering HIV/AIDs among women is a professional challenge because relatively limited research and relatively little information exist on women’s unique needs. It’s also a personal challenge because it’s emotionally wrenching to step back and realize that there’s no reason women should be suffering and dying due to this devastating disease. Could we have prevented a quarter million HIV/AIDS infections among American women? Yes. Will authorities shrug off their indifference and move to prevent millions more? As a reporter, a woman and a social activist, I can only hope that they finally do.
Molly M. Ginty is a freelance journalist in New York City who has written for Ms., Women’s eNews and PlannedParenthood.org and is working on a book about environmental health.