(WOMENSENEWS)–Heidi Nass was prepared to die.
In 1995, when Nass was diagnosed with the human immunodeficiency virus that leads to acquired immunodeficiency syndrome, most women with HIV-AIDS succumbed to the disease in less than five years.
"Doctors had me taking 13 pills a day, including new drugs called protease inhibitors," says Nass. "My medications gave me constant diarrhea, terrible vomiting and drug-related pancreatitis. Physically miserable and emotionally devastated, I didn’t see how I could go on living like that."
Since protease inhibitors have been improved–and since they’ve proven effective at treating HIV-AIDS–Nass’ prognosis has turned around. Today, she takes three pills daily with no noticeable side effects. She’s healthy in her body, happy in her life and productive in her work as a treatment educator at the HIV Care Program at the University of Wisconsin in Madison.
For 280,000 HIV-positive women in the United States, new treatments have revolutionized care, making it possible to live on for decades and to bear children without transmitting the disease.
That’s the kind of victory that HIV-AIDS activists will be celebrating today at a World AIDS Day meeting at the Women’s Resource Center at the University of Oregon in Eugene; at a benefit featuring jazz singer Loretta Holloway in Greenville, S.C.; at a "Girls Night Out" discussion forum in Augusta, Ga.; and at a Black AIDS Institute gala featuring actress Sheryl Lee Ralph–and honoring five female HIV-AIDS activists–in New York City.
But at the same time, women’s health advocates are marking the 20th annual World AIDS Day with more than a hint of frustration.
"Key scientific questions aren’t even being asked," says Dazon Dixon Diallo, president of SisterLove, an Atlanta-based HIV-AIDS advocacy organization for women. "The disease’s impact on female fertility and reproduction is barely being addressed."
‘Still Falling Through the Cracks’
"HIV-AIDS has become a chronic disease instead of a death sentence," says Dawn Averitt Bridge, founder of the Well Project, an Atlanta-based HIV-AIDS advocacy group for women. "Twenty years after the first World AIDS Day, this disease still remains a crisis because women are still falling through the cracks."
Since 1988, the incidence of HIV-AIDS has quadrupled among women, who are the fastest-growing group of new patients. Women account for a quarter of new infections, and inadequate prevention, screening and treatment are to blame.
"HIV-AIDS has become a woman’s disease before our eyes." says Nass. "And poverty, racism and institutionalized sexism are making certain groups of women especially vulnerable."
Though women account for only about a third of HIV patients in the United States, they are in many ways more endangered by the disease than men. Due to microtears sustained in the vagina during sex, HIV is transmitted from men to women much more readily than it is from women to men, making women especially vulnerable during heterosexual contact that accounts for 80 percent of their infections (with injection drug use accounting for the remaining 20 percent).
In both sexes, HIV compromises the immune system that normally protects the body from disease. But in women, it carries a higher risk of liver problems, pneumonia, rashes, yeast infections and susceptibility to sexually transmitted infections.
Women of Color at Higher Risk
For women of color–at heightened risk due to the fact that they often have lower incomes and inadequate health care–the disease’s spread is of special concern to advocates.
Hispanic women are five times more likely to contract HIV than white women, and African American women are 21 times more likely to do so, according to the Atlanta-based Centers for Disease Control and Prevention.
Among black women, the disease has become so rampant that it is this group’s leading cause of death in the 25-to-34 age bracket.
Health advocates say the rapid-fire spread of HIV-AIDS among women is fueled by the health care system’s failure to address it.
Though women account for 27 percent of HIV infections, they account for just 17 percent of HIV-AIDS research subjects.
In the 1990s, studies showed diaphragms and the spermicide nonoxynol-9 did not protect women against HIV, as previously hoped. Researchers started developing microbicides, topical products that prevent HIV from infecting a woman’s cells and give her more control over prevention than condoms do because she doesn’t have to negotiate their use with a partner.
But under the Bush administration, the Bethesda-based National Institutes of Health devoted only 2 percent of its AIDS budget to microbicide research, and trials of two major microbicides failed.
‘A Decade Away From a Vaccine’
"Testing the other 55 microbicides in development will take several more years, and we’re at least a decade away from the creation of an HIV vaccine that could help women as well as men," says Anna Forbes, deputy director of the Washington-based Global Campaign for Microbicides.
Just as in scientific research, screening measures for women are falling short. HIV tests are not a routine part of women’s health care even though surveys by the Washington-based American Foundation for AIDS Research indicate 67 percent of women assume they’re tested for HIV when they are screened for other sexually transmitted infections. Due to a lack of adequate testing, the foundation reports, 25 percent of HIV-positive U.S. women don’t realize they’re infected.
Gender inequities in treatment persist. Studies published in the New England Journal of Medicine and the Journal of the American Medical Association indicate female HIV-AIDS patients are more likely than male counterparts to live in poverty and face barriers to health care, making them less likely to receive protease inhibitors and antiretroviral drugs, the most effective medications.
Along with these practical problems come the shame and stigma that seem to hit female patients especially hard. Surveys by the American Foundation for AIDS Research show most HIV-positive women feel isolated and conceal their status from co-workers, friends or family members for fear of being judged.
But advocates do see some rays of hope.
New "rapid" screening tests using blood or saliva take 20 minutes, compared to the two weeks required by older tests. Most pregnant women in the United States are now screened for HIV during prenatal exams. Antiretroviral drugs have helped lower mother-to-child HIV transmissions from 25 percent in the early 1990s to less than 2 percent today.
Health advocates commend Congress for its continued funding of the Women’s Interagency HIV Study, which was launched in 1993, enrolls 3,800 women and is co-sponsored by seven health agencies. It is the largest continuing study of its kind in the United States to date.
They also cheer the Food and Drug Administration for putting "fast-track" HIV-AIDS drugs on the market quickly if their makers agree to study the drugs’ effects on women.
As they look ahead, women’s advocates say they would like to revise the federal Violence Against Women Act so it funds more HIV screening and treatment for domestic violence survivors. They also hope to pass the Microbicide Development Act, which was introduced in the Senate in 2007 by President-elect Barack Obama and which would establish a permanent microbicide branch at the National Institute of Health.
Molly M. Ginty is a freelance writer based in New York City.
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