Activists Put Focus on Women with HIV, AIDS

(WOMENSENEWS)–In 1988, when Dawn Averitt Bridge was 19, a stranger stole into her room, raped her and infected her with the HIV virus. Told she had only two years to live, Averitt Bridge worked to help other HIV-positive women by serving as a counselor at an AIDS clinic in Atlanta.

"Back then, women were invisible in this epidemic," says Averitt Bridge, who developed full-blown AIDS in 1994 but has remained relatively healthy thanks to new drugs called protease inhibitors. "Infected women would come to me and ask, ‘Where can I find information?’ I kept having to tell them, ‘There’s nothing out there for you.’"

Two decades after the first American woman was diagnosed with human immunodeficiency virus in July 1982, HIV-positive women now have their own resources, including Charlottesville, Va.-based The Well Project and the San Francisco-based Women’s Information Service and Exchange–both advocacy organizations that Averitt Bridge founded.

But health experts warn that HIV, the virus that leads to acquired immunodeficiency syndrome, is hitting record levels among U.S women and that the medical industry is failing to meet women’s needs for prevention, screening, diagnosis and treatment.

"Because HIV started as a disease primarily of gay men and then injecting drug users, women have not been are the forefront–until now," says Jane Fowler, a grandmother who contracted HIV in 1985 and now directs the Kansas City-based HIV Wisdom for Older Women.

Health advocates are working to address this with a flurry of initiatives, including the United Nations’ Global Coalition on Women and AIDS and the third annual meeting of the International AIDS Society, which ended Wednesday, July 27 in Rio de Janeiro. The conference focused on microbicides (topical products that prevent HIV from infecting women’s cells) and domestic violence (which affects half of HIV-positive women). But experts say their battle to improve treatment and care for women with HIV and AIDS remains an uphill one.

Infections Up Among Women

Since 1988, the Atlanta-based Centers for Disease Control and Prevention reports, women have represented the fastest-growing population of new HIV and AIDS diagnoses in the U.S. In that time, women have gone from representing 7 percent to 26 percent of total AIDS cases. Today, HIV and AIDS is the fifth leading cause of death among American women ages 25 to 44.

During sex, HIV is transmitted from men to women much more readily than it is from women to men. Women tend to be diagnosed later and, after infection, they suffer from more secondary complications: skin rashes, liver problems, yeast infections, bacterial pneumonia and a higher susceptibility to sexually-transmitted infections.

Health advocates say social factors only compound these problems. "Women with HIV are sometimes so busy caring for others that they don’t take care of themselves," says Bonnie Goldman, editorial director for the HIV and AIDS Web site TheBody.com. "And many women keep their infections secret because AIDS is still unfairly stigmatized and they don’t want their children to be the targets of prejudice."

HIV hits older women–and women of color–particularly hard. The incidence of AIDS among senior women is up 50 percent since 1995. Hispanic women are four times more likely to contract HIV than whites; while African American women are 18 times more likely to do so.

Health experts say these discrepancies are linked to inadequate health education and care for elderly and minority women. According to one 1997 Los Angeles study, HIV-positive women in the public health care system–many of them low-income women of color–are eight times less likely to get protease inhibitors than women at private clinics.

The plight of such women is illustrated by Beatriz Diaz, a 50-year-old single mother of four in Fresno, Calif. Diagnosed with HIV in 1992, Diaz leaped at the chance to join clinical trials of a new injectible drug called Fuzeon (which is taken along with protease inhibitors) when she became resistant to all her other medications in 1998.

"In order to join the trials, I had to make repeated six-hour round trips to San Francisco," says Diaz. "Because I spent so much money on gas, I couldn’t afford meals on some trips. Because travel expenses cut into my savings, my truck was repossessed and I couldn’t make mortgage payments. The new drugs have kept me healthy since I started taking them seven years ago, but it took me two years to recover from this financial setback."

Health System Falls Short

Health advocates say that if the social problems facing HIV-positive women are not enough, the failings of the medical industry only add to the challenges they face.

Physicians are not required to take special training in HIV and AIDS medicine and HIV screening is not part of routine women’s health care. Though women represent nearly a third of new HIV infections, they account for only one-sixth of research subjects in HIV and AIDS studies.

"The most promising hope for reducing women’s HIV infections are
microbicides–colorless, odorless agents that women can apply before sex to prevent transmission," says Terri L. Wilder of the clinical advisory board for Atlanta’s Emory University Hope Clinic. "Microbicides come in 60 different formulations and give women more control over their bodies than condoms do. But the National Institutes of Heath has devoted only 2 percent of its AIDS budget to microbicide research and these products likely won’t be on the market for ten years."

Though government-funded health programs in all 50 states cover the cost of HIV drugs for low-income patients, recent cutbacks have put some drugs in short supply. "We have women with HIV waiting for life-sustaining medications while the virus is reproducing in their bodies and may be permanently damaging their immune systems," says Wilder.

Activists Fill in the Gaps

Across the nation, female activists–many of them infected with HIV–are stepping up where the system has failed. In Baltimore, Marilyn Burnett speaks to other African American women at black churches. In Miami, Sheri Kaplan counsels other young women at The Center for Positive Connections. From her home based in Kansas, Fowler jets across the country giving seminars at senior centers. And in Virginia, Dawn Averitt Bridge is developing plans to open an HIV think tank and five HIV care centers for women across the nation.

These activists take heart in recent triumphs, like the successful reduction of HIV transmissions from infected mothers to newborn babies (down from a high of 25 percent in the early 1990s to a low of 1 percent today thanks to new medications). They are lobbying Congress to pass the Microbicide Development Act (which would establish a National Institutes of Health branch dedicated to microbicide research) and the Ryan White Comprehensive AIDS Resources Emergency Act (reauthorizing $600 million per year for HIV and AIDS treatment).

And they eagerly await the results of ongoing research like the NIH-funded Women’s Interagency HIV Study, which was launched in 1993 and is the largest HIV study on women to date. Enrolling 2,000 subjects, this study is funded through 2007 and may continue even longer if government support continues to hold out. Last month, the Centers for Disease Control and Prevention reported that one million Americans are living with HIV–a number that is bound to grow as new infections continue mounting and new treatments continue prolonging patient’s lives. In response, the National Institutes of Health, which spent $2.85 billion on HIV and AIDS in 2004, projects it will spend $2.92 billion on research, prevention and treatment in 2005.

"We need to stop giving lip service to this issue and work to prevent the spread of HIV and AIDS," says Bridge, "If you are a woman who has had sex in the last 20 years, that is enough to put you at risk."