San Francisco Chronicle - The Voice of the West, 901 Mission Street, San Francisco, CA 94119 - THURSDAY November 29, 1990 Edition: FINAL Section: NEWS Page: A1 Word Count: 1,645
Elaine Herscher, Chronicle Staff Writer

TEXT: As Nancy lay in a hospital bed with her second bout of AIDS-related pneumonia, the main thing on her mind was getting groceries to her children.

Financially ruined, with an infant grandson and two teenage daughters at home alone, she worried constantly about whether the kids locked the door at night or were getting enough to eat. As a result, she spent more energy taking care of her family than fighting for her life.

"I was 100 percent alone," said Nancy, who walked into the hospital by herself and spent two weeks on oxygen, her body ravaged by a 106-degree fever. "I can't afford this disease. I can't afford to be sick."

Nancy, who asked that her last name be withheld to protect her children from discrimination at school, represents the invisible sufferers of the AIDS epidemic. As devastating as the disease is for men, women with the human immunodeficiency virus are often burdened by even worse circumstances.

Women with AIDS are often single mothers with little money, limited access to support and treatment and overwhelming family obligations that rob them of the resources they need to stay alive. They have less access to clinical trials that make potentially life-saving drugs available.

For these reasons, women with AIDS die two to four times faster after diagnosis than do men.

The way AIDS manifests itself in women is markedly different from the disease in men and is often misunderstood, many say.

"The impact on women without question has been overlooked," said Dr. Mervyn Silverman, president of the American Foundation for AIDS Research in New York. "We tend to think of this disease as a disease of gay men and drug users and think of drug users only as men. We ignore the ways the disease is transmitted to women."

The global effect of the disease on women is the theme of the World Health Organization's annual World AIDS Day on Saturday. In cities around the world, the observance will focus on women as the fastest-growing population contracting HIV, constituting a third of the 9 million people believed to be infected.

In 1989, women discovered to have AIDS increased 29 percent in the United States over the previous year, compared with an 18 percent increase for men, according to the national Centers for Disease Control. AIDS is now the leading cause of death for women 15 to 44 years old in New York and, by 1991, is expected to become the fifth-leading cause of death for women in that age group nationwide.

Yet unlike gay men, who constitute more than 80 percent of people with AIDS in San Francisco and for whom most services were modeled, women with AIDS have no political community, no lobbyists, no neighborhood where their illness is sympathetically acknowledged and treated with kindness.

Because the population of women with AIDS is so diverse and so many are poor people who are struggling daily to survive, they have no natural lobby. And because women have families to protect, many are afraid to admit that they have the disease and fight publicly for their issues.

"Women with HIV are assumed to be prostitutes or drug users who deserve what they get," said Catherine Maier, director of the Women and Children's Program at the San Francisco AIDS Foundation. "These women represent every sexual orientation, every socioeconomic group. They have little or no political power."

In fact, most women with AIDS in San Francisco are not drug users. Of the 129 women whose ailments have been diagnosed as full-blown AIDS, 70 got the virus either through transfusions or heterosexual contact. Fifty-seven of the women contracted HIV from intravenous drug use, and the remaining two got the virus from unknown sources.

Activists say the discrimination that women experience in general throughout society is felt even more intensely by women affected by the epidemic. For example, women have only marginal access to clinical trials of experimental drugs, which are often the only treatments available.

Women, who account for nearly 10 percent of AIDS cases nationwide, make up only 6.6 percent of the patients in all federally sponsored drug trials. Many of the exclusions are based on the theoretical possibility that a woman could get pregnant while taking a new drug and thus harm the fetus.

For this reason, one of the first studies of AZT, the only anti-viral drug approved for AIDS treatment, allowed only 13 women in a 282-patient study. Many trials still require proof of sterility for a woman to participate.

Women's participation in San Francisco trials has crept up from 1 percent in March to 4 percent now, said Moher Downing, coordinator for Community Consortium, a model program of local clinicians who are running trials apart from the federally sponsored ones.

However, "the numbers of women in clinical trials are perennially small in San Francisco," said Dr. Sandra Hernandez, director of the San Francisco AIDS Office.

Advocates for women with AIDS say that too much attention is paid to the unborn fetus at the expense of the mother.

"With women, we either talk about pregnancy or pediatrics. We talk about women as the vectors of the disease. We talk about everything but the women themselves," said Downing, whose goal is to get more women and minorities into community-based drug trials.

Much of the World AIDS Day activity will be aimed at pressuring the government to include infections specific to women in its definition of AIDS. Practitioners and activists say that without inclusion of these infections, women's illnesses are not properly diagnosed and treated and the patients are denied crucial government benefits that come with an AIDS diagnosis.

Many of the first infections experienced by women with HIV are gynecological. One example is chronic vaginal candidiasis, or yeast infection. Candidiasis is also known as thrush. Oral thrush is an indicator of HIV infection in men and is listed by the Centers for Disease Control as an opportunistic infection, while vaginal thrush is not.

Women with chronic candidiasis are not necessarily HIV infected, but practitioners argue that the presence of the disease ought to be a red flag for those who feel chronically ill.

There is also evidence that human papilloma virus (HPV), or recurrent vaginal warts, can be an indicator and can quickly lead to cervical cancer in HIV-infected women. Nontreatable chlamydia, another vaginal infection, can also be an indicator. Neither of these diseases specific to women is included in the CDC definition.

"The woman who might be HIV-infected (and does not know it) will just be passed over," said Catherine Lyons, nurse practitioner at Project AWARE, the women's program at San Francisco General Hospital's AIDS clinic.

Members of the activist group ACT-UP in New York have been pressuring the Centers for Disease Control to include these infections in the definitions of AIDS and AIDS-related complex, but the agency has refused.

"To make this an issue about what is classified as AIDS is missing the point. The point is, make the diagnosis of HIV infection as early as possible," said Dr. Gary Noble, the Centers for Disease Control's deputy director for HIV. "We are obviously looking very carefully at the evidence that other diseases that are severe and life-threatening would be added to the AIDS case definition. The science does not support a change at this time."

Katrina Haslip, an ACT-UP member and a woman infected with HIV, left a meeting with Noble and other Centers for Disease Control officials in Atlanta earlier this month with this warning: "I hold you personally responsible for the deaths of all the women I know infected with HIV, including my own."

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Why Few Women Will Admit They Have AIDS

Most HIV-infected women have chosen to remain silent about their plight.

These women, often single mothers, frequently carry a double burden of their children's reputation as well as their own. As with other forms of sex discrimination, their behavior is often assumed to be linked with promiscuity or even prostitution.

"Women are afraid to come forward," said Nancy, who has AIDS. "It's so goddamn hard to live anyway, when you're afraid you're going to lose your job and your home and you have two kids, you just dummy up."

Because of her former drug use and the fact that AIDS is such a stigmatizing disease, Nancy is for the most part closeted about her illness. Except for a weekly support group meeting run by the San Francisco AIDS Foundation, she shoulders the burden alone and so do her children, who tell people that their mother has cancer.

Nancy lost her husband to AIDS nearly six years ago. The couple ran a successful business for several years until his death. Both had been intravenous drug users.

At age 42, after three hospitalizations this year, she was forced to give up a well-paying job and accept $587 a month in government disability, all the money there is to support four people. There is no money for child care or home care for Nancy.

One woman who has decided to come forward is Susan Jackson, whose AIDS-related complex was diagnosed three years ago. Jackson has changed from "a strung-out junkie living in the Tenderloin" to a volunteer at St. Mary's Hospital who helps people with HIV disease into public assistance programs and support groups.

"I take a very scared individual by the hand and lead that person through the whole process," Jackson said. "There were times when I didn't care whether I lived, but the people around me made me care. Women have to stick together. We have to help each other."

-- Elaine Herscher

CAPTION: PHOTO

Susan Jackson, once 'a strung out junkie' is now a volunteer at St. Mary's hospital in San Francisco/BY FREDERICK LARSEN/THE CHRONICLE

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