The changing demographics of AIDS, which federal health officials predict will become one of the leading causes of death among women of childbearing age next year, has focused new attention on the special problems of females who contract the disease.
AIDS is now spreading more rapidly among women than among men, according to James W. Curran, director of the AIDS program at the federal Centers for Disease Control. Last year, cases of AIDS among women increased by 29 percent, according to the CDC, while those among men rose by 18 percent. Half of the cases among women were attributed to intravenous drug use, while 20 percent were linked to heterosexual contact with male drug users.
"The absolute numbers are going up dramatically," said Curran. Since 1981, about 15,000 of the 155,000 cases reported nationwide have been among women. About 1 million Americans are believed to be infected with the human immunodeficiency virus that causes AIDS, Curran said.
The same trends are occurring in the Washington area, health officials report. So far, the number of AIDS cases among women is still fairly small -- 338 of a total of 4,358 cases -- or about 8 percent, according to the most recent statistics compiled by the District. Nearly 58 percent of the cases occurred in the District, and 86 percent of the affected women are black or Hispanic.
According to a survey soon to be released by the D.C. Commission on Public Health, the number of women who tested positive for HIV jumped from 30 per 1,000 in 1989 to 50 per 1,000 in 1990. For women tested in drug treatment clinics, the figures were similarly alarming: the rate of positive tests rose from 190 per 1,000 in 1989 to 250 per 1,000 this year.
D.C. officials said these numbers do not reflect the magnitude of the problem, because AIDS cases are underreported. "We are finding that women die of HIV-related illnesses before ever being diagnosed with AIDS," said Adora Lee, director of the District's Office of AIDS Activities.
To cope with the increasing caseload and the special problems of women who often suffer from isolation, ostracism, poverty and the burden of caring as single parents for children who may also be infected, several programs have recently been established.
They include a biweekly newsletter called "The Positive Woman," support groups and in-home "safe sex" parties, sponsored by the D.C. Women's Council on AIDS, which are modeled after Tupperware parties, in which volunteer AIDS educators help teach women how to persuade their sexual partners to use condoms.
Last week, the Whitman-Walker Clinic and the District government dedicated a house for families with HIV near Logan Circle. It provides homes for infected mothers and their children, many of whom also suffer from HIV. Called the Stewart B. McKinney House, it is named for the late Republican congressman from Connecticut who died of AIDS in 1987.
The problems confronting women with AIDS also are receiving national and international attention. The World Health Organization designated this its theme for the recent World AIDS Day, and this week the National Institutes of Health will hold a two-day symposium on the topic; attendance is expected to exceed 1,700.
In addition, the National Institute on Allergy and Infectious Diseases (NIAID) last month approved a research section within the agency's office on clinical trials that will focus only on AIDS and women. And the National Commission on Acquired Immune Deficiency Syndrome plans to hold hearings on women and AIDS next spring.
The increased attention to the special problems of women with AIDS has arisen because of "the pressure from people working in the epidemic and . . . the increase in the numbers of cases in women," said Vickie M. Mays, director of the Black CARE Project in Los Angeles. "There has been a consistent push by many individuals to say that women are not being given an equal focus."
Despite increasing emphasis on community education, AIDS educators said, many women still do not understand that they can be infected through sexual contact.
"I have girl friends who are single, educated women, and they are not using condoms," said Missy LeClaire, 39, of the District, who contracted AIDS sexually from her husband; he received a transfusion in 1982 before blood was screened for HIV. "After going through all of this . . . with me, they still don't use condoms."
Women who discover they are infected experience some of the same problems of isolation, fear and ostracism that confronted gay men, who were among the earliest sufferers of AIDS, which was first identified in 1981.
"People lose their jobs," said Denise Rouse, director of the D.C. Women's AIDS Council. "They get kicked out of their homes. Family members desert them. Neighbors threaten them."
But there are distinct differences. "Women are the caretakers of our world; they are the ones who do the dirty work," LeClaire said. In 1986 and 1987, she worked around the clock caring for her dying husband, giving him injections every two hours and changing his sheets six times a day. LeClaire said she was not tested for HIV for six months after her husband's diagnosis because, she said, she was so focused on him. "I didn't have time to worry about myself."
Because AIDS disproportionately strikes poor, minority women, Rouse and others said, it is heaped on top of the many other problems they face. Many "women already are struggling with feelings of helplessness and hopelessness in trying to make a living and function in society," said Rouse.
So far, researchers said, it is not clear whether the course of the disease is different in women. Part of the reason is that most treatments, such as the anti-pneumonia agent aerosolized pentamidine, have been tested primarily in men, because women have been underrepresented in large-scale clinical trials.
Nevertheless, said Deborah Katz, assistant to the director of the NIAID's Division of AIDS, "there is nothing to suggest that there is a difference in response to antiviral therapy or opportunistic infections because of gender."
But some preliminary studies and anecdotal reports do suggest differences.
Brown University researchers who have studied more than 200 Rhode Island women with HIV have found that only 19 percent have developed AIDS-related pneumonia compared to 60 percent of men.
"So far, the data we have is that women do not progress faster than men," said Charles C.J. Carpenter, a physician who is associate director of the Brown AIDS program. "We have a lot of women who have been stable for three years."
Some clinicians, including Mary Young, a physician at Georgetown University Hospital, who has treated 70 HIV-positive women ranging from a teenager infected at 16 to a 62-year-old woman who had a bisexual lover, said they believe women tend to be diagnosed late. NIAID's Katz said that to date there is no scientific evidence to support this.
AIDS activists agree with Young and have pushed federal officials and researchers to pay more attention to the problems of HIV-infected women. "Women die two to four times faster then men," said Judith Cohen, a member of San Francisco's ACT UP chapter. The reasons, she said, "are ignorance and sexism."
A recent study by the NIAID suggests that in some women, HIV infection may hasten the growth and spread of the human papilloma virus leading to the development of cervical cancer. Women with AIDS, Katz said, need semi-annual pap tests, which detect cervical cancer, as well as regular gynecological check-ups.
Some AIDS activitists, including Cohen, said that for too long, researchers have regarded women merely as "vectors" of the disease -- the vehicle by which the virus affects infants -- and as a result, have been largely ignored in research studies.
"I think that is true," said Deborah Cotton, a physician at Harvard Medical School. Because the public health focus has not been on protecting women from the disease, she said, "we missed an opportunity to stop an epidemic in a group of people before the virus had spread."