WASHINGTON -- Women, the fastest-growing group of AIDS victims in America, have been ignored by the federal government, which has aimed its money and attention at gay white men with the disease, according to physicians and women's advocates.
Although the government is slowly awakening to the problem, AIDS experts warn that it may be too little, too late.
AIDS is expected to be the fifth-leading killer of women ages 15 to 44 by the end of the year. The disease is already the leading killer of young black women in New York and New Jersey. Moreover, by 2000, the number of women with the human immunodeficiency virus that causes AIDS is expected to equal that of men.
Yet "10 years into the epidemic, we know virtually nothing about women and AIDS," Dr. Paula Schuman, a specialist in infectious diseases at Wayne State University School of Medicine in Detroit, said recently.
Women most often infected with HIV belong to minorities and the working class and are unemployed, she said. Compared to the considerable political clout wielded by gay men, "these women have very little power in the United States and very little ability to influence the research funds," Dr. Schuman said.
Fifty-two percent of women with AIDS in this country are black; 21 percent are Hispanic, according to the federal Centers for Disease Control.
With the government having largely ignored the issue until recently, and with poor women often shut out from medical care, women tend to be diagnosed later, sometimes when they are near death, critics say. When they do see a doctor, they may not be diagnosed with HIV or AIDS.
"I have met so many women who have been going from doctor to doctor trying to figure out what is wrong with them," a woman who is HIV-positive said at a recent national conference on women and AIDS. "Nobody asked them about HIV," said the woman, who contracted the virus through sexual intercourse with an infected man. "Nobody thinks about it."
But it is becoming increasingly difficult to ignore the dimensions of the epidemic in women: Since the CDC began collecting AIDS data in 1981, 20,309 women have been reported with AIDS in the United States. The number of new cases among women rose by 13 percent in the past 12 months, compared with a 3 percent increase for men during the same period.
"We've been looking at AIDS cases as if the epidemic were carved in stone, when in fact we're in the earliest stage of an evolutionary event," said Dr. June Osborn, chairwoman of the National Commission on Aids. "The important message is that we must care about . . . women. So much has focused on gay men and IV drug users."
Basketball star Magic Johnson's recent revelation that he contracted the virus from an infected woman has focused attention on the risks of getting HIV through sexual intercourse between men and women.
Women are 20 times more likely to get the virus from men than vice versa; HIV is usually transmitted through semen during intercourse.
"I admire Magic Johnson's courage in speaking out, and I admire his commitment to AIDS education . . . but I'm concerned about the women he may have infected," said Leslie Wolfe, executive director of the Center for Women Policy Studies in Washington. ZTC "We as women ought to be talking about heterosexual transmission to us. We need to protect ourselves."
Little is known about how the disease strikes women because they have been poorly represented in major AIDS studies and clinical trials conducted by the National Institutes of Health.
That is beginning to change, thanks to prodding by some specialists in infectious diseases, women's advocates and women in Congress.
"The issue of research on women and HIV infection is very important and is a high priority for us," said Dr. Daniel Hoth, director of the AIDS division at the National Institute of Allergy and Infectious Diseases, part of the NIH.
"It's very important to realize that it isn't like nothing's been done," he said. "We think more needs to be done, but women should not be made to feel that we have no knowledge of how to treat them."
Representative Constance A. Morella, R-Md.-8th, who has introduced legislation to increase research on women and AIDS, acknowledged that the NIH now recognized "that there is a tremendous problem, that women are getting HIV-infected faster than men."
The disease in women has been "misdiagnosed, undiagnosed and diagnosed too late," she said.
Next year, the National Institute of Allergy and Infectious Diseases expects to begin a major study of 2,500 women with HIV to identify how the virus progresses in women.
Two studies of heterosexual transmission of the virus and transmission from mothers to fetuses are being expanded in response to the public outcry for more research.
There are clear advantages to including more women in any AIDS study:
First, women gain access to the few experimental drugs available to treat AIDS. As Dr. Hoth put it: "In a disease that is
fatal, access to experimental therapies provides hope."
Moreover, better research will lead to earlier detection. Preliminary studies suggest that women's symptoms may include recurring vaginal yeast infections and pelvic inflammatory disease.
Mrs. Morella, reflecting upon the government's embryonic efforts focus on women, said, "I don't think it's enough," but she added, "It's a beginning."