For three years, I was in a state of denial. I didn’t want to tell anyone the truth, not even myself.
—Linda, 29, of Edmonton, who was diagnosed four years ago as HIV-positive
The figures made no sense. When he examined the number of AIDS cases in British Columbia early last year, Dr. Alastair McLeod, chairman of the AIDS Care Group at St. Paul’s Hospital in Vancouver, faced a dilemma. At the time, there were only 17 reported cases of women with AIDS in the province. But his own estimates, based on anonymous provincewide blood tests done between 1985 and 1990, indicated that as many as 500 women had HIV, the human immunodeficiency virus that leads to AIDS. However, despite a sharp increase in the number of women in the United States reported to be suffering from AIDS, Canadian doctors have not detected a hefty increase in women seeking drugs or other treatment for such HIV-related diseases as Kaposi’s sarcoma, a form of skin cancer, and pneumonia. Said McLeod: “I’m still asking the same question: Why aren’t we seeing more women?” Nationwide, other doctors and AIDS activists alike face the same riddle as the AIDS epidemic enters its second decade. And some of them are beginning to ask if HIV triggers different diseases and infections in women than in men. According to the Federal Centre for AIDS in Ottawa, women make up 5.1 per cent of all AIDS cases in Canada, or 247 out of a total of 4,885. (So far, 2,912 Canadians are known to have died of the disease.) But the actual number of cases is probably higher, doctors say. Some of them point to the United States, where there has been an alarming increase in the number of women with AIDS.
Indeed, in the United States, adult women now account for nearly 10 per cent of the total AIDS cases, or 16,805 out of 171,876, according to the Centers for Disease Control in Atlanta. Although the rate of new infections
reported among American men remains high, projections based on the Atlanta group’s figures predict that by the year 2000, there will be as many women as men with AIDS in the United States, according to the Camden, N.Y.based Reproductive Health Quarterly. And by the end of this year, said a recent study in the Journal of the American Medical Association, AIDS will become one of the top five killers of women between the ages of 15 and 44. Said Dr. Martin Schechter, national co-director of the Vancouver-based Canadian HIV Clinical Trials Network, which co-ordinates studies of HIV treatments throughout the country: “My own sense is that around 10 per cent of the infected people in Canada are women.”
While fewer than 5,000 cases of AIDS have been diagnosed in Canada so far, experts estimate that as many as 30,000 Canadians may be HIV-positive, and 3,000 may be women. But many of them are probably unaware of their infections. According to Lesli Gaynor, co-ordinator of a women-and-AlDS project in Toronto,
some Canadian women may have been infected during the mid-1980s after HIV had started to wreak havoc among homosexual men. According to medical experts, HIV can incubate for an average of 11 years before leading to AIDS. As a result, many infected women may not yet have developed any symptoms of the disease, which remains undiagnosed by their doctors.
Some AIDS experts say that so far, the fear of AIDS is not a pressing issue for most women. Declared Gaynor: “In the early 1980s, gay men knew they had to do something because they saw their friends dying all around them. AIDS isn’t hitting women in the same way yet.”
At the same time, some doctors say that Canadian women do not face the same risks of HIV infection as their American counterparts.
About 60 per cent of the Canadian women who have been diagnosed as having AIDS have been infected as a direct result of heterosexual contact. By contrast, most cases of women with AIDS in the United States can be traced to the injection of drugs. But, said Darien Taylor, a Toronto woman who tested Hiv-positive in 1986: “The reality hasn’t changed. Any woman who is sexually active can be at risk. You just have to be well informed.”
But Carolyn Hafner, who works with a support group for HIV-positive women in Vancouver, and other experts say that education efforts are proving difficult— largely because existing AIDS organizations are unequipped to deal with heterosexual women. During the 1980s, most of those groups were formed primarily for the purpose of meeting the needs of homosexual men, who were then—and still are—at highest risk of contracting HIV. But Hafner agrees that, partly because of the background and training of their staff, some organizations are finding it difficult to deal with other groups. Added Toronto’s Gaynor: “AIDS organizations have incredible resources. But we have neither the staff nor the money to do all that is needed for women.”
Some doctors are already pressing U.S. and Canadian officials to examine more closely the type of diseases and infections that may signal the onset of AIDS in women. That is partly because HIV may behave differently in women than in men. Doctors say that women with AIDS rarely suffer from Kaposi’s sarcoma. According to statistics from the Federal Centre for AIDS, almost 17 per cent of men with AIDS develop the sarcoma, but only one per cent of the women do. As well, many women with HIV infection are afflicted with pelvic inflamma-
tory disease, a general term that covers a wide range of internal infections. Said Schechter: “Practitioners often fail to consider gynecological problems as a sign of HIV.”
At the same time, there is some evidence that pregnant women with AIDS may be less likely to transmit the disease to their unborn child than researchers previously assumed. According to Dr. Catherine Hankins of the Centre for AIDS Studies in Montreal, an eightcountry European study has shown that pregnant women who are HIV-positive have only a 12.9-per-cent chance of passing the virus on to their babies. The finding counters the medical
profession’s widely held notion of a 30-per-cent pass-along infection rate.
Meanwhile, some AIDS experts say they are encouraged that more women who are HIVpositive are at least willing to talk about their experiences. In North Vancouver, Doreen, a 58-year-old grandmother of six who is HIVpositive, and who requested that her last name be withheld, said: “Women have to realize that it’s not a gay disease. All of society has to realize this.” She became infected as a result of a tainted blood transfusion in 1982. In Toronto, Darien Taylor is now helping organize a new group exclusively for HIV-positive women. Said Taylor: “HIV is now a women’s issue. So much needs to be done, and sometimes I think that we haven’t even started.” The war against AIDS among Canadian women seems destined to be a long one.
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