Since the first American woman was diagnosed as suffering from AIDS in 1981, only 14,000 women have qualified for an “official” AIDS diagnosis. Although the actual number of women suffering from AIDS is probably closer to 40,000, the official definition of AIDS by the U.S. Centers for Disease Control (CDC) requires an individual to test positive for HIV (the virus that causes AIDS) and at least one related infection from its list. This list does not include chronic gynecological infections such as vaginal thrush, pelvic inflammatory disease (PID) and even life-threatening diseases such as cervical cancer because they do not appear in male patients on whom virtually all treatment models are based.
As a result, many women diagnosed as positive for HIV — but suffering from an “unlisted” disease — are unable to apply to the Social Security Administration for the financial benefits they need to support themselves and their children.
A Brown University study in 1989 found that 67 percent of HIV-positive women had severe vaginal infections before any officially recognized symptoms appeared. The study showed that if the CDC were to update their definition to include women, the numbers qualifying for benefits would more than triple. Kent Taylor, a spokesperson for the CDC, refutes these assertions. “These conditions, like yeast infections, are very common in all women” he said. “Science does not tell us that certain women’s conditions are directly related to HIV!’
Despite Taylor’s claims, medical studies across the country have shown that gynecological problems appear with dramatic frequency and severity in women with HIV. A 1988 University of Miami Medical School study found that 63 percent of HIV-positive women have abnormal Pap smears as compared to five percent of HIV-negative women.
Correcting the CDC definition has implications far beyond individual care because CDC projections are the basis for government allocations for AIDS research and services. According to Linda Meredith of the AIDS advocacy group ACT-UP/ Washington, DC, “The current definition downplays dramatically the overall scope of the epidemic. As it now stands, 48 percent of women with HIV on their death certificates are without a CDC diagnosis and that’s only the cases we know about. A restructuring of the definition would, at minimum, double the government’s expenditures!’ (Current estimates place the number of women testing HIV-positive at over 200,000.)
Denial of Social Security benefits is familiar to many service providers working with HIV-positive clients. Francine Wilson, a paralegal at Harlem Legal Services, has been forced to present psychological diagnoses to the courts, claiming schizophrenia or depression, so that HIV-positive women can receive any benefits at all. These diagnoses are on the list of AIDS-related illness. “In many, many cases!’ said Wilson, “if they had not had a psychological component, they would have been denied [benefits]!’
Jill Boskey, an attorney, recently held a workshop in upstate New York where she explained to legal workers how to obtain a psychological diagnosis for HIV-positive women without the officially recognized symptoms. This tactic is a chilling reminder of the days before legal abortions when women were forced to claim a psychological diagnosis in order to obtain an abortion.