COMMUNITY GROUPS

Women and AIDS, the struggle for recognition

by Wendy Malek

"Can women get this disease?" "No."

"How do you know?"

"No one has looked. "

.This conversation took place between two New York physicians in 1981. At that time, the medical world was becoming aware of a rapidly spreading, deadly disease that would later be known as AIDS, or Acquired Immune Deficiency Syndrome. This disease was first discovered in gay men, and for a dangerously long time was thought to be unique to that sexual preference. The aforementioned conversation was typical of the attitude of most doctors and researchers at that time. Even as women were

dying, the medical field re-

fused to recognize that

skin cancer classified as an AIDS defining illness, they are less likely to when faced with the gynecological disorders and bacterial infections often experienced by infected women...

994

Herpes and other sexually transmitted diseases that cause lesions are conductors for HIV because they give the virus an entrance into the bloodstream, yet women with chronic cases of herpes are still not being tested for AIDS. This reluctance to accept women as potential victims of this disease is not only short sighted, but deadly. "One of every four

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newly HIV-infected Ameri-

cans is a woman." Also, it has been stated that "By the year 2000, more than half of all affected adults worldwide

CLEVELAND will be women." In spite of

women could get AIDS. Repeated attempts were made to include women in clinical trials research, but every plea was ignored. It seemed like a hopeless situation, but a handful of physicians insisted on forcing the medical world to recognize that women could get AIDS and needed to be included in research. Hundreds of women have died of AIDS related diseases, and the government still refuses to recognize these deaths as being AIDS related. The struggle has been long and arduous, but with a decade of perseverance, women have proved that "AIDS is not for men only."2

Perhaps, the most formidable obstacle that women have had to overcome in the AIDS fight for survival is the surveillance definition. This definition was issued by the Centers for Disease Control in 1982, and it defined the particular conditions and diseases that were considered to be AIDS related. At that time, no gynecological symptoms were included in the definition. The first definition was based "on what was observed in a minuscule number of mostly gay white men.' ." Over the years, this original definition has been the source of a multitude of struggles for HIV-infected women. Probably the most catastrophic result of this stereotypical definition is the lack of early treatment for women. Because the definition did not contain any gynecological symptoms, there was no "red flag to doctors that these women should be tested for AIDS."3 Mireya Navarro reported the following in 1991:

"Critics say the definition has also robbed many people with the HIV virus...of early diagnosis and treatment because doctors often fail to recognize conditions outside the list as being related to the virus. While most doctors, they say, readily think of AIDS when they come across Kaposi's Sarcoma, a

these statistics, doctors are

still failing to recognize symptoms in women. Up until 1992, it was believed that "women with HIV progressed to full-blown AIDS and died more quickly than men." However, "New studies showed that if men and women received equal medical treatment early in the disease, their survival rate was also equal." Preventing the death of HIV-infected women, though the major concern of activists, is not the only result they are striving for.

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Many people afflicted with HIV are not in a position to pay for medical treatment. Although technology is providing many new treatment drugs, these drugs are extremely expensive. The federal government provides benefits for HIV-infected individuals who conform to the national definition; most women do not conform. This is a disastrous predicament for women who cannot afford to pay for treatment. It was not until January of 1993 that the government finally opened up the definition to include some of the women's diseases, including cervical cancer. Ms. Iturralde, an HIV-infected woman, was denied disability benefits by Social Security and said "They didn't think I had enough things wrong with me. Let's say if I get sick enough to satisfy them, how am I going to run around trying to do what I need to do to get the benefits?" This scenario was typical of government attitudes. The government was reluctant to expand the definition because it would mean a significantly increased number of AIDS cases and therefore an increased demand for benefits and services. A New York City coordinator for AIDS policy went as far as to say "it was not known whether the city could afford to meet these new demands." A statement such as this is a disgrace to a liberated society. The

statement implies that the financial needs of men can be met, but women's needs are just Continued on page 18

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