Activists Call for Expanded Definition of AIDS in Women

Radical AIDS activists recently chained themselves to the front door of the federal Centers for Disease Control to make yet another point: that women with AIDS are getting a bad deal from the government.

Over and over again in recent weeks--and in a theme that persisted throughout a two-day national conference on women and AIDS here--the activists have demanded that the Atlanta-based CDC widen its definition of AIDS to include symptoms specific to women.

BACKGROUND: When AIDS first surfaced in 1981, the CDC developed a definition of the disease in order to track the growing epidemic. The definition included certain symptoms then known to be unique to AIDS that resulted from infection with the human immunodeficiency virus. These included the onset of Pneumocystis carinii pneumonia, a life-threatening respiratory infection, and Kaposi’s sarcoma, a rare capillary cancer. In 1987, the agency expanded its definition to include additional symptoms, such as wasting syndrome and dementia.

Activists argue that indications of AIDS in women are often different from those in men and frequently include severe recurrent gynecological infections and disorders.

“Since doctors depend on the CDC definition for diagnosing AIDS, women with AIDS are all too often not correctly diagnosed,” said a recent statement from ACT UP (the AIDS Coalition to Unleash Power). “The AIDS epidemic is kept artificially lowered, which affects how and where funds are allocated. Also, because so many services have adopted the CDC definition as their criteria, women often do not receive the treatments, benefits and other social services that they require and deserve . . . . Many women die without ever receiving an AIDS diagnosis.”

In October, activists filed a class-action suit against Health and Human Services Secretary Louis W. Sullivan on behalf of women and other populations “who have been denied Social Security benefits because they lack an ‘official’ AIDS diagnosis.”

Officials at the Centers for Disease Control say that their AIDS definition was developed to enable the agency to track the spread of the disease and design strategies to prevent transmission.

“CDC does not include in the AIDS case definition illnesses which are less severe and usually not life-threatening,” the agency said in a statement. “There is no scientific evidence that conclusively links HIV infection to life-threatening illnesses specific only to women.” Certain gynecological conditions, such as pelvic inflammatory disease and vaginal candidiasis, “although sometimes found in women with HIV infection, are not specific for HIV infection and/or immune system suppression.”

The agency said that the current case definition includes opportunistic diseases that afflict both men and women. “Inappropriate changes in the case definition may obscure the epidemic trends and hamper forecasting the epidemic,” it said.

OUTLOOK: The Social Security Administration acknowledges that it used the CDC definition “in the early years . . . to expedite the evaluation of . . . disability claims.” Now, however, the agency insists it “has revised its guidelines to reflect the expanding knowledge of HIV infection” since it has become “apparent that HIV infection (is) manifested by additional severe impairments not encompassed in the CDC definition.”

In the meantime, it is unlikely that the CDC will change its AIDS case definition to reflect these concerns.

“Although CDC is not the federal agency responsible for either access to health care or disability determinations, CDC does share the concern that all persons with HIV-related diseases should have adequate and appropriate health care,” the agency said.