The New York Times - Saturday, December 1, 1990
David Barr, assistant director of policy at the Gay Men's Health Crisis

S.P. is a 23-year-old Hispanic woman, who tested positive for HIV, the virus associated with AIDS. She applied for Social Security disability benefits when she was no longer able to work due to weight loss and increasingly painful episodes of pelvic inflammatory disease and and nausea.

Despite two hospitalizations for pelvic inflammation, continued symptoms and evidence of a severely weakened immune system, S.P. was denied benefits. According to the standards of the Social Security Administration, she does not have AIDS.

What is AIDS? Since today is World Aids Day, it is most appropriate reexamine this question.

According to guidelines set by the Centers for Disease Control, which are followed by the Social Security Administration, a person can be diagnosed with AIDS only after developing at least one of the opportunistic infections listed by the CDC as AIDS-defining. But not all people with HIV develop those particular infections and, therefore, they are not diagnosed with AIDS.

What the CDC definition fails to acknowledge is that HIV manifests itself differently in different populations. Women, for whom AIDS is now the leading cause of death in certain age groups in New York City, often develop serious gynecological problems that are HIV-related, including pelvic inflammatory disease and refractory vaginal candidiasis, a painful infection. These conditions are often disabling and recurring. Yet, because they do not fit into the CDC definition, the women who develop them are ineligible for AIDS benefits and services.

Chronic pulmonary tuberculosis is a widespread symptom of HIV infection among the poor, especially those living in shelters. Recurrent endocarditis and kidney failure are common among HIV-infected drug users. HIV-infected children often develop recurrent influenzas and pneumonias other than pneumocystis carinii pneumonia. Yet, none of these illnesses are acknowledged as AIDS-defining according to the CDC.

When these illnesses result in death, they are rarely recorded as AIDS-related, significantly skewing the statistics on AIDS. Because of this, we do not really know how many people have died from AIDS.

A change in the CDC definition would provide physicians with crucial information about diagnosing HIV-related illness, an essential step in preventing AIDS. A woman who has recurring, refractory pelvic inflammatory disease is often not counseled to undergo HIV testing because the inflammation is not widely recognized as HIV-related. This prevents her from taking advantage of AZT and other medication that can forestall the progression of HIV and prevent the development of other opportunistic infections.

The limitations of the CDC definition also thwart efforts in research.The AIDS Clinical Trial Group, responsible for most of the AIDS research in the United States, is not engaging in any research regarding the treatment of HIV-related gynecological conditions. The CDC does not track each HIV-related opportunistic infection, making it impossible to determine which infections are the most widespread and how the prevalence of these infections varies in different populations. This makes it difficult to establish research priorities.

The illnesses excluded from the CDC definition are mostly those of women, children, intravenous drug users and the poor, the majority of whom are African-American or Hispanic. The failure of CDC to revise its definition in a three-year period is, therefore, another example of the sub-standard health care that these Americans receive. Lawyers for those denied benefits because of the CDC's limited definition of AIDS have sued the Social Security Administration on behalf of their HIV-infected clients. But that alone won't solve the fundamental problem.

Clearly, a change in the CDC's definition will more accurately reflect the AIDS caseload and highlight the need for more funds for services. The CDC has an obligation to ensure that its definition reflects the state of the art in knowledge about AIDS and the extent of the epidemic. The failure to do so impairs our research, hinders our ability to provide health care, prevents people from receiving vital services and treatment, and ultimately, costs lives.

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