Proposed AIDS Definition Change

The Centers for Disease Control (CDC) is proposing to revise the surveillance definition of AIDS in adults and adolescents to include anyone who is HIV positive and has 200 or fewer T- helper cells (also known as CD4 cells). This will increase the number of people with HIV who are eligible for free health care and other benefits. The change comes in response to great pressure on the CDC from all sides, ranging from ACT UP to the American Medical Association. However, the activists who organized the campaign to change the definition of AIDS feel that this revision does not address their primary concerns, and that more pressure is still needed to make the definition reflect the reality of the epidemic. The CDC has said that barring any unforeseen circumstances, the new definition would go into effect January 1, 1992. The definition was last revised in 1987.

The proposed definition will have a huge impact on the face of AIDS in the U. S. Obviously, changing the definition is not going to make anyone sicker or healthier, but it will greatly increase the numbers of people with an official AIDS diagnosis. On the positive side, more people will be able to qualify for disability, housing, medical care, and other benefits that can depend on an AIDS diagnosis, and more people may seek medical care.

We have heard several reactions from people who would be affected by the proposed revision. One woman with HIV wondered aloud just how sick she would have to get to have her T-cells hit 200 so that she could receive the benefits that depend on an AIDS diagnosis. On the other hand, for some people the emotional impact of waking up on January 1 with a diagnosis they had successfully avoided for years will be rough.

Activists who have been pushing the CDC for over two years to revise the AIDS definition are disappointed by the proposed change. The definition as it stands now does not include any of the AIDS-related opportunistic infections that are specific to women, such as vaginal candidiasis, cervical cancer, and chronic pelvic inflammatory disease, nor a host of other disabling HIV- related conditions that are common in injection drug users (IDUs) and people of color, including women. Because the definition of AIDS has reflected the historical experience in gay men, many women have died of AIDS without ever having an official diagnosis, sometimes without being eligible for the benefits they need. The proposed change would help some of these people, but it does not address other issues raised by activists, nor would it require the CDC to acknowledge that AIDS is different for women or to keep statistics on the opportunistic infections that are specific to women and IDUs.

Another problem is the uncertainty of T-cell tests. They are not designed as screening tests, and so are not as carefully calibrated as the HIV antibody test, for example. T-cell counts on the same person can vary from lab to lab, not to mention from hour to hour. While it does give a general indication of the status of one's immune system, it may be problematic as an AIDS- defining indicator. We also know very little about how T-cell counts are related to progression of disease in women. Judith Cohen of Project AWARE in San Francisco said that there is a suspicion that T-cell counts vary more widely in women, possibly due to menstrual cycle fluctuations, but that no one knows what "normal" T-cells are like in women. Many women will qualify under this definition, but it could turn out that women will still be dying without an official diagnosis.

Dr. George Lemp in the San Francisco AIDS Office estimated that the numbers of living people with AIDS in San Francisco could more than double under this revision. Some areas of the country will see an even greater increase. Federal funding that is dependent on AIDS case loads, such as the Ryan White/CARE bill, will have to be reallocated, and unless federal funds are boosted, dollars will have to be spread over a larger area, resulting in service cuts that could leave cities unable to keep up with the increased demand. The change will certainly help many people, but it will do little to address the underlying problems that led to the call for a revised definition.