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Being Alive
Thoughts on the CDC's Expanded Definition of AIDS
Nancy MacNeil
February 5, 1993
Being Alive 1993 Feb 5: 14

The Centers for Disease Control and Prevention have expanded the surveillance definition of the Acquired Immune Deficiency Syndrome (AIDS). Any person who is infected with HIV and has a count of fewer than 200 CD4 cells per cubic millimeter of blood is now classified as having AIDS. The new definition also includes recurrent episodes of pneumonia (including bacterial pneumonia), Invasive Cervical Cancer and Pulmonary Tuberculosis as official AIDS defining opportunistic infections. This expansion will help to identify many cases among women and drug users that had not been counted under the old definition.

A syndrome by definition is a group of signs and symptoms that occur together and characterize a disease. However, defining a syndrome is not something that can be done just once and left alone. It requires constant updating. It is essential that the true scope of this epidemic be recorded. Revisions in the definition are made with the objective of achieving a more accurate representation of the numbers of immunosuppressed persons.

Since the formation of the AIDS definition and with every subsequent revision (until 1993), the CDC has defined AIDS by listing illnesses found from clinical observation of mainly young gay men in the United States. It is striking that the CDC, which has seen fit to provide a definition with 23 OIs, will only include two or three of the many illnesses that particularly affect women and other disenfranchised HIV+ people. This strategy not only precludes women, injection drug users (IDUs) and gay men of color from access to health care, it has a profound impact on surveillance accuracy.

To date the CDC is not meeting their mandate to accurately track the epidemic. Adding 200 T-cells to the definition does not correct this problematic flaw. Individuals do not generally receive CD4 tests unless their health care provider already suspects underlying HIV infection. The use of CD4 counts to provide an AIDS diagnosis will not accurately resolve the question of HIV infection and the case count will remain incomplete and artificially low. On the whole, women, IDUs and gay men of color get severe HIV disease and die at higher T-cell levels (often in the 300 range). Many women, IDUs and gay men of color do not have access to private health care. They are forced to use the public health care system. Many do not seek treatment until they are very ill.

On the other hand, the 200 T-cell criterion may be useful for people who know their status and monitor their health. An AIDS diagnosis may be just the thing some people need to prompt them to access timely medical treatment. It may also encourage others to take their medications (antivirals as well as prophylaxes for PCP).

The surveillance officers say that the 200 T-cell criterion will provide simple and direct reporting as well as an objective measure of the numbers of persons with advanced immunosuppression. This approach will eliminate what they call the "logistically implausible task" of developing a complete list of HIV associated diseases. They also say that case reports will come from a greater number of sources.

Reporting could come directly from laboratories to health departments. It will be up to each individual state to create new laws and legislation to protect people's confidentiality. Most current laws refer to HIV antibody test results. Twenty four states already require doctors and laboratories to report names of people who test HIV+ to state health officials. A few states have confidentiality laws where "indications of HIV" is couched in the language and encompasses T-cells. Many states are drafting regulations to set up new reporting systems. Officials want laboratories that test blood to identify new cases, in addition to relying on hospitals and doctors.

To the extent that CD4 counts below 200 now confer an AIDS diagnosis, activists are concerned about the psychological impact on the HIV/AIDS community. They say the CDC should require that T-cell tests be accessible without regard to ability to pay, be processed through only labs which satisfy quality control conditions, and that results be anonymous and/or confidential. They want a ban on the direct reporting of CD4 test results from laboratories to state and local health departments. At the very least, a numerical code rather than a name should be used to identify patients.

The activist community does not accept that the inclusion of 200 T-cells will result in sufficiently accurate surveillance. Many of us continue to have reservations about the exclusion of other conditions particularly vaginal candidiasis (thrush) and Pelvic Inflammatory Disease. We are convinced that what constitutes AIDS is more than 26 illnesses.

Surely the medical community is not naive enough to believe that T-cell counts under 200 by themselves are a specific prognosticator. We all have known people who have T-cell counts well over 200 who are sick and some are dying. On the other hand, for as long as we've been measuring T-cells, we've all known people with counts under 200 who remain healthy for significant periods of time.

However, by counting people with 200 T-cells or less, the official national AIDS count is expected to increase by 50 to 70%. Although funding for services, treatment, and research does not automatically come with increased numbers, it may encourage more public funding. Higher "official" numbers will give us more leverage in our lobbying efforts for more AIDS funding.

The people behind the numbers will continue to monitor their T-cells. While some counts are sustained for significant periods of time, others stay low for long periods. Some people experience significant drops in short periods, while others see a gradual decline. In any case, it is becoming increasingly clear that the quality of a person's remaining T-cells may be more relevant to sustained health than how many a person has. Many who have T-cells well below 200 will remain asymptomatic regardless of their AIDS diagnosis and in spite of how our government chooses to define the syndrome. 

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