“Cancer is first of all a disease of the body’s geography, in contrast to syphilis and AIDS, whose definition depends on constructing a temporal sequence of stages,” wrote Susan Sontag in her 1987 essay “AIDS and Its Metaphors.”
And while much has changed about AIDS in the intervening decades, the construction of those time-related sequences remains. AIDS is not, and has never been, a label of precise definition. It has been a soft-moving target, used to classify people with certain symptoms, but it has no relevance to living with HIV infection today.
We know that a person with HIV can look completely healthy and harbor a CD4 count of 50 cells/mm3, or a person can look sickly and wasted and harbor a more robust number like 199. But both, by definition, have AIDS because their CD4 counts are under 200. The cause of their CD4 count decline does not matter; the presence of HIV combined with the decline is the defining factor.
I am exceedingly aware of the import of an AIDS diagnosis for many of my friends who have overcome the darkest days of this epidemic. It is a badge of honor. But it is time to retire the AIDS label altogether as medical category.
A Cavalier Label
In mid-April, I began feeling like death warmed over — and that was on my better days. I was in and out of the ER, and no one could quite figure out what was wrong. Then a lab screw up sent me back to the ER. Within hours I was admitted to the hospital — not for the “blood infection” the lab results showed, but PCP pneumonia (pneumocystis pneumonia) and a partially collapsed lung. The next day, I had thrush. My CD4s, maintained at a fairly respectable average of 400 since I started meds in 2010, had crashed to 110.
The initial assumption was that I had failed to adhere to my treatment. Three days later, that was shown to be untrue. My viral load was undetectable. Another, still unidentified infection had suppressed my bone marrow activity — crashing my immune system and my general red blood cell populations.
Despite that medical reality — that my PCP and suppressed immune system were not caused by HIV, but by some other infection — I was diagnosed and labeled with “AIDS.”
I don’t care about that; but I do care about the cavalier way medical terminology applies that label when there is only partial evidence. It is a box in which I shall remain beyond the grave. Because once you are diagnosed with AIDS, or HIV stage 3, you are always a person with AIDS or HIV stage 3. That is not science, it is medieval mysticism.
It’s HIV Disease
It is time to retire the ill-fated staging of HIV disease. It should be called, quite simply, HIV disease. The same perspective should be taken on it as on heart disease, which represents a host of diagnoses related to the heart, or on diabetes that involves a failed pancreas.
As HIV infects and affects the immune system, there is no corporeal geography to which to attach the infection; there is also no one way HIV progresses. Trying to label it is an act of control that is both hubristic and futile. HIV will do what HIV will do in a body, tracking its own course.
Creating false categories to define the virus in our body creates classes of haves and have nots in our community. In reality, if we have an AIDS diagnosis, an HIV stage 3 diagnosis or an HIV stage 1 diagnosis, we all have HIV disease. We are all on our own unique uncharted journey with this virus.
Words will not and cannot control, contain, limit, minimize or stop the story that the virus will unfold with replicated viral RNA strains. Just as each of us has our own story of how we became HIV positive, we also have our own HIV disease story. Each is unique to our DNA, and pretending otherwise erases our unique experiences and our unique realities.