Words matter, even the little ones.
In the late 1982 the Centers for Disease Control (CDC) introduced the term “acquired immune deficiency syndrome,” quickly shortened to “AIDS,” to describe a pattern of unusual illnesses that struck Gay and bisexual men, intravenous drug users, hemophiliacs, and Haitians in the United States. Government and community members began building thousands of organizations and programs focused on AIDS that continue today. In less than two years, scientists isolated the human immunodeficiency virus (HIV) that left the immune system susceptible to AIDS-defining illnesses; and by 1997 research had produced highly active retroviral therapy (HAART), the combinations of drugs which people living with HIV are told will allow us to live long and productive lives without HIV leading to conditions associated with AIDS.
Yet, in 2010 we continue to glibly talk about “HIV/AIDS” in a manner that promotes a two-class system among people living with HIV and conflates one diagnosis with the other when heard by the general public. We have even marked the unveiling of a national strategy against the disease under the rubric “HIV/AIDS” that is oblivious to the stigma and division which the strategy itself helps to perpetuate with this language.
I suggest, instead, that it’s time to bury “AIDS” with little fanfare—use it after “Band-“ and “hearing”, for sure—and to talk instead of “HIV disease” as it impacts people. That may require a massive re-branding of HIV service agencies and government programs, but so be it. “AIDS” is largely an administrative label applied irrevocably to certain people living with HIV, often to unlock packages of public benefits. Still, “AIDS” creates an “us”/”them” mentality among many HIVers based on CD4 counts and histories of opportunistic infections, and it provides one more thing for non-HIVers to fear in the lack of thorough education about HIV prevention and treatment.
If the goal of a national HIV strategy is to reduce transmission of the virus and to improve access to and sustainability of treatments against the virus, let’s keep our discourse focused on HIV and not a constellation of illness and death which we are told is avoidable.