Recently, ‘Collectively Speaking’ featured a blog post from guest blogger Dr. Lisa Fitzpatrick of United Medical Center in Washington, D.C. The post was originally published on The Huffington Post on February 19, 2013 and, though it’s been over a year since it was first published, her arguments in favor of minimizing the use of the term “AIDS” to decrease stigma are still relevant!
It used to be that an AIDS diagnosis was tantamount to a death sentence. Once your CD4 cells dropped below 200 or you acquired an opportunistic infection, it would be an overwhelming challenge to regain your health. In the height of the epidemic, an AIDS diagnosis conjured up images of people with rapidly spreading rashes, who could barely breathe, and who were wasting away into nothingness.
But that’s not true anymore. More and more people have had their CD4 cell count drop or acquired an opportunistic infection, and then go on to receive safe, effective treatment and return to health. Despite all the advances in medical care and treatment, we’ve retained the anachronistic idea that once someone is diagnosed with AIDS, they will immediately begin deteriorating until they eventually die…and that’s just no longer the case.
The numbers tell this story clearly. In 2010, about 487,000 people in the U.S. were living with an AIDS diagnosis. The estimated number of deaths of persons with an AIDS diagnosis, regardless of whether the deaths were due to AIDS or HIV, was 15,529. As a comparison, in 1995, there were over 50,000 deaths of people with an AIDS diagnosis.
Among The Women’s Collective’s small staff alone, several staff members have received an AIDS diagnosis at some point over the course of their lives—all are in treatment and healthy today. So why should the term, “AIDS,” follow them around? Especially when it represents the worst of the crisis…a time when people were dying faster than they could be diagnosed. And, language mattersbecause of the history of the epidemic—AIDS is a loaded term.
There’s a lot behind the language of AIDS—both fear and stigma. Fear can be paralyzing, and stigma is equally problematic. An AIDS diagnosis doesn’t mean the same thing that it used to—someone who is diagnosed with AIDS isn’t necessarily on the brink of death, and someone who has had an AIDS diagnosis in the past may be incredibly healthy today. It can scare a person living with HIV unnecessarily and it might cause others to treat them differently with no real justification.
There is, of course, is a rational reason to have specific language designate or identify when someone’s condition or health has worsened—we should be able to distinguish between someone who is living healthily with HIV and someone who is not adherent to treatment, has an opportunistic infection, or is in a more critical or serious condition. However, the time may have come for a new way to identify that someone living with HIV is living with serious medical issues. One option might be to identify different stages of HIV with diagnoses that don’t follow someone over time. A person’s medical diagnosis would transition between stages depending on their CD4 count, viral load, and whether or not they have an opportunistic infection. Another way might be to rely on those numbers alone. Maybe if we educate the community enough, they will know that having a CD4 count below 200 is serious without us having to designate it with a special term.
A transition away from the discourse of “AIDS” would require a lot of thought, consideration, and effort—and the conversation should include as many participants as possible. However we proceed, we need to remember that language matters and that stigma matters. And it’s worth it for us to consider whether it makes sense to use language from 30 years ago—from the worst of the epidemic—to describe today’s reality for people living with HIV and AIDS.