Should anyone wear the scarlet ‘A’ of AIDS? (Andriote series 2 of 4)
by John-Manuel Andriote, Sep-tember 06, 2009
With treatment, a stigmatizing diagnosis can be changed to ‘living well with HIV’
At least Hester Prynne’s scarlet letter was only pinned to her dress.
People living with HIV whose infection even temporarily progresses to the stage referred to as AIDS don’t have the option of removing their own “A,” as Nathaniel Hawthorne’s fictional Puritan adulteress did each night when she undressed.
The Centers for Disease Control and Prevention classifies someone with HIV as having AIDS if their T-cell count — the white blood cells that HIV attacks — drops even once below 200; if the T-cells make up only 14% of all their white blood cells; or if they have one of about 26 “AIDS-defining” infections that prey on a weakened immune system.
If you think it doesn’t matter whether you are described as HIV-positive or having AIDS, think again.
I should know.
Shortly after I was hit with the news that I’d tested HIV-positive in 2005, I was hit again with a test result showing I had a T-cell count of only 198.
“That’s an AIDS diagnosis!” I exclaimed to my doctor. Learning I was HIV-positive was shocking enough. Confronting the fact that I would always bear the highly charged, confusing and stigmatized label of “AIDS” was overwhelming.
Nearly four years later, antiretroviral therapy and good healthcare have strengthened my immune system. My viral load is undetectable. If I didn’t know that I have HIV, I wouldn’t know because I have never been sick.
Yet I’m dismayed to think I am still considered a “person with AIDS.”
In the early 1980s, gay men with AIDS insisted they be called “people with AIDS” rather than “AIDS victims.” The word “victim” implied helplessness. It didn’t convey their determination to fight their illness and reject the shame the public expected them to feel for having the deadly sexually transmitted disease.
Today, when it is possible to live well and long with HIV, the very term AIDS seems to have outlived its usefulness — and causes unnecessary confusion.
In 1988, the Presidential Commission on the HIV Epidemic stated that “the term ‘AIDS’ is obsolete. … Continual focus on AIDS rather than the entire spectrum of HIV disease has left our nation unable to deal adequately with the epidemic.” Yet some, including the CDC, persist in using the term.
Keith Henry, a medical professor at the University of Minnesota and a physician specializing in HIV care, said the term AIDS “still has great value epidemiologically” in tracking how well (or not) HIV-positive people are being brought into care. He says it’s also useful in helping a doctor know whether a HIV patient has had serious immune damage, even if the patient has recovered.
In the early years of the HIV epidemic, people typically didn’t learn they had the virus until they were seriously ill. Henry explains that most AIDS diagnoses in the U.S. today are based on a low T-cell count.
“We’re in a different age,” said Frank Oldham Jr., president of the National Assn. of People with AIDS. “Telling people they have an AIDS diagnosis and will ‘always have AIDS’ is going to devastate the person emotionally. So you need to have language that encourages people to stay in treatment and shows they can get better.”
Regan Hofmann, the HIV-positive editor in chief of POZ, a magazine about living with HIV, agrees. “AIDS is a more frightening word than HIV,” she said. “HIV is associated with a more modern era with people being able to be healthy on treatment.”
Yet even in this different, modern era, no one until recently addressed the psychological impact of carrying the AIDS diagnosis, according to Marshall Forstein, associate professor of psychiatry at Harvard Medical School and chairman of the American Psychiatric Assn.’s Steering Committee on HIV Psychiatry.
San Francisco HIV specialist Christopher Hall calls the use of the term AIDS in this way a “vestige” of the epidemic’s early days. Hall prefers to “deal plainly with the facts of what someone’s T-cell count means in terms of the status of their disease.” Although he says doctors recognize the meaningful difference between a T-cell count above or below 200, “I work hard to disabuse patients from the view that if they have well-managed HIV and they are adherent to their meds, they have AIDS.”
From a legal point of view, people with HIV — regardless of the stage of infection — are considered disabled and protected against discrimination under the 1990 Americans with Disabilities Act. “The courts don’t understand the medicine and get things wrong,” said Bebe J. Anderson, HIV Project director for Lambda Legal. She adds that discrimination against people with HIV isn’t based on the status of their infection. “The effects of HIV on people can be different,” she explained, “but the social effects are the same because it’s based on HIV.”
I choose not to call myself a “person with AIDS” because I don’t believe the term accurately describes my health status. I don’t feel the need for the additional political empowerment it conveyed to my early-1980s predecessors. And I surely don’t want to invite additional stigma.
Instead, I choose to say, “I am living well with HIV,” as Goulda A. Downer, principal investigator of the National Minority AIDS Education and Training Center at Howard University College of Medicine, recommends.
Isn’t it time, more than 20 years after the presidential commission called the term AIDS obsolete, to retire it and use language that is both medically accurate and less stigmatizing? It is challenging enough merely to live with well-managed HIV. Why make it even harder by insisting that those of us with the virus forever bear our own scarlet letter?