Away with AIDS?

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!

TWC ED & Board ChairIt 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.

Away with AIDS! Advancing Our Perceptions Parallel to Current HIV Science

By Guest Blogger Dr. Lisa Fitzpatrick

AIDS is not a death sentence! Many people still think AIDS means death but it’s not true. Thirty years ago it mattered if a person had AIDS because death was almost certain. Today it doesn’t. Advancements in HIV treatment can eliminate the threat of dying from AIDS but the community psyche is trapped in the past. In 2013 no one has to develop or die of AIDS. Why aren’t we getting this message?

We recently commemorated the 13th annual National Black AIDS Awareness Day (NBAAD). The goal of NBAAD is to raise awareness about HIV in the black community. My singular educational message for black America this NBAAD is that AIDS is not a death sentence! If I could, I would shout this message with a bullhorn from rooftops across the country.

AIDS can be prevented by early HIV testing and treatment. More importantly people diagnosed with AIDS can live a long life if they obtain treatment for HIV. Nowadays people with HIV and AIDS who are on treatment are not dying AIDS, they are dying from other ailments not related to AIDS. An added bonus is that being treated for HIV and AIDS reduces the likelihood of transmitting HIV to someone else.

There is reluctance by many in the black community to accept the truth about advancements in HIV treatment. This frustrates me. The lack of awareness and acceptance in our community hits me in the face in my clinic every week. Last week I saw two patients each illustrating our challenges with awareness and acceptance that AIDS is now a treatable condition.

The first is a man who was diagnosed with HIV in an emergency room five years ago. He presented to my clinic last week because he had developed a rash. When I asked why he decided not to follow up five years ago for treatment he said he was afraid he had AIDS and he knew he was going to die in a few years because there was no treatment for AIDS. He only came to see me to treat the rash because it was noticeable and people had begun to ask him about it. He had no idea HIV treatment was just as effective in people with AIDS.

The second person is an HIV-positive woman known to me because I started her on treatment one year ago. Despite numerous phone calls and notes of concerns sent to her she had not come for care since I wrote her initial prescription. When she arrived last week she nearly too weak to stand. When I asked why she hadn’t returned in a year, she told me she didn’t see the point in taking her medications since she had AIDS. Although I was confident we had covered this information, I again explained why AIDS is no longer a death sentence. She had become ill enough to be admitted to the hospital and this was completely avoidable. She, like so many patients I encounter, can’t fathom the effectiveness of new HIV medications. The community continues to make a distinction between HIV and AIDS. But as a clinician, I don’t. Actually, no one should. Because recent advancements in HIV treatment have rendered the terms AIDS so archaic it serves little purpose in 2013. It doesn’t matter if a person has AIDS!

The term AIDS was coined at a time when we had little information about HIV and worse, when stigma and discrimination were ubiquitous and unavoidable. But now I am convinced it is merely a barrier to our efforts to end this epidemic. Use of the term AIDS should be minimized in our conversations and eventually eliminated because as in the preceding examples, the perceptions shrouding the term “AIDS” discourage testing and engagement in care and treatment. At times I feel like a broken record when educating the community about the availability of new, effective treatment for HIV and AIDS. No one likes a broken record. But if that’s what it takes to make our society understand AIDS is no longer a death sentence, then I will continue to say it any way and anywhere I can. It doesn’t matter if a person has AIDS! It’s treatable and preventable! Get tested! Get treated! Live long!

Please will you help spread the word?

Tell me what you think it will it take to get people to accept and act on this message?

This post originally appeared in The Huffington Post and was republished with permission from Dr. Lisa Fitzpatrick.