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Long-term Survivors

Op-Ed: Why I'm Holding on to AIDS

Why I'm Holding on to AIDS

I don't just have HIV. I'm living with AIDS. And I'm not ready to "let go" of the term and the history it evokes. 

AIDS. Those four letters form a diagnosis that many still equate with death. Unfortunately, even understanding the difference between AIDS and HIV—and between AIDS circa 1984 and AIDS 2016—doesn’t drain the power or negative connotations from the acronym. Which is why some HIV activists, doctors and service providers advocate ditching it for the more “appropriate” stage 3 HIV.  AIDS has more than just fallen out of fashion, it is a term that many within the HIV community no longer utter, and those in mainstream media too often use incorrectly. It is laden with pain and suffering and stigma—and I could be the only one wondering if that isn’t exactly the reason we should keep using it.  

We all know that words are powerful and choosing the right one’s matters. HIV and AIDS are not equivalent. Activists have been struggling for years to get that simple point through to the general populace. The distinction is real and it is necessary. Most of those diagnosed with HIV today may never have AIDS. Whether we chose to call it AIDS or stage 3 HIV, the diagnosis is only made when someone with HIV has their CD4 count fall below 200 and/or they begin to experience certain opportunistic diseases (like toxoplasmosis or Kaposi's sarcoma).

Antiretrovirals are been so successful in treating HIV and suppressing viral loads that some people believe the only way to have AIDS-related illnesses is to flagrantly ignore doctor’s orders and avoid or discontinue care. That simply isn’t true.

AIDS occurs when someone’s immune system has been badly damaged. Some of us received an AIDS diagnosis 30 years ago, long before ART and we have never been able to reach the viral suppression those who start ART soon after infection can do today. Others did go off meds—for many reasons, including side effects like bone density loss and buffalo humps—and our health deteriorated. Still others are struggling with AIDS-related illnesses simply because they didn’t realize they were poz until their illness had the upper hand. As studies are repeatedly showing, it’s much harder to knock HIV down once it’s well established.

Some people act as though the success of ART has all but eliminated AIDS, as if it was one of those antiquated eradicated diseases like polio.  But the truth is, people are still dying of AIDS today. Perhaps more importantly, people are also living with AIDS today.

And that is true not only in the Deep South—where African-Americans are more likely to not only become poz but also to experience negative health outcomes including AIDS-related deaths—but also in places like San Francisco, where there are nearly 10,000 people living with AIDS. That number is separate and distinct from the 15,000 people living with HIV in the city. In fact, 85 percent of those living with AIDS are expected to continue doing so, (living that is) at least 5 years. Our chances of survival may go down the longer we live with AIDS, but there are still thousands of us who will continue living with AIDS as we age.  

Which is a terrifying thought to some of us facing the future without safety nets. Many of us expected to do what everyone else expected us to do—to die. To afford our medical care, and because we were certain we would never need it, we cashed out our life insurance and drained our retirement funds. Now we’re realizing we’re going to continue to live—just not well. Younger people living with HIV have the privilege of looking forward to a future pregnant with possibilities but many of us old guys are facing an uncertain, and far less rosy, tomorrow.

Some younger activists seem to think that identifying as someone with AIDS, or as a long term AIDS survivor, is unhealthy, in part because we seem to be focused on the past and not on the future. When you haven’t reached your third decade, talking about what happened 30 years ago must seem like ancient history. But time is relative and for many of us the wounds still haven’t healed. If you didn’t experience that period first hand, you don’t know what it was like.  Unless you’ve watched an entire generation wither and die, attended dozens and dozens of funerals, lost 50 friends and were told your own life would end any day—you don’t know what it means to be a survivor.

The early days of the AIDS epidemic were like living through a particularly brutal war. Military men who served in Vietnam may have been spit on, but we had people literally, publically celebrating our deaths. Don’t expect us to forget that easily or just let it go.

It’s also hard to let something go when you can’t get away from it. Many of us are still fighting AIDS. Some of us are sick. Some of us don’t appear ill because we’re having success in treating our opportunistic diseases. But we still have AIDS. We may all have HIV, but being in stage three is quite different. Distinctions matter. When you wipe away AIDS so that people with HIV don’t have to live with that stigma I’m worried you’re pushing people living with AIDS aside so the HIV community can break free of the AIDS image, perhaps of the entire AIDS generation, my generation.

So often in political movements a minority group will take the route of appearing just like everyone else, and they will promote images of themselves as model citizens and downplay aspects that the mainstream finds objectionable, ugly, disturbing, scary or queer. Will eliminating those four letters make people with HIV less of a threat? Will changing AIDS to HIV stage three reduce stigma? Maybe so. But just because we aren’t pretty to look at doesn’t mean we don’t exist and doesn’t mean we don’t deserve the same rights and acceptance as anyone else.

That’s why I’m not ready to give up AIDS.


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