This article by Emily Newman first appeared in Beta, a publication of the San Francisco AIDS Foundation (SFAF), here.
What do we lose by freeing ourselves from the word AIDS—or, what might we have to gain?
It’s a question provoked by advances in HIV treatment and care and changes in the way that people live with and experience HIV and AIDS.
“I think that a diagnosis of AIDS, and what it means, is historic in a lot of ways,” said Hyman Scott, MD, an HIV infectious disease physician at San Francisco Department of Public Health. “An AIDS diagnosis in 2016 is not the same as an AIDS diagnosis in 1986 if someone starts treatment right away.”
Last year, the Centers for Disease Control (CDC) changed the terminology used in HIV and AIDS surveillance reporting—replacing “AIDS” with “HIV Stage 3,” and adding a new “Stage 0” to classify very recent HIV infection.
“This was, to me, a sort of monumental piece of information—that CDC is no longer tracking ‘AIDS’ cases,” said Christopher Pilcher, MD, during an HIV Grand Rounds Presentation at San Francisco General Hospital.
Although the CDC surveillance staging system is intended primarily for monitoring and reporting HIV cases on a population level—and not as a basis for clinical decisions—this change in reporting highlights an interesting issue. Specifically, how public health experts, and others, are thinking about what an AIDS diagnosis actually means—and if any value comes from drawing a line in the sand between HIV and AIDS.
What’s the clinical value of an “AIDS” diagnosis?
Regardless of what the last stage is called, there is value in making distinctions between HIV stages of infection for public health or clinical reasons. Doing this provides a way for public health experts to define and measure how many people are diagnosed late in their infection and how quickly HIV progresses from one stage to the next.
An AIDS diagnosis signals to clinicians that a person’s CD4 count at some point dipped below 200 cells/mm3, or they have had an opportunistic infection, an important indicator that, if taken off therapy, the person’s CD4 count might rapidly decline again.
The advanced stage of HIV infection that the AIDS diagnosis captures is especially important, said Scott, for people who are diagnosed late in their infection.
“Although declining overall, approximately 18% of people diagnosed with HIV in San Francisco are diagnosed with AIDS within three months—a sign of long-standing undiagnosed HIV infection. We still have people presenting with PCP [pneumocystic pneumonia, an opportunistic infection] who are then diagnosed with AIDS. Clinicians still use the term ‘AIDS,’ to describe a stage of HIV. It can be helpful to describe just how sick somebody is,” he said.
Typically, people who receive an AIDS diagnosis carry that diagnosis for the rest of their life, even if their CD4 count does recover or if they suppress their viral loads and are healthy.
‘AIDS’ may not reflect how well a person feels, or how soon they might die.
These days, better tolerated and more potent HIV treatments may allow people who have diagnosed with AIDS to respond well to antiretroviral therapy, see immune system recovery and live many years.
“Previously, an AIDS diagnosis was associated with a very high short-term mortality in the absence of effective antiretroviral treatment. But now, although a diagnosis of AIDS is still associated with a higher risk of mortality, with timely initiation of antiretroviral therapy and good adherence, people can have a remarkable recovery. AIDS is no longer a death sentence by any means.” said Scott.
Vince Crisostomo, the manager of the Elizabeth Taylor 50-Plus Network at San Francisco AIDS Foundation, has been living with AIDS for more than twenty years.
“I remember being at my desk at work when I got my AIDS diagnosis, back in 1995. I thought what am I supposed to do now? Go home? I went from living with HIV to AIDS—and suddenly people thought of me as dying. Now, I technically still have AIDS but it’s been over twenty years since the diagnosis and I’m in good health. At one point, I offered to give my [handicapped] parking placard back, because I was getting comments from people, like, ‘Why do you have that?’”
San Francisco resident Jonathon1, who was diagnosed with AIDS in 2007, said that he always has to offer a longer explanation if he tells someone he has a clinical diagnosis of AIDS.
“I tell people that I have a clinical diagnosis of AIDS, because I have KS [Kaposi’s sarcoma]. But then I have to follow that by saying that I’m undetectable and have a very high T cell count and I expect to be around for a very long time. I’m not at death’s door, and my KS is not like KS in 1991. There’s really no way to articulate that easily.”
Taking AIDS off the table may reduce stigma
“AIDS is a word that none of us wanted to hear for so many years,” said Matt Sharp, a long-term survivor and HIV activist in San Francisco. “It was such a dreaded, horrifying word. I’m at the point where I almost think, ‘Wouldn’t it be great if we didn’t have to use that word anymore?’”
One benefit to letting go of the term ‘AIDS’ may be that it would change how people think about HIV in general.
“There’s so much stigma attached to the word ‘AIDS,’ said Crisostomo. “Because of how we talk about things like, ‘the AIDS epidemic.’ In terms of reducing stigma, it might be helpful to have everyone living with HIV come together—to be one population. In a lot of ways, doing away with diagnosing ‘AIDS’ would show the progress we’re making in HIV treatment.”
“I think the time has come,” said Sharp. “Because the standard of care has changed. And with that, sometimes the names of things change, too.”
Do we lose our history without AIDS?
People who have lived through epidemic may be particularly sensitive to changes in language that feel discounting or marginalizing, said Crisostomo.
“The AIDS epidemic was not just about the loss of people. People lost jobs, people lost housing, people lost their identities. Deciding to simply get rid of the term ‘AIDS,’ well, that could feel like a loss as well. People might equate, ‘We’re getting rid of AIDS,’ with, ‘We’re getting rid of me.’ They might think, ‘Once again, I don’t matter.’”
A diagnosis of ‘AIDS’ can by symbolic, said Sharp. “There may be some people that hold onto it as a sort of badge of honor.”
“There’s history, and identity wrapped up in the word ‘AIDS,’ said Crisostomo. “As an emotional issue, some people see it as a mark of courage to carry that diagnosis. It’s an indicator that you’ve lived through a certain time in the epidemic.”
“I think that maybe—subconsciously—I feel like AIDS is part of my identity. It’s certainly part of the anxiety I have. AIDS does tie me to history—and none of it is good, if we’re talking about way back,” said Jonathan. “When I say I have AIDS, people look at me and there’s no understanding on their part of how that could possibly be the case. They’re holding onto the 1980s and 1990s image of what that word means. I almost need a new term—one that reflects where we are now. I don’t want to take away the severity of what I’m dealing with, and there’s still so much unknown.”
1 Not his real name