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Can We Say Goodbye to the Word AIDS?

, by Emily Land

Goodbye AIDSWhat 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.

Hyman Scott

Hyman Scott, MD

“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.

Vince Crisostomo

Vince Crisostomo

“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


12 Responses to Can We Say Goodbye to the Word AIDS?

  1. harley cox says:

    I have no issue with AIDS as a label for me. My Immune System is Deficient and it is a result of an Acquired infection.
    There is nothing inaccurate about that description.

    Te fact that I have had an undetectable viral load for years and am very unlikely to transmit HIV should not be buried by deciding I’m not AIDSy enough.

    I’m getting more and more angry about the cultural genocide being committed by social scientists and linguists who want to deny my existence, and the reality of my existence, and my good friends’ ongoing survival against genocidal attempts by the pricks who decide funding and public discourse.
    We live with AIDS and no amount of changing language changes our or the world’s reality.

  2. harley cox says:

    Please don’t get me wrong. I’m a very strong advocate for treatment, but I get twitchy when well meaning people try to deny my reality.

    I don’t want anyone to get to the stage I had allowed myself to get to. HIV is very treatable, Get yourself tested, and get on treatments.

    I’ve got quite good health despite having low cd4 counts. I know this is a very different situation to someone with similar cd4 counts and no treatment. I’d be dead without treatment, but I live a full and engaged life with the help of some pills.

    I also am very impressed with the science of treatment as prevention TasP.

  3. Tracey Brown says:

    I think changing the name negates the lives and deaths of all who had, died, or now live with this disease.

  4. CJ Stobinski says:

    I really enjoyed this article, however, as a State-certified HIV Education Trainer, I find it ironic that you are exploring the ins and outs of doing away with the word AIDS, when you are using other outdated terminology as well. Opportunistic Infections have been known as AIDS Indicator Illnesses or AIDS Defining Illnesses for years now. I’m sure people still use OI’s, as you have above, but the terminology has been updated to reduce stigma and to reflect science. I personally don’t refer to myself as HIV “positive” because I use person first language. So yes, I vote lets update ALL the language, because living with HIV does not have to be how it used to anymore, but at the same time we owe honor to those lost and particularly long-time survivors.

  5. Pat Johnson - Austin, Texas says:

    I must agree with other comments on this issue. I was told recently by my doctor, I am the longest living person in Travis County, Texas to survive the AIDS Epidemic for 34 years, 9 months and 17 days.

    I believe changing AIDS to HIV Stage 3 would be a mistake, as some would not even get tested because of the belief they would never get AIDS OIs.

    I have no problems with being diagnosed with the term AIDS, as it a clear indication I am a very sick person. I may look like I am dying on the outside, but the inside tells a different story, with chronic medical problems, that HIV would not caused. I know I am going to die, not because of AIDS, but because of other medical problems, caused by AIDS treatment.

    Therefore, I am totally against changing the term, as once the CD4 falls below 200, as in my case in 2001 when the CD4 was at 0, you never leave the AIDS status, just like our social security number. The way we lose both is when we die.

  6. Jake says:

    I just want to say how grateful for the information and th sense of community I find with the people of San Francisco. Unlike Vancouver, BC where I live, here does not seem to be the same sense of predation that I find at the local Positive Living Society of BC. If I need sexual harassment, bareback sex, or acquire meth, or gossip, there is no better place than Positive Living Society of BC. I have been HIV positive since the early 80’s and was symptomatic before testing became available in 1984 and at a time when AIDS Service Organizations in Vancouver were manned by people living with HIV/AIDS, before ASO’s in Vancouver started accepting monies from governments and drug companies.

    In BC there is a huge push to get everyone on meds. The BC government funded a study hat was conducted in Vancouver by the BC Centre for Excellence that linked the progression of the morbidity and mortality of people who are impoverished and living with HIV. This study was published in the British Medical Journal the Lancet in 1985.

    People who are living with HIV/AIDS in British Columbia do have our meds paid for as do other Canadians with other ailments. These benefits, like our disability benefits are paid into through our taxes

    The local provincial government is an ultra right wing conservative group of rebranded former Socred members.

    But let’s state a well known fact. Doctors are gods and free of ego. That said, Julio Montaner of the BC Centre for Excellence has a very cozy relationship with this government and has congratulated the ultra right wing premier Christy Clark despite the fact that people living with HIV/AIDS live wel below the poverty line and are worse off financially today in the province of BC, and in particular the second most expensive city in the world to live in, Vancouver BC.

    Julio has been pushing for prep and while this has been beneficial for allowing gay men to continue having unprotected sex, while those of us like myself who are long term survivors and who llive with secondary and/or more disabilities and with no or very little hope of returning to work, are treated by the government as if we were receiving charity and not the benefits we paid into.

    As a long term survivor who has also been on experimental drug therapies from the get go AZT and onward., at a time when very little was known about the function of the immune system I am distraught by how those of us who were even more unfortunate to have more than one disability are being victimized by the local BC Liberal government’s WAR ON THE POOR. Instead of using this study to alleviate the suffering of people living with HIV/AIDS the government has used this information to make life even more unbearable and escalate the isolation we are subjected to.

    According a to Statistics Canada approximately 110 people die each day due to lack of access to food and housing. If a plane had crashed and that many people died the media would be all over it. Poverty has a nice way of solving itself as people self medicate and commit suicide. I know of three people who have hung hem selves in beautiful Stanley Park.

    My concern is why the BC Centre for Excellence refrains from criticizing the government and if physicians here are accepting monies and “gifts” from drug companies.

    I miss the days when people living with HIV actually manned these organizations rather than heterosexual unionized paid employees who are not infected with HIV and as a result ties the hands of AIDS Service Organizations when it comes to getting rid of them.
    AIDS Vancouver however has been a fantastic organization for support unlike the secretive Positive Living Society of BC. Just wondering how things were south of the border.

  7. Mitchell Mathias says:

    We do a huge disservice to our departed friends by taking out the acronym AIDS.

  8. Melody Sosa says:

    I have been suffering hardship from HIV/AIDS since 7yrs now, and i happen to have 2 kids for my husband, and now we cannot proceed to have another kids all because of my disease and now i have do all what a human like i and my husband can do just to get my disease healed, i have went to several places to seek for help not even one person could ever help, until i melt a comment on the daily news paper that was commented by Desmond about how this powerful traditional doctor help him get cured of the disease (HIV-AIDS) ” my fellow beloved” i firstly taught having a help from a spiritual traditional healer was a wrong idea, but i think of these, will i continue to stress on these disease all day when i have someone to help me save my life?” so i gather all my faiths and put in all interest to contact him through his Email address at hivcurecenter@gmail.com , so after i have mailed him of helping get my disease cured, he respond to me fast as possible that i should not be afraid, that he is a truthful and powerful doctor which i firstly claimed him to be. So after all set has been done, he promise me that i will be healed but on a condition that i provide him some items and obeyed all his oracle said. I did all by accepting his oracles fact and only to see that after some weeks of taking his herbal medicine i notice some changes in my body system and i went for check up the day he ask me to go for check up to confirm if the sickness was still there,to my greatest surprise i could not find any sickness in my body i was first shocked and later arise to be the happiest woman on earth after i have concluded my final test on the hospital by my doctor that i am now HIV- Negative. My papers for check are with me and now i am happy and glad for his miraculous help and power. With these i must tell everyone who might seek for any help, either for HIV cure or much more to contact him now at these following email now, Email: hivcurecenter@gmail.com

  9. Terry says:

    I have been HIV positive since at least 1995, probably longer. Having gone off of the meds twice over those years, and nearly dying from Toxoplasmosis in 2009, with a CD4 count of 15, I was diagnosed with AIDS early on.

    I went back on the meds in the Fall of 2012 and my Viral load became undetectable shortly thereafter and has remained so. However, my CD4 count has stayed below 200 until recently, when it went above to 223. Last lab work it was back down to 198.

    I am healthy, have no health issues. Work out at a gym three days a week, eat very well, am at my ‘normal’ weight, etc.

    I wish that the AIDS diagnosis would change once the CD4 count goes above 200. Not really sure how that diagnosis affects the assistance of funding of meds, etc., as I get assistance from ADAP for that. Could be because of my “AIDS” diagnosis? Not sure.

    I understand some people’s feelings about dishonoring those who have died or long term survivors, such as myself. However, as a long term survivor, the stigma and discrimination, particularly among other gay men, has been the worse part of this disease for me. On the meds, my life is pretty normal EXCEPT for the fear and stigma and discrimination that I get constantly from other gay folks. I have never received such inhumane treatment from ‘straight’ folks. It’s very interesting. AIDS has definitely splintered and divided the gay community. It’s sad. Hopefully, PrEP will change some of that and I think that doing away with the AIDS diagnosis might help that. Who knows. Something has to give.

  10. Mark Janes says:

    I’m going to be blunt: I didn’t survive 21 years with an AIDS diagnosis, and watch too many other wonderful men die brutal horrible deaths from the opportunistic infections it allows to multiply, to sit silently by while well-meaning doctors and others attempt to use language to erase our very existence. People are STILL DYING from AIDS; when that day is passed maybe then we can talk about changing terminology. For now I believe advanced HIV should still be called AIDS.