Is It Time to Retire "AIDS" from HIV/AIDS?

Have Advances in Treatment and Prevention Made the Term Obsolete?

Image Credit: Ramsey Jehm

The term HIV/AIDS is used to define the cause-and-effect relationship between the human immunodeficiency virus (HIV) and the specific illnesses or conditions that can arise as a result of prolonged infection (AIDS, or acquired immune deficiency syndrome).

It is used to provide clarity to those who may not understand that infection does not necessarily mean illness—or, more specifically, terminal illness—and that's important.

After all, what public health educator hasn't uttered the phrase "HIV is the virus that causes AIDS" or reminded people that "HIV and AIDS are not the same thing"? It has become the mantra of HIV education.

But what does AIDS actually mean today, outside of the context of clinical classification? And why is it one of the only conditions in which the stage of disease is given an entirely different name?

Certainly, we don't do this with cancer or sexually transmitted diseases like syphilis. Neither do we do it with chronic progressive infections such hepatitis C or advancing illnesses such as Parkinson's or Alzheimer's. These are all simply classified by stage in order to provide clinicians a clearer road map for treatment.

Changing Times, Changing Perspectives

The truth is that HIV is a very different disease than it was 35 years ago and that AIDS means something entirely different than it did back in 1982 when the classification was first coined.

Today, people with HIV can live full, healthy lives if provided timely treatment. And even if a person progresses to the clinical definition of AIDS, the outcomes are far improved to what they were just ten years ago.

The fact is this: the word "AIDS" has gravity. It carries a weight with both patients and a public who more often than not infer it to mean terminal.

It’s one thing, for example, to say "John has HIV" and another to say "John has AIDS."

And it’s not just semantics we're talking. Even from the point of view of clinical practice, the word is almost entirely absent from the dialogue, an anachronism rarely used outside of public health education or headline-grabbing news.

Is it finally time to retire the word "AIDS" and simply refer to the disease as HIV? A great many people believe that it is.

The Origins of the HIV/AIDS Classification

There are certainly people who will remember a time when "AIDS" wasn't always "AIDS," but rather one of several terms bandied about in the public health community.

In the earliest days of the crisis, many in the media had deemed it the "gay cancer" after the first cluster of infections was reported in gay men in Southern California and New York City. Initially coined GRID (or gay-related immune deficiency), the term was quickly displaced when other populations began to present with similar, rare conditions.

At one stage, the Centers of Disease Control (CDC) proposed the term "community-acquired immune disorder" and, more confoundingly, the "4-H disease" (referring to the homosexuals, hemophiliacs, heroin users, and Haitians afflicted by the still-unknown disorder).

It was only in September 1982 that the CDC decided upon the term "AIDS" to describe a disease with "no known cause for diminished resistance."

It wouldn't be until a full year later that scientists in the U.S. and France would independently discover the cause of the disease, a novel retrovirus eventually christened "HIV" in 1986. By then, AIDS had become so embedded in the public consciousness that it was decided that "HIV/AIDS" would provide greater clarity as to the cause and consequence of "full-blown" HIV infection.

The term has stayed with us to this day.

Beyond Medicine: the Importance of the AIDS Classification

Beyond clinical treatment and disease surveillance, the AIDS classification was used in the early epidemic as a means by which to streamline government disability benefits to patients who, at the time of such diagnoses, had the average life expectancy of just 18 months.

It was considered an important classification from that aspect as the number of deaths in the U.S. had risen to its highest level by 1992 (234,255 deaths out of 360,909 AIDS diagnoses) and had become the overall 8th leading cause of death in the span of just ten years.

But all of that changed by 1996 with the introduction of highly active antiretroviral therapy (HAART), which reversed the mortality rate dramatically. With life expectancies increasing four-fold over the course of the next decade, an AIDS diagnosis could no longer serve as the sole evidence of disability.

The times and understanding of the disease were already fast changing.

Fighting Denial: HIV/AIDS as Political Tool

While many countries were experiencing the benefits of newer generation antiretroviral drugs by the late 1990s, developing countries—many of them in Sub-Saharan Africa—were only just beginning to grapple with their burgeoning epidemics.

Among them, South Africa stood apart politically under the leadership of then-President Thabo Mbeki by questioning whether HIV was, in fact, the cause of AIDS, oftentimes suggesting that it was simply the fabrication of "Western" science.

In fact, at the opening of the 13th International AIDS Conference in Durban, South Africa, Mbeki went so far as to declare to a packed audience of scientists and delegates: "It seems to me that we could not blame everything on a single virus."

It was only a day later that the American researcher David Ho, in a presentation to conference delegates, pointed to the first electron microscopic image of HIV and replied, "Ladies and gentlemen, this is the cause of AIDS."

Despite a flood of global criticism, the still-resistant Mbeki would only refer to the disease as “HIV and AIDS,” suggesting that they were somehow unrelated. In response, South African clinicians adamantly emphasized on the use of "HIV/AIDS" in all literature and speeches as a means of protest to the government's long-standing inaction and denial.

Since the forced resignation of Mbeki from office in 2008, the turnaround in government policy has been enormous, with the country now boasting the largest antiretroviral program in the world.

Yet despite these gains, the repercussions of years of debate are still being felt, with high levels of misconception and doubt about HIV—including the likelihood of illness and death—essentially cementing HIV and AIDS as one and the same thing.

Rationale for Eliminating the Word "AIDS"

While it would be wrong to suggest that the removal of "AIDS” from the public dialogue would alone change these attitudes, it doesn't necessarily come without precedence. Change has been the one thing that has defined this epidemic, allowing us to continually reflect how we treat and see the disease in a way that provides greater clarity and social acceptance.

The use of "AIDS victim" in the 1980s, for example, eventually gave way to “AIDS survivor” in the 1990s, which eventually led to the moniker PLWH (people living with HIV), the term we commonly embrace today. And it's not just semantics that drove this evolution; it was the acknowledgment that you no longer just survived the disease but that you could live with it, well and healthy, for many years and even decades.

It's not the only such example. Consider that:

  • In HIV sciences, the term HAART was eventually replaced by cART (combination antiretroviral therapy) when it was decided that the drugs were more than just "highly active."  Today, the simpler ART (antiretroviral therapy) is used in most clinical settings.
     
  • In epidemiology, we no longer use "gay or bisexual" when referring to this population of at-risk men. Instead, we use "men who have sex with men" (MSM) to more accurately describe the route of infection rather than how a person may or may not refer to himself. The same applies to the terms "drug addict and "prostitute," which have now both been replaced with "injecting drug user" and "commercial sex worker."
     
  • In HIV prevention, the term "unsafe sex" eventually gave way to "unprotected sex" which was then replaced by "condomless sex," the term approved by the CDC in 2014 to reflect the advances in pre-exposure prophylaxis (PrEP) and other biomedical prevention strategies.

With each change in terminology came more than just a tightening of definitions; they served to remove the judgment labels and other biases that might add to the public stigma ​or doubt.

Many have begun to argue that we do the same with "AIDS"—that we further normalize the disease by placing it solely within the context of a chronic infection, one which is wholly treatable and, like other transmittable infections, can advance in stages if left untreated. Retiring the word "AIDS" would be the first step to achieving this.

Whether these changes would be embraced by public health officials is uncertain. Some might argue that changing the dialogue now, after ingraining in the public consciousness for over 30 years, would only serve to undermine prevention strategies moving forward—and at a time when  infection rates continue to stagnate in the U.S.

The one thing that is certain is that we are well past the days when we should be using "HIV is not a death sentence" as a public health message, either directly or inherently. And that's where semantics are important. By failing to acknowledge the antecedence of a term like HIV/AIDS—where it came from, why it was used—we keep it frozen within that context. And that's a problem.

If in doubt, ask yourself a simple question:

What does AIDS mean to you?

Sources:

Gilman, S. "AIDS and Syphilis: The Iconography of a Disease." AIDS: Cultural Analysis/Cultural Activism. Published by MIT Press; Winter 1987; 43:87-107.

Centers for Disease Control and Prevention (CDC). "Current Trends Update on Acquired Immune Deficiency Syndrome – United States." Morbidity and Mortality Weekly Report (MMWR). September 24, 1982; 31(37):507-508,513-514.

CDC. "1993 Revised Classification System for HIV Infection and Expanded Surveillance Case Definition for AIDS Among Adolescents and Adults." MMWR. December 18, 1992; 1(RR-17).

CDC. "Current Trend Mortality Patterns – United States, 1992." MMWR. December 16, 1994; 43(49):916-920.

amfAR, the Foundation for AIDS Research. "Thirty Years of HIV//AIDS: Snapshots of an Epidemic." Washington, D.C.

Harrison, K.; Song, R.; and Zhang, X. "Life Expectancy After HIV Diagnosis Based on National HIV Surveillance Data From 25 States,United States." Journal of Acquired Immune Deficiency Virus. January 1, 2010; 53(1):124-130.

Public Broadcasting Service. "Frontline: The Age of AIDS – Interview David Ho." Broadcast on May 30, 2004; online transcript.

Speech of the President of South Africa, Thabo Mbeki, at the Opening Session of the 13th International AIDS Conference. South African Government Online; July 9, 2000.

McGreal, C. "Mbeki admits he is still Aids dissident six year on." The Guardian. November 6, 2007.

Bogart, L.; Skinner, D.; Weinhardt, L.; et al. "HIV/AIDS misconceptions may be associated with condom use among black South Africans: an exploratory analysis." African Journal of Research. June 22, 2011; 10(2):182-187.

Kaiser Family Foundation. "CDC Shifts Language from 'Unprotected Sex' to 'Condomless Sex. '" Washington, D.C.; published February 25, 2014.

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