40 years of HIV: From Fear and Stigma to Effective Treatment
But 12 million people globally lack access to treatment
The occurrence of pneumocystosis in these five previously healthy individuals without a clinically apparent underlying immunodeficiency is unusual,” the Centers for Disease Control and Prevention (CDC) reported on June 5, 1981.1
Indeed, it was. What would become the ongoing human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) pandemic began 40 years ago, as of June 5, 2021. Only a month later in 1981, the CDC reported gay men in New York and California with an aggressive cancer called Kaposi sarcoma.2
“The first U.S. cases in women were reported later that same year,” Rochelle Walensky, MD, MPH, director of the CDC said in a statement. “Over the next five years, 29,000 cases of HIV/AIDS were reported in the U.S. With no effective treatment available for 15 years, death was the only certain outcome.”
As a young physician, Walensky saw patients dying of AIDS when the medical community could provide little but supportive care.
“The epidemic raged in the halls of the hospitals and the streets of Baltimore where I worked,” she said. “Fifty-thousand people were dying each year. And then we reached a turning point. In December 1995 and in 1996, the FDA (Food and Drug Administration) authorized the first combinations of highly effective treatment. My message at the bedside changed: You can live.”
A constantly mutating retrovirus that attacks the immune system directly, HIV was isolated as the cause of AIDS in 1984. There was initial optimism that a vaccine would be forthcoming, but it was not to be. The quest continues, with multimillions of dollars of research ongoing.
“HIV challenges the standard vaccine approaches first and foremost because, unlike diseases such as measles and chickenpox, no one naturally recovers from infection with HIV,” researchers note.3 “Without a model for natural immunity, researchers do not have a way to identify an immune response that would be effective against HIV, and thus developing an HIV vaccine is much more difficult.”
HIV incidence decreased by 73% in 2019 from the 130,400 reported in 1984, but about 70% of cases today are occurring in Black and Hispanic people, according to the CDC.
“The proportion of infections attributed to heterosexual contact was higher in 2019 (22%) than in 1981 (2%),” the CDC reported.4 “[T]he proportion of infections among persons who inject drugs was lower in 2019 (7%) than in 1981 (22%).”
“Despite our extraordinary progress, the HIV epidemic in this country continues, and we still have much work to do” Walensky said. “It is unacceptable that 37,000 people are newly diagnosed with HIV each year in the United States. Disparities in diagnoses and access to treatment and prevention persist. More than half of new HIV infections are in the South, and new infections remain high among transgender women, people who inject drugs, and Black/African American and Hispanic/Latino gay and bisexual men.”
The CDC has come a long way since that first 1981 report, when it described the five men as “active homosexuals” — in the first sentence. Thus, began the long-standing stigma against those with “gay cancer” or the “gay plague.” This stigma further undermined the tepid federal response. It bears repeating the well-documented observation that then-President Ronald Regan did not say the word AIDS publicly until four years into the pandemic.
Much has been gained in research and treatment, but it is hard to see the glass half-full when there are about 34 million dead worldwide since that first report of five hospitalized men in Los Angeles.
With the amazing effectiveness of antiretroviral therapies, people with HIV/AIDS can live long lives similar to their uninfected peers. Still, in some sense, HIV remains much as it began, a story of the haves and the have nots. Some infected people are living normal lives with almost complete viral suppression; others wither for the lack of that same treatment.
A ‘Massive Failure’
Monica Gandhi, MD, an HIV specialist at UC San Francisco, is passionate about the discrepancy between those who can access care and those who still die of AIDS, untreated. “There are 38 million people living with HIV worldwide and only 26 million of them have access to antiviral therapy,” she tells Hospital Infection Control & Prevention. “I know that is called a success — I call that a total failure. Knowing that in the world we have 12 million people who don’t have HIV therapy — that we have had since 1996 — I call that a massive failure.”
There are great disparities in populations with infectious diseases, much as we are seeing now with COVID-19, Gandhi says. Even in the United States, where treatment is available, “the people who are doing poorly despite having access are those in overlapping pandemics of homelessness, mental illness, and now COVID,” she says. “Those are a lot of the people I treat.”
Some attribute the sudden global rise of HIV to a sexual revolution that included little fear of sexually transmitted diseases and a lack of efforts to prevent them. Now it is known that unprotected anal intercourse greatly increases the risk of HIV transmission in both heterosexuals and men who have sex with men.4
The reuse of needles also contributed to the spread of HIV, particularly in the early years of the epidemic. Injection drug use still is a risk factor, but medical advances largely have stopped transmission from the blood supply and from mother to infant — at least for those who have access to care.
Panic and Provocateurs
It is well to remember that driving the fear and stigma of HIV in the early 1980s was that the transmission routes were not clearly established. Some provocateurs said it was being spread by casual contact, an unnerving consideration for what was then a terminal disease.
Healthcare workers worked at mortal risk, with some dying after needlesticks or other sharps injuries that exposed them to patient blood. Blood and body fluid precautions were implemented, first as “universal” and later “standard” precautions.
With all the current discussion and controversy about the origins of SARS-CoV-2, note also that HIV has long been questioned as a manmade virus.
“Throughout the history of AIDS, that has been brought up multiple times in the context of oppression and racism,” Gandhi says. “I have been studying AIDS a long time. No one has been able to create a virus.”
These pandemic viruses arise out of nature, she says. This pattern likely is to continue as humans encroach on animal habitats or unsafely farm them in a time of rapid global air travel.
HIV arose in Africa in the last century and its natural reservoir is Pan t. troglodyte chimpanzees in Cameroon and the Congo, researchers report. Slaughtered for bushmeat, these viruses — including related strains of simian immunodeficiency virus — in chimpanzee blood found their way into humans, virus hunter Nathan Wolfe, PhD, has said. (See Hospital Infection Control & Prevention, July 2013.)
Much as with COVID-19, the initial response to AIDS has been criticized heavily. “This public health crisis triggered unprecedented activism that drove support for the thousands of people dying from the virus each year,” Walensky said.
- Centers for Disease Control (CDC). Pneumocystis pneumonia — Los Angeles. MMWR Morb Mortal Wkly Rep 1981;30:250-252.
- Centers for Disease Control (CDC). Kaposi’s sarcoma and pneumocystis pneumonia among homosexual men — New York City and California. MMWR Morb Mortal Wkly Rep 1981;30:305-308
- The History of Vaccines: An educational resource by the College of Physicians of Philadelphia. The development of HIV vaccines. Last updated Jan. 10, 2018. https://ftp.historyofvaccines.org/multilanguage/content/articles/development-hiv-vaccines
- Bosh KA, Hall HI, Eastham L, et al. Estimated annual number of HIV infections ? United States, 1981-2019. MMWR Morb Mortal Wkly Rep 2021;70:801-806.
- Baggaley RF, White RG, Boily MC. HIV transmission risk through anal intercourse: Systematic review, meta-analysis and implications for HIV prevention. Int J Epidemiol 2010;39:1048-1063.
- Keele BF, Van Heuverswyn FV, Li Y, et al. Chimpanzee reservoirs of pandemic and nonpandemic HIV-1. Science 2006;313:523-526.
A constantly mutating retrovirus that attacks the immune system directly, human immunodeficiency virus was isolated as the cause of acquired immunodeficiency syndrome in 1984. There was initial optimism that a vaccine would be forthcoming, but it was not to be.
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