never forget

This is how the world first learned about AIDS 40 years ago today

HIV (in green) on a lymphocyte cell
HIV (in green) on a lymphocyte cell (Photo: CDC/Public Domain)

Doctors in California were among those to first notice something was amiss. They began to see patients, mostly gay men, being struck down with a form of pneumonia (PCP) normally only seen in people who have a seriously weakened immune system.

They notified the Center for Disease Control (CDC), and today marks the 40th anniversary of the first scientific report on the then unexplained new disease pattern.

In the June 5, 1981 edition of its Morbidity and Mortality Weekly Report, the CDC reported:

“In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California. Two of the patients died. All 5 patients had laboratory-confirmed previous or current cytomegalovirus (CMV) infection and candidal mucosal infection.”

The CDC went on to give details about each case, noting that one had died just a month previously.

“Patient 1: A previously healthy 33-year-old man developed P. carinii pneumonia and oral mucosal candidiasis in March 1981 after a 2-month history of fever associated with elevated liver enzymes, leukopenia, and CMV viruria.

“The patient’s condition deteriorated despite courses of treatment with trimethoprim-sulfamethoxazole (TMP/SMX), pentamidine, and acyclovir. He died May 3.”

Another had died previous to this. The 29-year-old man developed PCP in February 1981.

“He had had Hodgkin’s disease 3 years earlier but had been successfully treated with radiation therapy alone. He did not improve after being given intravenous TMP/SMX and corticosteroids and died in March. Postmortem examination showed no evidence of Hodgkin’s disease, but P. carinii and CMV were found in lung tissue.”

On the same day as that report came out, a dermatologist in New York, Dr. Alvin Friedman-Kien, called the CDC to report seeing several gay men with Kaposi’s Sarcoma (KS). Again, this is a rare skin condition usually only seen in people with compromised immune systems.

Following these first reported cases, the number of gay men falling ill began to increase rapidly. Not only were gay men developing PCP and KS, but other conditions linked to having a weakened immune system.

Around a month later, the Bay Area Reporter in San Francisco reported on ‘Gay Men’s Pneumonia,’ and recommended men with shortness of breath see their physician.

At first, the disease was dubbed GRID, or Gay-Related Immune Disease. However, this was quickly dropped when it became apparent that others (including hemophiliacs) were also displaying signs of the same illness. The name AIDS was adopted from mid-1982 onwards.

The Human Immunodeficiency Virus (HIV) – the cause of AIDS – was identified in 1984, with an effective diagnostic test coming shortly after.

However, it’s not until the mid-90s that effective treatment for HIV was developed, with the advent of antiretroviral treatment.

Related: 10 amazing health clinics helping us end the HIV epidemic

Today, HIV has become a manageable condition. Those diagnosed are usually placed immediately on treatment to make them viral undetectable. This means they cannot pass HIV on to others. As long as they continue to take their daily medication, they are unlikely to fall ill from the virus.

PrEP medication can be taken to prevent someone from acquiring HIV, and the United States has set the goal of ending the HIV epidemic by 2030. However, those living with the virus continue to face great stigma.

Since the CDC first reported on AIDS 40 years ago, more than 700,000 people have died of HIV-related illnesses in the US.

CDC Director Rochelle P. Walensky, MD, MPH, issued a statement on Thursday to mark today’s somber milestone.

“Forty years ago, CDC first reported on Pneumocystis pneumonia in five previously healthy young gay men in Los Angeles.

“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.

“This public health crisis triggered unprecedented activism that drove support for the thousands of people dying from the virus each year.

“By 1995, when I was a newly trained physician, hospitals across the country were filled with young men and women dying of AIDS.

“In my first years, all I had to give my patients were my outstretched hand and my presence at their bedside. The epidemic raged in the halls of the hospitals and the streets of Baltimore where I worked. Fifty-thousand people were dying each year. And then we reached a turning point. In December 1995 and in 1996, FDA authorized the first combinations of highly effective treatments. My message at the bedside changed: you can live.

“Today, looking back, I know that we have come so far. A CDC study published today in the MMWR reports that new annual HIV infections decreased 73% from 1981 to 2019.”

Related: Gay men recently diagnosed with HIV speak out about the stigma they face

However, Walensky says much more needs still needs to be done.

“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. Over 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.”

She says the US must continue on its course of ending the HIV epidemic by 2030.

“In doing so, we will honor all of those touched by this virus – from those five cases initially reported on June 5, 1981, to the 32 million people who have died from AIDS-related illness globally, including 730,000 people in this country, and so many more living with and fighting against the virus and its associated stigma every single day.”

Her words were echoed by Kelsey Louie, the CEO of GMHC, which was first formed in 1982 in New York and is the oldest non-government organization to fight HIV in the US.

“HIV/AIDS is no longer a death sentence. Yet we still have no vaccine and no cure. The epidemic also continues to concentrate in communities of color who are disproportionately affected by COVID-19 and other infectious diseases, health disparities, and systemic inequities. We can end the epidemic in our lifetimes. But we must recommit ourselves to what it will take to accomplish that goal from prevention to care to advocacy.”

Related: President Biden vowed to end the HIV epidemic by 2025 – but how realistic is that goal?