As Monkeypox Spreads, Longtime Activists Say Officials Haven’t Learned Lessons from the AIDS Crisis

As Monkeypox Spreads, Longtime Activists Say Officials Haven’t Learned Lessons from the AIDS Crisis

By Matt Lavietes, NBC News

As cases of monkeypox surge around the globe, four pioneers of the AIDS activist movement watch in awe and with a sense of nostalgia.

Some of the similarities between the two viruses speak for themselves. Like the HIV strain that started the AIDS pandemic in the late 1970s, the current monkeypox outbreak has emerged from sub-Saharan Africa and has been found overwhelmingly in men who have sex with men who live in the world’s metropolises. And while epidemiologists have not reached a complete understanding of how the current outbreak of monkeypox spreads, recent research points to sexual transmission.

Four pioneering AIDS activists of the 1980s and ‘90s contend that there are other, consequential yet less obvious parallels playing out in real-time.

As in the early days of the AIDS crisis, they argue, government messaging around the outbreak has been flawed, gay men have been blindsided and public health officials have failed to defeat a severe disease plaguing the LGBTQ community.

“It feels like déjà vu,” said gay rights activist Peter Tatchell, who was a leading member of the Gay Liberation Front in the United Kingdom. “The lessons from the AIDS crisis and Covid have clearly not been learned.”

Public health officials around the world were slow to combat AIDS when it first began to emerge in men who have sex with men during the late 1970s. It wasn’t until June 5, 1981, that the United States released the world’s first government report on the infectious disease in the Morbidity and Mortality Weekly Report, a government bulletin on perplexing disease cases.

“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,” the report read. “Two of the patients died.”

Three years later, the U.S. government announced the development of an AIDS test, in addition to a vaccine, which never came to fruition. By 1985, an estimated 12,000 Americans had died of the disease.

Similarly, activists argue that the global response to tame monkeypox has been too slow to curb ballooning case numbers — more than 20,500 cases of the current monkeypox outbreak have been reported globally across 77 countries and territories since the start of May, according to the Centers for Disease Control and Prevention.

No one has died from monkeypox outside the 11 African nations where the infectious disease has become endemic since it was discovered in 1970. However, a substantial proportion of patients infected with monkeypox have been hospitalized for severe pain caused by pimple-like sores that commonly develop.

Since the first cases were discovered in May, the United States has distributed nearly 200,000 Jynneos vaccines — a two-dose vaccine to prevent smallpox and monkeypox — to the most at-risk population, which falls far short of its roughly 3.8 million gay men. In France, only an estimated 6,000 people have been vaccinated across more than 100 vaccine centers in recent weeks, French Minister of Social Affairs and Health François Braun said on Monday. And in the United Kingdom, health officials ordered an additional 100,000 vaccine doses last week to keep up with burgeoning demand.

Last Saturday, the World Health Organization declared monkeypox a public health emergency of international concern, a designation reserved for the most threatening global disease outbreaks, after initially forgoing to do so last month. More than two months after the first U.S. case of monkeypox was detected in mid-May, on Thursday public health officials in New York City issued a declaration that the infectious disease posed an imminent threat to public health, and officials in San Francisco declared a state of emergency.

“What’s interesting is that many of the scientists and clinicians who were trained during the AIDS epidemic or were there at the beginning, people like Tony Fauci, know this history, but the response to monkeypox has been alarmingly slow and chaotic,” said Gregg Gonsalves, who joined Act Up — the leading group that fought for action to combat AIDS — in 1990 and is now a professor of epidemiology at the Yale School of Public Health. “As an individual, it’s like, ‘Three strikes you’re out, man.’ HIV, Covid and now monkeypox? How many times can you make the same mistakes over and over again?”

Representatives from the National Institute of Allergy and Infectious Diseases, which Dr. Anthony Fauci has directed since 1984, and officials from the White House, where Fauci serves as the chief medical adviser to the president, did not immediately respond to NBC News’ requests for comment.

Images of men waiting in long lines outside clinics around the world to get vaccinated, technical issues with online vaccine portals and reports that accused the U.S. government of developing a “wait-and-see” response to the outbreak — reportedly calling for shipments of vaccines only as cases surged in the last handful of weeks — have piled on to activists’ fears that the public health response to monkeypox is shaping up to be a repeat of its flawed strategy to combat AIDS.

Although the virus started spreading in May, the U.S. didn’t order more doses of the monkeypox vaccine to add to its stockpile until June. Regulators also had not finished inspecting a key Denmark facility manufacturing monkeypox vaccines until July, leaving 1.1 million ready-to-distribute doses stuck in Europe.

“Just like during the AIDS pandemic, it seems that some governments care very little so long as monkeypox is just affecting men who have sex with men,” said Tatchell, who was turned away from a hospital in London that had run out of monkeypox vaccine last Sunday. “What other explanation can there be? Governments should have been rolling out emergency vaccination programs for gay and bisexual men two or three weeks ago.”

Some veteran AIDS activists also argue that as during the AIDS crisis, the messaging to combat monkeypox has not been tailored enough to reach the LGBTQ community.

Ron Goldberg, an early AIDS activist who joined Act Up in 1987, points to the “America Responds to AIDS” public service announcement campaign, which the government launched at the height of the crisis in the late 1980s. Many of the commercials featured heterosexual couples and displayed messages including “AIDS Is Everyone’s Problem.”

“At that time, they were so afraid of talking about gay sex, or anything like that, they had to bland out the message when they were trying to give some information,” Goldberg said. “If it’s happening within a certain population, you have to direct your messaging to that certain population.”

Activists have largely applauded public health officials’ efforts to not link monkeypox directly to the LGBTQ community — as many believe they did with AIDS — and thereby create stigma. However, some argue that repeated statements from public health officials that “anyone can get monkeypox” mirrors AIDS messaging that “anyone can get the AIDS virus” and also circumvents efforts to alert the demographic most at risk.

Research overwhelmingly suggests that the current outbreak of monkeypox is being driven overwhelmingly by men who have sex with men. A study in the New England Journal of Medicine published last week found that of the 528 cases of monkeypox researchers analyzed, 98% were found in men who identified as gay or bisexual. Another recent report by the the British Health Security Agency finding that of the 699 monkeypox cases for which there was available information, 97% were in gay, bisexual or other men who have sex with men.

“The numbers are there,” said Didier Lastrade, who founded the first French chapter of Act Up in 1989. “We shouldn’t shy away from this. … We’re big people, we’re grown-ups, we can take it. The stigmatization is happening either way.”

On Thursday, the WHO recommended that gay and bisexual men limit their number of sexual partners to protect themselves from monkeypox and contain its spread.

But compiled with two years of pandemic isolation and big summer events, such as last weekend’s annual Pines Party on Fire Island, some activists fear it will be difficult to get gay and bisexual men to curtail their sexual behaviors.

“You want to be able to reach people in their 20s and 30s and say, ‘Look, this is no joke. You’ve all seen the pictures. You’ve all had friends who have had monkeypox. You don’t want it,’” Gonsalves said.

More broadly speaking, Lastrade argued, the advent of pre-exposure prophylaxis, the HIV prevention pill (also known as PrEP), along with scientific proof over the past decade that treating HIV can prevent transmission, have caused gay and bisexual men to fall asleep at the wheel when it comes to their sexual health.

“The new generation totally forgot about the story of AIDS. I keep on writing books about AIDS but nobody reads them,” said Lastrade. “When s— happens, they forget their reflexes that we used to have because it was a question of life or death.”

Regardless of the messaging, with a lackluster global vaccine rollout, the activists fear the virus will become an infectious disease the LGBTQ community has to permanently live with, as it did with AIDS decades ago.

“Many people are saying we’re past the point of containment, that we already missed our chance,” Gonsalves said. “If that’s true, that is incredibly serious because this disease doesn’t necessarily kill, but the enormous suffering and expense of all of this is going to put a burden on many, many people, many, many health systems and many, many communities who have been already plagued.”

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