To Respond to Monkeypox: A Guide to Health Officials Aware of the Failed AIDS Crisis

As officials, researchers and activists scramble to control the novel monkeypox outbreak, many are doing so with another virus constantly stuck in the back of their minds: HIV.

The similarities between the two infections are limited but clear. Although the strain of monkeypox circulating now is much milder than HIV — no deaths have been reported among the more than 1,000 cases so far — it is another virus that has emerged in sub-Saharan Africa and has emerged largely outside the continent in men who are infected with the virus. Having sex with men.

“There are echoes, you know,” said Chris Perrier, director of the Duke Institute for Global Health.

And they pose a similar challenge to officials: How do you get tools and information about the disease to those who need them without wrongly implying that only this group is at risk, or linking an unfamiliar disease publicly to an already stigmatized community?

Fortunately, this time, officials have a guide to action — a book that was written and rewritten during the worst pitfalls of the AIDS crisis, as well as the collaborations that ultimately helped curb the HIV epidemic and other outbreaks.

“It’s a rock and a hard place we’re used to,” Demeter Daskalakis, director of the CDC’s Division of HIV/AIDS Prevention, told STAT.

Read more: Experts have warned that a ‘bottleneck test’ for monkeypox puts hope of containing it at risk

The notion that HIV was a “gay plague” – a moniker unfortunately associated with the virus by the gay press, who first covered the disease in 1981 – punished the response to the disease from the start.

The virus has been ignored by the mainstream press for years except for cases that have been reported in heterosexual women, children, or men. The first time the Reagan administration was asked about it, his press secretary quipped, “I don’t have it, do I?” Funding levels have remained a fraction, on a per-death basis, than in smaller outbreaks such as Legionnaire’s disease.

Journalist Randy Shilts concluded in his book “The Band Played On,” A History of the AIDS Crisis: “By NIH budget calculations, a gay man’s life was worth about a quarter of that of a member of the American Legion.”

As the first reports of an outbreak of monkeypox spread, with articles talking about sexual transmission or a news anchor talking openly about “gay sex,” some activists and doctors feared a return in the 1980s.

“The first part in a lot of the articles was highlighting groups of monkeypox that occur in gay men,” said Titangi, an infectious disease physician in Emory. “And that in and of itself begins to affect a kind of common people’s mind, that this is not something that affects me.”

The stakes will be great. In addition to potentially dedicating resources to an outbreak or asymptomatic individuals are less likely to seek medical care, this perception may put LGBT people at immediate risk, said Keletso Makofane, a fellow at Harvard University’s FXB Center for Health and Human Rights. .

Makovani, who co-authored with Titanji in an article in PLOS Global Health titled “Monkeypox is not a homosexual disease,” noted the increase in legislation criminalizing gender affirmation care for transgender people.

“The whole group, the LGBTQ group, is in a place where violence is not a remote threat,” McCovani said.

It could also create a “blind spot,” McCovani said, leaving clinics and hospitals unprepared to deal with outbreaks in other populations.

Early in the AIDS crisis, for example, clinicians who reported cases of HIV infection in newborns were excluded. Deskalakis also noted the spread of drug-resistant bacteria that began in gay men more than a decade ago before spreading among athletes and having a severe impact on the prison population.

Monkeypox is not transmitted by sexual contact but by close contact with the characteristic blisters of the disease. Experts emphasized that although the acquisition of this network occurred, it could easily have stuck to other groups – for example, athletes or college students on spring break.

“It could be any network,” said Anne Remoen, an epidemiologist at the University of California, Los Angeles.

But officials cannot simply ignore that in the United States and Europe the virus spreads primarily among gay and bisexual men. To stop an outbreak, officials need those most at risk to monitor symptoms and mitigate their risks.

“We don’t want to pretend that the cases described in Europe were not primarily in MSM,” said Ken Mayer, director of medical research at Fenway Health, a clinic focused on LGBTQ in Boston. “But we want to do it in a way that people feel educated or engaged but are not stigmatized in a way that people delay seeking care or ignore symptoms.”

Titanji points out the second risk of underestimating the increased exposure of certain populations. In the 1990s and 2000s, she says, as officials realized HIV was a broader threat, the stigma surrounding the disease waned, and so did the resources for the people who really need them: African-American men and gay gays. Hispanics and bisexuals, who were often at disproportionate risk in the 1980s and still face the highest rates of HIV infection in the country.

This led to “almost complete transformation of the epidemic among Latin American and African men,” said Titanji. That is why they are suffering from a delayed epidemic.”

To walk this line, researchers and officials worked closely with activists and community groups, another lesson of the AIDS epidemic, when groups like ACT UP organized sit-ins and protests around Washington, DC.

“It took years, people literally occupied the National Institutes of Health — occupied the FDA, got arrested — to get a seat at the table,” Perrier said.

The Centers for Disease Control and Prevention now includes several HIV specialists, including Director Rochelle Walinsky, who emphasized the broad public threat posed by monkeypox. Her message is “perfect on the ballpark,” said Greg Gonsalves, a former ACT Up activist and now professor at Yale University, adding, “She clearly has a decade of experience in HIV/AIDS care and policy.”

Read more: Health officials scramble to raise awareness of monkeypox ahead of Pride Month

Although there are already disagreements — most notably over the Centers for Disease Control and Prevention’s central testing policy — groups have largely worked at a steady pace to try to educate the community, with the agency relying on NGOs and commonly used apps like Grindr to reach people who might not otherwise. They are caught. At Walensky’s press conference.

How to do this is not always clear. The HIV Handbook calls for information on how people can protect themselves without focusing on who they are, but that leaves a lot of gray areas.

Like the European Center for Disease Control, the Fenway Health fact sheet encourages men to not only check for symptoms but potentially have fewer sexual partners. But the CDC refrained from focusing solely on exposure, because “if you focus on exposure and don’t go straight to identity, you’ll be able to get the word out to the right people,” Daskalakis said.

Transmission is harder, especially as officials continue to piece together how the virus is spreading. Much of the messaging focused on “close contact,” said Judith Auerbach, a professor of behavioral sciences at the University of California, San Francisco, but after Covid-19 — where close contact simply means standing near someone for 15 minutes — that can easily be misinterpreted. . . But listing every possible type of contact may not be helpful.

She prefers a line that says “close contact, which can include sexual activity.” Peter Staley, a former ACT Up activist, wanted to be significantly more explicit. He said a debate erupted on a conference call last week about whether or not anal sex should be discussed, as reports surface that blisters are often found in the transmission zone.

At least one fact sheet has been made with pictures of genital ulcers.

“I think we need to be specific,” Staley said. “But when you start to define this, you open up bigger and bigger stigma boxes.”

Conversely, some messages may stigmatize people in Africa, where the virus is endemic and where it was first identified. The World Health Organization had to change pictures of monkeypox after African consultants and doctors indicated that they were all black, despite the global outbreak.

Auerbach said she sent a private letter to the LGBTQ group whose draft brochure indicated the virus was imported from Africa, a reminder of the days when HIV was covered only if it affected gays.

“It’s so easy to slip into this language, you don’t even realize,” she said.

Messages should also be in tune with subgroups within the LGBTQ community. Titange said officials in London and Belgium have been quicker to respond than they can in Atlanta, where doctors and researchers have been less involved with the gay Hispanic and black community, who have been negatively affected by the ongoing HIV epidemic and may also face racism and religion. stigma

“So when you think about monkeypox in these societies, you add something else to an already ongoing issue related to stigma, racism, and the social determinants of health,” she said.

Gonsalves, a former ACT UP member, said he would still like to see more information from certain community groups and companies focused on the LGBTQ world. But like other activists, he said, the response represented everything they had learned over four decades — good enough, in fact, to spark some bitter musings.

In a call last week between the White House, the National Institutes of Health, CDC officials and representatives from about 70 community groups, Staley opened by thanking the administration for hosting the call. Then you think out loud.

“Imagine if the White House met with a similar group in 1981,” he said. “How could things be different?”

The line fell silent for a moment.

This article is reproduced with permission from STAT. First published June 8, 2022. Find the original story here.

Helen Branswell contributed reporting

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