How to talk about monkeypox effectively, without stigmatizing gay men
NPR's Ari Shapiro talks with Gregg Gonsalves of the Yale School of Public health about the public messaging challenges around monkeypox, which is primarily affecting men who have sex with men.
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ARI SHAPIRO, HOST:
When the White House declared monkeypox a public health emergency, Health and Human Services Secretary Xavier Becerra said this should concern everyone.
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XAVIER BECERRA: We urge every American to take monkeypox seriously and to take responsibility to help us tackle this virus.
SHAPIRO: But the reality is this disease is not affecting everyone equally. According to the latest data from the World Health Organization, 99% of the people diagnosed with monkeypox are men, and 98% of those who specify their sexual orientation are men who have sex with men - people like Kyle Planck, a 26-year-old grad student in New York City who is studying infectious diseases.
KYLE PLANCK: I haven't had a ton of super painful experiences to compare it to, but it's definitely, for me personally, the worst that I've gone through. And especially because it was, like, an internal sort of pain, it was really hard to deal with.
SHAPIRO: He told our colleague Pien Huang he spent several days bedridden with monkeypox.
PLANCK: I had had a really high fever, and I was taking warm baths, like, five or six times a day because that was one of the only things that made me feel better. So if I had to rate that, I guess my pain was at, like, a seven or eight out of the worst pain I could ever imagine. And it came and went throughout the day.
SHAPIRO: As someone who studies infectious diseases, Planck was pretty familiar with the risks.
PLANCK: Those things, combined with being a gay man in New York City - I think I had more awareness than the average person. So even though I knew about it, I didn't think I was going to get it. So when I actually did, I was very shocked.
SHAPIRO: He got better after he started a medicine called TPOXX. So how can we talk about this disease in an accurate and specific enough way to help those at highest risk without creating stigma or homophobia? Gregg Gonsalves at the Yale School of Public Health has wrestled with this question. He's spent decades working on HIV and other infectious diseases. Welcome to ALL THINGS CONSIDERED.
GREGG GONSALVES: Thanks so much.
SHAPIRO: What comes to mind for you when you hear Secretary Becerra say every American should take monkeypox seriously?
GONSALVES: Well, every American should take it seriously, but there are two kinds of taking it seriously. One is when thinking that you're at personal risk, and that would be men who have sex with men - gay men in the United States, particularly those who are sexually active. Other Americans, you know, should have some empathy and some solidarity and help their gay and lesbian neighbors get through this. Many straight Americans rallied to our side during the HIV epidemic, but the federal government really needs to get its act together because right now we're failing in the response.
SHAPIRO: There's a long history of politicians and homophobes portraying gay men as vectors of disease. And so if public officials get specific about how this disease spreads and how to prevent it, do they risk playing into those harmful tropes?
GONSALVES: Well, one is we have to figure out how to hold two thoughts in our head at once. One is it's not a gay disease, but it's happening among men who have sex with men. And what the federal government has actually been pretty good at is that they've been very, very vocal about the need not to stigmatize LGBT communities, gay men - not to discriminate against them. That being said, you know, we've already heard from certain politicians - particularly in the other party - that have tried to make this a way to scapegoat people in a moment of crisis. And, you know, we need to be fact-based in our prevention messages. And we have to just be very, very clear about the fact that discrimination and stigma are bad in a moral sense, but they also drive people away from care and prevention.
SHAPIRO: This disease is not only spread through sex, but it is often spread through sex. And after the head of the World Health Organization, Tedros Adhanom Ghebreyesus, declared monkeypox a global public health emergency, he spoke much more specifically than Secretary Becerra.
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TEDROS ADHANOM GHEBREYESUS: That means making safe choices for yourself and others. For men who have sex with men, this includes, for the moment, reducing your number of sexual partners.
SHAPIRO: Some gay men were outraged at being told who to sleep with. And others, like sex columnist Dan Savage, tweeted, that's not discrimination. That's not homophobia. That's treating adult gay men like adults. In your opinion, was that the right message?
GONSALVES: Well, Dr. Tedros did something courageous when he made an announcement of a public health emergency. He overruled his advisory committee and said, indeed it is. It's affecting gay men across the world. And so I think he spoke about this from a position of care and solidarity - not of moral criticism or moral opprobrium. And so yes, I think it's fair to say modifying the places you seek out sexual contact is something reasonable to do. And we should be talking about it explicitly, particularly among the gay community - talking to ourselves, peers to peers. That being said, you need to keep on the lookout for stigma and discrimination. But it's - that's what I think people are reacting to - that talking about gay sex among ourselves - among gay men, among the LGBT community - is one thing, but certain politicians will always take advantage of it.
SHAPIRO: You've spent so much of your career working on HIV. Although monkeypox is not fatal - there is a vaccine. There are treatments. Still, there are parallels between that disease and this one. What lessons from your experience working on HIV and AIDS do you apply to this moment?
GONSALVES: Well, the main thing we need to do is to support people who are suffering from this disease - the gay men who are in desperate pain, as your interviewee spoke about. People need to be supported. Remember; 21 days of quarantine may be OK for some. But if you don't have a job that lets you stay at home or you don't have sick pay, how are you going to do that? If you go into the hospital to get pain medication, what's going to happen if you're underinsured or uninsured when you get that hospital bill? So my main thing is that, in the 1980s, the gay community had to build its own systems of care for itself. We shouldn't have to do that 40 years later. We should figure out a way to ensure that everybody who has a case of monkeypox does not fall between the cracks.
SHAPIRO: I know treatment, vaccines, access to care is its own entire issue. But on this question of messaging and how to balance specificity with not wanting to inflame homophobia and stigma, how would you rate the government's performance so far?
GONSALVES: I mean, I don't know if I have enough data to do that. But just remember - public health plays out at the state and local level. The CDC's role in public health is to give technical guidance. How is it transmitted and how is it prevented? - you know, all the sort of facts. And state and local health departments are crafting public health messages, and so some are better than others, right? Again, you know, the best messaging is going to be the most honest - as Dan Savage said - and treat us like adults.
This is not a gay disease. There should be no stigma and discrimination, but it is affecting gay men right now, and we're going to need to modify our behavior - not out of some sort of moral admonition about our sex lives, but about protecting ourselves and caring for each other and showing solidarity with our fellow gay men - to say this is going to be a rough few months, until we can get vaccination up to a level where we have broad protection against the virus. And, you know, this happened in the mid-1980s. Gay men started modifying their behavior, and we start HIV rates coming down in the middle of the '80s before the big sort of community-based campaigns started. So we can do this.
SHAPIRO: Gregg Gonsalves is an associate professor of epidemiology at the Yale School of Public Health. Thank you very much.
GONSALVES: Thanks, Ari.
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