The US monkeypox response is failing queer men

People call for more government action to combat the spread of monkeypox on July 21 in New York City. | Jeenah Moon/Getty Images

An expert explains how the community has learned to take care of itself when governments won’t.

A full month before the World Health Organization declared monkeypox a global health emergency, my gay friends in my group texts had already figured out how to get vaccine appointments, what to do if we were exposed, and where to find the best research on risk and vaccine efficacy. These were the same group chats that once contained gossip, lunch orders, and gentle ribbing between friends, but now, we’d also often devote minutes and blocks of text to a virus that we were struggling to find any information about.

It was June, and at the time, monkeypox had been spreading in Europe and was primarily affecting men who have sex with men. New York City Pride — and the numerous parties and celebrations that come with it — was about to start, but according to New York City health officials, the number of cases in New York was very low. The caveat: Those were the same New York City health officials who underestimated Covid-19.

Without advance notice, the city’s health department had made 1,000 doses of Jynneos, the monkeypox vaccine, available the Thursday of Pride. The surprise release — like a sneaker drop — didn’t feel like a reassurance. It felt more like a late attempt to get out in front of a major problem.

A friend sent me a link to an appointment-making website operated by MedRite, and I booked an appointment for 1 pm the next day. I also sent the link to several more friends.

The city ran out of appointments later that day.

According to health officials, the CDC, and others, monkeypox is a “mild” disease, usually not fatal, that largely consists of sores that can spread all over the body. That it starts as a fever, that the sores will creep all over your body and make it hard to sleep, that it feels like someone exploded a lightbulb in your bottom, that the pain is scorching and unbearable, and that TPOXX, a drug that can help battle the virus, is frustratingly impossible to procure — come from accounts from queer men who have or had the disease. Some of those men have posted their experiences on social media because of the lack of information about the severity of the disease.

The US government has been criticized because it didn’t act with urgency against monkeypox after a New York Times report surfaced that, despite a vaccine supply and information coming in from Europe, the US took a wait-and-see approach. Protests have erupted. New York City, California, Illinois, and other cities and states have declared states of emergency to receive and deploy resources to battle the epidemic. Appointments are few and far between, many without any second doses planned, though Jynneos is a two-dose vaccine, and overall, the handful of cases in May and June have, by August, increased to 6,300 reported cases in the US, and 1,617 in the state of New York.

Without my gay phone tree, I don’t think I would’ve been able to get a dose of Jynneos. On the one hand, having this network is great and largely informative in the midst of an outbreak.

At the same time, that I’m largely depending on my network of friends to let me know the latest about an epidemic has shown the gaps in the American health care system and how thin public health resources are spread.

“What I see is a community of people who have been left without access to the care that they need, advocating for themselves and for others and going to extraordinary lengths to try to minimize viral risks,” says Joseph Osmundson, a queer health advocate and clinical assistant professor of biology at New York University. “All the while, their suffering is not being taken seriously.”

Marlena Sloss/Washington Post via Getty Images

California state Sen. Scott Wiener speaks during a rally to demand that the federal government respond quickly to the recent San Francisco monkeypox outbreak at the San Francisco Federal Building on July 18.

Osmundson, whom I had previously chatted with last year about Covid and harm reduction, has been helping friends get tested and treated for monkeypox. I spoke with Osmundson again recently about the outbreak, the seemingly lackluster federal response, the stigma of labeling monkeypox a gay disease, and the parallels to the fumbled response to the HIV/AIDS epidemic. We talked about the troublesome situation we’re in, but as Osmundson also points out, because of queer men’s experience and relationship to HIV/AIDS and health care in general, they’ve learned to take care of themselves when the people in charge haven’t.

This interview has been edited for length and clarity.

Joe! I cannot believe I’m having my second interview with you about another virus.

Another one! Another! And this one is coming after gay sluts — it’s almost personal to me. I had so many plans for a slutty summer. And that’s not happening.

Honestly, fuck monkeypox!

There are so many things about this disease and our current situation that are infuriating, but I think the most awful thing is that we’re left in the dark. There are no best practices. There’s no clear guidance other than “If you have sex, you’re at risk,” and every behavior that isn’t “sex” feels a little nebulous when it comes to said risk.

To me, the most annoying part is this entire thing was preventable. The gaps in knowledge that we have are gaps that have been made by choice. And it involves ongoing colonial and neo-colonial violence.

This is a virus that has been spreading human-to-human in Lagos, Nigeria, since 2017. Why do we not have clinical trial data on how effective Jynneos is as a monkeypox vaccine? We have no human data — zero. We have no human randomized clinical trial data on how effective TPOXX is as an antiviral — no human data.

We have no human data because we ignore the suffering of people in Central and West Africa. This current outbreak cannot be taken out of the context of global racism, which leads to a virus being understudied. If we had been vaccinating at scale in Nigeria, it’s almost certain the virus would not be spreading around the world.

A bioethicist I spoke to about Covid last year said something similar: Vaccination doesn’t work when you aren’t vaccinating everyone. It was in regard to wealthy countries stockpiling Pfizer and Moderna vaccines and how the virus would mutate if those vaccines weren’t shared with countries in need.

Increasingly, infectious diseases are, by definition, global problems. Nationalist solutions to global problems are destined to fail. The US has a stockpile of the Jynneos vaccine to “protect” Americans. Okay, well, using that fucking Jynneos vaccine in Lagos, Nigeria, would have fucking protected Americans because it would have stopped the spread of this virus in its endemic region. And it would therefore be much, much less likely that it would ever get to the level of global spread that we’ve seen over the last few months.

I think what you’re pointing out is that the struggle we’re facing with monkeypox and other infectious diseases is a mentality of “us” versus “them.” Now, with the monkeypox outbreak, which primarily has affected “men who have sex with men,” according to various health authorities, it seems like a scenario in which stigma and prejudice have once again become factors when it comes to getting care.

I’ve been working on an op-ed about how we’re trying to replace the language of “men who have sex with men” with either “men and their sexual networks” or “queer people and their sexual networks.”

“Men who have sex with men” has a really long history of being a term that people in public health understand, but it also completely erases trans and non-binary people who are part of our social networks.

And terms like “men who have sex with men” directly led to New York City not allowing trans women to get vaccinated in the first swath of vaccinations.

So people and communities who are vulnerable not receiving care — that stresses the importance of language, right?

Right. The language we use to describe who is at risk directly impacts who can get interventions, and there are people who have been thinking about this language and being precise with it, and what terms are best to use and what communities like to call themselves for many, many years.

It’s frustrating and fascinating to me that on the one hand you could argue that language in medicine is capable of — at the same time — stigmatizing queer men but also can exclude people who need care.

A lot of trans and non-binary people were not able to get tested and we have anecdotal stories of cis women not being able to get tested. So, you know, measurement is not divorced from the identity markers.

As of four days ago, the CDC language on their website around vaccination has changed to be “people who have had multiple sex partners in the last 14 days” — people with no identity marker whatsoever and focusing on the behavior. That’s the absolute right thing to do. Because, for example, cis women who are sex workers may be at very high risk and need access to vaccines.

How do you address that this epidemic is primarily affecting queer men without creating animosity toward us?

We have to be honest about the fact that, right now, queer men and our sexual networks are the majority of cases. Saunas and group sex are pretty freaking risky right now. We are being honest with people in our community about that, and it’s out of love for those types of spaces and the members of our community who go there. It’s coming from a place of community protection, preservation, and mutual care — not from a place of shame or stigma.

Mario Tama/Getty Images

A sign directs people toward a pop-up monkeypox vaccination clinic in West Hollywood, California, on August 3.

So how do we talk about gay sex and this outbreak right now? What is an example of doing it wrong? What makes you so angry about the idea that gay sex is “driving” the monkeypox epidemic?

Gay sex is a fact of life. Gay sex exists on planet Earth, you will never change that, whether you want to or not. Gay sex will always exist, gay sex doesn’t drive anything. It’s like the sun in the sky or the tide going in and out.

So when epidemics spread through gay sexual networks, we want to be very precise about that language. And also to be clear that sex is a normal and healthy behavior. And our goal in biomedicine should be giving people all the tools that they need to make the best decisions and, in this case, have sex with the lowest risk possible.

In this case, the drivers of the epidemic are the structures globally that have led to vaccines, tests, and treatment, all existing for a virus and yet being almost entirely inaccessible.

We cannot change the fact that gay sex exists, but we can change the fact that the Jynneos vaccine is not globally available. We can change the fact that TPOXX is largely inaccessible.

You were cited in the New Yorker in a story about how hard it was to convince authorities to broaden testing. You’ve had friends with monkeypox, and getting them tested and treated was like running into a brick wall. Health officials were not helpful. Has anything changed since then? Has testing gotten better? What has gotten better?

Unfortunately, I have many, many cases of people in my social network needing help. I have a bunch of friends who are sick, and it’s really been very emotionally exhausting. Testing has gotten much better. Testing turnaround is now a couple of days, and clinicians can order tests without having to go to the Department of Health. But testing is the only thing that’s changed appreciably.

Vaccine access and treatment access have not changed appreciably.

An example: My friend was swabbed on a Tuesday, his test came back positive on a Friday. New York City presumed him positive on Tuesday, based on what his lesions looked like. In New York City, they will process TPOXX for you on a presumed positive case without waiting for tests to come back just in case, because of testing lag time. So while he was indicated for TPOXX on Tuesday or Wednesday and alerted his medical provider, he did not get the medication until the following Friday. So we’re talking 10 days after the paperwork was submitted, possibly due to the scarcity of the drug and an ill-equipped system.

That’s 10 days of terrible quality of life and, from what I gather, a lot of pain.

Correct.

Having covered a pandemic more than I’d ever like to, one thing that kept coming up was that New York City probably had or has one of the better public health systems in the country.

Best in the nation, and probably one of the best in the world.

Given what we’ve seen over the last couple years, that’s not necessarily confidence-building — add to that cuts and resignations within the Department of Health.

Public health barely gets along without an emergency. Health clinics — they’re doing okay, barely. If you throw an emergency into the mix, no matter what the nature of that emergency is, we’re in deep shit.

So I think we’ve established that there have been several organizations and systems that have dropped the ball. But on the other side of that, I think I’ve found in a lot of my networks, that gay men — as a community — will take care of each other. It’s how I found out vaccines were being given out, what the disease was like, and our best guesses of how to stay safe.

Do you think that’s ingrained into gay male culture, based on our experience with HIV/AIDS, where it’s this mentality that if the government can’t take care of us, we have to take care of ourselves?

I really do believe that there’s been a revolution over the last 10 years in regard to HIV treatment and prevention. I think it’s the relationship between PrEP and HIV treatment and our interactions with health care. Theoretically, if you’re on PrEP or if you’re on HIV treatment, you’re getting STI-tested every three months. That means queer men have interaction with biomedical infrastructure that is far above and beyond the usual amount that people outside our community do.

Jeenah Moon/Getty Images

Protesters in New York City on July 21 call for for more government action on the monkeypox outbreak in the US.

It’s not always easy. We can have homophobic doctors who stand in the way of our ability to get PrEP, for example. And there are still people within our community who are drastically underserved and people who have a different relationship with health care, by nature of not having high-quality access.

And with that, there’s often a community urgency or a community sense of need of like, “Hey, I need to find a gay doctor that takes my insurance,” or, “Hey, I need to find a gay doctor that takes Medicaid,” and as community, we’re always talking to each other about access to high-quality care.

Yeah, I have those conversations — about doctors we recommend, about new advancements when it comes to HIV prevention, or even about the difference between Descovy and Truvada — with my friends a lot.

I also do think there’s something inherent in our thinking about risk and pleasure that may not be common to people outside of our community. I think it’s a real badge of honor, that our community takes our collective health so seriously and that we won’t continue to allow people inside or outside of our community to suffer in what is an oppressive American health care system.

Okay, so on that. The way I found out how to get a vaccine was through a friend who texted me, and I sent that text to all the people I know.

Right, or like, here’s the phone number to call. Or, I remember asking people if they can get to Westchester, because Westchester was not advertising their appointments. And if you could take the LIRR from Harlem to Westchester, you could walk five minutes and get a vaccine — same thing on Long Island.

We are giving each other the information that we need, given the abysmal federal response, in large part, to try to do the best to keep one another safe.

We’re trying our best, given the cards we’ve been dealt.

A close friend of mine, who had that case of monkeypox that was detailed in the New Yorker, had proctitis [the virus had affected his rectum].

I was on calls with high-level federal officials, including Secretary of Health and Human Services Xavier Becerra, and they were telling us, monkeypox is mild, no one’s being hospitalized, and we got this under control.

Meanwhile, my friend feels like he’s shitting out broken glass. This was in early-mid June, we had to yell at them to say, the experience of patients on the ground is not that this is a “mild” infection. They are suffering, and they need access to tools, and you are not giving them access to tools. You’re telling us to our faces that this is a mild infection, and we have the community experience to know that it isn’t.

I know you’ve cobbled together some rough guidelines regarding sex and monkeypox transmission. The CDC and various health departments are starting to release and update ideas of harm-reduction strategies too. I know you’re not a medical doctor, but what do you think we can do to keep safe?

I’m gonna do a Rumsfeld here: There are knowns and there are known unknowns.

It is known that a lot of monkeypox transmission has come from saunas, bathhouses, and group sex. The epidemiology is clear on that. That is known in this epidemic at this time. A lot of people who have gotten monkeypox have recorded attending a sauna or bathhouse or group sex event within the incubation period.

Given that there’s a lack of vaccine accessibility, and given that there’s a lot of community spread of the virus, we say for now that’s a very high-risk activity and we recommend against it. It’s not for forever; it’s until we have better access to vaccines and potentially a little bit better understanding of how well that vaccine protects against the highest risk types of skin-to-skin contact.

Condom protectiveness is a known unknown. We know that condoms are not going to be fully protective, for sure not. Because this is a skin-to-skin contact, like a herpes virus. You know, if you ask a public health professional, do condoms always prevent herpes? The answer is no. But they may provide some level of protection for monkeypox depending on where the lesions are.

That, of course, is not based on any data — because we don’t have the data yet. What it is is a potential harm reduction possibility that may help, and what we think may help particularly with the very painful penile lesions that can get infected and with the proctitis and internal rectal lesions that are being reported.

It’s not a perfect correlation. This is based in science but it is not yet super well-supported by clear data. But wearing condoms during sex is not going to hurt, and it may help.