Benjamin Ryan

During the four months of the monkeypox outbreak, health care providers, researchers and an anxious public have scrambled to determine how the virus transmits, how to prevent it and how the infection plays out in the body.

Little attention has been paid to what comes after the infection clears.

Following recovery from this skin lesion–causing virus, people often find themselves waiting anxiously over the course of months to see whether monkeypox will leave them with permanent scarring. And in interviews with more than a dozen people who have had the virus and as many health care providers and researchers, NBC News learned that in some people, the lingering scars are not only physical but psychological. Troublingly, it’s also possible the virus could cause permanent damage to sensitive internal tissues and give rise to persistent pain or other onerous long-term symptoms.

“Just because you’re cleared and no longer contagious, it doesn’t mean you’re totally back to normal,” said Matt Ford, 30, a bicoastal actor who contracted the virus at the beginning of the summer and hopes that his scarring, including pockmarks on his face, will continue to dissipate. “It did a number on my body, especially in more sensitive areas.”

Unfortunately, people looking to doctors or health agencies for answers about what to expect post-pox are typically met with an information vacuum. This is the result of the notorious dearth of research conducted prior to the outbreak about a virus that until this spring largely only circulated in western and central Africa.  

“I just want there to be more concrete information, but maybe that’s asking too much,” said Brad, 33, a New York City area resident who preferred to use only his first name to protect his medical privacy.

In an emailed statement, the New York City health commissioner, Dr. Ashwin Vasan, acknowledged this lack of health guidance, saying, “It’s still early in the outbreak and the kinds of long-term studies needed to understand these issues better have not been completed yet. We continue to learn from what people who’ve experienced infection and recovery are reporting.”  

Since the unprecedented global outbreak was first detected by health authorities in mid-May, 65,415 cases have been diagnosed worldwide, 24,846 of them in the United States, the Centers for Disease Control and Prevention reports. While the weekly case count both nationally and worldwide has declined in recent weeks, raising hopes that the outbreak might be brought under control, concerns remain that at least a fraction of those who have had the virus might suffer long-term impacts of the infection. 

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Cosmetic concerns

For gay men, who comprise the overwhelming share of global monkeypox cases and among whom the competitiveness to look good is famously Olympian, worry over sustaining noticeable scarring in the wake of the infection can be particularly taxing.

“Especially for people who already have body dysmorphia or are hypersensitive to how others see them, there is this hypervigilance” of such cosmetic effects, said Preston Wholly, managing clinical director of behavioral health services at the LGBTQ-focused nonprofit health care provider Harlem United in New York City.

The marks are also signals of an infection that because it largely transmits through sex between men, can be highly stigmatized.

“I think it’s important to be aware of the effect of stigma regarding the route of monkeypox transmission, at-risk groups and disfiguring skin lesions — all of which could contribute to psychological distress,” said Dr. James Badenoch, a physician at the Queen Mary University of Medicine in London and the co-lead author of a paper published Sept. 8 in eClinicalMedicine on neurological and psychiatric conditions linked to monkeypox.

Harun Tulunay, 35, was hospitalized with a particularly severe case of the virus in July. In addition to experiencing extreme proctitis, or inflammation of the rectal tissues, and an inability to swallow, he developed an atypically large purple-black lesion that covered his entire left nostril. The lesion has since healed but has left behind pockmarked scar tissue.

“I am very obsessed with the little scar on my nose and am using lots of creams, scared it won’t go away,” said Tulunay, who, like a substantial proportion of people who contract monkeypox, has HIV.

Dr. Howa Yeung, an assistant professor of dermatology at the Emory University School of Medicine in Atlanta, said that while guidance on care for monkeypox lesions may be lacking, what is known about treating smallpox, which like monkeypox belongs to the orthopoxvirus family, can serve as a guide.

Yeung recommended the use of what are known as hydrocolloid dressings on lesions, which help keep them moist and promote healing while minimizing scarring. For thicker scars, silicone gel or patches may help improve their appearance, he said—especially if such treatment is started shortly after the scabs fall off. Later on, lasers and microneedling may further improve their appearance, although such interventions can be expensive. 

The dermatologist noted that people with darker skin tones are likely at higher risk of monkeypox lesions leaving lasting dark marks, which he estimated could take three to 12 months to fade. 

“Some scars will be permanent,” Yeung said.

He advised the use of skin-lightening agents, which a dermatologist can prescribe, as well as a high SPF sunscreen to keep the sun from further darkening the pigment.

Gerald Febles, 25, reported grappling with such marks, which, although they have been improving, still greatly bother him. Hoping they will recede over the coming months, he’s tried various scar-treatment creams, which don’t come cheap.

“I was very confident in my own skin before,” said Febles, who is an employee relations manager for the urgent care company MedRite. He said he now has “a lot more insecurity about my body in general. I’ve even gone to bars and some people have asked, ‘Oh, what’s that on your neck?’ So it’s something I’m reminded of whether or not it’s on my own terms.”

Febles was keen to assert that he sees no reason to be ashamed of having had monkeypox. But recalling that the infection caused him excruciating pain, he nevertheless characterized such questions from people as “a trauma trigger.” 

The potential for lasting damage

Proctitis, experienced by 1 in 4 people with the virus in a Spanish study and 16% of U.S. cases about which the CDC has data, is one of the most devastating potential monkeypox symptoms. It can cause excruciating pain, in particular when defecating. What’s more, such symptoms might portend longer-term consequences of the infection. 

During a July 14 Infectious Diseases Society of America call with reporters, Dr. Mary Foote, a medical epidemiologist at New York City’s health department, raised an early alarm that monkeypox lesions might cause permanent internal damage in some people. This, she said, could include the formation of scar tissue or strictures in the anorectal or urethral tissues, which could affect bodily functioning.

“It’s quite concerning,” Foote said of these potential outcomes, which she recently told NBC News might prompt the need for surgery or other interventions.

Dr. Boghuma Titanji, an infectious disease specialist at Emory University, reported seeing urethral damage or overall pain in the penis, including difficulty retracting the foreskin, due to scarring from monkeypox.

“When we see these cases with urologic involvement, we consult urologists,” Titanji said, noting that “early urinary catheterization and other interventions may prevent complications down the line.”

Brian Rice, 43, reported suffering from a host of bothersome health problems, including the flu, since recovering from monkeypox in mid-August. Having endured penile pain, swelling and discharge during the infection, the attorney has since experienced pain in his pelvic area and the frequent need to urinate. These symptoms eventually resolved themselves, Rice said, following pelvic floor myofascial release treatments. But he’s also experienced a persistent rash in his pubic area that is only recently starting to clear up. 

“Nobody knows whether these other symptoms I’m experiencing are related in any way to monkeypox,” said Rice, who is HIV positive and lives in Cliffside Park, New Jersey. “It could be stress and anxiety; it could just be triggering other things.” 

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Dr. Peter Shalit, who runs an LGBTQ-focused primary-care medical practice in Seattle, reported that one of his patients had a mild case of monkeypox in July, with only skin lesions. Then, in August, the man relapsed and suffered from worse disease symptoms, including proctitis. Three weeks after recovering the second time, his rectal symptoms returned once more, causing him severe pain. Shalit treated both the second and third waves with the antiviral TPOXX, which appeared effective at battling symptoms.

The eClinicalMedicine paper published this month reported that in rare cases people with monkeypox develop neurologic symptoms, including encephalitis, confusion or seizures.

“Encephalitis can cause long-term problems with disability, mood and memory problems,” said Dr. Jonathan Rogers, a psychiatrist at University College London and a co-lead author of the paper. He stressed, however, that he and his coauthors don’t have the necessary follow-up data to determine any extended effects of this condition among people who have recovered from monkeypox.

The CDC reported Sept. 13 the cases of two previously healthy men in their 30s who after contracting monkeypox developed encephalomyelitis, or inflammation of the brain and spinal cord. The men have recovered from the infection, but a month after the start of their neurologic symptoms, they each still require an assistive device to walk. 

A difficult transition

Arriving during the Covid crisis denouement, the monkeypox outbreak has triggered pandemic-related anxieties that had only recently begun to abate, by sending people with the virus right back into isolation for the few weeks the infection takes to resolve. And as they grapple with recovering from such a stigmatized virus, many of those who spoke with NBC News said it has taken time for them to regain their confidence and calm within the outside world — be that interacting with colleagues, seeing friends and family, or getting back into dating and sexual intimacy.

These people report having a particularly difficult time disentangling the misery of monkeypox from the joys of sex.

“I just feel like I lost my mojo,” said Harun Tulunay, who, similar to Febles, finds men constantly striking up conversations with him about monkeypox, especially given how much media coverage his case received.

“They don’t seem much interested in dating me after,” he said, ruefully.

In the meantime, Tulunay, who is a training and volunteer coordinator at the HIV nonprofit Positively UK, is trying to get his semen tested to determine if he might still harbor the virus. Monkeypox has indeed been found in seminal fluid, and the World Health Organization has recommended that men wear condoms for 12 weeks following recovery from monkeypox out of concern, pending further research, that the virus might remain in semen and be transmissible for that long.

John Farrey, 32, said what he missed most while isolating with monkeypox was going out dancing with friends. So he thought he’d be jazzed to jump right back onto the dance floor once he recovered.

But, the Brooklyn tech worker said, “I felt very terrified of my own skin” during the immediate aftermath of his infection. Being around other people, he said, “still felt unsafe.” 

“It really took me a long time to be comfortable having close contact again,” Farrey said.

For Brad, the New Yorker, having monkeypox was “totally traumatic,” sending him off-kilter emotionally. He’s been struggling to regain his equilibrium since then. A scar on his penis has made him self conscious and has caused him to worry that sexual partners will ask intrusive questions about it. 

“Then it’s ‘bye-bye mood,’” Brad quipped of such a scenario.

“I’m still kind of afraid of sex, because my last sexual experience resulted in this, and it still carries so much weight,” he said of contracting monkeypox. “Sometimes it turns into this source of shame that I’ve never experienced before about sex.”

Then there’s the question of when the body is once again ready for the rigors of intercourse. Proctitis, said Dr. Chris Beyrer, director of the Duke University Global Health Institute, “is going have a very big impact on subsequent sexual functioning” for those who engage in receptive anal sex.

“I think the question is: ‘When have you sufficiently healed?’” Breyer said—which, he acknowledged, “is not a question that people have good answers for.”

The importance of support

Given the traumatic ripple effects that monkeypox can unleash, experts highlight the need to provide people who contract the virus with support that doesn’t end when the scabs clear up.

“The anguish experienced by many patients cannot be underestimated. It can be a truly horrible time,” Dr. Hans Kluge, regional director of WHO Europe, said at an Aug. 30 news conference about monkeypox. He called for buttressing “both the physical and mental health of patients during the entire course of the disease, and after. It remains of critical importance.”

Harlem United’s Preston Wholly said he works with his clients who have contracted the virus to cut through the harmful stigma tied to contracting monkeypox. 

“We really want to process that it wasn’t their fault and work through the guilt and shame and kind of normalize it,” he said.

Jeffrey Galaise, 41, who said he has persistent nightmares about the infection —“I imagine myself having pox and pain,” he said — is among the many people who have contracted the virus and then established their own support networks. He founded a Zoom-based monkeypox support group for people with the virus he met mainly through social media. This outlet, he said, has been invaluable as he tries to move on.

“I need to get back to my normal life,” said Galaise, who works for a New York City governmental agency. “It has certainly been a transition. I certainly think I’m getting there.” 

Brad, who has also found a supportive community of others who have had monkeypox through social media, said he yearns to have the lingering physical and emotional effects of monkeypox behind him.

“I would like there to be a day when I don’t worry about this anymore,” he said. “I just want to be done with it.”

For many gay and bisexual men, the sprawling and chaotic monkeypox outbreak has upended a summer that was supposed to be a well-earned opportunity — following the peak of the Covid crisis — to finally have some fun and revel with their gay brothers without the threat of viral infection hanging over them. 

Soon after Memorial Day, however, these men, as well as transgender individuals and other queer people — GBTQ for short, because lesbians’ monkeypox risk is remote — were met head-on with harrowing reports about monkeypox’s often devastating and disfiguring effects on the body. Next came anger and frustration over what queer activists characterize as the Biden administration’s fumbling initial response to the outbreak.

Lost amid the frantic media and public health reports about monkeypox epidemiology, the delayed vaccine deliveries and the squabbling over how best to communicate about the virus are the millions of GBTQ people whose happiness, well-being and connection to one another have in many cases been considerably compromised by the mere threat of monkeypox infection.

“Life has sort of halted,” said Guillermo Rojas, 29, a Mexican citizen and public administration graduate student in New York City. “This was supposed to be the great summer that everything went back and opened.”

Dr. Alex Keuroghlian, a psychiatrist at the LGBTQ-health-focused Fenway Institute in Boston, said the outbreak has “been extremely distressing for community members and is also triggering in that it harkens back to the early days of the AIDS epidemic. It has a chilling effect on people’s sense of community, cohesion and belonging.” 

Fortunately, there has been at most one U.S. monkeypox death in the U.S. — a potential case in a severely immunocompromised person in Texas is under investigation — even as the national case count has swelled to 19,465 diagnoses. And after a slow start, the federal government has now doled out approximately 800,000 vaccine vials, with a heady supply arriving in short order. 

But provided how the virus, which gives rise to unsightly lesions that in some cases cause excruciating pain, is overwhelmingly spreading during sex between men, the outbreak has cast a long shadow over the gay community.    

Over 100 gay, bisexual, transgender and queer people responded to an NBC News online survey seeking to learn about how monkeypox has affected their lives. What this diverse cross-section of the community most had in common were missed opportunities. They wrote about sex they never had, dates they never went on and gatherings with friends they avoided. 

All that avoidance, the respondents made evident, was enmeshed in a cat’s cradle of fear — of contagion, of pain and suffering, of lonely and potentially financially ruinous weeks of isolation at home should they contract the virus. 

They spoke of a summer they had hoped would prove invincible but that for them has turned out to be anything but.  

A decade of sexual liberation, interrupted 

Over the past 10 years, the introduction of PrEP, the HIV prevention pill, and the emergence of landmark studies proving that successfully treating HIV blocks transmission of the virus have cultivated a resurgent sexual liberation among many GBTQ people. Long-standing anxieties about HIV have eased, and hookup apps have made meeting sexual partners as convenient as procuring takeout — hence the term “ordering in.” As a result, people like Rojas have felt free to explore and revel in sex in a way queer people haven’t since the AIDS epidemic brought to a crashing close the sexual freedoms gay men enjoyed during the 1970s.

Then, in 2020, a new viral plague kept all of society cooped up and longing for freedom. 

“Post-Covid,” said Rojas, recalling how he experienced the free-spirited bacchanalia into which monkeypox arrived in New York City this spring, “everybody went crazy, and there were sex parties all over town.”

Monkeypox swiftly pushed the contemporary safer-sex playbook out the window. Queer people have been left scrambling for answers about how to protect themselves and have expressed bewilderment as they’ve struggled to process mixed messaging from public health leaders and journalists about what poses a substantial risk of infection.

Rojas was one of the first U.S. residents to receive the prized monkeypox vaccine, in late June. But even with the benefit of his first jab of the two-dose vaccine, he has still sharply curtailed what he had hoped would be a long-awaited libertine summer. 

“I’ve stopped going to sex parties,” he said, given that public health authorities identified such gatherings of men as major monkeypox risk factors. “I also stopped having sex with people who live off their OnlyFans. I additionally stopped cruising at the gym, I did not continue to go to Fire Island, and I stopped attending orgies.”

Evidence suggests a recent tidal shift in sexual behaviors in responses to monkeypox. According to the American Men’s Internet Survey, which conducted an online poll in early August of 824 gay, bisexual and other men who have sex with men, 48% reported reducing their number of sexual partners because of the outbreak, while 50% reduced hook-ups and 49% reduced partners met on hookup apps or at sex venues.

“It’s just a small, temporary break until everybody gets the vaccine,” said Rojas, who remained so concerned about living in the nation’s monkeypox epicenter that he decamped to his family’s home in Mexico City for the summer.

Fighting over — and for — sexual freedom

Not everyone in the queer community has been on the same page regarding monkeypox precautions. Just as battles over mask mandates and school closures have turned neighbor against neighbor during the Covid pandemic, fierce internecine conflicts have arisen among GBTQ people this summer about the best ways to respond to and communicate about monkeypox.

Michael Weinstein, the president of the Los Angeles-based AIDS Healthcare Foundation, dusted off his outspoken antipathy toward PrEP and published a scathing rebuke of the sexual liberties the HIV-prevention pill has facilitated in an op-ed titled “Monkeypox Reckoning” in the Los Angeles Blade on Monday. Notorious for an unapologetically strident, moralizing and fear-based approach to HIV-prevention communication, one that is far out of step with that of the vast majority of the public health community, Weinstein decried “a wholesale abandonment of safer sex promotion in favor of PrEP.”

“There has always been a sex radical group that has defined gay liberation as absolute sexual freedom,” Weinstein wrote, blaming monkeypox on those freedoms.

For another man named Michael, who like some people interviewed preferred to go only by his first name to shield his privacy, protecting himself against monkeypox by sacrificing the very sexual freedoms that Weinstein castigates has come, he said, at a great cost.

“I am not changing my behavior with an attitude of cheerful, take-one-for-the-team compliance,” said Michael, 42, who works in education in Philadelphia. “Instead, I find the situation fearful, miserable and diminishing. I am experiencing this outbreak as a serious setback to something that is very important to me, namely sexual freedom. 

“Sex,” he continued, “isn’t just a frivolous pastime. For many of us, sex has serious meaning, sex is one of the things that makes life worth living.”

After more than two years of Covid restrictions, the arrival on U.S. shores of yet another major virus has also dealt a blow to the already strained mental health of many queer people, said LaRon Nelson, an associate professor of nursing and public health at Yale University.

“The fear of contracting monkeypox and the concern about access to the vaccine have led people to isolate or continue to isolate,” Nelson said. “That chronic exposure to this type of stress also comes at the expense of their psychological well-being.” 

J.J. Ryan, a bisexual trans man assigned female at birth, spent the height of the Covid pandemic transitioning.

“I felt like I was just surviving before. I wasn’t really living,” Ryan, 34, said of his pre-transition life. “So I was really excited to get out and live my life — for this to finally be my ‘hot boy summer.’” Instead, he said, he has sadly “sharply reduced” his sexual exploration. 

Fears of resurgent discrimination

With so many broken social, romantic, familial and sexual connections lying in pieces around them, many of the respondents to NBC News’ survey said they further dreaded that the monkeypox outbreak would fuel discrimination, hate and even violence toward LGBTQ people.

There is evidence — including a recent attack in Washington, D.C. — that such fears are beginning to manifest.

“My greatest worry in all of this is the turning of the clock back to less and less acceptance society-wise,” said Ryan, who is a Ph.D. student and a policy researcher at a nonprofit research organization in Washington.

John Pachankis, a psychologist at the Yale School of Public Health, noted how for the past two decades, queer advocacy organizations have pushed “a narrative that gay people are just like everyone else” in a successful effort to secure many civil rights protections. He spoke to the conflict that members of this community now face when the particulars of gay sex lie at the heart of the monkeypox outbreak and, as during the AIDS crisis, have become fodder for intense public debate. 

“In the context of the real threat of those rights’ being taken away,” Pachankis said, referring to the recent rising tide of anti-LGBTQ sentiment and policies in the U.S., “the last thing that you want to do is disconfirm that narrative — even if the picture is a little more nuanced, even if gay people do live distinct lives from straight people, even if they express their sexuality more creatively, some might say more authentically.” 

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Brian Minalga, 36, who is gender nonbinary and works in the HIV field in Seattle, said: “There’s this idea that there are good people with good behaviors having the good type of sex. It’s moralistic and puritanical.”

Recapitulating racial disparities

For queer people of color, the outbreak has brought an unwelcome recapitulation of the racial health disparities that have characterized both the HIV and the Covid epidemics in the U.S.

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“We saw monkeypox start with more affluent white gay men, and then eventually it seeped into more diverse networks, and that includes men of color,” said Gregorio Millett, the director of public policy at amfAR, The Foundation for AIDS Research. 

The Centers for Disease Control and Prevention and various state and local health departments have reported that monkeypox is indeed already disproportionately affecting Blacks and Latinos. And yet outsize shares of the vaccines have tended to go to whites — thanks, health advocates say, to structural factors that favor access to more privileged members of society. 

Watching such patterns play out “is painful,” said Carlos E. Rodríguez-Díaz, an associate professor at the Milken Institute School of  Public Health at George Washington University, “because it’s a reminder of the presence of systemic racism.” 

Matthew Rose, 36, a health equity advocate in Washington, D.C., spoke to the myriad ways he and his Black gay peers have been dehumanized over time. He said he feared that monkeypox, the very name of which evokes a racist trope, will only worsen matters. 

“For Black gay men, the last thing you need is to add a whole other discussion where you become this Black vector of disease,” he said.

Three viruses, one sense of fear

For some GBTQ people, fears of contagion instilled during the height of the Covid pandemic have primed further anxieties about monkeypox. The rueful history of the early AIDS epidemic serves as yet another backdrop. 

“I decided several weeks ago that intimate contact isn’t worth the risk until I am fully vaccinated and the infection rate is under control,” said Steven Dwyer, 68, who is retired and based out of Baltimore and has been living with HIV since the mid-1980s. “As a long-term AIDS survivor, I learned it’s better to get informed about disease outbreaks that could affect me.”

The plight of Jason, a Los Angeles-area screenwriter in his late 20s, is a particularly profound example of the way crippling anxieties about infectious disease can be all-consuming. Jason has lived with obsessive compulsive disorder since childhood. It causes him intense dread of contagion and contamination, as well as various compulsions in response to such thoughts and stimuli. Fear of Covid left him largely housebound. Now the monkeypox outbreak has magnified those fears just as he was starting to feel more comfortable with venturing outside.

Jason lives with his boyfriend, and they’re monogamous, so contracting monkeypox sexually isn’t a concern. But suggestions that casual contact or contaminated surfaces can transmit monkeypox have left him reluctant to push his luck with his OCD. Consequently, for Jason, it’s as if those cloistered first few months of the Covid pandemic never ended.

“I am probably one of the only people I know that still doesn’t really go out much,” he said.

Many other GBTQ people said monkeypox has led them to question going to crowded spaces, such as concerts, bars and clubs — enjoyable outings and chances to connect with fellow queer people after having lived through the lonely and dull height of Covid.

Jason has been agonizing over whether to attend an upcoming concert of a performer he loves, something he has been looking forward to for years since it got delayed because of the pandemic. And in a recent interview, Dwyer, who travels constantly, expressed concern about contracting monkeypox from hotel linens. 

Worries about monkeypox transmission even led to the cancellationof a major concert at the Southern Decadence celebration in New Orleans, which takes place over Labor Day weekend — even though it was to have been held outdoors. 

Ryan said that when he visited his family in Philadelphia before he got his first monkeypox vaccination, his mother was hesitant to hug him for fear of the virus. That only aggravated his own worries about perhaps unknowingly passing monkeypox to his young niece and nephew. 

Such hesitance from family members, said Ben Rosen, a psychotherapist at Harlem United in New York, parallels the cold shoulder many gay men got during the early AIDS crisis, “where people are being told, ‘Oh maybe you shouldn’tcome visit.’”

Recent research suggests, however, that anxieties about monkeypox transmission in public settings and other relatively casual scenarios are most likely misplaced or at least grossly overblown. According to research papers and reportsfrom global health authorities, cases of nonsexual transmission are uncommon to rare. 

Last week, Dwyer concluded that bed sheets don’t actually pose a substantial risk.

On an Aug. 19 call with reporters, Dr. Demetre Daskalakis, the deputy for the White House’s monkeypox response, said he believesattending crowded concerts is generally a low-risk activity. Merely brushing by someone, he said, is likely to be “low or no risk.”

Christopher Vasquez, 39, the director of communications at the National Center for Lesbian Rights in San Francisco, said: “I think we need to be very careful about overreacting and shutting down events. Especially after two-plus years of the LGBTQ community feeling the effects of loneliness and depression because of Covid.” 

The great work begins 

Praising the myriad ways queer activists have fought for a better response to monkeypox, including faster and broader access to vaccines, Keuroghlian of the Fenway Institute said, “The silver lining is to see the amazing ability of our community to organize with solidarity and to articulate their needs.”

There are signs such efforts are bearing fruit.

Recent reports suggest transmission slowdowns in New York, Chicago and San Francisco — likely the result, experts theorize, of changes in sexual behavior, increased vaccination and possibly immunity from past infection.

With the challenging summer coming to a close, Guillermo Rojas is freshly back in New York for the fall semester of his graduate studies at Columbia University. Sitting in Manhattan’s Lincoln Center on a humid late-summer afternoon just after a cloudburst, he expressed optimism over the future of the outbreak.

“As people start getting vaccinated and the second vaccine starts kicking in for most people, things should get back to normal,” he said. 

He got his own second shot on Wednesday.

Editor’s note: NBC News would like to hear from people who have recovered from monkeypox infection. If you have, please fill out this confidential online survey, and we may contact you for an interview.

On a sultry Tuesday evening in New York City, Luke Brown excitedly opened a newly delivered bottle of black-and-orange pills, popped his first dose in his mouth, and washed it down with root beer.

Having contracted monkeypox this month, the lanky, bespectacled 29-year-old project manager had been suffering from what he called “the most severe pain of my life” for over a week before he finally was able to obtain a course of antivirals — a treatment he hoped would soon clear up his lesions and alleviate his suffering.

For Brown, this was cause for celebration. But it was also a sobering moment for him to reflect on how, to gain access to this medication, he had to leverage high degrees of personal privilege, medical literacy and self-advocacy that he said he was guiltily aware most people at risk for monkeypox probably lack. Because to join the fortunate few who have obtained this prized medication, called TPOXX, he had to navigate what he characterized as the exasperatingly byzantine maze of the medical and public health system.

“Here we are in the epicenter of an outbreak primarily affecting gay men in the city,” Brown said of his hometown, New York, which as of Thursday had 778 confirmed monkeypox cases out of 2,593 nationwide. “The city that of anywhere in the world should have the most impressive and robust infrastructure to respond to the health care needs of gay men. And at every level it has fallen flat on its face.” 

Like many of his fellow gay and bisexual men — a demographic that comprises the vast majority monkeypox cases in the global outbreakthat has ballooned to 15,848 cases — Brown said he has grown increasingly appalled and infuriated by the nation’s response to a virus spreading so swiftly that many epidemiologists now believewill likely become endemic in the U.S. and around the world. 

While the Biden administration has in recent weeks distributednearly 200,000 doses of the Jynneos vaccine for monkeypox, U.S. prescriptions for the TPOXX antiviral have remained strictly limited.

Supply of the antiviral is not the problem; there are 1.7 million courses in the nation’s Strategic National Stockpile, according to Dennis Hruby, chief scientific officer of the U.S. pharmaceutical company SIGA, TPOXX’s manufacturer. But the drug, also known as tecovirimat, is not approved by the Food and Drug Administration to treat monkeypox as it is by regulators in the United Kingdom and the European Union; the drug is approved only for smallpox in the U.S.

This is bad news for the Americans with monkeypox who like Brown suffer from excruciating physical pain or other severe outcomes from the infection and who are desperate for treatment to speed their healing. They, and the health care providers who care for them, are up against the U.S. regulatory system.

Even as the Centers for Disease Control and Prevention continues to reduce the red tape that impedes TPOXX access, announcing new changes Friday, public health experts pointed to a complementary means of leveraging the drug’s potential power to alleviate suffering: large clinical trials of the antiviral as a monkeypox treatment.

Plans for such trials are already in advanced stages in Canada, the U.K. and the European Union, according to Hruby. The National Institutes of Health is also planning one in the Democratic Republic of the Congo. But the federal agency’s efforts to launch such research in the U.S. are only in the earliest planning stages.

“This points to a persistent issue we saw during Covid,” said James Krellenstein, a public-health activist and cofounder of the activist group PrEP4All, “where the United Kingdom and European researchers were really able to mount much quicker clinical studies than the United States was.”

Excessive barriers to prescribing

In addition to Brown, NBC News spoke with a dozen people who have taken TPOXX, all of whom suffered from extreme pain before starting the antiviral. They generally reported that within a few days of treatment, their monkeypox symptoms — the pain in particular — began to ease, much to their relief. Most reported no bothersome side effects, or, in one case at least, not bad enough to discontinue treatment. While they all acknowledged that they could not be certain how the course of the disease might have unfolded had they not taken the drug, they generally believed it had been effective for them.   

The FDA approved TPOXX as a treatment for smallpox in 2018 based on studies that had infected rabbits with rabbitpox and nonhuman primates with monkeypox. (Smallpox and monkeypox are close viral relatives, so treatments for one are expected to work for the other.) Researchers had to rely on these proxy models of similar viruses because there is no smallpox to investigate, as the virus has been eradicated; and even if there were, it would be unethical to study such a lethal pathogen in humans.

The data indicating the drug is safe for humans comes from a studyof 449 healthy people.

Typically, physicians may use their own judgment to prescribe medications off label for purposes other than those for which they were granted explicit FDA approval.

But given the lack of research on TPOXX’s efficacy in humans, federal health regulations dictate that health care providers may only prescribe the drug for monkeypox through a compassionate-use system overseen by the CDC. Physicians such as Dr. Marshall Glesby, an infectious disease specialist at Weill Cornell Medicine in New York City, said that these strict rules are excessive, including the need to review a more than 100-page treatment-protocol document to qualify as a TPOXX prescriber and to thoroughly document each case. 

Such burdens sharply limit the number of health care providers who are willing and able to prescribe TPOXX, according to clinicians who have gained such authority.

“It’s a cumbersome process,” said Dr. Anu Hazra, a physician at Howard Brown Health in Chicago who recently began prescribing the treatment.

“Because we don’t yet know how well this drug is going to work for monkeypox patients,” said Dr. Jennifer McQuiston, who leads the CDC’s monkeypox response, “it is important to ensure we have some data from patients who use it, so we can better understand the risks and benefits and ultimately help other people as well.”

Responding to health care providers’ recent complaints about the TPOXX compassionate-use system, the CDC has, for example, made optional previous requirements that clinicians submit photographs of patients’ monkeypox lesions and ship viral specimens to the agency. 

In a July 15 letter to the heads of various federal health agencies, PrEP4All and the nonprofit Partners in Health called on the CDC and FDA to end all restrictions on TPOXX’s use and to allow health care providers to freely prescribe it for monkeypox.

Friday, the CDC announced further revisions to the compassionate-use system, including plans to reduce the 100-plus-page document to under 50; pare back the number of reports physicians must fill out about each patient from six to two; and to permit virtual appointments.

“We have reduced the data we need down to the most critical pieces,” McQuiston said “and have worked to make using this drug simpler, in order to ensure doctors can get the drug to patients who need it.”   

Dr. Jason Zucker, an infectious disease specialist at Columbia University Department of Medicine whose team has prescribed the antiviral to 45 patients, said that the U.S. should launch a large randomized clinical trial including people with mild monkeypox disease. If anyone in the placebo arm should progress to severe disease, he proposed, they could be switched into a parallel compassionate-use group. This would not only address the crucial question of the drug’s efficacy but also expand access to treatment while also collecting data on people receiving it in a much more rigorous and organized fashion than he said occurs through the current system.

Jumping through hoops to get TPOXX

Luke Brown said that he first tried to gain access to TPOXX through his primary care provider, who submitted the request to New York City’s health department. The request was denied on the grounds that his case wasn’t serious enough. But then he began to suffer pain so severe all he could do was pace around his apartment for hours; even then, his physician delayed in resubmitting the request. So the well-connected Brown tapped into his contacts on social media and finally found someone who linked him to a local doctor with prescribing authority.

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“It’s infuriating,” he said of the hoops he had to jump through to obtain the drug. 

“I had to fight for the TPOXX meds,” said an online content creator known as Boomer Banks, also a New Yorker, about what he said was a maddening ordeal finding someone at the city’s health department who could help him access the treatment. “I had no privilege to leverage, just my mouth,” said Banks, who did not want to use his real name used to protect his privacy. “I’m a brown immigrant, 42-year-old HIV-positive sex worker with no insurance. I didn’t take ‘no’ as an answer.”

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A recent nonpeer reviewed study posted to a pre-print server found that in laboratory experiments, TPOXX was highly effective at neutralizing the monkeypox strain circulating in the global outbreak.

Under current CDC guidelines, TPOXX is reserved for those with severe disease, including those who are hospitalized or at high risk of a severe outcome because, for example, they are immunocompromised. Those suffering from a common symptom of the virus, intense anorectal or genital pain, qualify for TPOXX, Zucker said.

Brooklyn resident Sebastian Kohn, 39, who had a particularly severe case of monkeypox, said that days after he started TPOXX, the difference in his anorectal pain was “night and day.” 

“I can wash myself without wanting to cry,” Kohn said.

Where is the U.S.-based clinical trial?

Asked about the NIH’s plans to back a U.S.-based clinical trial of TPOXX, Judith Hewitt, deputy director of the Office of Biodefense, Research Resources and Translational Research at the National Institute of Allergy and Infectious Diseases, said that “it’s super early days” for such plans.

“There are now just beginning to be discussions about a trial in people living with HIV or at risk of HIV,” she said.  

In an email, Dr. Judith Currier, a professor of medicine at the UCLA Division of Infectious Diseases and the chair of a major HIV-related clinical trial network funded by the NIH, confirmed that a trial is being discussed. “I think the holdup is identifying the funding for this work.”

“Money is obviously the real issue here,” Hewitt said. “And so people are scrambling to do what we can do with the resources at hand.” She said the agency is debating whether, for example, to fund a study examining whether a lower dose of the Jynneos vaccine would be highly effective against monkeypox. “So that’s within the same treatment area. But then we’re still up to our eyeballs in Covid.”

Krellenstein, the activist, said, “It’s bizarre, given that we have such large supply in the strategic national stockpile and TPOXX was approved without any human efficacy data, that there weren’t ready-to-go plans for actually doing a U.S. clinical study in the event that we needed to use it.”

According to SIGA’s Hruby, the company might not even look to U.S.trial data on TPOXX to submit to the FDA. Instead, they might rely on the combined findings of the trials already primed to launch in other nations, along with safety data from compassionate-use programs worldwide.

As for how long before the company would submit the drug for FDA approval, Hruby wouldn’t speculate.

“These things always take longer than expected, especially when working with large teams,” Hruby said.

Even on a drug given priority review, the FDA typically takes six months to reach a decision.

TPOXX could help blunt monkeypox’s impact

If approved, TPOXX would offer a future in which the antiviral complements widespread vaccination among at-risk individuals to mitigate monkeypox’s impact on public health, experts said.

The virus could be treated at the very first sign of symptoms, and possibly even during the asymptomatic incubation period if testing technology advances to permit detection at that stage. Such early medical intervention would not only prevent pain and suffering, but would also very likely block transmission of the virus by shortening or eliminating the disease’s infectious period.

Treatment could also save people from the personal and financial hardship of isolating at home for what can be weeks of illness with monkeypox that’s left to resolve on its own.

What’s more, TPOXX could be used as post-exposure prophylaxis among people exposed to monkeypox, either among unvaccinated people or those who cannot be vaccinated, such as the immunocompromised, according to Columbia’s Zucker. 

The U.S. Army Medical Research and Development Command does have an established study to assess such a preventive use of this drug. And while a listing of the trial indicates participants must be Department of Defense­–affiliated personnel, according to Hruby, there actually is no such restriction.

Friday morning, Luke Brown said his pain had begun to subside and he was watching in wonder as his lesions were steadily sinking back into his skin — “like magic.”

Reflecting on the ordeal monkeypox has been for him, he said it had inspired him to become a public-health activist. 

“I’m resolved to see that no one suffers like I did, because no one needs to,” he said.

Anticipating that the U.S. monkeypox outbreak will only continue to expand, he said, “We are just at a crest of avoidable pain unless access to this drug becomes easier.”