Seven patients share their stories of devastating symptoms, their frustration over finding care and their efforts to help each other when doctors and officials have failed.
It began as an odd-looking pimple, or perhaps as a weird rash, or maybe as a sudden wave of fatigue in the middle of a hot summer day. The doctor was stumped, or said it was not a big deal, or — just maybe — identified it right away: monkeypox.
New York City has been the epicentre of an outbreak of an old disease that has created new havoc. More than 18,000 cases have been identified across the United States, as of the end of August, and nearly 3,000 of them have been found in the city, mostly among men who have sex with men. Increased access to an effective antiviral medication called tecovirimat, or Tpoxx, and an effort to vaccinate thousands of people most at risk have led to eased symptoms for some.
But not for everyone: Infected lesions and other complications still land some patients in the hospital. Even those with mild cases are forced to isolate at home for weeks, away from family, friends and pets. Many who recover carry psychological wounds or face social stigma. Others remain deeply frustrated with the sluggish public health response that has left so many in their community vulnerable.
Monkeypox mainly spreads through close physical contact, including sexual contact, although it can also spread via bed linens or other materials used by an infected person. People with monkeypox often get rashes or lesions, and experience flu-like symptoms.
Fatalities from the disease have been rare. Still, more than a dozen people died of monkeypox globally this year and authorities are examining whether monkeypox caused the death of a person in Texas this month. And even as new cases of monkeypox have begun to decline in New York City and around the world, doctors and scientists warn that cases are still rising in some places and that the disease remains both dangerous and not very well understood. Whether monkeypox is eradicated in New York City or becomes endemic remains to be seen.
Hazmat suits
Boomer Banks
Miguel Anda, a nightlife host and sex worker known professionally as Boomer Banks, hardly noticed the odd-looking pimple that appeared on his face June 2, when New York City had fewer than a dozen diagnosed cases of monkeypox. He had read about monkeypox, however, and it worried him.
Most New Yorkers did not have the virus on their radar at the start of the summer. But Anda remembers the Aids crisis; he is HIV positive. And as a sex worker, he said, he tries to be "more informed and more of an advocate" when it comes to sexual health.
When a second strange pimple appeared on the palm of his hand, he started "freaking out."
Anda does not have health insurance, so he called the man who used to be his doctor, Demetre Daskalakis, a former New York City health official with a long history of activism in the LGBTQ community who now works for the Centers for Disease Control and Prevention. (On August 2, President Joe Biden appointed him to help lead the national monkeypox response.)
Daskalakis "was trying to console me and assure me that everything was going to be fine," Anda said.
The doctor urged him to contact his primary care provider, who told Anda to call the Department of Health, who told him to go to the emergency room, and then, when Anda pushed back, suggested a local clinic.
When he arrived there, he found doctors and nurses waiting for him in full protective equipment, as if he had the plague. Some seemed scared, and all were "a little baffled," he said. The medical staff stood in the doorway to speak to him from a distance. "They were in hazmat suits. It just felt very sci-fi."
Later, staff members told him he was the first person they tested for monkeypox. Some were caring, but others looked at him, he said, "like I could kill them."
Anda went home to Hell's Kitchen, where he waited eight days for his test results. He found friends to babysit his dog during the month he spent in quarantine, out of fear he might infect his pet. New lesions appeared on his face on his 42nd birthday, and their extreme itchiness kept him awake for two days. The lesions left his face "ravaged," he said.
Two decades ago, Anda was addicted to meth, had Aids and was hospitalised for a month with pneumonia. He has been sober and had an undetectable HIV viral load since then, but monkeypox triggered painful memories.
"Being scared, not knowing what was going on," Anda said. "All the talking to doctors, and them not knowing what to do. It made me scared for me. It made me scared for my community."
Saturday night in the ER
Taylor Minnis
Taylor Minnis, 32, thought his monkeypox was getting better, right up until the moment he was admitted to the hospital.
Minnis had been sick for two weeks, isolated at home in the East Village with exhaustion, flu-like symptoms and lesions that spread "like wildfire" across his body. One day, he woke up in intense pain, with purple swelling above his genitals that spread toward his leg. He bundled up to cover the lesions and went to the emergency room.
"Out of nowhere it was extremely infected," he said, referring to the lesions.
Instead of a quick visit, the doctors gave him a CT scan, OxyContin for the pain and bag after bag of intravenous antibiotics.
"Saturday night in New York City in the emergency room — I'd rather be at the DMV," he said.
Monkeypox patients can be hospitalised for a range of complications, usually related to lesions or swelling in the throat or rectum that can make it difficult to eat, drink or go to the bathroom.
But Minnis was stricken by a complication — a skin infection — that doctors said can sometimes happen in monkeypox cases.
When he first became ill, Minnis' doctor said he wasn't sick enough to justify giving him Tpoxx, the antiviral medicine. But two weeks later Minnis did some searching online and realised his doctor was wrong: He was eligible for Tpoxx because he had psoriasis, a skin condition that put him at risk for more severe complications.
The discovery upset him — it felt like part of a larger pattern of medical authorities fumbling their response to the outbreak. "I honestly feel like my own doctor," he said. "They just left this all on us, to figure out what to do."
At the hospital, doctors said he qualified for a Tpoxx study being conducted at NYU Langone Medical Center.
The medicine helped, but Minnis was in the hospital for three days. "New lesions are still popping up here and there," he said, interviewed from his hospital bed.
Warning the ballroom scene
Dominic Faison
Dominic Faison, 35, is the father of the House of Ebony's New York chapter, his group, or family, in the city's competitive ballroom scene — a mostly Black and Latino LGBTQ subculture of dance and fashion that has become more widely known in recent years through television shows like Pose and Legendary.
Faison, who is known in the scene as Dominic Ebony, had competed at a ball June 25. Balls are busy places, with lots of close contact. "There's a lot of hugging," he said, adding: "A lot of us like to put our arms around each other's necks while we are talking." But he hadn't had sex for more than a month before his symptoms began.
So, when the first bump appeared on Faison's right temple, he scratched it, thinking it was a pimple, or maybe an allergic reaction to his new soap.
Then a second bump appeared, on the side of his penis. He also felt nauseated and feverish, so he called Callen-Lorde, his sexual health clinic. On July 7, a doctor there swabbed his lesions for monkeypox.
On July 11, he went to a local emergency room as his rash got worse. The staff there tested him again and sent him home. The original test finally came back that night; he was positive. Callen-Lorde then helped him sign up for Tpoxx, which he qualified for since he is HIV positive. On July 14, a delivery service dropped the drug off on his doorstep.
Faison spent two weeks in his room with the blinds closed, to avoid being seen. He said he felt like he had "chickenpox and the flu at the same time." The mental toll of isolation, and seeing the ugly lesions on his body, he said, was as hard as the physical toll. His partner, who cared for him, also eventually got infected.
The Tpoxx helped dry out his sores, and he took Benadryl to help with the itch. About three weeks after he got sick, he returned to his job at Boom Health in the Bronx, where he helps people get treatment for HIV/Aids and hepatitis C. He said he was just glad to have gotten through it.
Faison was one of the first in the ballroom scene to be public about his illness on Facebook. He said he found it frustrating that more people aren't heeding his warnings and limiting their contact with others. The rash can be so subtle, he said, that sometimes people don't even know they have it.
"We can't save everyone," Faison said. "But if we can save the majority, or at least one, it is a step."
His doctor misdiagnosed him
Brian Rice
Aware of the growing risk of monkeypox for gay men, Brian Rice received his first dose of the monkeypox vaccine July 13. Eight days later, he found a lesion near his genitals.
When Rice, 43, went to his dermatologist that day for an annual cancer screening, he asked the doctor to take a look. The doctor peered at his sore through a magnifying glass, then gave Rice the all-clear. "He said, 'No big deal, give it a couple of days, it should go away,'" said Rice, who is an HIV-positive cancer survivor.
But it did not go away. Instead, the lesion grew. By Monday, July 25, new symptoms had begun: pain, itchiness and swelling of his penis, as well as discharge.
He made an appointment with his primary care provider.
"The nurse practitioner looked at the lesion and said, 'That looks like a classic monkeypox lesion,'" said Rice. Medical staff swabbed it and sent the sample off for testing, but because Rice's HIV status put him in a high-risk category, he was told to start taking Tpoxx right away.
"I was petrified," he said.
When Rice got home, he moved his stuff into the guest room of the home he shares with his husband, Jason, in Cliffside Park, New Jersey. He began using the guest bathroom and set aside kitchen towels for his own use. And he kept his dog at arm's length, to the animal's dismay and confusion.
At first, the genital pain increased, making it harder to sleep, but the medicine soon had a dramatic effect. The pain and swelling eased, and his anxiety waned.
He allowed the dog to lick his face again, but just his ear.
Within a week, the monkeypox had almost totally cleared. The vaccine may have helped, he said, but the key was being prescribed Tpoxx right away.
"If I waited," he said, "this would have gone very, very differently for me."
Creating a Zoom community
Jeffrey Galaise
Every day at 6pm, Jeffrey Galaise turned on his webcam and started a Zoom call that had grown from a nightly check-in with a few sick friends into an online support group for dozens of people with monkeypox.
Galaise had never met most of them. The call drew people from across the country (including one man from Poland) who had few resources, little social support and no idea what the future held. But they all needed someone to talk to.
"I have story after story after story of people coming to me because they didn't know where else to go," said Galaise, who works for the New York City Department of Education.
Some participants talked about the loneliness of quarantine. Others described homophobic experiences they had seeking help from doctors. Many were worried about telling their bosses, co-workers or others in their lives about why they had been out sick. Some kept their cameras off; others refused to tell anyone their names.
"I can't tell you the amount of times I've cried," Galaise said. "The gravity of this is so complex. It's more than just like, you know, covering itself up with a Band-Aid or, you know, getting through the day."
The nightly call was inspired by a popular gay doctor on social media who took the time to chat with Galaise when his own monkeypox symptoms began. And it was one of several rituals that occupied his days in quarantine.
He began each morning by doing a thorough count of his lesions in the bathtub. At one point he had 65.
"My routine was basically I would fill the bathtub, try to go to the bathroom, cry, scream on the ground, then I would jump right into the bath because I was so unbelievably itchy and in so much pain from trying to go to the bathroom," Galaise said.
After the bath, another routine began. Because he lives with a roommate, he would spend 30 minutes disinfecting the bathroom every time he used it, even with a 102-degree fever.
"I would wipe everything down with the sanitiser, bleach everything, and then as I was leaving I would spray Lysol all over everything," he said.
Monkeypox shrunk Galaise's world down to his bedroom in Hell's Kitchen and that bleach-fumed bathroom.
"The only reason I made it through the day was because I was talking to other people that were going through the same experience that I was," he said. "Because one other sick person took their time to talk to me and I took my time to talk to them."
Doctor's orders: Eat bacon
Joshua Moran
Joshua Moran's prescription for Tpoxx came with surprising instructions: Take it with a meal of at least 600 calories and 25 grams of fat. (The fat helps the medication's effectiveness.)
"This is the only time a doctor will tell me to eat this poorly," he recalled thinking. He cooked four strips of bacon and downed two Eggo waffles with extra butter and syrup.
That feast was the high point in what had been a profound period of seclusion during quarantine.
Although Moran finally got a vaccine July 24, he took to his bed later that same afternoon, feeling hot and faint. Around that time, he noticed a small patch of irritated skin on his penis, and booked an appointment at Callen-Lorde. His doctor initially thought it was syphilis, but testing revealed it was a monkeypox lesion.
Moran tried to keep his dog, a Chihuahua, at a distance. "He's been a little sad," he said. Moran turned 30 in early August, and had to celebrate over FaceTime with friends, with a slice of confetti cake with buttercream icing from Magnolia Bakery.
As the days passed, he began to worry about how much sick time he would need to take from his job as an assistant store manager at a Starbucks on the Upper West Side. When he returned to work, he decided to tell his colleagues about his illness; he had been away so long, it felt weird not to.
"Everyone was good about it," he said. "No one was weird."
There was an unpleasant moment at work the following week, however. A customer overheard him telling a colleague about his recent bout with monkeypox, and asked why he was allowed to come to work. "It was clarified to them that I was cleared to come back," Moran said.
"I've been bullied my whole life," he added. The encounter left him momentarily upset, but he let it go: "Some people are ignorant."
'I don't want to infect others'
Oscar Diaz
Oscar Diaz, a 30-year-old consultant and artist, stopped by a CVS on July 16 to pick up medicine for a sick friend. The friend had tested negative for Covid-19, and the virus seemed to be run-of-the-mill. The two shared a meal — "Chicken noodle soup for you," Diaz recalled saying — and a hug.
It was the sort of gesture Diaz, who is queer, transgender and nonbinary and who uses they/them pronouns, was determined to bring back with the pandemic waning. But shortly after the visit, the friend developed a lesion on his knuckle and tested positive for monkeypox.
For weeks, Diaz had been trying to get vaccinated against monkeypox, but because of widespread shortages, they'd had little success. "It was very inaccessible," Diaz said.
They were anxious for their own health after their friend's positive test, but also at the possibility that they had unwittingly exposed their roommates in Brooklyn to the virus. Diaz spent hours calling clinics and refreshing the city's online monkeypox vaccine finder. On July 22, they finally snagged an appointment.
The day after the appointment, they woke up with a fever, swollen lymph nodes and what appeared to be an ingrown hair near their groin. The spot became a lesion, but the fever broke. Diaz wore a mask and carried a Lysol can whenever they ventured into the common areas of their home. They called everyone they'd come into contact with in the previous few weeks to let them know they may have been exposed to monkeypox.
More than two weeks after Diaz's first symptoms, their doctor gave them the green light to reenter society. Diaz usually drops off their laundry, but plans to do the next few loads themselves, fearing the clothes could be infectious. "I don't want to infect others," Diaz said. "I want to make sure it's done on high heat."
Around the time Diaz's quarantine ended, they got a call from a government contact tracer planning to reach out to their contacts. "You don't have to do this work, because I already did it," Diaz responded.
This article originally appeared in The New York Times.
Written by: Liam Stack, Joseph Goldstein and Sharon Otterman
Photographs by: Justin J Wee
© 2022 THE NEW YORK TIMES
