‘I felt like they were afraid of me.’ Monkeypox patients call out lack of support from healthcare professionals, government

Without emergency treatment, lesions from monkeypox would have cost Brandon sight in one of his eyes.

The 36-year-old from Toronto contracted the virus in mid-June and the effects were physically and psychologically brutal. Forced to quarantine for 21 days, Brandon—who did not want his last name used because he has family living in a South American country where homosexuality remains illegal—says he was lonely, afraid and in despair.

Such feelings stem from those who develop monkeypox being forced to quarantine for at least 21 days, with no financial support from governments and with little practical information or support from the healthcare system about how to care for themselves. Many, especially those who may not be open about their sexuality, are also facing stigmatization from the disease. 

Brandon developed multiple lesions, including on his scalp, soles of his feet, backs of his arms, forehead and neck, as well as a particularly painful one on his buttocks. 

“The lesions on my scalp, the base of the neck, the soles of my feet, were not insanely painful, but it was constant,” Brandon says. “There was no break from discomfort, which was brutal, debilitating at times. I’d go to sleep and wake up a day later.”

If he hadn’t been prescribed emergency treatment with the antiviral tecovirimat, also known as Tpoxx, the lesions he developed around his eye, his doctors said, would have left him blind. The drug is in very short supply in Canada and the U.S., as it has only officially been approved for treatment of smallpox. It is only being prescribed for the most serious cases.

As someone who contracted monkeypox early in this epidemic, Brandon became part of an ongoing medical study, which helped him to obtain urgent medical care when needed, including access to Tpoxx. He says he knows others with monkeypox who have found accessing medical care to be much more difficult.

While Brandon is thankful to have received the care he needed, he says the attitudes of some medical professionals still made him feel stigmatized. A trip to the hospital for his eye ended with him being led out of the ER by a nurse in full protective equipment. He was forced to isolate in a large room, to wait for five hours for an ophthalmologist.

“I ensured that anyone who could see me could see I was double-masked. But I would overhear staff whispering, ‘Oh, that’s the guy with …’” 

At one point, a nurse came into the room and began to sanitize everything he’d touched. “I felt like such an outcast, felt like they were afraid of me,” Brandon says. 

Brandon, who is of mixed European-Caribbean heritage, doesn’t feel that the treatment he received was motivated by racism or homophobia. But he says that fear of racism or homophobia could be making other people afraid to seek treatment.

“The advice is if you’re experiencing symptoms, seek care from a healthcare professional. But what if you’ve been acting out of the socio-cultural norms for your culture?” he asks. “Since monkeypox is widely labelled as a gay man’s disease, you could be cast out of your family, social circle, work circles. It’s really going to impact people taking care of themselves.”

Those working directly with those who have contracted monkeypox agree that stigmatization, homophobia, racism and lack of access to healthcare or support are leaving patients feeling abandoned—which could cause the virus to spread far more widely. 

“Gay men are being terrorized by monkeypox right now.”

While monkeypox cases have begun to decline in Europe, new infections are showing “a steep rise” in the Americas, according to the WHO.

“Gay men are being terrorized by monkeypox right now,” says Len Tooley, the director of evaluation at the Community-Based Research Centre (CBRC), a Vancouver-based organization that promotes the health of people with diverse genders and sexualities. “What is the benefit of going to the emergency room and being treated like you have the plague?” 

Tooley, who also runs a website for those with monkeypox, says he’s encountering people with the virus through the CBRC who simply don’t know where to turn. Some are scared to get tested because of the stigma attached to the virus. And even those who seek medical care are finding that very little practical help is available.

“People aren’t getting tested, people with more serious cases, with major infections, with rectal pain so bad they’ll stop eating, there isn’t anywhere for these folks to go to get care. A lot of folks are alone and very scared for their health.”

Tooley says the impact on those who aren’t open about their sexuality, especially on those living in homophobic countries or cultures or with homophobic family or roommates, could be made worse by a reluctance to seek testing or care. Admitting to having monkeypox could even put their lives in danger.

“These are very similar factors that led to COVID spreading in marginalized communities,” he says. “Because monkeypox is such a marker of gayness right now…. There’s a good chance monkeypox will signal to everybody they’ve had gay sex; it could be a real threat to their well-being.”

Health data collected so far shows that monkeypox has disproportionately affected communities of colour in the U.S. A report from late July from the Centres for Disease Control showed that 58 percent of those with monkeypox were Black or Latino, although those groups make up only about 30 percent of the total population.

And those figures may reflect an under-reporting of actual cases among Black populations because of stigmatization, says Grazell Howard, the chair of the Black AIDS Institute in Los Angeles. The approach to monkeypox is parallelling the early response to HIV, she says.

“The HIV message started out that it was a gay disease, it was a gay cancer,” she says. “Even before we even had the name, it had been labelled, demonized, villainized, stigmatized…. When you lead with that, it then sets up a barrier for the entire community.”

That same pattern is being repeated with monkeypox, says Howard. Black men who are already reluctant to seek care because of institutionalized racism in the healthcare system are made even more afraid to seek treatment or testing for monkeypox, whether they have sex with men or not. Shame-based messaging, which falsely implies all those who contract monkeypox are promiscuous and careless, could have a deadly effect, she says.

“Not only are we saying it’s MSM [men who have sex with men] who get monkeypox, we’re saying it’s MSM who have been partying with multiple partners, who are irresponsible orgy-seekers. Not only is it multiple partners, it’s unknown partners.”

Similar issues are arising in Canada, says OmiSoore Dryden, the James R. Johnston Chair in Black Canadian Studies in Dalhousie University’s Faculty of Medicine, and an associate professor in the Department of Community Health & Epidemiology.

Dryden, who written extensively on health in Black queer communities in Canada, says the fact that monkeypox originated in Africa is affecting the way it’s being viewed.

“Through the HIV/AIDS epidemic, we also had to grapple with an ‘epidemic of meaning,’ where homophobic and racist social stories stood in for scientific truths and directed scientific research,” she writes in an email to Xtra. “There is an overdetermination that monkeypox is just from over there, now ‘suddenly’ happening to some people over here.”

This framing of the monkeypox virus also plays on stereotypes of sexuality and promiscuity, she says.

“To think of monkeypox as a sexually transmitted infection exacerbates stigma around sex, and overinflates the mistaken belief that monkeypox is a virus that only impacts African, Black and gay people,” says Dryden. “We really need to be enraged at the staying power of framing contagious viruses through anti-Black homophobia.”

Access is also a major issue for minority communities in America, says Howard. She says Black men in New York and other major cities have already had trouble getting vaccinated, even at sites set up specifically for those communities. Black people were not hearing about those sites, she says, and white people took up their slots in some cases.

“Those with contacts in the medical community were showing up at sites for underserved communities. Access isn’t always about where to go, it’s about knowing when to go. In order to access, you must first be informed. And if the message and the messenger are defective, then what will propel you to seek care?” 

“There is zero support, financial or otherwise, for those who do get monkeypox.” 

Both Canada and the U.S. have limited vaccines available. Being fully vaccinated requires two doses, but both countries are prioritizing first doses. In fact, the U.S. has begun dividing the vaccines into smaller doses than normal to allow more people to receive it—but the strategy is already causing some issues as practitioners say they’re unable to extract the required number of doses from each bottle. Theresa Tam, Canada’s chief public health officer, says Canada is not yet planning to follow suit. 

Advocates have also pointed out that there is zero support, financial or otherwise, for those who do get monkeypox. Tooley, who has had monkeypox himself, says those with the virus are being left to cope by themselves with a disease that requires a minimum of 21 days’ isolation.

When he was ill, Tooley was constantly exhausted and had headaches so bad that he vomited. Over the course of nine days, he developed seven lesions, including one on each buttock. Some were extremely painful and some were very itchy.

“They had different levels of discomfort, but sitting down was not always a lot of fun.”

He says his lover, who contracted the virus from him and with whom he was quarantining, developed a pock on the sole of his foot, which made walking extremely painful. The two were alone with nobody else to care for them. Changing and applying each other’s wound dressings with nowhere to turn for help reminded him of the early days of the AIDS epidemic, he said.

As well as stigmatization and lack of access, just being able to make it through a three-week isolation period without any financial support is a major burden for those from socio-economically disadvantaged communities.

“I’ve not heard of one action directly aimed at helping people with monkeypox get through this,” Tooley says.

He points out that sex workers, for example, could face major problems.

“Not having consistent sources of income for three weeks is hitting them hard. And then there’s the terrifying reality of having pox all over your bodies; these marks could take weeks to heal, if at all.”

Brandon agrees that for many people, isolating for at least 21 days without any financial support simply isn’t doable. He was able to make it through his isolation, but notes that not everybody has the means to order food or medical supplies to be delivered or to ensure clothing and bedding is thoroughly cleaned.

“People have appointments to attend, they have other medical issues, maybe mental health issues. An individual who is perhaps homeless cannot afford to walk into a drugstore and buy a pack of bandages. Some people don’t have access to credit and have to go to the grocery store and pay cash.”

Brandon says governments and public health agencies need to start supporting those with monkeypox and taking it seriously.

“Even if it’s confined to gay men, that is still a part of our general population—we are still here. It’s affecting one community more than others right now, but it won’t be long before it’s affecting others,” he says, noting that governments should be worrying less about cost and more about public health. “We need to get our heads out of our asses.”