Brian Thomas is a nurse and TikTok creator based in the United States who makes videos about sexual health and his own HIV-positive status.
So when he developed flu-like symptoms and noticed suspicious bumps on his body in late June, he didn’t hide it from his audience.
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The global monkeypox outbreak had only just reached the US — in fact, Brian was told he was among the first people in the state of Maryland to be formally diagnosed.
“I usually take my followers to the clinic when I get screened [for sexually-transmitted diseases], just to destigmatise going and getting tested,” he said.
“I thought my video to get tested for monkeypox was going to be no different, but it was quite different. It got like a million views within, gosh, like maybe like a week.”
Monkeypox is a viral infection that causes flu-like symptoms and a distinctive skin rash or lesions. For most people, it resolves on its own within a few weeks.
Brian filmed the process of getting tested, and talked about how he was feeling as well as his recovery.
He realised a lot of healthcare providers he spoke with didn’t know what advice to give him. So he used his own nursing knowledge and talked openly in his videos about what worked to treat symptoms like headache, fever, cramping, and swelling of the anus and rectum.
“I was also very public about those symptoms because nobody wants to talk about butts, right?” he said.
“It can be embarrassing, but it needs to be said, especially as so many people are experiencing it.”
Unusual spread prompts disinformation
In July, the World Health Organization (WHO) declared monkeypox a global health emergency.
Historically, monkeypox infections have been largely restricted to west and central Africa, and the virus has not spread easily from person to person.
But in May, health authorities in the UK detected a handful of cases in people with no travel history to endemic countries, and since then, more than 30,000 cases have been detected in 88 countries.
This global outbreak is unprecedented — and has been made only more complicated by the presence of networks primed to spread disinformation, especially on social media.
Monkeypox has quickly been seized upon by anti-vaccine influencers in the US and Australia, some of whom have promoted an erroneous narrative — that the disease is a side effect of the COVID-19 vaccine — on Telegram, Facebook and other platforms.
Anti-LGBTQ groups, on the other hand, have weaponised the outbreak to push hateful and demonising rhetoric about the disease’s origin and how it spreads.
Monkeypox can affect anyone, but according to the World Health Organization, more than 97 per cent of cases in the latest outbreak have occurred in men who have sex with men.
Jaya Dantas, a professor of international health at Curtin University, said the virus predominantly spreads through close physical contact, including direct contact with body fluids or skin lesions.
Dr Dantas said that meant it could be spread via close contact during sex, and through “things like hugging or kissing”.
Transmission can also occur through contaminated clothing or bedding, and less commonly, through respiratory droplets during prolonged face-to-face contact.
While monkeypox isn’t characterised as a sexually transmitted infection, recent data indicates sexual encounters are largely driving transmission.
Leading infectious disease expert Sharon Lewin said the fact many people are contracting monkeypox during sex, and exhibiting symptoms around their genitals and anus, suggests the virus is being transmitted sexually, not just through intimate physical contact.
“This outbreak is looking very different to other outbreaks that we’ve seen,” said Professor Lewin, director of the Doherty Institute and president of the International AIDS Society.
“It’s most likely being spread through sexual contact as well as close physical contact.”
Fighting stigma while communicating risk
The challenge for social media influencers like Brian, as well as Australian public health authorities, is how to raise awareness and ensure people at risk are adequately informed, without stigmatising gay and bisexual men or letting others become complacent.
History shows us that stigmatising infectious diseases drives people away from health services and impedes public health efforts.
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“Monkeypox demands a sophisticated response,” said Australian Federation of AIDS Organisations deputy CEO Heath Paynter.
“We must recognise the reality that gay and bisexual men are shouldering the overwhelming burden of the disease.
“Over four decades of the HIV response we have learned that the most effective approach is for gay and bisexual men to craft health promotion messages and deliver them in a vocabulary and tone that is inclusive and empowering.”
Martin Holt, a long-time researcher of HIV prevention at UNSW, said people like Brian who were raising awareness about monkeypox on social media were exceedingly brave and playing a valuable role, especially where authorities were not acting fast enough.
He emphasised the need for careful messaging around the virus — even down to its name, which some experts have argued should be changed, due to concerns it has racist overtones. The WHO recently announced it is working to change the name of the virus.
Dr Holt said there was always risk in targeted messaging — that asking gay and bisexual men to respond to a health threat would result in hostile segments of the community promoting hateful rhetoric and discrimination in response.
“I think the biggest risk at this point … is the victim-blaming language that we saw was incredibly toxic in the ’80s with HIV, and that we have spent decades trying to counter.”
Stigmatisation can be addressed by involving community organisations in the messaging and the response, he said, as well as using sex-positive and and health-promoting language.
“We have to keep saying that you haven’t done anything wrong; if you get exposed to monkeypox or you get monkeypox, it’s not your fault,” he said.
Professor Lewin agreed that it was essential for governments to work closely with community organisations.
“Public health shouldn’t stigmatise any people or behaviour. What we want to do is minimise harm,” she said.
Vaccines rolled out to those at risk
This week, Australia launched its monkeypox vaccine rollout, targeting those at highest risk of contracting the virus.
So far, 66 cases have been recorded across the country.
Vaccines will initially be prioritised for people deemed close contacts; gay and bisexual men who have a high number of sexual partners, are travelling to countries where monkeypox is present, or who are immunocompromised; and people whose jobs might put them at increased risk.
While more needs to be done to understand vaccine attitudes among these groups, Professor Holt said it’s likely there would be high levels of interest from gay and bisexual men so long as they were treated with respect.
“Making vaccination as easy as possible, making sure it’s free and publicising where people can go is probably the most important thing,” he said.
Brian said he was still getting daily messages on social media from people who have been diagnosed with monkeypox and don’t know who to turn to, especially when faced with a minority who are seeking to demonise his community.
“For those people that are really preaching this idea that it’s our fault … there’s nothing anybody’s going to be able to say to convince them otherwise,” Brian said.
“The best thing I can do is just try to be as bright and outgoing and educating the public as best as I can, to try and drown them out and give people the real facts.”
