Jake* was having a normal family meal with his partner and 15-year-old son when he developed a fever. For four days he felt exhausted and had no appetite, and after a few days he developed brain fog. Twenty-four hours later an anal lesion appeared.
“It was essentially an open wound for five days that was oozing clear mucus and then blood,” Jake tells HuffPost UK.
“It was almost impossible to sit up and it was very painful to move. Opening my bowels was pure agony and my body made me do it eight or nine times a day. Each time it was a bloodbath.”
It was at the end of July that the World Health Organization (WHO) declared monkey pox a global health emergency.
The US Centers for Disease Control and Prevention (CDC) has estimated that there are more 25,000 cases worldwide – predominant in Europe, although more than 7,000 in the US, and more emerging in South America, Southeast Asia, the Western Pacific and the Eastern Mediterranean.
The virus was first reported in humans in 1970 in the Democratic Republic of Congo, after being identified in monkeys in a Danish laboratory in 1958 (hence the name). However, by 2021, there had only been seven cases in the UK.
As of August 4, there are more than 2,700 confirmed cases of smallpox in the UK, according to government figures, most in England and “a significant majority” of these, up to 75%, in London.
Its previous rarity means that knowledge of transmission among health experts is still patchy while we wait for more research, a period of stasis that echoes the early stages of Covid-19.
But this week, groups across the political spectrum in Westminster came together and signed a letter to Health Secretary Steve Barclay calling for action against a disease that is “causing real fear and anxiety” in queer communities.
Although anyone, including children, can contract monkeypox, 98% of current cases are in men who identify as gay or bisexual, or in men who have sex with men. This was confirmed by Dr. Tedros Adhanom Ghebreyesus, director-general of the WHO, who advised men to reduce the number of sexual partners while health authorities tackle the outbreak.
For decades, gay men have been subjected to an unfair stigma around sexual promiscuity, especially during the AIDS pandemic, and the lack of knowledge about the rise of monkeypox has obvious parallels with AIDS for those who remember the height of this crisis.
“We must calmly and responsibly acknowledge that this current outbreak of monkeypox primarily affects gay and bisexual men.”
– Greg Owen, PrEP Lead at Terrence Higgins Trust
So campaigners say it’s crucial that messages about smallpox transmission and vaccination are handled sensitively to prevent further stigma against the LGBTQ+ community from spreading.
“We must calmly and responsibly recognize that this current outbreak of smallpox it mainly affects gay and bisexual men,” says Greg Owen, head of PrEP at the Terrence Higgins Trust.
“We have to recognize that it’s also spreading primarily through skin-to-skin contact, which happens during sex. There’s nothing wrong with saying that. It’s very problematic if we don’t.”
Dr Mark Lawton, a sexual health and HIV consultant in Liverpool and chairman of the British Association for Sexual Health and HIV (BASHH), adds the following caution: “We believe that, in addition to direct skin-to-skin contact, smallpox is can be transmitted by contact with contaminated clothing and bedding and by nearby respiratory droplets.”
Harun Tulunay, a 35-year-old training co-ordinator working with the HIV/AIDS charity Positively UK, contracted a severe case of monkeypox in June.
“It felt like someone was ripping the flesh off my bones,” Tulunay says of her experience. The Londoner does not believe he developed monkey pox through intercourse, but through physical contact, simply by lying next to a partner.
During her hospital stay, the pain was so intense that doctors gave her opioids to try to control the discomfort.
“I couldn’t swallow, it was so bad,” she tells HuffPost UK. “The pain was worse than kidney stone pain. When they gave me antibiotics, I was crying and kicking my bed and the doctors were holding me.”
Although most cases of monkeypox are much milder, there can be mental health implications for those who catch the virus.
Jake had been in close contact with his 80-year-old father in the period before his symptoms began and this, after receiving a diagnosis, having to tell his family they could be at risk also caused him a additional stress.
“Mentally it was very difficult,” says the career services manager, who is bisexual, in his forties and based in London.
“He said let my dad know I’m in an open relationship which was stressful to share. My 80-year-old dad has so far mostly managed to deal with my bisexuality by bringing it up as little as possible. Now he puts in contact with offers for a vaccine, as he may have been exposed.”
The Department of Health and Social Care (DHSC) says it is working “rapidly” to vaccinate those at risk.
Vaccinations began in July, using Imvanex, a vaccine designed for smallpox, and NHS England has confirmed that 14,000 people have already received a shot, although priority is being given to those most at risk of getting it .
“It is important to emphasize that vaccination will not give instant protection against infection or disease, and it may take several weeks,” the WHO director-general said on July 27. “This means that vaccinated people should continue to take steps to protect themselves by avoiding close contact, including sex, with others who have or are at risk of monkeypox.”
The US declared the virus a public health emergency on Thursday. For those confirmed to have smallpox, the US CDC recommends an isolation period of two to four weeks.
Campaigners are now calling for a similar approach in the UK. Greg Owen is one of many spokespeople for queer organizations pressing the government to do more to control the spread of the virus and speed up the rollout of the vaccine.
“We want a national leader to be appointed to take into account everyone in the fragmented system in terms of tackling the monkeypox outbreak with the ultimate aim of preventing it from becoming endemic in the UK,” he tells HuffPost UK. Owen believes we “urgently” need to double the amount of vaccines with “an injection of cash, quickly” put into sexual health services.
The open letter signed by the Conservatives, Labour, Liberal Democrats, Greens and representatives of the Scottish National Party, as well as charities. echoed this: “We stand united as LGBT+ groups from all political parties to call for the government to treat the monkeypox outbreak as a public health emergency.”
Alongside the Terrence Higgins Trust and BASSH, the British HIV Association, PrEPster and the National AIDS Trust are also rallying for government action, including £51m funding from the Department of Health and Social Care.
the call Dr Lawton reiterates: “This is why the immediate mobilization of resources by the Government to ensure that the sexual health clinics, which are responsible for this, are funded to cope with the additional workload and are I have enough vaccine for everyone who needs it,” he tells HuffPost UK.
The Terrence Higgins Trust has also expressed concern that access to other vital health support is being stretched as health workers are overworked and have to focus on an influx of smallpox patients from monkey
“Some [sexual health services are] seeing a 90% reduction in access to the HIV prevention pill PrEP and long-acting reversible contraception,” the charity writes on its website.
Similar to the early days of Covid-19, monkeypox is affecting otherwise fit and healthy people.
“I don’t have any underlying medical conditions,” says James,* who is 36, and asked to remain anonymous. “I train six times a week and my fitness and health are my main priority. So for that to put me in the way it did, it was really scary. I also found the isolation very difficult, three weeks since the first sign and the symptom is very hard!
John Thomas, meanwhile, experienced only mild symptoms, but believes one of the biggest challenges is convincing men with mild cases to isolate themselves for the benefit of others.
“I think the mild cases are under-reported compared to the horror stories,” he tells HuffPost UK. “If you don’t know you have monkeypox, or if you can get away without people knowing you have it, you can spread the virus to others.”
He adds: “If I hadn’t been looking for symptoms I would almost certainly have gone to a club night on Friday. [around the time of his transmission]and probably Saturday night too.″ I think not enough is known about transmission yet, or if it is, the messages are confusing.”
Thomas is right to think twice about going clubbing, says Dr Lawton, who says it’s possible monkeypox could spread in an intense clubbing environment where people wear scantily clad clothes.
“This is definitely a potential source of infection,” he says. “It’s mainly transmitted by skin-to-skin contact, but it doesn’t have to be sexual.”
While we wait for more research, activists like Owen are trying to remain pragmatic.
Although she expresses “huge concerns”, including fears about vaccine fairness, she tells HuffPost UK: “I tend not to ‘worry’ – worrying can be really debilitating.”
* Some names and surnames have been changed to provide anonymity.
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