One Year On From Monkeypox, Scars Remain For The LGBT+ Community

In the spring of 2022 Brits were travelling on holiday again as Covid infections started to ebb. Flights were booked. Festivals were being staged. Destinations such as Gran Canaria, Barcelona, and Tel Aviv promised welcome respite after the lockdowns and social isolation of the two previous years. Time Magazine cautiously heralded a return to ´normal´.

Within weeks, though, a new virus was causing yet more anxiety and illness. Monkeypox, now referred to by the World Health Organisation (WHO) as mpox, was being transmitted through close person to person contact, particularly among gay and bi men who have sex with men (GBMSM).

Some of the first people to experience symptoms had been abroad, but others were infected in the UK, and the ´incubation period´ meant it could take up to three weeks for an individual to become symptomatic. 

The virus typically causes a fever, a headache, swollen glands, chills and a rash. Some of the first people to fall ill assumed they had been infected by the Coronavirus.

Within days of experiencing these first symptoms, lesions can appear, commonly in the genital areas, around the anus and in the mouth. Though there was scant information at the beginning of the outbreak, few who were infected understood what they were dealing with. 

The UK’s mpox outbreak “caused real fear within the LGBT+ community,” says a spokesperson from Terrence Higgins Trust, the UK´s leading sexual health charity.

“The Government’s response was lacklustre and lacked meaningful leadership. The place to go for answers about mpox was unclear and there was a lack of targeted and non-stigmatising messaging about what to do. For many, the slow response from the Government felt worryingly familiar to the HIV epidemic.” 

When Harun Tulunay from London was hospitalised, he shared his experience online, seeking to demystify the virus, and destigmatise those affected.

He tells HuffPost UK: “There’s still a lot of misunderstanding around it just being transmitted in the gay, bi and trans community…but it’s not (only) a sexually transmitted condition. People like to blame the community, but we take care of and protect ourselves and that benefits the wider public.”

In the first few weeks of the outbreak – the first recorded infection occurred in London on May 6 2022 – there was considerable alarm. For some, the symptoms proved very painful. It wasn’t clear to infected individuals whether, indeed how, they were at risk of transmitting the virus to loved ones, family and household contacts.

Contact tracing was difficult to achieve, sexual health clinics were overwhelmed, and people with visible symptoms were having to make decisions about who to go to for help and whether they could continue going into work.

“Many of those who were diagnosed with mpox last summer faced the most appalling stigma – from the mainstream media; on social media; from friends, and potential or previous sexual partners. That stigma hurts people,” says Dr Will Nutland, Co-Director of The Love Tank, a community organisation providing sexual health outreach services.

“The Love Tank talked to people who were terrified of getting mpox: from people who said they would have been kicked out of their home, or they would lose their job.”

Ian Howley, CEO of LGBT HERO, a national health and wellbeing charity for LGBTQ+ people, agrees that there were dramatic consequences.

In August 2022, LGBT HERO surveyed over 500 gay and bisexual men about their thoughts on mpox.

Howley tells us: “42% said mpox had a negative impact on their mental wellbeing. Mpox was pretty much labelled as a ‘gay disease’ – a throwback to HIV and AIDS in the 1980s…Gay men were being called ‘monkeypox f*****’ in the streets.

“The stigma created during the outbreak was shameful because all I saw was a community coming together to beat the virus. What we did should have been celebrated but that narrative was lacking.”

Dr Nutland emphasises the contribution LGBT+ people made in driving down infection: “Early on in the outbreak we know that some queer men took measures to reduce their mpox risk, including taking a break from sex.”

Terrence Higgins Trust likewise observed behavioural changes in those first months of the epidemic: “During the height of the mpox outbreak, some gay and bisexual men…reduced their number of sexual partners to reduce their risks in the short-term, especially while vaccine access was limited.”

Referring to their survey, LGBT HERO stresses that “for a short period of time nearly 40% said they stopped having sex.”

Unfortunately, the queer community still faced a backlash.

“Because I work in sexual health, and I am sex positive, I received very discriminatory messages,” Harun recalled.

″(They were) saying I should have kept my knickers on and not been so promiscuous…I even received messages on apps: ‘you’re a sexual health worker and you had mpox, what an irony.’”

It was obvious that vaccinating those most at risk with the vaccine was crucial in stopping mpox from becoming endemic, and while the vaccination program enjoyed considerable success in encouraging people to receive a first vaccination, over 68,000 adults up to the end of March this year, some reports suggest that individuals are now hearing from clinics that second vaccines are no longer available.  

At the beginning of 2023, the government updated that they had procured 150,000 vials of mpox vaccine, and these would reach priority groups using new, ‘fractional dosing’ methods for administering the vaccine, but in Parliament, Andrew Gwynne MP, a Shadow Minister for Labour, has highlighted what he has been hearing, namely that sexual health services are under unprecedented pressure due to mpox: “Service displacement means that appointments for PrEP, STI testing and long-active, reversible contraceptives have been cut. That has also led to reported hesitancy by clinics to deliver mpox vaccines.”

Anthony* in Lancashire was advised he couldn’t get a vaccine in his local clinic, or one in the nearest city: “I was told I might need to go to Manchester, but even then, it wasn’t sure I would get one.”

“In clinics there are crazy criteria being introduced,” Harun cautions. “What about the hospitality workers, people who are eligible, (and should), but aren’t getting the vaccine?” 

Somewhat surprisingly, the UKHSA has confirmed that vaccinations for mpox will, in fact, be wound down. They highlighted that due to a sustained reduction in mpox case numbers across England, “the vaccination programme is no longer needed as an outbreak control measure.”

While first doses remain available for men who have sex with men ‘at highest risk’ from mpox until 16 June, with second doses available until the end of July, it’s notable the WHO has recently stated it still considers mpox a “public health emergency of international concern.”

As we approach another summer of social events, some in the queer community warn we must guard against complacency that mpox is fully contained and dealt with.

“Given the levels of global travel, it is easy to see how future outbreaks could occur amongst people from the UK. We need proper, consistent mpox vaccination programmes in the UK,” recommends Dr Will Nutland.

The UKHSA will retain ‘vaccine resilience’ to respond if there is an increase in cases in the future: “Whilst current numbers of cases in the UK are low compared to the highs seen last July, the global picture is more variable, and it is reasonable to expect that we will see sporadic imported cases going forward.”

Mpox cases have indeed fallen across the UK, from a high of 350 per week in July 2022 to just 6 new cases during the first quarter of 2023, but Chloe Orkin, Professor of Infection and Inequities at Queen Mary University of London, worries these headline figures obscure the severe morbidity people infected with mpox can still experience.

She says: “During the course of the year we have learned that mpox can be a life-threatening condition for people living with advanced HIV infection.

“People who are well on HIV treatment have similar outcomes to people without HIV, but for people with advanced immunosuppression (CD4 count <100) the mortality is close to 30%.”

She encourages HIV testing for all infected with mpox.

Ian Howley of LGBT Hero corroborates the view there’s work still to be done to eradicate the virus. “Reinfection is a real thing and there’s many who still haven’t been vaccinated or taken up their second dose. Recently, we did a focus group with over 70 gay and bisexual men regarding sexual wellbeing, almost all thought mpox isn’t an issue anymore. It’s important that just because we are not hearing about it anymore doesn’t mean there’s no infections occurring in our community. Mpox is still a serious disease.”

Katy Sinka, Head of Sexually Transmitted Infections at UKHSA, ends with this vital reminder: “Vaccination is one of the best ways to protect yourself from the disease, offering 78% protection against the virus from 14 days after receiving it, with the second dose aiming to provide longer term protection.”