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Europe has a case of collective public health amnesia.
The COVID-19 pandemic witnessed vaccine nationalism, contradictory official guidance and marginalized groups forced to advocate for themselves; while the early days of the HIV crisis were marred by virulent homophobia, stigmatization, and unequal access to treatments.
Now, with 16,500 cases of monkeypox reported in Europe – largely among men who have sex with men – history is repeating itself. Some communities are taking matters into their own hands, designing their own health information campaigns and even traveling across borders in search of vaccines.
POLITICO spoke to people who are desperate to protect themselves against a virus that, while described as “mild,” can cause weeks of debilitating pain and lifelong scarring.
“As a single, gay man I’ve spent my life worried about catching STIs and HIV, and the past two years additionally worried about COVID,” said Paulo, a 34-year-old Portuguese theater director. “I can’t believe I now have to worry about yet another infectious disease.”
Unable to get vaccinated in Portugal, Paulo is going to Lille, in northern France. The city, close to the Belgian border, has become an unexpected pilgrimage site for people from nearby countries due to its willingness to give shots to foreign visitors. That’s despite the fact that the government officially reserves monkeypox vaccines for French residents.
“I’m really worried about monkeypox … I don’t want to catch something that might leave me with permanent scars, cause a lot of physical pain, and put me in quarantine for a couple of weeks in the middle of the short holidays I have this summer,” he said. “Only more privileged people can travel for this specific reason and that doesn’t really feel fair.”
While Paulo may get his vaccine, the fact that many others at risk won’t anytime soon, combined with unclear public health messaging, has left people with “anger and true anxiety,” said Robbie Lawlor, co-founder of Access to Medicines Ireland, a campaign group.
The infection can spread through the kind of close contact that happens during sex, at crowded parties or even kissing on a date. The outbreak has resulted in disagreement over how to provide accurate but non-stigmatizing messaging, while limited vaccine supplies and strict eligibility criteria have left many who are desperate to get their hands on the vaccine without access.
Rates of sexually transmitted infections (STIs) were already increasing across the board, with sexual health clinics and community health groups grappling to get on top of demand for their services. “Now throw in something like monkeypox, something that’s so terrifying to so many people,” said Lawlor. “It feels like this geist that’s hanging over our community.”
Déjà vu all over again
The journey to Lille — which is only about an hour away from Brussels by train — isn’t just being made by men concerned about the health impacts of monkeypox. Wouter, a 28-year-old architect based in the Belgian capital, said he traveled to the French city at the weekend to get his jab to ease his anxiety regarding the “month-long quarantine periods and social stigma” that come with catching it.
“I’m not worried about death, but I am worried about getting scars, of course, and of catching it and having to tell people I work with that I’ve caught what society considers to be a ‘slutty gay disease’,” he said. “As long as it stays in the gay community, politicians and mainstream media don’t seem to care.”
For veteran activists, there is a strong whiff of the stigma that surrounded HIV when it first spread among gay men four decades ago.
“One of the starkest parallels is around stigma and stigmatizing language,” said Susan Cole, community engagement and marketing manager at NAM aidsmap, a U.K. charity. “It sort of reminds me of the ’80s.”
But there’s disagreement on how to address that risk of stigmatization.
“It’s complicated because the community as a whole is looking at it very differently,” explained Alex Sparrowhawk, partnerships coordinator at Terrence Higgins Trust. While those who lived through the worst days of the HIV epidemic may feel wary of explicitly calling out the group that’s most at risk, others argue that the fact that men who have sex with men are predominantly affected needs to be front and center of the messaging.
Explaining the difficulty, Peter Piot, former head of the London School of Hygiene and Tropical Medicine and an independent adviser to the European Commission, said “it’s a fine line.”
“The reality is that the overwhelming majority of people affected are men who have sex with men but it’s … a subpopulation in the community,” Piot told POLITICO.
Then there’s the debate around whether big gatherings where sex or close contact may occur — be they summer music festivals or Pride events — should be canceled altogether.
Many activists say this approach just won’t work.
“Behavioral change never worked for HIV and will not work for this one as well,” said Apostolos Kalogiannis, communications coordinator at the European AIDS Treatment Group.
“The community was really straightforward,” said Kalogiannis. Canceling events “would be the worst decision because then everything would be covered in private places and it would be much more difficult to reach that community [with] prevention and promotion of health [messaging] regarding monkeypox.”
Scrambling for doses
Complicating the debate on risk communication is the fact that there are not enough vaccines to protect those who want them.
Across Europe, vaccine eligibility policies vary. France, for example, had stockpiled the vaccine made by Danish company Bavarian Nordic to guard against a smallpox outbreak. With that vaccine now approved for monkeypox, the government has released 42,000 doses. Men who have sex with men, transgender people who have multiple partners, and sex workers are eligible.
That contrasts with other countries that are short on doses and have to limit access to subgroups of these collectives — for example the Netherlands is so far offering vaccinations only to those receiving PrEP, a prophylactic treatment against HIV. In Belgium, men who have sex with men are only eligible if they’ve had at least two STIs in the last year and can provide documentation.
Availability of the Bavarian Nordic vaccine varies widely across and within countries, and it’s hard to pinpoint the size of existing stockpiles as many governments keep this information secret for national security reasons. The Commission has ordered more than 163,000 doses jointly for the bloc, but this pales in comparison to the 250,000 shots purchased directly by France and the 130,000 bought by the U.K.
In the U.S., by contrast, the Biden administration has released over 1 million doses of the Bavarian Nordic vaccine that it had already stockpiled, and declared monkeypox a national health emergency.
According to the French Health Ministry, vaccination centers set up by the regional health authorities should provide jabs “free of charge to those eligible for vaccination who reside on the territory.” Yet Karima Chouia, head of a public health center in Lille that is distributing vaccines, said it is not limiting doses only to French residents.
“We are performing preventive vaccination so it’s open to all, and yes we also see some Belgian population turning to us to get vaccinated,” Chouia told POLITICO. “We do not create limitations based on the place of residence — it’s a world-wide epidemic. The goal is for this vaccination to be widely accessible.”
Lille isn’t the only French city stepping up to the challenge of vaccinating everyone who wants a shot. Clinics in Paris and several cities on the Franco-Italian border are following similar protocols.
In Milan, city councilor Michele Albiani has cited France’s response in a bid to pressure his country’s government to address the crisis.
“It’s unbelievable that I, in Milan, can make an appointment to get vaccinated in France but can’t do the same in my own country,” he told his followers on social media. “This is an embarrassment.”
Days later, the Italian government announced that it would begin administering a limited stock of 4,200 shots to healthcare workers and members of the LGBTQ community considered to be especially at risk. An additional 16,000 vaccines are expected to be available by the end of the month.
While community groups are being tasked with informing those most at risk about monkeypox, sexual health clinics with limited resources, like the one in Lille that Chouia runs, find themselves on the front lines of the vaccination effort.
A lot of the public health work is “falling on the shoulders of organizations that are either event organizers or advocacy groups” that don’t have the infrastructure and funding to do this work, said Cianán Russell, senior policy officer at the European branch of the International Lesbian, Gay, Bisexual, Trans and Intersex Association (ILGA-Europe).
While activists agree that sexual health clinics and community organizations are best placed to work with those most at risk of monkeypox, they need sustained support to do so.
Ann-Isabelle von Lingen, who also works at the European AIDS Treatment Group, said that there is “no long-term investment in community,” with organizations expected to be at the ready to advise and provide support when crises arise, often without the funds they need. “The Commission and local authorities need to invest in a community emergency response,” von Lingen said.
With reporting from Helen Collis.
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