‘Somebody could die from your misinformation’ – why is there such mixed messaging on monkeypox?

Against a tense backdrop of COVID-19 and the Ukraine war, you might be aware of another global health emergency that is now jostling for space on the global landscape: monkeypox.

A demonstration in New York on 21 July calling for more government action to combat the spread of monkeypox (photo by Jeenah Moon/Getty Images)
A demonstration in New York on 21 July calling for more government action to combat the spread of monkeypox (photo by Jeenah Moon/Getty Images)

A cursory glance at the media might inform you that monkeypox is endemic in some central and western African countries. That gay and bisexual men are particularly at risk. By a process of elimination, you might decide that if you don’t fit into either of those categories, you are not at risk.

Therein lies the dangerous (and potentially fatal) crisis point in how information about this disease is being communicated.

Monkeypox is a rare disease that is caused by infection with the monkeypox virus. It was discovered in 1958 when outbreaks of a pox-like disease occurred in monkeys kept for research. The first human case was recorded in 1970 in the Democratic Republic of Congo (DRC) and since then, most cases have been reported from the DRC and Nigeria, where the virus is endemic.

So it is true that the disease originated in Africa. But since early May, monkeypox has been reported in 26 EU/EEA countries where the virus is not typically found, prompting the World Health Organization (WHO) to declare the outbreak a global public health emergency.

Latest figures published by the UK Government as of 28 July state there were 2,469 confirmed cases in the country. Of these, 2,436 are in England, with a significant majority in London. As a contrast, between 2018 and 2021, there were just seven cases of monkeypox in the UK.

Origin

The vast majority of cases in the current outbreak have no established travel links to endemic areas and early investigations show cases have mainly been reported among men who have sex with men – although it is by no means limited to that demographic.

Thus some outlets’ decision to publish images of the disease to illustrate outbreaks in Europe on black skin (including some early coverage by the BBC) seems misleading at best, and has been branded racist by the Foreign Press Association in Kenya. A group for journalists covering Africa for global outlets, it asked: “What is the convenience of using such images to tell the world how Europe and America are reeling from the outbreak of monkeypox? Is the media in the business of ‘preserving white purity’ through ‘black criminality or culpability’?”

Former NHS communications director Marcia McKnight tells PRWeek: “This is an outbreak happening in Europe and given that Europeans are 80-90 per cent white, actually shouldn’t the images be of a white person?

“It just conforms to the stereotype that Africa is this disease-ridden place and that’s not the case. It's also sloppy, because Africa is 54 countries. You need to be more specific to the fact that it can and is occurring anywhere.

“There are so many mixed messages that are coming out of the story, which actually does everyone a disservice. It’s a bit like COVID-19 – when you’ve got lots of mixed messages coming out, people ask: ‘What am I meant to be doing?’ We got there in the end, but in the early days people were confused and made up their own minds about what they needed to do to keep themselves safe.

“Why are you generating and pandering to a stereotype when actually, this is people's health? And somebody could die from your misinformation. We need to present the facts as they are, to tell the public how it spreads and how they can look after themselves, and use images pertinent to the story.”

Fellow communications expert Eric Yaverbaum, chief executive of Ericho Communications, echoes those points. He says: “Avoid mixed messaging, which undermines credibility and causes confusion and frustration. Stick to neutral tones and simple facts to help the public understand the severity of the disease without fear-mongering or creating further stigma.

“Make clear that while this is a public health crisis, there are things we can do to protect ourselves and our loved ones. It's also important to draw a distinction between this and COVID-19. For example, unlike with the beginning of the pandemic, monkeypox is a known disease and vaccines exist.”

While transmission does occur through the exchange of bodily fluids and has so far primarily affected men who have sex with men, it can also be spread by other close physical contact such as cuddling, holding hands, touching clothing, bedding or towels used by someone with the disease, or the coughs or sneezes of an individual with monkeypox when they’re close to you.

Clearly, these are not conditions limited to certain sexualities and perpetuating this myth could have dire consequences.

Stigma

McKnight adds: “It is stigmatising and blaming. I looked after some of the first Aids victims; this is reminiscent of when it first appeared on the scene and when COVID-19 first appeared on the scene. It is history repeating itself, and haven't we learned our lesson? With Aids, at first it was if you had sex with prostitutes in Africa, or if you were a gay person using the bars in California; and it was only when it entered the general population, as it were, that people realised: ‘Oh, we might die from this.’”

As a communications expert, McKnight does not think the matter is at crisis point – yet.

She adds: “I thought it was a crisis during COVID-19, actually – I thought, ‘Hang on people, we need to make sure that all the media [are] singing from the same hymn sheet.’ And this is what they should be doing around monkeypox.

“I think people do have pandemic fatigue. And I get that people are concerned about the cost-of-living crisis. I think because we've got over COVID-19, people think: ‘This will be nothing,’ particularly since you're not being asked to isolate.

“But if you lay the blame at the feet of a very specific group of people, then you lead other people to believe they don't need to worry about it too. And then when you do need to do something about it, you’ve already lost the trust of the community that you need the help from.”

One gay man, who asked to remain anonymous in this article, tells PRWeek the lack of information for at-risk groups is “shocking”.

Monkeypox vaccinations are currently recommended for some healthcare workers, some men who are gay, bisexual or have sex with other men, and people who have been in close contact with a confirmed case. The UK Health Security Agency and the NHS have stated that at-risk groups will be invited for jabs as a priority.

Official guidance states that, as more vaccines become available, more people will be offered it.

Our source says he has not yet been contacted by the NHS, so made his own arrangements for a vaccination. He describes the queues at walk-in clinics as “insane”, recounting how one friend had to wait for more than five hours before receiving his jab.

“Seriously, the lack of official guidance for gay people about this is shocking,” he says. “And it’s a worry that lots of people will just assume they dont need to worry about it if they're not gay.

“You just know once it spreads to non-gay people, gay people will be blamed – it will be framed as ‘because of their deviant lifestyles’.”

Concerns

He also expressed concern that the eligibility criteria for the vaccination (such as if you have multiple partners, participate in group sex or attend ‘sex on premises’ venues) might make some people fearful of asking for time off work to obtain the jab: “Asking your boss means basically having to disclose how sexually active you are. They should at least officially roll it out to all gay people.”

Fraser Wilson, head of media and PR at the Terence Higgins Trust (THT), says: “The latest data shows that the current monkeypox outbreak is almost entirely impacting gay and bisexual men. That means the best tactic to contain the outbreak and protect people’s health is to target that group with the up-to-date information and advice, including on transmission, testing and vaccination.

“It isn’t homophobic to say that monkeypox is currently primarily an issue for gay and bisexual men, it’s the most impactful way to reach those who need to be reached. But it’s important to address misinformation. For example, monkeypox isn’t a sexually transmitted infection, but is currently spreading among sexual networks due to the close contact involved during sex.

“Similarly, it’s not the case that only gay men can get monkeypox, it’s just that it is currently spreading through these sexual networks. The reason that sexual health services are stepping up to lead the response is because the outbreak was first detected via those services by people mistaking the symptoms for those of an STI.”

THT has responded to the outbreak by spearheading a digital campaign on social media specifically targeting gay and bisexual men, as well as working with LGBT media.

Wilson adds: “There will always be certain journalists and outlets who will distort data and targeted messaging for clicks, but we’re continuing to do whatever we can to share trusted health information about monkeypox directly to those most at risk. However, media relations continues to be an important tool for us to apply pressure to the relevant bodies to respond to the growing challenge of moneypox in a proportionate way with the support sexual health services need to deliver testing and vaccination in addition to their vital day-to-day work. The monkeypox epidemic is growing fast and the response is currently lagging way behind. We need to see far greater co-ordination between the UK Health Security Agency, NHS England and the Department of Health to tackle the outbreak and prioritise the health of gay and bisexual men.

“An issue at the start of the European outbreak was the media’s use of photos of black children with monkeypox, because those were the images available to journalists, but which perpetuated racism and stereotypes about black people in an insidious way. Fortunately, we now have photos specifically from the current UK outbreak and other predominantly white countries and these ones – issued by the UK Health Security Agency – should be the ones which are used. Otherwise, we risk the impact on black people could be similar to the attitudes (and worse) towards Asian people during COVID-19.”

A spokesperson for the UKHSA tells PRWeek: “We recognise the importance of preventing stigmatisation while communicating important public health advice to those more likely to acquire the infection, so they can make informed decisions about their own health.

“Infections don’t care about sexuality, so, while we’re focused on reaching those that are most likely to be affected, it’s important everyone is aware of and stays alert for monkeypox symptoms, particularly if they have had a new sexual partner recently. If you have monkeypox symptoms, stay at home and contact 111 or your local sexual health service for advice.


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