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Fighting the stigmatization of monkeypox patients

Posted on August 11th, 2022 by in Pharma R&D

When disease outbreaks occur, health experts are not only faced with the challenge of getting good information out to people – they also must battle misinformation. Rumors fly, people share bits and pieces of articles that they only skimmed, and social media posts full of bad science go viral. Sometimes, when the outbreak begins in a certain locality or hits a particular demographic really hard, they must also contend with the problem of stigmatization – which is now happening with the monkeypox outbreak.

The dangers of stigma and misinformation

Recently declared a public emergency by the World Health Organization (WHO), monkeypox is spreading especially fast among gay, bisexual and other men who have sex with men (MSM). Public health experts and advocacy groups have been hard at work doing outreach to this demographic, informing them of the signs of monkeypox and getting people lined up for vaccination appointments. However, there is deep concern that, not only could the monkeypox outbreak present a health crisis for MSM, but there is also the risk that LGBT people will again have to endure the stigma of being associated with an infectious disease.

WHO Director General Tedros Adhanom Ghebreyesus made a statement that men who have sex with men should reduce their number of sexual partners right now to help combat the spread of monkeypox. While this advice may be reasonable given that MSM account for the vast majority of current cases, it could be twisted – intentionally or unintentionally – to make people think that monkeypox is only spread through sex, which is untrue. Monkeypox is not an STD. It spreads largely through skin-to-skin contact (presenting via a rash and lesions on the body), but it’s possible that one can also become infected by, for instance, handling the bedsheets of someone who has it.

Thinking it is a disease that only affects MSM could create a false sense of security among straight people or people who don’t have many sex partners at a time when everyone needs to be most vigilant about recognizing the disease and isolating if they get it. This is all reminiscent of the HIV/AIDS crisis, particularly in the first deadly decade of the disease, when it was seen as “gay cancer.” Already a stigmatized group, the gay community in the ‘80s and ‘90s had to fight incredibly hard to get public health awareness and support for studying and treating the disease. Meanwhile, it began to spread more widely among the general population, many of whom imagined they were immune because they weren’t gay.

What can we do to fight the stigma?

The continued and dogged dissemination of accurate information is crucial, which can help push out some of the bad information. Public health officials should be honest with people, including about things they don’t know yet, and provide regular updates on new knowledge. For instance, some researchers in London are finding that the current monkeypox outbreak is revealing symptoms that differ from previous outbreaks: “Patients reported less fever and tiredness and more skin lesions in their genital and anal areas than typically seen in monkeypox.”

Making health resources readily and freely available to everyone – including poor, uninsured and undocumented people – is important too, along with encouragement for anyone who thinks they have symptoms to see a doctor immediately. If people feel confident that they can get safe and free medical advice, without judgement, that can make it more likely that those infected (or at high risk of infection) will seek help early.

Writers like Owen Jones and Zoe Williams have also made a powerful case that we can’t be afraid to admit that the monkeypox outbreak is mostly affecting men who have sex with men so far, and that we need to be willing to talk openly about sex and disease. De-stigmatization won’t come from secrecy or only whispering the truth, but rather by having frank discussions and countering homophobic prejudices directly.

It is important, too, to be aware of other types of prejudices that can creep into the response to an outbreak like this. Even though CDC data show that the majority of monkeypox patients are people of color, 75% of the participants in a recent New England Journal of Medicine study (the largest study so far of the current outbreak) were white men. This kind of distorted focus can result in groups of people who need the most attention going ignored.

A multi-front battle against monkeypox

With monkeypox, we appear to be dealing with a disease that, though often extremely painful, has a relatively low hospitalization rate (13%, according to the NEJM study) and already has a vaccine, so the long-term health consequences are not as grave as AIDS once was. However, the consequences of stigmatization can be quite serious. Hate crimes against Asians and people of Asian descent went up exponentially in the wake of Covid-19, for instance.

We must be vigilant about the potential for a similar response to MSM (and, possibly, the larger LGBT community) over monkeypox. We need to be ready to battle bigotry, misinformation, and the disease itself. 

Read more about the mobilization against monkeypox here.

Visit the Monkeypox Elsevier Healthcare Hub for evidence-based clinical resources, including clinical overviews, patient education and drug monographs.

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