Some of what’s below is directly about the stigma issue you raised. But I couldn’t resist adding some points about other bees in my bonnet regarding monkeypox risk communication.
1. Protecting people’s health and telling them the truth are way more important goals than avoiding stigma.
I think this is probably the most important thing I want to say about the issues you’re raising. There’s no doubt that stigmatizing any group of people does harm. Public health officials (and reporters covering public health issues) should not only avoid stigmatizing people; they should take proactive steps to combat stigmatization.
But I think it’s horrifying when public health officials (or reporters covering public health issues) pussyfoot around stigma concerns in ways that fail to give people the information they need to make decent decisions about their own health.
As you know, I have written a lot about the conflict between truth and health as public health goals – the dilemma officials face when being less than totally truthful could strengthen the argument for taking recommended precautions, and thus could potentially save lives. But as I understand the monkeypox situation, truth and health are on the same side of the balance. Truth and health both require officials (and reporters) to offer men who have sex with men (MSM) the best available information on who faces the greatest monkeypox risk and what behaviors are thought to exacerbate that risk. Fear of stigmatization is an unacceptable reason to withhold or even to soft-pedal this information.
Worse yet, I think many officials (and reporters) aren’t pussyfooting around crucial health information in order to avoid stigmatizing MSM. They are pussyfooting in order to avoid being accused of stigmatizing MSM. They are protecting themselves from controversy, at the expense of the wellbeing of the group they claim to be protecting from stigma.
2. Telling people what you know doesn’t mean claiming to know more than you know.
When talking with each other in webinars and on listservs, infectious disease experts are fairly candid about how little they know about monkeypox. The number of cases until recently was small, and the cases occurred mostly in places whose overburdened health practitioners weren’t necessarily prioritizing detailed data collection. Moreover, monkeypox just recently started spreading in places where local transmission was previously unknown. So at least the conditions of these new cases are unprecedented; and maybe the virus itself has new characteristics as well.
How likely is sexual transmission of monkeypox? Airborne transmission? Asymptomatic or presymptomatic transmission? What will the case fatality rate be in the developed world? What health sequelae will be observed in people who have recovered? The list of unanswered or very tentatively answered questions is long.
This we know for sure: We will learn things about monkeypox in the coming weeks that we have never known before – and some of what we learn will contradict what we thought we knew.
I am not suggesting that public health officials should keep silent or confine themselves to statements they’re 100% sure are true. Though the word “speculation” has a negative connotation, good risk communication is necessarily speculative – and never more so than when the topic is an emerging health risk about which little is known for sure. Officials (and reporters) need to provide the public with the best information and the best advice they can.
That means not just telling people what you know for sure, but also telling them what you suspect. But – and this is a crucial “but” – it also means telling them which is which. The goal is to reproduce in your audience your own level of confidence. “We’re almost sure about X. We think Y is probable, even though there isn’t a great deal of proof yet. We’re beginning to suspect Z, but that’s really just a hunch and we won’t be very surprised if we turn out wrong about Z.”
One of the biggest flaws in COVID risk communication has been overconfidence: asserting probabilities and hunches as if they were certainties. I’m seeing the same flaw in monkeypox risk communication.
Overconfidence is tempting mostly because we suspect the public will be likelier to believe what we say and do what we recommend if we sound like we’re sure. But overconfidence backfires in three distinct ways:
- Some people smell a rat from the outset; they disbelieve and distrust us simply because we sounded too damn confident.
- Some people believe us at first, but then the evidence emerges that we were wrong – or at least that we had no business being so cocksure. They feel betrayed and misled. It will be a long time before they believe us or trust us on anything else.
- Some people believe us and keep right on believing us, even after evidence emerges that we were wrong. Our overconfidence becomes their overconfidence. Even if we eventually (and reluctantly) recant, they will stick stubbornly to our initial misstatement.
When tentative information is presented as tentative, it’s a lot easier for the source to revise the message as new information materializes – and a lot easier for the audience to accept the revision without losing trust in the source.
Importantly, advice that’s grounded in tentative information doesn’t have to be tentative. “We don’t really know yet whether monkeypox remains transmissible after the lesions are gone – and if so, for how long. Our advice to people recovering from monkeypox is to abstain from sex for [however long]. That may turn out unnecessary, but it’s a wise precaution to protect your partners. And to protect yourself, we recommend avoiding sex or even cuddling (or other close contact) with people until [however long] after their monkeypox lesions have healed.”
3. Caution is different from stigma.
The last sentence in #2 reminds me of another point worth making about stigma: Avoiding potentially dangerous contact with people likelier than others to have a specific transmissible disease isn’t stigma. It’s caution. It should be recommended, not attacked.
(In 2014, Jody Lanard and I wrote here about the distinction between stigma and caution in the context of Ebola. See also here for some additional thoughts on stigma and risk communication.)
In the early weeks of COVID’s spread in the United States, about the only thing we knew for sure about the SARS-CoV-2 virus was that its epicenter had been Wuhan, China. Until local spread caught up, it made sense to think that travelers from China were likelier to be carrying the virus than other people. Since the waitstaff and kitchen staff of Chinese restaurants were likelier than other people to have traveled to China in recent weeks, many residents of cities like New York and San Francisco started avoiding Chinese restaurants. This was not racism or stigma. It was caution. Chinese-Americans in New York’s and San Francisco’s Chinatowns also avoided Chinese restaurants, for the same reason.
But New York Mayor Bill deBlasio famously encouraged New Yorkers to resist this wholly rational caution and patronize the city’s Chinese establishments. And the head of a California health agency for which I was consulting steadfastly refused to say anything that might sound even halfway-approving of any association between COVID and travelers from China.
The relevant association now is between monkeypox and MSM. We don’t know yet how strong that association is. We don’t know yet whether it is intrinsic in some way or a coincidence resulting from two homosexual raves in two European cities. And insofar as the association is real, we don’t know yet whether it will last. Bisexuality is common enough in the U.S. today that that alone seems capable of ensuring the spread of monkeypox to heterosexuals.
But in the short term, avoiding sex with men who have sex with men is a sensible precaution, especially if checking their bodies for lesions sounds impractical (or even unthinkable). Recommending that precaution is good public health (and good reporting). Avoiding such a recommendation because it’s likely to get you accused of stigmatization is bad public health (and bad reporting).
The risk communication strategy likeliest to protect against accusations of stigmatization is called counterprojection. “Though we hope they won’t, some people may see this recommendation as stigmatizing MSM. We have to take that risk in our struggle to tell people of all sexual preferences what we think they should know to avoid transmitting or catching the monkeypox virus.”
4. Describing is different from signaling.
This is the most abstract point that’s coming to mind as I think about monkeypox risk communication.
When writing about a risk of uncertain magnitude, public health officials (and reporters) tend to choose their words based largely on whether they judge that their audience is overreacting and in need of reassurance, or underreacting and in need of some good old-fashioned alarmism. The words chosen in response to this judgment are signals rather than descriptions. They are chosen to suggest that the audience should either “Calm down” or “Watch out!”
“Mild” for example is a signaling word. It doesn’t have a solid definition. Some illnesses are so minor it’s hard to justify saying they’re not mild; some are so severe it’s hard to justify saying they’re mild. But in a vast middle “mild” is a signal, not a description: It says we don’t want you to worry about this as much as we think you are worrying, or think you’re likely to worry.
All those articles saying that monkeypox is usually mild are signaling that the audience should calm down. Estimates of the monkeypox case fatality rate in Africa vary. Some estimates hover around 3%. A 3% CFR is about what the 1918 flu had. No one would call the 1918 pandemic mild. So why would we call monkeypox mild? Because we’re signaling.
Similarly, “concerning” as opposed to “alarming” is a signal. If we want you to worry more about something, we say it’s “alarming.” If we want you to worry less, we deny it’s “alarming” and insist on “concerning” instead. I could argue that a risk is “concerning” if you should integrate it with your other concerns, whereas it’s “alarming” if you should set aside your other concerns for now and focus on this big one. But neither meaning is solid. There is nothing solidly descriptive about these terms. They’re signals.
I have three generic risk communication recommendations about signals versus descriptions:
(1) Yes, public health officials (and reporters) should signal. Decide whether you want to get people more upset (what I call “precaution advocacy”) or less upset (my term for that is “outrage management”) – and then deploy risk communication strategies to match. You’re not just trying to “educate” people on the facts of the situation; you’re also trying to signal how upset you think they should be.
(2) The decision of which signal to give should be grounded in your own level of concern/upsetness. The goal should be to reproduce in your audience your level of concern. It’s dishonorable to try to get people more or less upset than you are, or than you think the situation objectively justifies. Trying to keep the public “calm” (more calm than the situation justifies) so they’ll leave you alone to manage the problem or so they won’t panic isn’t good risk communication; neither is trying to get the public more upset than the situation justifies so they’ll take some precaution you want them to take (like getting their kids vaccinated against COVID or joining your demonstration against a nearby polluter).
(3) Your signaling goal shouldn’t contaminate your description of reality. Telling people what you know should be objective. It’s not good risk communication to lie about the data or mislead about the data or cherry-pick the data in order to support your signal. It’s not good risk communication to pretend greater confidence than you have (or are justified in having) about the data in order to support your signal. I shouldn’t be able to tell from the data you provide whether you’re trying to alarm or reassure your audience. The data are the data. The signaling is separate. That sometimes means you have to go meta: “X fact may sound reassuring, but despite X, here’s why we think we should take this risk very seriously….” Or vice-versa, of course.
Vis-à-vis monkeypox:
I have no complaint about (1). There’s plenty of signaling going on, as there should be.
I suspect (2) is off-kilter. My impression is that most public health officials and experts sound more worried about monkeypox when they’re talking to each other than they let themselves sound when they’re talking to the public. This is only an impression; I haven’t done the systematic comparison of internal versus external messaging that could prove it (or disprove it). But it’s a very firm impression. I think a lot of public health professionals see the public as on the verge of panicking about monkeypox. I suspect the opposite is true; I think COVID has left the public profoundly disinclined to gird up its loins for any other virus. Again, I’m not sure, but the early weeks of monkeypox are looking to me like over-optimism redux: As in the early weeks of COVID, a worried public health profession is busy telling the public not to worry. (Of course that doesn’t mean the next two years of monkeypox are going to resemble the last two years of COVID; I devoutly hope they won’t.)
As for (3), I think the signaling is affecting how monkeypox is described more than it should. In the effort to keep people calm, I think scary information is being downplayed. One symptom: the comparative paucity in mainstream media coverage of upsetting photographs of monkeypox lesions and monkeypox scars. Again, this is just my impression, not a firm conclusion. But do this thought experiment. Imagine a list of facts about monkeypox. Then imagine rating each fact as very calming, mildly calming, mildly alarming, or very alarming. Then imagine content-analyzing media coverage to measure how often each fact appears. What’s your guess about the relative frequency of calming versus alarming facts? I’m guessing the calming facts would win hands down.
As requested, here are my off-the-cuff notes on “Interim advice on Risk Communication and Community Engagement during the monkeypox outbreak in Europe, 2022” 
– the just-published joint report of the World Health Organization and the European Centre for Disease Prevention and Control.
The report makes a fair point re reporting bias possibility: Cases in MSM may be surfacing more than cases in others because MSM have learned to consult doctors about sexually transmitted infections. But the health-seeking behavior of MSM is also a strength, and deserves to be a message. “Because of the heritage of HIV, most MSM are likelier than many others to seek medical help when they see a new symptom. This will prove helpful in efforts to control the spread of the disease.”
Strangely missing from every list of target audiences in this report: people who have sex with MSM. Bisexual people are one obvious transmission path from the MSM community to everyone else. There is nothing here about warning women (other than sex workers) of the risk that a bisexual male sex partner may have monkeypox.
This is nice: “It is important for RCCE to acknowledge the rapidly evolving nature of the outbreak and incomplete knowledge (including whether there is presence of replicating virus in semen and vaginal fluids) and adapt initial prevention strategies as more scientific information becomes available.”
This is also nice: “The public health response to monkeypox is occurring during a time in which some individuals may be demotivated to follow new recommendations on protective behaviour, or to engage with public health officials in encouraging their communities to follow them, including supporting contact tracing efforts. This will need to be considered in engagement and communication strategies.” Many public health officials seem to be trying to calm a public they imagine is at risk of monkeypox panic. This suggests the likelier problem of an exhausted public reluctant to take monkeypox risk onboard. I wish WHO had emphasized that officials’ expectation of monkeypox overreaction is misplaced.
For the most part, the list of “Ten risk communication tips” is unobjectionable. But in #1, I think the broader public deserves/needs to be told more than basic information – candor about who is most at risk and what behaviors are riskiest is important for them too. I like #2 – making concern proportionate to actual risk – especially the use of “raise” here. I would point out more clearly that raising concern is likelier to be a problem than moderating excessive concern. I think #3–#8 are all excellent. I disagree modestly with #9. Why not explain the differences and similarities between monkeypox and HIV, and between monkeypox and COVID? Comparisons to already salient prior knowledge are useful risk communication approaches, and I don’t see the downside. I disagree fervently with #10. Insofar as raising concern is one key goal, “potentially disturbing images” are useful. There’s a theoretical possibility of frightening people so much that they shut down and avoid further knowledge – but I think that’s unlikely here. Disturbing images are a powerful way to raise concern, and I wouldn’t advise risk communicators to eschew them.
I think the suggested messages make monkeypox sound awfully mild – milder than it is and milder than it needs to sound in order to motivate precaution-taking. I would balance “often self-limiting” and “most people experience mild symptoms” with more focus on worse cases. (Most COVID cases are also mild and self-limiting – but that’s hardly the most important information to give people about COVID.) There is nothing at all in this report on case fatality rates, for example; nothing on scarring in those who recover; nothing on uncertainty about longer-term sequelae.
The discussion of transmission under suggested messages ignores the possibility of airborne (aerosol) transmission. Maybe this is unlikely to be a major transmission route, but it hasn’t been ruled out – and given how badly WHO went wrong on this issue with regard to COVID, it shouldn’t be ignored.
The advice to avoid close contact with infected people ignores the possibility of asymptomatic or presymptomatic transmission. Again, maybe this is unlikely to be a major transmission route, but it hasn’t been ruled out – and WHO got this wrong too in the early months of COVID. And even if we assume that nobody without lesions is infectious, avoiding close contact with people with monkeypox lesions requires either asking (and trusting the answer) or seeing – both potentially problematic. The lessons of HIV might be usefully deployed here vis-à-vis what MSM and others can do to lessen the probability that a casual sexual contact is infected.
I am aghast that the only recommended advice “if you suspect you have monkeypox” is to see a doctor. I would surely want health communicators to advise people who suspect they have monkeypox to take precautionary measures (like avoiding close contact, especially sex or at least unprotected sex) without waiting to see a doctor, get tested, and get a positive test result before doing so.
The recommendations “if you test positive for monkeypox” are surprisingly vague: Do what your doctor or national guidelines suggest. Why is WHO reluctant to propose what doctors and national guidelines ought to be suggesting? I would like to see detailed advice here. Two levels of advice would be better still. Plan A is avoiding close contact, especially sexual contact. Plan B is strategies to mitigate the risk of close contact, e.g. condoms. Why on earth would WHO recommend that public health risk communicators say these things only “if recommended” by the patient’s doctor and/or national guidelines?
Considering the intense discussion of monkeypox vaccines and their possible preventative use in at-risk groups, I am surprised to see no vaccine discussion in this report.
I like the emphasis on two-way communication, focus-grouping messages, asking advocacy groups for messaging advice, “co-design” of message testing, etc.: working with, not just working on the most at-risk groups.
The point about “[m]onitoring rumours and misinformation, and helping to debunk them” isn’t wrong, but it’s one-sided. As WHO has learned in other outbreaks, rumors are often an early source of valuable information. Monkeypox risk communicators need to be wary of “debunking” rumors that may turn out more accurate than experts’ and officials’ overconfident beliefs and expectations. The less we’re sure about, the less justified we are in “debunking” contrary opinions. And we’re sure about very little vis-à-vis monkeypox.
The occasional references to contact tracing in this report seem a bit naìve to me. A lot of monkeypox patients in the current outbreak have been unwilling – and in many cases pretty obviously unable – to name their recent sexual partners.
The section on stigmatization tries to strike a balance between the need to give people straight (no pun intended) answers about monkeypox risk and the importance of not exacerbating stigmatization of MSM. I think it’s somewhat unbalanced in the direction of too much worry about stigma. In Africa, apparently, most monkeypox patients caught it from bush meat or other animal contacts; in the current outbreak, most patients so far are catching it from MSM. But it will almost inevitably spread from MSM, to others who have close contact (especially sexual contact) with MSM, to still others who have close contact (especially sexual contact) with those others. I would urge risk communicators to say all this – and I’d specifically urge them not to let fear of stigmatization deter them from doing so.
I think most people today know how they feel/think about MSM. This is especially so in the developed world where this outbreak is occurring. Those who are already inclined to stigmatize MSM will inevitably use monkeypox as ammunition/rationalization no matter what risk communicators say or refrain from saying. Evidence that homophobes are seizing on this new tool therefore shouldn’t be taken to mean that we must downplay key health messages. The rest of us need straight information about monkeypox.
Stigmatization of MSM is still a real social evil – but candid monkeypox risk communication won’t exacerbate that evil, and pussyfooting won’t ameliorate that evil. I think what’s masquerading as a fear of stigmatization is really a fear of being accused of stigmatization – and that’s an unacceptable reason for suppressing or downplaying important health information. I wonder what MSM advocacy groups will advise re how to balance stigma versus candor. I hope they advise candor.
More specifically, I dislike the advice to stick to “language that does not link disease transmission to sexual orientation” and to avoid using “orientations of different sexualities (e.g., gay, bi-sexual, lesbian, queer, etc.) to discuss the population who is most affected.” Respectful language – absolutely. Circuitous, vague language – I hope not.
“While avoiding any stigmatising language, it is also important to be factual and address those who appear to be currently most at risk. Diluting health information and advice with considerations of not stigmatising e.g. MSM may give rise to the possibility that the level of risk may be misunderstood.” This is exactly right. My concern is that the rest of this report overstates the risk of exacerbating stigmatization and will reinforce what is already a dangerous tendency in monkeypox risk communication: fear of accusations of stigmatization leading to pussyfooting about what groups are most at risk and what behaviors are riskiest.
Copyright © 2022 by Peter M. Sandman
