Monkeypox Messaging
Messaging matters in the early stages of a public health emergency. Individual behavior is heavily influenced by news and social media reports. Political leaders and public health administrators are influenced too. And so, it's frustrating to discover that current messaging around monkeypox reflects some of the same limitations that undermined our early response to COVID-19. This newsletter focuses on misrepresented statistics. I was surprised to discover many examples, with implications that extend beyond technical issues involving data.
Quick overview
Monkeypox, first identified in humans in 1970, is a viral disease transmitted by close physical contact. Symptoms include fatigue, fever, swollen lymph nodes, and distinctive, often painful lesions. The time between exposure and first symptoms ranges from five days to three weeks. The symptoms last two to four weeks, and mortality rates are low (3–6% in recent years).
Monkeypox is self-limiting, meaning that it goes away by itself. There's no known cure, although symptoms can be alleviated with antiviral medication. Prevention consists of behavioral measures (avoiding close contact with infected persons and objects or materials they've used) as well as two vaccines currently available (details later in this newsletter).
A lot about monkeypox remains uncertain. We're not clear about the extent of physical contact necessary for transmission. We aren't sure whether can be spread via semen and vaginal fluids. It's unclear whether the rare asymptomatic person is contagious. And, although we believe that current vaccines and treatments are effective, we don't have enough data yet to say for sure.
In spite of the uncertainties, we do know a lot, there are clearly better and worse approaches to messaging. I'll devote most of this newsletter to the worse ones, while folding in suggested improvements.
Shoddy, irresponsible messaging
In an article published yesterday, Fox News noted that "The U.S. has so far seen roughly 3,000 cases across the country..." I e-mailed Fox about this error but they have yet to respond or correct it on their website. The current U.S. total is 6,617 cases. Two days ago, when the Fox article was written, the number was 6,326, and for over a week now, major news outlets, both liberal and conservative, have reported figures over 5,000.
There aren't competing statistical narratives here. Everyone draws their stats from the same source: The CDC, which updates case rates daily. It's shocking that the the Fox writer (and editorial staff) could've missed this.
This error looks like a statistical example of a broader trend at Fox and similar outlets, which is to duly report concerns about the threat of monkeypox while simultaneously downplaying its seriousness. For example, last week Fox interviewed a professor of medicine (not an infectious disease expert) who made a series of mostly vague remarks encouraging people to stay calm. Among other things, he said that "the virus is usually not serious, though the rash is painful and can cause scarring". Describing monkeypox as "usually not serious" and merely "painful" seems irresponsible, given numerous patient reports of excruciating pain. Also irresponsible is that the article contains a link entitled "Monkeypox by the numbers: Facts about the rare virus that's currently spreading", but the linked article was published on June 3, hasn't been updated, and, as you might imagine, contains misleading content.
If you want to find messaging problems, Fox News is an easy target, as are more extreme voices, such as Marjorie Taylor Greene, who tweeted that monkeypox is a sexually transmitted infection, or Laura Loomer, a Floridian currently running for U.S. Congress, who heard that two children in Washington D.C. contracted monkeypox and, mistakenly assuming that it's an STI, asked on Telegram: "Who's raping kids in D.C.?"
Of course, monkeypox is no more of an STI than the common cold. The fact that you're much more likely to catch a cold from sex than from casual conversation only shows that close contact facilitates transmission.
Sophisticated, misleading messaging
With better journalism comes more sophisticated misrepresentations. Consider the Wall Street Journal, an organization that many, including me, consider one of the most reliable sources among those with a distinctly conservative slant. WSJ published an article, updated August 2, that calls attention to the physical distress and lack of guidance experienced by monkeypox patients. In this article, you can see a statistical error that's widespread among journalists – namely, a failure to indicate anything about the prevalence of a particular case. More about what that means in a moment.
In this article, the WSJ interviewed a young man who said that he
"...was mocked by healthcare providers when he attempted to seek care and struggled to find adequate expert information about the disease. He said he has relied on social media and the anecdotal accounts of other patients to fill the gaps."
Although I believe this man and am sympathetic to his plight, I'm skeptical that being "mocked" by health care providers (i.e., more than one) is a common experience. Health care providers may be rude, or fail to hear you, or treat you incompetently, but mockery is surely rare. Likewise, even though some people struggle to find information, one might question how often this occurs. When you Google "monkeypox", or "what is monkeypox?", or some comparable phrase, the first hits you see are generally reliable and detailed sources of information.
What the WSJ did here was to present a single case to illustrate a theme, without commenting on how prevalent that case might be. This is, at minimum, misleading. We've seen this before, for example, in decades of articles on climate change, in which skeptics were given a platform, but journalists failed to note that skepticism was highly uncommon and rapidly diminishing in the scientific community.
What's especially concerning about the WSJ article is that it barely touched on a problem that monkeypox patients do frequently mention: Difficulties getting tested for the disease. In recent weeks this has stemmed from a shortage of tests, but at first, in late May and June, new patients were sometimes misdiagnosed with herpes or syphilis, and they encountered resistance when asking for a monkeypox test. At that point, monkeypox had been extremely rare in the U.S. (zero cases most years; several dozen in 2003), and health care providers lacked sufficient guidance.
Variability in symptoms also contributed to resistance then and continues to do so now. CDC guidelines state that external lesions are necessary for a monkeypox diagnosis. However, in a small number of cases, people have experienced internal lesions only, and thus they were initially refused testing.
There's a messaging problem here – an important one, even if it only affects a small number of people. Although Britain recently changed its definition of monkeypox to acknowledge the possibility of no external lesions, the CDC has not made this change. It appears that in a very small percentage of cases, people have internal lesions or none at all, but on the CDC website, under guidance for clinicians (and, separately, for the general public) monkeypox is presented as always manifesting as a rash.
In short, although I consider the WSJ reliable overall, and although later I'll praise the CDC's messaging, I think that with respect to atypical symptomatology, both have fallen short in their messaging.
Exaggerated messaging
The best way to call attention to a problem is to be honest about it. If you exaggerate, you lose credibility, and you give skeptics something to pick on.
For example, in article for CNN, Sanjay Gupta noted that here, in the richest country in the world...
"...we have the most confirmed cases of monkeypox on the planet....almost 25% of the global numbers, even though we are just under 5% of the world's population."
Dr. Gupta's statistics are correct and yet misleading. They're the wrong stats to support the point he's trying to make, and they create a false impression.
Dr. Gupta is implying here that monkeypox is especially prevalent in the U.S. But if you have to choose one statistic to make that point, a more suitable one is case rates per capita. In other words, the proportion of the population that's had the disease. I looked at the data – specifically, CDC and WHO data available yesterday that reflected official counts through August 2. (Actual case rates probably slightly exceed official ones, but this shouldn't systematically bias or alter any conclusions). Here's what I found: In the U.S., the per capita case rate is just under 2 out of 100,000 people. This is slightly lower than the case rate for Canada (just over 2 out of 100,000 people). The U.K., as well as countries like France, Germany, Switzerland, and Portugal, all have case rates between 3.5 and 6 out of 100,000, with the highest rate found in Spain at just under 10 in 100,000. In short, although per capita rates in the U.S. are high, we're not even close to the rates found among the top 12 countries. We do need to improve our response to monkeypox – in particular, we need more access to testing and vaccines – but it won't help to exaggerate the extent of the problem.
Vague messaging
Dr. Gupta is not the only one creating mistaken impressions about case rates. A variety of news and social media sources are referring to "mounting", or "rapidly increasing", or "skyrocketing" cases.
What political leaders and the general public need is specific, accurate information about case rates, including data on geographical differences in concentrations. For example, two states (Montana and Wyoming) currently have zero cases. At the other end of the spectrum, Washington D.C. has a case rate of 35 in 100,000, which is over three times higher than the national average for any country. In between these extremes are the three U.S. states that have declared emergencies – California, Illinois, and New York – with per capita rates of roughly 2, 4, and 8 per 100,000 people, respectively.
The closer you look, the more geography matters. For example, Texas has a case rate of 1.7 in 100,000 people, but the highest county-level rate in the state, Dallas County, is over four times higher – just over 7 in 100,000. (If you live in Dallas county, by the way, there's no need to be alarmed by these statistics. 7 in 100,000 suggests a very low probability of encountering an infected person, and even then, you wouldn't be infected unless you had close physical contact with them, or with something they've had contact with.)
Unduly pessimistic messaging
Some reports in the news and on social media quote experts as saying, in effect, that we've already lost the battle against containing monkeypox.
In fairness, even though case rates are currently small, infectious diseases almost always grow exponentially. (I explain this further in the Appendix.) However, there's no clear evidence that monkeypox will spread unchecked. Some experts predict as much, some disagree, but we can't speak definitively just yet, because there are too many unknowns. We don't know how rapidly the vaccines will roll out. We don't know what the vaccination rates and their effectiveness will be. We don't know to what extent people will change their behavior. And, we don't know whether reverse zoonosis is possible (i.e., monkeypox being transmitted from humans to animals, and then back to humans again after mutating into somethat that's more – or less – infectious than before).
Experts who make gloomy projections about monkeypox tend to be vague (on purpose, I assume). Here's a typical example: In a July 19 article, we're told that "most experts polled by STAT said they don't believe it will be possible to contain [monkeypox]." As one expert put it, "I think we missed that train."
So, what train did we miss? Specifically, what does it mean to say it's not possible to "contain" monkeypox. Does that mean we can't completely eradicate it? Does it mean we can't reverse the spread and keep the rates generally low? (How low is "low" anyway?) Or does it mean that we can't contain it, in the literal sense of confining it to some particular group (e.g., men who have sex with men) or to the region where it was formerly endemic (Central and West Africa)? I don't blame the experts for being vague – nobody can answer these questions – but I do think they and the journalists who quote them should be clearer about the extent of uncertainty. And, as I'll discuss shortly, I see grounds for a more optimistic view.
Blame-game messaging
Many people are complaining that the U.S. has been slow, unconcerned, and/or inefficient in responding to monkeypox. There's a lot of finger-pointing about messaging, access to testing, contact tracing, vaccine availability, etc. Here's an eloquent example from an August 2 article in the Washington Post:
"Does the U.S. have epidemic amnesia? The monkeypox response is following an eerily familiar pattern: Viruses begin in a vulnerable population that people in power don’t feel is worthy of their attention and care. Infected people are stigmatized and their suffering is ignored, allowing the virus to spread. Then, only once it’s affecting broader populations — and thus impossible to contain — do those in power take action."
I think that griping about the past is only useful if it's directed toward improving the future. Here, for example, I mostly agree with the Washington Post writer, but I think she has also misrepresented some things. For example, I consider Rochelle Wallensky and the CDC among the "people in power" in the U.S., and when the CDC first became aware that monkeypox was primarily occurring among gay and bisexual men, the organization made a special effort to avoid stigmatizing these men, given how badly they'd been treated in the context of AIDS. In fact, the CDC tried so hard to avoid calling out any group, it ended up being criticized for bad messaging and undermining support where it was most needed. Even the phrase that the CDC adopted, "men who have sex with men" represents an attempt to be politically sensitive, because the organization felt that "gay and bisexual men" wouldn't be inclusive enough. In short, the stigmatization of monkeypox victims can't be traced to the CDC, much less to the Biden administration, or to many others in power. It's just intolerant and/or misinformed people, like Marjorie Taylor Greene and Laura Loomer, who have perpetuated biased views.
The other problem with the Post excerpt is the implication that monkeypox is now affecting broader populations (or that those in power won't take action until it does). Monkeypox has barely touched the broader population. Currently, about 99% of cases in the U.S. are among men who report having sex with men, and the international rate, according to WHO data, is about 97.5%. Meanwhile, the Biden administration, the CDC, and others in power are taking action. You may consider their actions inefficient, or misguided, but they are acting. This brings me to the final section.
Insufficiently positive messaging
It's understandable that the optimists out there, like Rochelle Wallensky, tend to be cautious in their monkeypox projections. We don't want to become complacent. Still, I see good reasons for optimism, though I don't encounter them often enough, at least in the national news media. What we don't need is some Fox News talking head reassuring us blandly that monkeypox is a mild problem and we should all just relax. Rather, we need more specific reasons for hope.
1. Top-down political action.
On Tuesday, President Biden appointed Robert Fenton, a high-level FEMA administrator, to serve as the national monkeypox response coordinator. The role of this monkeypox "czar" is to guide the administration's strategy and, specifically, to increase access to testing, vaccines, and treatment. Meanwhile, the CDC has continued to increase access to orthopoxvirus tests, and the DHHS continues to increase access to the JYNNEOS vaccine, including 786,000 new doses allocated last week. In addition, three states (California, Illinois, New York) and two cities (San Fransisco and New York City) have declared public health emergencies, which allows them to obtain supplementary funding and other resources.
2. Vaccines.
Although people are rightly complaining about vaccine shortages, the situation is slowly improving. Right now there are two main options. JYNNEOS, which requires two jabs 28 days apart, is safe, and appears to be effective, although the primary effectiveness data comes from animal studies. ACAM2000, administered via a single dose, also appears to be effective, based on animal research and one small African study from 1988, although it's less safe, because, unlike JYNNEOS, it creates an external lesion on your shoulder that contains live virus. Until that lesion scabs over and heals roughly three weeks later, you can infect someone if they come in contact with it (and there's a slight chance you'll infect yourself). ACAM2000 also carries a relatively high risk of inflamed heart tissue (1 in 175 recipients), and it's not suitable for people who are pregnant, or who have a variety of health issues. As a result of these risks, ACAM2000 is rarely administered in the U.S., even though we currently have a large stockpile. So, we're waiting for more JYNNEOS – and for Moderna, which continues to explore the possibility of developing a new vaccine.
Two encouraging footnotes can be added here. First, unlike COVID-19 vaccines, those for monkeypox can be taken after exposure and still be effective. This is called post-exposure prophylaxis (PEP). The CDC recommends getting a vaccine within 4 days of exposure to minimize the chances of infection.
Second, unlike COVID-19, ring vaccination can be effective in combatting monkeypox, just as it was effective with smallpox and Ebola. "Ring vaccination" means offering vaccines to those who have been in close contact with an infected person, along with others in close contact with those people. This strategy is being used now, and it's helpful given that there's not enough vaccine to go around.
3. Public education.
The CDC is currently engaged in extensive outreach to clinicians, local partners, vulnerable communities, and the general public. I'm impressed that the CDC's outreach includes substantial guidance on monkeypox messaging, and that their own messages are quite specific. Some people have mocked the CDC for its detailed advice related to safe sex when one partner may have monkeypox (e.g., "masturbate together at a distance of at least 6 feet, without touching each other and without touching any rash"), but the CDC exists to serve all Americans, and there are probably a few of us who need this level of detail. (If we heard that some couple actually pulled out a ruler and measured 6 feet, we might chuckle, but at least they do end up playing safe.)
4. The nature of the beast.
The nature of the monkeypox virus itself offers some grounds for hope. For one thing, it's transmitted less easily than many other viruses, including coronavirus. Although the details aren't fully clear, transmission requires close physical contact, and it may turn out that transitory or indirect contact (e.g., touching the same doorknob) rarely if ever causes infection. Moreover, monkeypox is more easily identified than COVID-19 – usually by external lesions. Finally, monkeypox is mostly restricted right now to one group (men who have sex with men), and so vaccine and educational outreach can focus more heavily on that group, while remaining accessible to all.
Final remarks
With respect to messaging, what I've called for in this newsletter is pretty straightforward. Most of it can be boiled down to a plea for accuracy: When describing the statistics, choose the right ones, describe them correctly, and interpret them carefully.
With respect to personal safety, the implications of appropriate messaging are pretty clear: If you plan to have sex with a male you don't know well, a conversation about rashes and such seems advisable. If you see lesions on yourself or on someone else, avoid close physical contact. That means not only avoiding sex, but also hugging, kissing, dancing, wrestling, lounging on each other's sofas, and/or rubbing shoulders with them if you're in densely crowded space such as a subway at rush hour.) If contact does occur, infection may still be preventable if you get vaccinated within a few days.
Thanks for reading, and stay safe!
Appendix: Monkeypox and exponential transmission
One way to illustrate the exponential spread of infectious diseases like monkeypox is by means of the reproductive number, or Rt. Rt is the number of people one infected person can be expected to infect, on average.
The Rt for monkeypox is relatively low. As of July 22, the WHO estimated it to be 1.29, which is over three times lower than current estimates for omicron. Still, to illustrate the need for caution, let's look at a simplified bad-case scenario:
Assume that the true Rt for monkeypox is 1, and that it remains constant, but transmission is rapid, in the sense that whenever a person is infected, they infect exactly one person the following day.
In this simplistic model, if the first person is infected on Monday, then on Tuesday they'll infect someone else. On Wednesday, these two infected people will each infect someone, creating a total of four patients. You can see the familiar series that emerges: 1, 2, 4, 8, 16, etc. By Sunday, only 64 people will be infected, which seems like a low number, but by the next Sunday, it's 8,192 people. By the following Sunday, over a million people will have monkeypox!
This model is both overly simplified and unrealistically pessimistic, because it assumes a one-day interval between infection and transmission (which is quicker than what we typically see), and because it assumes that nothing is checking the spread of the virus (which is untrue at the moment, since we have clear behavioral guidelines as well as vaccines). Still, in a general way, it illustrates the need for caution: The potential for COVID-like growth rates, although extremely unlikely, is theoretically possible.