On November 10, 2014, an editor at Emergency Management magazine emailed me to schedule a telephone interview about how Ebola risk in the U.S. was communicated. I wrote back that “I have a great deal to say, perhaps more than you want to hear,” and suggested that he let me know what points he was planning to stress in his article. He responded with a list of questions.
They were perfectly good questions. But they didn’t address what was bothering me most about Ebola risk communication in the U.S.: the incivility and dishonesty (in my opinion) of the way the public health establishment addressed the quarantine debate. I had already tried several times to write about this subject or to talk to other journalists about it – but I kept getting bogged down in details.
So instead of answering the editor’s questions, on November 12 I sent him an email outlining what was bothering me. I left out the documentation – the examples and citations that had made my previous efforts so boringly granular – and just summarized what I thought had happened and why I thought it was such a travesty.
The column below is a slightly edited version of my November 12 email. Emergency Management plans to use some of what I wrote about Dallas in its January 2015 article … but nothing of what I wrote about quarantine.
The things I most want to say about Ebola in the U.S. are simultaneously hard to say briefly and of very limited interest to others (at any length). I have attempted to say them to several other reporters before you, and each time I could tell that when I tried to be brief the reporter wasn’t convinced and when I got granular the reporter wasn’t interested.
I’m pretty sure you don’t want to listen to me rant for a couple of hours … and don’t want to publish a long story that does justice to the rant. And I’m pretty sure I don’t want to contribute a couple of unexplained quotes to a story that covers the Ebola communication waterfront.
Let me try to lay out what’s on my mind in this email, and see where that leaves us.
The outcome is fine
First of all, Ebola in the U.S. has turned out awfully well so far. All the patients brought here for treatment have recovered, without infecting anyone else. Of the two index cases who arrived incubating the disease and were diagnosed here, one (Duncan in Dallas) died and infected two healthcare workers who recovered; the other (Spencer in New York) recovered and doesn’t seem to have infected anyone. There have been no instances of community transmission.
The CDC started out thinking that ordinary hospitals were and ought to be prepared to treat Ebola patients, an error that might have led to the two secondary cases. But it quickly shifted to a better plan: more training and more protective PPE for healthcare workers throughout the country, more active CDC involvement in infection control for any suspected Ebola patient, designation of specialized facilities to care for Ebola patients once they are diagnosed and stabilized.
The CDC also started out thinking that if healthcare workers treating Ebola patients were wearing “recommended” or “appropriate” PPE, that meant that they had “no known exposure,” even if they treated patients during the later, florid stage of the disease. But it quickly shifted on that too, ratcheting up its monitoring standards for both volunteers returning from West Africa and domestic healthcare workers taking care of Ebola patients.
The public went through a period of fearful fascination with Ebola, and has now largely lost interest.
If another index case were to surface in the U.S. today, I believe the public health infrastructure would handle it much more coolly and efficiently, and the public (even the local public) would be attentive and wary but not especially fearful.
The process was awful
So what am I so unhappy about?
In a nutshell, I believe the public health establishment – not just the CDC, but virtually the entire “guild” of infectious disease experts and officials – has been guilty of three serious misbehaviors:
- Dishonesty about both the on-the-ground facts of specific cases and the quality of “the science” underlying Ebola policy.
- Misappropriation of science on behalf of questions that aren’t scientific at all, especially the question of “how safe is safe enough.”
- Endless, nasty, and unjustified ridicule of the public’s fears, of its desire for more protective public policies, and of state and local officials who instituted such policies.
I wish I could say these misbehaviors have seriously damaged the credibility of the public health establishment. In fact I’m not at all sure they have, though I believe they should.
I hesitate to build the case that public health has misbehaved. I don’t want to encourage public distrust of public health, no matter how merited that distrust would be. I don’t want to ally with the fringe enemies of the public health establishment (the anti-vaccination movement, for example).
What I want is to help make the public health establishment more trustworthy, not less trusted.
But I don’t see a way to do that. The public health establishment is too embattled, too outraged to be able to see its misbehaviors, much less to be willing to acknowledge them – even if I could find a venue in which to lay them out in detail, and even if I could somehow inveigle them into reading what I wrote.
Sometimes issues become so polarized that it seems impossible to take a nuanced stand. At least for the public health establishment, the way Ebola was managed in the U.S. in October 2014 is that polarized. Any criticism at all is seen as evidence that I am “on the other side.” Comparisons to the Dreyfus affair may seem far-fetched. But that is the way it has felt in recent weeks for me, and for my wife and colleague Dr. Jody Lanard.
I keep saying to myself that since the outcome is fine, what difference does it make that the process was awful? Why make enemies of friends by harping on the flawed process? Why insist on exposing what went on in the sausage factory?
Dallas was normal
This isn’t mostly about Dallas. I think there is now a near-consensus that the CDC was overconfident in the early days of Dallas (and in the two months before Dallas) – both in its policies and in its communications.
The CDC’s main point – that there would never be an Ebola epidemic in the United States like the one in West Africa – was and remains solid.
But the CDC gave the impression (and sometimes explicitly said) that stopping Ebola “in its tracks” would be easy; that a couple of close friends of an index patient might get sick but the frightening possibility of healthcare workers getting infected by their patients was profoundly unlikely; and that every American hospital could cope with an Ebola patient without significant improvements in training or equipment. These were not misimpressions; the CDC’s policies were compatible with its messages. Both needed to change, and both did change – but not until well after Duncan was diagnosed with Ebola.
There’s no question that the CDC’s overconfident over-reassurance exacerbated the American public’s “adjustment reaction” – its temporary overreaction – to Ebola. This is mainstream crisis management and crisis communication tradecraft. Practically nobody actually panicked. Panic is so rare in crisis situations that it’s hard to study. But many people did get alarmed – not alarmed enough to put their normal lives on hold, but alarmed enough to pay attention. And the attentive public found genuine defects in official competence, caution, and candor.
Instead of acknowledging uncertainty and predicting that there would be errors and policy changes as it learned more, the CDC sounded like it was claiming that Ebola was a well-understood disease, and sounded like it was predicting that everything would go just fine. So the errors and policy changes understandably made officials look incompetent and insufficiently cautious. They made normal people more alarmed and more skeptical, more inclined to take precautions of their own commonsense devising, and more inclined to demand that local officials do likewise.
That’s the Dallas Ebola risk communication story: official overconfident over-reassurance that exacerbated and prolonged the public’s adjustment reaction. That’s not what I find so frustrating, so infuriating. It’s suboptimal, but it’s normal. I’ve spent my career trying, usually without much success, to convince corporate and government officials that overconfident over-reassurance isn’t good crisis communication. I’m accustomed to that pattern, and to the post-mortem it produces:
- Officials being overconfidently over-reassuring;
- The public smelling a rat and overreacting;
- Officials and the media accusing the public of panic, irrationality, and hysteria; and then
- Officials and the public (and even the media themselves) accusing the media of fear-mongering and hype.
Dallas was all too typical. And the errors of Dallas – the CDC’s errors in particular – are now an accepted part of the Ebola-in-the-U.S. narrative. That’s the ordinary first half of this crisis communication story.
The quarantine debate
It’s the second half of the story – Spencer, returning volunteers, monitoring and quarantine – that is making me crazy.
The first, almost unnoticed thing that happened in the second half of the story is that the CDC gradually ratcheted up its recommended monitoring, potential movement restrictions, and potential public contact restrictions for returning volunteers in various risk categories – almost but not quite to the point of full-blown quarantine. During and well after this ratcheting-up, the public health establishment continued to blast as “idiotic,” “stupid,” “irrational,” and “unscientific” all the states that were imposing quarantines on returning healthcare workers.
The CDC’s position on the risk to healthcare workers who had contact with florid Ebola patients while wearing recommended PPE changed radically in a matter of weeks.
The CDC started out in August strangely confident the Ebola risk to healthcare workers was negligible. In various versions of CDC guidelines from early August until late October, asymptomatic returning healthcare workers with no known equipment breaches were considered at “no known exposure” to Ebola. Shrugging off all the examples of healthcare workers (indigenous, foreign, and American) who were infected in West Africa despite their PPE, the CDC didn’t even recommend tracking returning volunteers; nor did it show any concern about monitoring U.S. healthcare workers who treated Ebola patients at Emory, Nebraska, and Dallas Presby.
That started to change when the two Dallas nurses were infected, and continued to change after Spencer was diagnosed in New York. With regard to returning volunteers, the CDC monitoring and movement restriction guidelines have ratcheted up several times.
The most recent November 3 guidelines classify returning volunteers with no known PPE breaches (e.g. needle sticks) – previously in the “no known exposure” category – as “some risk,” the middle of three risk categories. The CDC recommends requiring asymptomatic members of this group to have “direct active monitoring” for 21 days, instead of the self-monitoring it had previously considered sufficient. Direct active monitoring involves a combination of daily telephone calls and daily face-to-face checkups. Self-monitoring (“call us if you have any symptoms”) is now considered insufficiently protective. Proponents of self-monitoring had been ignoring significant aspects of “the science,” including extensive evidence that people often deny, miss, shrug off, or rationalize their own symptoms of disease in general and of deadly, dreaded disease in particular.
In addition, the CDC guidelines now specify that local officials should consider whether to go further for people in the “some risk” category. In particular, local officials are advised to consider movement restrictions (no public transportation, etc.) and group contact “congregate” restrictions (stay more than three feet from other people at all times). For people in the high-risk category – for example, returning volunteers who had a needle stick accident – the CDC recommends requiring the movement and congregate restrictions.
The current CDC recommendations for returning volunteers are a bit less conservative than the home quarantine policies of some states. But they are closer to home quarantine than they are to the original CDC self-monitoring recommendations.
I can understand how someone could have supported the original very lax CDC recommendations for asymptomatic returning volunteers while considering quarantine irrational and contrary to science. I can also understand how someone could have supported quarantine while considering the original CDC self-monitoring recommendations unacceptably lax. But the current CDC recommendations are inches short of quarantine. It is inconceivable to condemn one and support the other on scientific grounds – which is exactly what the public health establishment has been doing. The distinction could make a kind of sense on constituency grounds: supporting whatever the CDC recommends and opposing whatever politicians do that diverges even a little from what the CDC recommends. But on scientific grounds – no, I can’t see it.
Because they are quite close to each other, I am comfortable with either of the current positions. I have no quarrel with the current CDC recommendations and no quarrel with quarantine. My quarrel is with public health experts and officials who ridicule quarantine while supporting the current CDC recommendations.
Just as the public health establishment has failed to notice (or declined to mention) that the CDC recommendations are now not very different from the state quarantine policies it excoriates, many of those calling for quarantine have also failed to notice that the CDC has come almost all the way there. The latter is easy to understand. When experts and officials keep telling you that what you want is idiotic, stupid, irrational, and unscientific, it is hard to notice how close they have come to giving you what you want.
Some other points of relevance to the quarantine debate, in no particular order:
- Impact on volunteer recruitment
There are clearly ways in which the prospect of three weeks in quarantine could discourage prospective volunteers. There are also ways quarantine could encourage volunteering – especially among volunteers who want time to recuperate and a way to reassure their family, friends, and coworkers without having to sell their employers on self-quarantine.
I haven’t seen data on how prospective volunteers feel about the pros and cons. It’s interesting that public health has been so insistent on the cons.
- Impact on public fearfulness
The notion that quarantine feeds the public’s already excessive fears is very bad risk communication theory. There are times when taking precautions arouses alarm (“if you’re taking precautions this must be dangerous”) and times when it reassures (“I feel safer now that you’re taking precautions”). In general, precautions produce movement toward the middle; apathetic people see the precautions as evidence that maybe they should be more concerned, while fearful people see them as evidence that their concerns are being taken seriously.
Precautions are surely more reassuring than alarming to the people who are seeking those precautions. Polls already show that about 80% of Americans think quarantining asymptomatic returning volunteers is a good idea. So it is inconceivable to me that people who are demanding that returning volunteers be quarantined would become more alarmed when their demands are met, but would be reassured when they’re told their demands are idiotic.
- Impact on stigma
The notion that quarantine arouses stigma in people who are already fearful is also so far from the evidence as to raise questions of sincerity. Quarantine breakers typically arouse stigma (as well as increased fear, which isn’t the same thing) – as they did, for example, in Singapore during the SARS crisis, and in Nigeria during its brief Ebola outbreak.
Who is likelier to end up stigmatized: a volunteer fresh from West Africa who insists on thumbing his nose at anxious neighbors by riding the bus and using the apartment complex swimming pool, or one who says that just to be on the safe side she’s going to stay away for three weeks? The question answers itself.
- Conflict of interest
Insofar as quarantine really does discourage volunteering in West Africa, it constitutes a conflict of interest for the public health profession. Public health professionals who are desperate to recruit more volunteers have an incentive to see, or say they see, little benefit from a precaution that is likely to hurt recruiting.
They’re in the same position as a pharmaceutical company worrying that an FDA labeling requirement will hurt sales while claiming that the requirement is scientifically unnecessary to protect public health. Even if they’re right about public health, their worry about sales/recruiting is a conflict of interest, a source of bias, and a solid reason for mistrusting their claims that the precaution lacks scientific merit.
- Vituperation and misappropriation of science
The vituperation with which the anti-quarantine position has been articulated is quite extraordinary. At best, science tells us how safe or dangerous a situation is likely to be. The claim that science tells us how safe is safe enough is arrogant and entirely unscientific. “How safe is safe enough” is a values question, not a science question.
But public health professionals have gone way beyond arrogance and even science. Terms like “irrational,” “idiotic,” and even “insane” have been thrown around as if they, too, were scientific judgments. It would be far more appropriate (and far more civil) for public health to frame this as a dilemma with reason and sense on both sides: the possible additional protection quarantine might afford the community versus the possible damage it might do to volunteer recruiting.
- Unselling volunteers
I also have to wonder why public health keeps insisting so volubly that quarantines undermine volunteer recruitment. It’s got to be at least in part a self-fulfilling prophesy: Prospective volunteers are being told again and again that the people trying to recruit them now think they will no longer be interested because of the possibility of their being quarantined on their return.
When I consider how few volunteers were successfully recruited before the quarantine controversy arose, it is credible to me that some in public health may have given up on recruitment success as a goal, and may now be pursuing a different goal: to build an external excuse for recruitment failure. This would explain the otherwise inexplicable emphasis on a recruitment problem they would otherwise have reason to want to downplay and work to ameliorate.
- Asymptomatic transmission
The strongest argument against quarantine is the evidence that Ebola transmission is rare and perhaps impossible until the sufferer is emitting infectious bodily fluids. This evidence is scanty rather than plentiful, grounded in small-scale studies in Africa. So the statement that “asymptomatic people cannot transmit Ebola” is more absolutist than I think the science can support. I would give odds that if the CDC were asked to okay participation in a blood donor drive by an asymptomatic returning volunteer, it would say no, worrying that the asymptomatic volunteer’s blood might transmit the disease. I don’t know if CDC recommends that returning volunteers defer routine dental care and elective surgery.
Still, even if asymptomatic transmission might not be impossible after all, it is clearly extremely uncommon. And in countries that can manage a few Ebola cases well, it makes sense to base policy on the fact that asymptomatic transmission is extremely uncommon.
But to elide from “asymptomatic people cannot transmit Ebola” to “it’s bad science to quarantine asymptomatic people,” you have to ignore two other possibilities: that people’s early symptoms might be missed, ignored, or misinterpreted; and that people might become symptomatic suddenly.
- Missed symptoms
With regard to symptoms being missed, ignored, or misinterpreted, there are many relevant points. I don’t want to get too granular here, so let me summarize some of the main ones:
- There are two well-known examples of doctors in West Africa who continued to go to work, socialize intimately, and have family parties after becoming symptomatic – and transmitted Ebola to others in the process. No one knows whether they misinterpreted their symptoms or intentionally ignored them, because they both died.
- Spencer felt “sluggish” the day before he went out on the town. It’s not clear if he decided his sluggishness wasn’t a symptom or if he reported it to someone at MSF who decided it wasn’t a symptom.
- Kaci Hickox had three fever readings in Newark Airport. The second of the three was 101, above the CDC threshold (then) of 100.4 as a symptom that should lead to isolation and a rule-out-Ebola workup. She believed and continues to believe that it was a false positive and she was asymptomatic.
- There is ample theoretical and empirical work to support the existence of fear-driven psychological denial as a reason why people with diseases and especially dreaded, deadly diseases often deny that they have symptoms, or deny that their symptoms mean what they mean. Every clinician has treated many patients who misreported or misinterpreted their symptoms because of denial.
- Doctors are famously more, not less, vulnerable to this sort of denial (and such related psychological defenses as rationalization and minimization). Doctors take notoriously poor care of their own health, and often go to work sick.
- A second potential motive for ignoring or misinterpreting symptoms is reluctance to make a fuss, to inconvenience everyone, and to embarrass oneself. No returning volunteer wants to be the false positive who panicked at nothing and forced an expensive and frightening public health response because she was jetlagged and had a headache.
- People who have recently experienced high-risk situations have a bimodal response to smaller risks immediately thereafter. Sometimes they’re hypersensitive; any small risk retriggers their fears. More typically they’re insensitive. After what a volunteer endures and sees in West Africa, the risk that she might pose to others might well seem comparatively trivial.
- People who have made uncommon sacrifices for the common good often feel entitled. Heroes and saints are not infrequently jerks.
- Some of the symptoms on the CDC list of Ebola symptoms (fatigue, headache, fever, etc.) are very common – and would be even more common among people just back from an exhausting month or more in Africa. If these symptoms are being taken literally, we would expect a lot of false positives – returning volunteers who reported a headache or fatigue and according to the recommended CDC protocol had to be isolated for a few days until Ebola could be ruled out. The fact that hardly any returning volunteers have been isolated and tested suggests either that they are not reporting symptoms they consider routine or that the health officers to whom they are reporting these symptoms are deciding no further workup is needed.
The bottom line from this list of bullet points: Granting that asymptomatic people cannot transmit Ebola, it remains true that the symptoms of symptomatic people are not always picked up promptly.
- Sudden onset
With regard to sudden onset, it worth noting that “sudden onset” or “abrupt onset” of symptoms is part of the CDC’s and WHO’s case description for Ebola. That is, the CDC and WHO both say that it would be commonplace – more the rule than the exception – for someone who is incubating Ebola to suddenly become symptomatic. If the suddenly appearing symptom is headache, fatigue, or fever, the newly symptomatic person may pose little risk to others. But if the suddenly appearing symptom is vomiting or diarrhea, the risk might be greater.
There are no data suggesting how often that happens – how likely a returning volunteer is to be asymptomatic at 8 a.m. and vomiting on the subway or having diarrhea in the bowling alley at 2 p.m. At least 5% of Ebola cases don’t have fever.
- Some facts about Craig Spencer
Craig Spencer felt sluggish. He (or MSF) didn’t consider that a symptom. The next day he had a busy day, one that involved repeated contact with other people, many of them strangers. The following morning he had a low fever of 100.3 and diarrhea. He called in his symptoms and was transported to a hospital, where he was isolated and tested positive for Ebola the same day. The diarrhea and the (low) fever appeared at approximately the same time. The positive blood test was less then 24 hours after he was socializing in a bowling alley and riding the subway; it was less than 12 hours after he first had a (low) fever.
When New York City and State health officials discussed Spencer’s symptoms, they emphasized that he did not have watery diarrhea and did not lose control of his bodily fluids. He maintained control at least in part because he was home, near his own bathroom. If the diarrhea had come on equally suddenly the previous day, he would not have found a toilet on the subway; in the bowling alley, it would surely have been a toilet many others would use after him.
So either Spencer had slow onset of symptoms and ignored some of them, or he had sudden onset of symptoms and it was lucky he happened to be home and near a private bathroom.
- Some facts about Kaci Hickox
Shortly after Spencer’s sudden onset (if that’s how we choose to interpret it), Kaci Hickox arrived at Newark Airport from West Africa. She tested normal, and under the CDC protocol in effect at the time would have been released into voluntary self-monitoring. New Jersey, however, had just instituted a mandatory home quarantine policy in the wake of Spencer, under which she would have been sent home and required to stay home with active monitoring by a health officer.
But Hickox was not a New Jersey resident. So she was held at the airport for several hours, presumably while New Jersey officials tried to figure out what to do with her. Then they took her temperature again. This time it was 101. That qualified as sudden onset of a fever – higher than the fever Spencer had had when his diarrhea suddenly began and he was isolated and diagnosed with Ebola.
So New Jersey did what the CDC recommendations said it should do. It isolated Hickox for a few days so it could monitor her for fever and other symptoms and test her blood for Ebola. Three days later New Jersey health officials decided she didn’t have Ebola, though she might still be incubating it. If she were a New Jersey resident, home quarantine would have been the operative policy. Since she wasn’t, she was given transportation to Maine.
The ways in which the public health establishment has distorted Hickox’s three days in New Jersey isolation have been extraordinary. The fever of 101 is largely ignored. Also ignored is the fact that her treatment was by the CDC book except for the first few hours at the airport. Much is made of the “unheated tent” in which she was isolated, the absence of a flush toilet, and other features characteristic of a temporary isolation tent, which was located inside a hospital, not in the hospital parking lot.
(Prior to Hickox, some hospitals even bragged about their Ebola preparedness by showing off their brand new isolation tents, including one set up in mid-October in the Huntsville Hospital System parking garage. See http://www.al.com/news/huntsville/index.ssf/2014/10/huntsville_hospital_gears_up_f.html for a nice photo.)
I have only skimmed the surface here. I have left out all the evidence and links (though I couldn’t resist the Huntsville tent photo). Any point you want documented, I can provide documentation. But I suspect I have already exhausted your patience and your interest.
I see four possible paths forward:
- If you still want to interview me for an article, we could agree on what sort of interview and what sort of article. If there’s enough overlap between what you want and what I want, we could set a time to talk.
- You could revise your questions in light of this email and see if I want to produce written answers.
- You could take excerpts from this email to use in your article – but only with my prior permission. I would need to okay the excerpts. In particular, I don’t want to end up being quoted in a way that just adds to the he-said she-said polarization that has characterized the quarantine debate.
- You could decide that my obsessions aren’t going to yield the sort of article you want to write, thank me for my time, and move in a different direction.
Let me know what you think.
List of Ebola Risk Communication articles.
Copyright © 2014 by Peter M. Sandman