Olga in Laos sent the following comment to my Guestbook. Because the answer is so long and detailed, I've put it in this separate page. This is her comment:
WHO officially stopped using the term “swine flu” on April 30. The two different diseases – swine flu (which is a disease in pigs) and human flu – need to have different names. The term “swine flu” for the ongoing H1N1 flu (in humans) was a factual error and has caused considerable and completely unnecessary damage.
For instance, here in Laos we’re working on a review of the avian and pandemic influenzas program, which has morphed into a review of pandemic preparedness. Here the overwhelmed Laotian pandemic risk communications group spends time discussing ... the cooking of pork. They face many other challenges, so it is unfortunate that media/international agency sloppiness has imposed such an unnecessary distraction. Other damage includes bans on imports of pork and mass culling of pigs in Egypt (reportedly without any compensation, hitting hard the livelihoods of poor people).
I believe that the U.S. CDC and WHO both dropped the “swine” modifier for these important risk communications reasons. Obama called it the “H1N1 flu.”
This response was written jointly with my wife and colleague Jody Lanard.
It is going to be a ridiculously long response, so here it is in a nutshell:
- Some people really are avoiding pork products because they’re afraid of swine flu. That’s economically harmful and probably mistaken – though information about this new flu virus in pigs is evolving quickly.
- Replacing “swine flu” with “A/H1N1” isn’t a good solution because we already have another H1N1, and we’re inviting confusion.
- Also, the new virus really is a swine flu, even though eating properly cooked pork products is probably safe. It’s not a good idea to suppress scientific information out of concern about stigma.
- Naming the new virus after Mexico or California isn’t an ideal solution either, since that has stigmatization problems of its own.
- Risk communication offers a better, though partial, solution: Guiding people through the “adjustment reaction” with candor and empathy so they won’t get stuck avoiding pork products for long … and will feel like their leaders are treating them like grownups.
If you want to know the details, read on.
Stigmatizing pork products
Here are the facts as we understand them so far (but please note the “so far” – information is evolving fast, and the virus may be too):
- This novel A/H1N1 flu virus is indeed a swine flu virus, according to the WHO, U.S., and Canadian flu experts who identified it. Until May 2, no pigs had been found with this new strain of flu. Then human-to-pig (and possibly pig-to-pig) transmission was documented in Canada. So pigs can get it. But pigs certainly are not how it’s spreading in places like New York City, and there is no evidence (yet) that pigs are spreading it to humans anyplace – though now that’s a possibility that has to be considered. It is a swine flu virus that has become adapted to humans and is spreading between humans. By contrast, the H5N1 “bird flu” was (and is) spreading between birds, only occasionally spreading from a bird to a human, and even more rarely spreading from one human to a second (and maybe a third) and then stopping. So the new H1N1 isn’t behaving like a swine flu virus in the sense that H5N1 is behaving like a bird flu virus … even though by the conventions of virology it is still classified as a swine flu virus.
- Even if you encountered a pig infected with this new virus, the experts say you still couldn’t get sick from eating that pig, as long as it was properly cooked. Ingestion of well-cooked food simply isn’t a transmission pathway of concern. There is no reliable information yet about whether you can get the virus from contact with live pigs, handling raw pork products (in your kitchen, for example), or eating pork products that haven’t been fully cooked. Whether these are possible pathways or not, human-to-human spread is still the main pathway to worry about, at least for now.
- Misunderstanding of the facts as they were initially known led to some decline in the sale of pork products. It also led to – or at least was the excuse for – new trade barriers against pork products from the U.S. and Mexico, and occasional off-the-wall policies like the mass pig cull in Egypt. And as you testify about Laos, it drew a fair amount of attention and resources away from serious pandemic risks, of which there are now two rather than one. Though people are probably mistaken to worry about eating pork products, their concern is natural; this is a new disease they have learned is somehow linked to pigs. The label “swine flu” undoubtedly contributes to the concern.
- For these reasons, the World Health Organization (WHO), the United Nations Food and Agriculture Organization (FAO), and the World Organization for Animal Health (OIE) announced on April 30 that they would no longer refer to “swine flu” but instead to “Influenza A/H1N1.” (There are also influenza “B” and “C” viruses in the world, but only Influenza A virus subtypes are known to cause pandemics.)
So the official decision to suppress the term “swine flu” is grounded in more than just pressure from the pig industry. The name has caused real misunderstandings and real problems.
But there is more going on here than simple misunderstanding. Whatever the new virus is called, many people in many parts of the world believe, often with good reason, that they cannot trust the authorities’ reassurances, which have not always proven reliable in the past. This is true in the United States, where a former Bush administration Homeland Security pandemic planning official told the Washington Post that half the battle is “gaining and maintaining the confidence of the public that the government is on top of the situation.” It is true in Mexico, where a Mexican government prosecutor told Bloomberg News: “The federal government can manage the numbers to control fear and panic in the population…. So they don’t give the real thing.” And many people in poor areas of the world already know that they do not have the material resources to handle pork properly. Many know that it is often not fully cooked. Many don’t necessarily trust that their governments will tell them if they find this novel A/H1N1 virus in a local pig … and don’t necessarily trust that their governments are looking for it.
Insofar as the concern about eating pork products is grounded in mistrust, not just in misunderstanding, a simple name change won’t help. It might even hurt. It might already have damaged trust. Officials kept pounding on the fact that the virus hadn’t been found in any pigs; then they announced they were abandoning “swine flu” as its name; then they found it in pigs. (Then they said they weren’t surprised they had found it in pigs.)
Two H1N1s: a recipe for confusion?
And calling the new virus “H1N1” may cause misunderstandings and problems of its own. It is arguably a recipe for confusion, because we already have a very different seasonal flu virus subtype also called Influenza A/H1N1.
H1N1 caused the catastrophic 1918 “Spanish Flu” pandemic. That one had naming issues too, by the way. It probably originated in China, but the earliest known human cases were in the U.S.; it came to be called “Spanish Flu” mainly because Spain was more candid than other countries, admitting early on that it had a lot of cases.
After 1918, H1N1 morphed into a garden-variety seasonal flu strain. It circulated widely among humans until about 1957, and then started circulating again in 1977. Millions and millions of people have been infected with gradually changing versions of that Influenza A/H1N1 strain, and therefore have some baseline resistance to it. Because it is one of the four widely circulating kinds of human flu that cause significant disease (the others are Influenza A/H3N2 and two lineages of Influenza B), killed Influenza A/H1N1 virus antigen is included every year in the seasonal flu vaccine. That H1N1 antigen is unrelated to the new H1N1 antigen that will be needed to make a vaccine against the new A/H1N1 virus.
Bottom line: There are now two H1N1s to talk about.
Both of us used to enjoy a 1980s television comedy, “Newhart,” starring Bob Newhart as Dick Loudon. It featured a recurring shtick where Dick’s friend Larry introduced his two brothers: “This is my brother Darryl, and this is my other brother Darryl.”
It was funny on TV. But it’s horrible medical communication! Experts talking about A/H1N1 will know which A/H1N1 they mean, but many people in their target audiences will have to use context to figure out when the experts mean the ordinary, familiar, seasonal H1N1 and when they mean the H1N1 that may trigger (or may have triggered) the next pandemic.
Having two H1N1s in circulation – and in conversation – has endless potential for confusion. If experts warn that H1N1 may return to the northern hemisphere when the weather gets cold in the fall, will it be clear which H1N1 they’re talking about? If you ask your doctor whether next year’s vaccine has H1N1 in it, will your doctor understand what the question means – and when the doctor says “yes” or “no,” will you understand what the answer means? If a lab reports how many cases of H1N1 it has confirmed so far, will the audience know which H1N1 the lab is talking about?
Some people will interpret these ambiguities correctly. Some will interpret them incorrectly. Some will seek clarification – and what do you want to bet the effort to clarify is going to make use of the dreaded word “swine”?
Jody thinks this ambiguity problem isn’t all that serious – much less serious than the ambiguity caused by the expression “bird flu pandemic.” She points out that people mostly get along fine without actually knowing there are two nearly unrelated kinds of Influenza B co-circulating. She thinks people can learn to hear about two H1N1s and mostly know which one the speaker is talking about.
Peter, on the other hand, thinks the problem is quite serious. And a lot of scientists say that they, too, are worried about having two H1N1s to talk about. Helen Branswell of Canadian Press wrote a wonderful story on the problem. The title says it all: “WHO Will Stop Using Term ‘Swine Flu’; Scientists Worry about Name Confusion.” Among those she quoted was Michael Osterholm, director of the Center for Infectious Diseases Research and Policy at the University of Minnesota. “That’s nuts,” Osterholm said. “We’ve got to get a better name.”
The “same name” problem – an ordinary seasonal H1N1 circulating along with a brand new H1N1 of unknown severity and transmissibility – will disappear if the new H1N1 launches a pandemic, and then out-competes the old H1N1 and replaces it. No one can know if this will happen. But in each of the past three pandemics, the pandemic virus replaced the previously circulating Influenza A strain (back when there was only one circulating Influenza A strain, prior to 1977), and then gradually “weakened” into the new seasonal Influenza A strain. If that’s what happens, there will only be one H1N1 again – the descendant of the scary one that makes us think about pigs and pork. Like the old H1N1 after the pandemic of 1918, the new H1N1 after the pandemic of 2009 (if we have one) may become a garden-variety flu strain that’s routinely included in the seasonal vaccine.
The naming issue will also be moot if the new H1N1 virus disappears forever. That will take awhile to know and then believe, but once it happens, normal people won’t even need to think about the names of the various seasonal flu strains. “H1N1” will go back to being a piece of technical jargon unknown to the public, and “swine flu” will become the name for two false alarms, in 1976 and in 2009.
If we end up having only one H1N1 at a time that we need to talk about, the confusion will be minimal. But as long as the new H1N1 is a looming pandemic threat and the old H1N1 is a perennial problem, the ambiguity will make it harder to talk about either one.
Déjà vu: Very similar confusions arose a few years ago when officials started using the expression “bird flu pandemic.” The official who was speaking usually knew whether s/he meant a panzootic outbreak in birds or a pandemic outbreak in humans – but the listener had to guess. And many of the guesses contributed to the sense that when avian flu (bird) outbreaks occur nearby, you better not eat chicken.
Even academics who tried to do careful surveys about public knowledge and beliefs about bird flu and pandemic flu usually worded their questions in ways that confounded the two. The respondent couldn’t tell (and often didn’t wonder) whether the researchers were asking about an outbreak in birds or a human pandemic. The researchers couldn’t tell (and often didn’t wonder) whether a respondent was answering about an outbreak in birds or a human pandemic. Respondents answered the questions without knowing what they meant; researchers tallied the answers without knowing what they meant; peer-reviewed journals published the studies without knowing what the results meant.
H5N1 truly was and still is a bird flu virus – it transmits to humans only with great difficulty, and unless it starts to transmit efficiently in humans it will remain a bird flu virus, and it won’t launch a pandemic. So the experts were right to refer to it as “bird flu” (or “avian influenza” on formal occasions). But often they also referred to the potential pandemic virus it might someday turn into as “bird flu” (or “avian influenza”). That was a huge mistake. It led to immense confusion, which we wrote about at length in “Bird Flu, Pandemic Flu, and Poultry Markets: Playing Ostrich or Talking Turkey?”
We argued there, and everywhere we could, that the term “bird flu” should be applied only to routine bird flu outbreaks in birds, plus the one H5N1 virus that already existed and had already afflicted a few hundred profoundly unlucky humans (and millions of birds). We said a different term, “pandemic flu,” should be used when referring to the scary new virus that might someday emerge, the hypothetical mutated H5N1 (or an H5N1 reassorted with another flu virus) that would be able to transmit efficiently from human to human. We steadfastly opposed calling a not-yet-created pandemic strain of H5N1 “bird flu” – since that was the term everyone was already using for the existing H5N1 strain that has never been able to transmit efficiently between humans.
Nobody even tried to get the public to adopt “H5N1” as the name for either virus.
Unlike with H5N1, now there is an actual pre-pandemic strain of H1N1, somewhat efficiently transmitting from human to human, and in at least one instance human-to-pig (and maybe pig-to-pig), with not a single known pig-to-human case so far. It is a new H1N1 never before seen (not in humans and not in pigs either, as far as experts know). We’re okay with calling that one “swine flu.” There is no other current swine flu to complicate public understanding at this point.
Other reasons for sticking with “swine flu”
Genetically, the new virus is a swine flu. It has some pieces of RNA that originally came from human sources and from bird sources, and it is circulating widely in humans; it is not circulating widely in pigs (not yet, anyway, and not as far as we know). Nonetheless, most of its genetic material is derived from swine sources, and technically it is still a swine flu virus. We are not qualified to have an opinion on this arcane question, but apparently everyone who is qualified agrees that by the conventions of virology, the new influenza is definitely a swine influenza. They thought so, and said so, from the start, when it had yet to be found in any pigs. As WHO Assistant Director-General Keiji Fukuda put it on April 26 : “In terms of the virology of these viruses … they are swine influenza viruses…. However, they are different from other swine influenza viruses that have been described in the U.S. and in Mexico. To that extent they do represent a new kind of swine influenza infection.”
Based on its genetic makeup, flu virologists consider this new H1N1 a swine flu virus – albeit one that has adapted to spreading between human beings – an adaptation that is unusual, and that may or may not turn out to be tragic.
The World Health Organization strives to be a science-based agency. Strong political pressure and a sincere desire to reduce economic damage led it to abandon the “swine flu” label. Some real harm was being done by the widespread use of the scientifically correct name. It is nonetheless the scientifically correct name. That, more than the potential for confusion between the two H1N1s, is probably why so many scientists were livid when WHO officially dropped the term “swine flu” on April 30.
In the service of transparency and candor, to protect its reputation for scientific rigor, and to build accountability with the public, WHO should be extremely reluctant to downplay a reality validated by its own experts.
It is probably too late anyway – which makes the name change bad science for no good purpose. The label “swine flu” had a week’s head start. The media will probably keep using it. Headline writers and bloggers certainly will. Comedians may have some fun with the name change. Paranoids may fulminate about how officials have bowed to commercial pressure. And in the end, odds are, both names will stick. So now we’ll not only have two viruses with the same name (A/H1N1 and A/H1N1); we’ll also have two names for the same virus (swine flu and A/H1N1) – another recipe for confusion.
One final argument for retaining “swine flu,” despite its disadvantages: The term is much more memorable than H1N1. It should be fairly easy to help people understand and remember the important differences between “bird flu” and “swine flu.” Do you want the task of helping everyone keep straight H1N1 versus H5N1?
Other naming options
More often than not, pandemics are named after a place – usually the place where they first appeared, but sometimes the place where they first became highly visible.
By the first convention, this new virus would presumably be called the California Flu. And on databases of influenza strains and sub-strains, it will show up as something like Influenza A/California/04/2009(H1N1). “Swine” doesn’t figure into the nomenclature here, even though this is genetically a swine flu virus, because the virus was first isolated from a human host, not a swine host. The current main circulating seasonal H1N1 virus is Influenza A/Brisbane/59/2007(H1N1).
By the second convention, the new virus would be the Mexican Flu. Mexico may or may not turn out to be where the first human case came from. But Mexico is where there have been, so far, the most cases, the earliest known cases, the most fatalities, and the most extreme governmental steps to fight back.
Stigmatizing places can be a problem too, at least acutely. The association of SARS with China damaged business at many Chinese restaurants around the world for a while. We haven’t heard if calling the 1918 pandemic “Spanish Flu” temporarily damaged Spain or not, or if the so-called “Hong Kong Flu” of 1968 damaged Hong Kong. Lyme (in the U.S. state of Connecticut), the Rocky Mountains, and Marburg (in Germany) have survived having diseases named after them.
One solution is to pick a bigger geographical region; hence the “North American Flu,” which had a brief moment in the sun, especially among bloggers. This is analogous to the “Asian Flu,” the name now commonly given to the novel H2N2 strain that precipitated the mild pandemic of 1957. (It was first identified in China, and in 1957 it was called the “Asiatic Flu.” Even the names of past pandemics can cause problems over time.)
Or officials could name influenza viruses the way they name hurricanes and cyclones: with people’s given names, chosen well in advance and assigned alphabetically. They’re memorable, and nobody is stigmatized seriously. But we don’t know if that holds true in all cultures – and there are articles suggesting that some stigma did get attached to the name “Katrina” after the devastating U.S. hurricane by that name. So even naming the next novel flu virus “Alice” or “Alberto” may not be a solution.
It’s easy to get a little tongue-in-cheek about the name blame game. But the problems that provoked you to write in the first place are real and serious, and we don’t mean to make light of them. In the next inter-pandemic period, when we’re not all so preoccupied with a potential crisis on the horizon, it would be worthwhile to talk seriously about a new “public” nomenclature protocol for novel viruses, a way to come up with popular names that can be used alongside the lengthy, complex, scientifically correct technical names. There ought to be better choices than names that stigmatize and names that confuse.
The risk communication response
A compromise name that the U.S. CDC has used from time to time is “swine-origin influenza virus A/H1N1” – or “S-OIV A(H1N1)” for short. That’s not likely to help; it will inevitably be shortened further to “swine flu” for nearly all public uses. Any name with “swine” in it will invite one kind of stigma. Any name with “Mexico” or “California” in it will invite another kind of stigma. And retreating behind “H1N1” invites confusion, and invites accusations that science is bowing down to politics, potentially undermining people’s confidence in the scientists.
Stigma and confusion should be avoided where possible. But it doesn’t look possible to avoid both this time. Every naming option has some problems.
The risk communication response to these sorts of problems – whether it’s stigma or confusion – is to notice that people can usually get past the problems, and to find ways to help them do so more quickly and with less damage.
In the case of H5N1, for example, the confusion of “bird flu” with “pandemic flu” did contribute to people’s fears of bird flu outbreaks – and not just outbreaks of high-path (highly pathogenic) H5N1. For a while, even more trivial, low-path bird flu outbreaks seemed much scarier than they were. But most publics got accustomed to that over time. Now, low-path bird flu outbreaks generate only brief, if any, “adjustment reactions.” And in places where serious H5N1 bird flu outbreaks recur, the public usually recovers its appetite for chicken much faster than when it experienced its first such outbreak.
A point we always make about the bird flu adjustment reaction is true as well for the swine flu adjustment reaction: Officials can help the public get through this early, temporary, “over-reaction” faster if they treat the reaction with respect and empathy.
Last week, as pork manufacturers were putting out endless news releases insisting that pork is perfectly safe to eat, Peter advised his two meat industry clients to stress three themes:
- All the available evidence so far tells us that pigs are not carrying this virus and that pork products, properly cooked, are safe to eat. [Peter urged his clients to be appropriately tentative about this assertion, since there wasn’t much “available evidence” yet. And now, of course, the “pigs are not carrying this virus” part has turned out wrong, at least at one Canadian farm. Peter neglected to advise his clients to say something about the unknown risk of catching the virus from handling raw pork products from infected pigs – a point that needs to be covered now that we know there are infected pigs.]
- But it is natural that some people will shy away from pork products for awhile – partly because they’re waiting until there is more evidence and partly just because the idea of eating pork is temporarily a little unappealing. We will welcome you back when your appetite for pork comes back.
- Meanwhile, our industry will do everything we can to cooperate with public health experts who are working to track down any possible connection that might exist between pig farming and this frightening new virus. [And as it turns out, Canadian farmers and the Canadian Food Inspection Agency did quickly discover that an infected farm worker could pass the disease to pigs. CFIA’s announcement of this information was prompt and candid, though agency statements remained overconfidently over-reassuring that “There is no food safety concern…. Consumption of pork is not considered a route of transmission to humans.”]
The first message (that pigs apparently weren’t carriers and pork products are safe) would sound more credible and less defensive and self-serving, Peter advised his clients, when accompanied by the other two messages – that it’s natural for people to avoid pork products for a while and that the industry will cooperate in the search for additional evidence. If all three messages had been widely used, instead of just an overconfident version of the first, the term “swine flu” would have lost its capacity to provoke anxiety that much more quickly.
As it turns out, the new information will undoubtedly provoke new anxiety – all the more anxiety since it appears to contradict earlier over-reassurances. The reassuring message about pigs and pork was overconfident and premature. And the effort to “de-swine” swine flu will probably end up causing more outrage and fear than if officials had left the name alone.
Although it wasn’t a naming issue, the same sorts of stigma problems arose with regard to eating fish after the devastating tsunami of December 2004. Of course it was important to tell people that the fish were safe to eat. It was just as important to express empathy for people’s natural disinclination to eat the fish that, as was universally imagined, might have been feasting on corpses. (See “Talking about Dead Bodies: Risk Communication after a Catastrophe.”)
It is disrespectful – disrespectful to science and disrespectful to the public – to eliminate a scientifically accurate term like “swine-origin influenza virus A/H1N1” (“swine flu” for short) because we fear the public will never get it that pigs and pork products are not carrying the disease. We wrote the preceding sentence before it was learned that pigs, at least some Canadian pigs, are indeed carrying the disease. It was true even when there was no evidence except genetic evidence to connect H1N1 and pigs. It is that much truer now.
At bottom, “H1N1” is being used as a euphemism for “swine flu.” And the history of euphemisms is not encouraging. Peter has worked with chemical industry clients that wanted to call explosions “rapid oxidations,” with farming cooperatives that wanted to call animal wastes “biosolids,” with waste management companies that wanted to call incineration “thermal treatment.” In his own field, “publicity” gave way to “public relations,” which gave way to “communications,” as practitioners searched for a benign term for what they did. Peter’s perennial advice to clients: Use the terminology that disquiets your stakeholders, acknowledge why it disquiets them, concede that the disquiet is at least natural and perhaps partly justified, and then explain why you think the reality is less alarming than the word implies.
Another key to speeding people’s progress out of stigmatization or confusion is to avoid scapegoating anybody for the problem. Blaming the public for being “irrational” or “hysterical” is, of course, the worst option, the direct opposite of empathy. But blaming a third party is only a partial improvement. The best and hardest path: to acknowledge your part – no matter how small – in creating the problem or making it worse. If you do that well, maybe people will let you start to lead them through the crisis.
It will only make things worse to talk to people about how irrational you think they are, or how sensationalist you think the media are. Talk instead about failures of leadership. A very scary situation erupted, and many world leaders couldn’t figure out how to help people bear it. They couldn’t tolerate people’s initial shock – their early over-reactions, their adjustment reactions. They told people not to be alarmed, not even to worry. They offered people little or nothing they could do to prepare, to protect themselves and their families. So people were left alone with their fears, trying to make sense out of a potential horror, figuring out for themselves what precautions they might take.
We’re not saying that superb leadership could have enabled people to skip the adjustment reaction. We see no way of explaining this new virus to the world without mentioning that it’s a swine influenza virus, and we see no way of mentioning that fact without provoking a certain amount of dietary hesitation. But we believe – with some but imperfect evidence – that candid and empathic leadership helps people get through their adjustment reactions sooner rather than later. In places where leaders ridicule their publics, blame outside sources for their problems, or insist that everyone remain passive and unemotional, the adjustment reactions will be more prolonged and the damage (including damage to pig farmers) will be worse.
It is possible to condemn Egypt’s mass slaughter of pigs without avoiding the term “swine flu.” And without avoiding the term “swine flu,” it is possible to teach the people of Laos that properly cooked pork is safe to eat (separate from the question of whether many poor Lao people have the resources to handle and cook pork properly), and then get back to the crucial business of pandemic planning. With respect for our publics and empathy for their adjustment reactions, we can help them learn the science. We can call a pig a pig, and a swine flu a swine flu.
Stigma does real harm. But the solution is not a linguistic cover-up. That is not worthy of an organization like the World Health Organization, which aspires to a high level of transparency in the service of building trust and accountability with the public.
To help people overcome their acute fear of pork, and to help farmers and pork producers stay in business, the risk communication task is to be both accurate and empathic:
- To legitimize people’s sudden sense that pork may be dangerous;
- To explain why that feeling, though natural, is mistaken (if that continues to be true);
- To ask people to rise above their fears; and
- To seize the teachable moment to explain to people how to protect themselves from the flu, how to prepare for a possible pandemic, and how to handle and cook pork safely.
Trying to stop people from thinking about pork when they hear the term “swine flu” is not the best approach – nor is trying to stop them from hearing that term.
Copyright © 2009 by Peter M. Sandman and Jody Lanard