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Ever since Donald Trump’s unexpected victory in the Presidential election last year, many of us who advocate for the view that medicine and public policy should be based on the best evidence and science have been increasingly disturbed by just how little science and evidence mean to the Trump administration. Our concern began well before the actual election, based on the dangerous antivaccine politics on display in the Republican primary races, in which several of the candidates seemed to be competing over who could best pander to the antivaccine fringe. Trump himself, of course, has a long and sordid history of expressing a number of antivaccine views that he’s expressed on Twitter and in interviews many times dating back at least to 2007 and encompassing—of course!—the scientifically discredited view that vaccines cause autism. So when Donald Trump was nominated and then when he was elected, a number of physicians and a huge number of scientists were appalled—and rightly so, as it turns out.

George Carlin

Who knew that George Carlin’s immortal routine about the seven dirty words you can’t say on TV would become the basis for government policy, only substituting different “dirty words”?

Donald Trump bans “seven dirty words” at the CDC

I was reminded of that fear and what was likely to be the result of electing someone like President Trump on Saturday morning, when The Washington Post broke a story, “CDC gets list of forbidden words: Fetus, transgender, diversity“:

The Trump administration is prohibiting officials at the nation’s top public health agency from using a list of seven words or phrases — including “fetus” and “transgender” — in official documents being prepared for next year’s budget.

Policy analysts at the Centers for Disease Control and Prevention in Atlanta were told of the list of forbidden terms at a meeting Thursday with senior CDC officials who oversee the budget, according to an analyst who took part in the 90-minute briefing. The forbidden terms are “vulnerable,” “entitlement,” “diversity,” “transgender,” “fetus,” “evidence-based” and “science-based.”

Here’s a brief video:

And more:

At the CDC, the meeting about the banned terms was led by Alison Kelly, a career civil servant who is a senior leader in the agency’s Office of Financial Services, according to the CDC analyst, who spoke on the condition of anonymity because the person was not authorized to speak publicly. Kelly did not say why the words are being banned, according to the analyst, and told the group that she was merely relaying the information.

Other CDC officials confirmed the existence of a list of forbidden words. It’s likely that other parts of HHS are operating under the same guidelines regarding the use of these words, the analyst said.

And still more:

The longtime CDC analyst, whose job includes writing descriptions of the CDC’s work for the administration’s annual spending blueprint, could not recall a previous time when words were banned from budget documents because they were considered controversial.

The reaction of people in the meeting was “incredulous,” the analyst said. “It was very much, ‘Are you serious? Are you kidding?’”

Never put it past the Trump administration to leave an easy opening for ridicule. It had to pick a list of seven words to ban. Not six. Not eight. Seven. Seven allows me to channel George Carlin and refer to them as the “seven dirty words” that the CDC can’t say on TV (or anywhere else). I had thought of giving this post the title, “The Science-Based Vulnerable Entitlement of the Transgender Fetus for Evidence-Based Diversity,” but, damn if someone on Twitter hadn’t beaten me to it:

George Carlin is more appropriate for someone of my generation, anyway, given that I grew up with him and one of his classic routines, “The Seven Words You Can Never Say on Television,” more commonly referred to as the “seven dirty words.” Besides, as managing editor of this blog, in particular I was appalled that the terms “science-based” and “evidence-based” were on the list. After all, what the hell else is the CDC supposed to base its policy, research, and regulations upon? How can one request funds for scientific research on, for instance, transgender health issues without using the word “transgender”? Or, more pointedly, how does one request funds for research on microcephaly caused by the Zika virus without using the term “fetus”? Of course, the very idea of banning the word “fetus” is, quite obviously, to force the CDC to use the word “baby” or “developing baby” in its official budget requests, thus not-so-subtly influencing any health or scientific issue where abortion might be a relevant consideration.

I also fear for the “longtime CDC analyst,” as it is probably very obvious to the White House who leaked word of the ban to The Washington Post. I fear that that analyst is not long for the CDC. I also suspect that that analyst knew the consequences of leaking the information from the meeting but did it anyway. Good for him or her.

Mockery: The inevitable reaction to scientific censorship

Not surprisingly, the Internet exploded at this edict. Indeed, as I write this, I’m hoping that the outcry and mockery will cause the Trump administration to back down before this post even goes live. There are indications that it might be backing down in that the FDA has explicitly denied that it has been forbidden to use the seven dirty words. Also, the Department of Health and Human Services (HHS), while not exactly denying ban on the ban on the seven dirty words at the CDC, claims news stories have “mischaracterized” it, which is what bureaucrats always say when caught by the news media attempting to implement an obviously awful policy. (Censoring the words scientists can use in their funding requests is always bad policy.)

One meme created by Kevin Folta summed up the reaction quite well:

I’m half-tempted to rename the blog “Confirmicated Medicine,” but will resist the temptation…for now. I couldn’t do it without Steve Novella’s permission anyway, but I could always do it at my not-so-secret other blog, although how I’d mesh the new name with all the cheesy images from a 36 year old obscure British science fiction TV show remains to be seen.

“Science-based”: One of the “seven dirty words”?

Be that as it may, the Trump administration gave precious little guidance regarding replacement terms, other than for “science-based.” It sounds benign, but really isn’t, as you will see:

In some instances, the analysts were given alternative phrases. Instead of “science-based” or ­“evidence-based,” the suggested phrase is “CDC bases its recommendations on science in consideration with community standards and wishes,” the person said. In other cases, no replacement words were immediately offered.

We use the term “science-based medicine” because we recognize that medicine is not a science, at least not strictly. For instance, patient values can have a huge role in deciding which science-based treatments to use or whether to forego treatment altogether, among other examples. We do, however, argue that medical treatments should be based in science. As Steve Novella put it in the very first post ever on this blog, now nearly ten years ago:

The philosophy of this blog, at its core, is simple: Safe and effective health care is critical to everyone’s quality of life; so much so that it is generally considered a basic human right. The best method for determining which interventions and health products are safe and effective is, without question, good science. Therefore it is in everyone’s best interest for health care to be systematically evaluated by the best science available.

Now, some of you out there might be wondering: What’s the difference? “Evidence-based,” “science-based,” aren’t they basically the same thing as basing recommendations on “science in consideration with community standards and wishes.” The difference is one of emphasis. I view this as a Trojan horse designed to open the door to the CDC making non-science-based recommendations, as long as it’s considered the science. In other words, rather than science being the prime driver of health-based recommendations of the CDC, “community standards” and “community wishes” are now elevated to be equal to science in recommendations.

There are a number of situations where this sort of a wishy-washy “alternative” can be very problematic. Tara Smith points a couple out:

Soak that up. This opens the door for official CDC documents to support, say, abstinence-based education in conservative areas as a “recommendation based on science in consideration with community standards and wishes.” In other words, not science-based at all, even though many communities support it *despite* the scientific evidence. Or anti-vaxxers in Oregon who believe vaccines are “toxic” to have that now become a CDC recommendation based “on science in consideration with community standards and wishes.”

It’s that latter example that came to my mind right away. For instance, “community wishes” might be that more funding is channeled to studying the scientifically discredited idea that vaccines cause autism. Science says that a link between vaccines and autism has never been demonstrated in well-designed epidemiological and scientific studies. Or what about nonmedical exemptions to school vaccine mandates. The science is very clear that easily obtained nonmedical exemptions are associated with lower vaccine uptake and greater likelihood of outbreaks of vaccine-preventable disease, while banning nonmedical exemptions or at least making them harder to obtain are associated with increased vaccine uptake. If “community standards and wishes” are taken into account, maybe my home state legislature’s boneheaded attempt to keep the Michigan Department of Health and Human Services from implementing science-based recommendations to increase vaccine uptake could be acceptable to the CDC.

Now consider the above “recommended replacement” terms in the context of what Donald Trump has done with respect to vaccines and the CDC. Right before the election, an antivaccine blogger couldn’t resist blurting out that Donald Trump had met with antivaccine activists in Florida in August 2016, including the patron saint of the antivaccine movement, discredited gastroenterologist Andrew Wakefield, the man whose fraudulent case series in 1998 gave birth to the most recent iteration of the antivaccine movement in history. During the presidential transition period, Trump also met with Robert F. Kennedy, Jr., one of the most active and famous antivaccine activists, a man who recently raised close to $50,000 to meet with every legislator to promote antivaccine pseudoscience. It’s not clear exactly what they discussed. RFK Jr. claimed that they discussed his chairing a “vaccine safety commission.” This claim was quickly denied by the Trump transition team, but that didn’t stop RFK Jr. from sending an e-mail to members of the Waterkeepers Alliance, which Kennedy leads, announcing that he would leave the environmental group if the commission actually comes to be. More recently, RFK, Jr. issued the most spectacularly dumb “vaccine challenge” since Jock Doubleday. Basically, like many antivaccine activists, RFK, Jr. dons the mantle of a “vaccine safety activist,” even though he’s anything but, his risible oft-repeated claim to be “fiercely pro-vaccine” notwithstanding.

Do you see why I was concerned about CDC vaccine policy?

Then there’s the new CDC Director, Dr. Brenda Fitzgerald. While her previous record as the Georgia Public Health Commissioner was reassuring for her vigorous pro-vaccine stance, she is not exactly the sort of doctor who is likely to stand up to political meddling in public health affairs. For one thing, she is not a scientist and hasn’t even done clinical or epidemiological research, two previously very desirable qualifications in any CDC Director. Worse, before she became Georgia Public Health Commissioner, she sold quack anti-aging treatments from her private practice and had even been a Fellow in Anti-Aging Medicine. As I noted before when I first discussed her peddling of anti-aging quackery, Dr. Fitzgerald’s case suggests that you can be pro-vaccine and still be a quack. More importantly in the case of the ban on seven dirty words, not being a researcher grounded in science, Dr. Fitzgerald is in danger of not being able to distinguish pseudoscience from science when antivaxers come calling (and they will come calling) to demand an “investigation” into issues relevant to vaccines. I also hoped that she would listen to CDC scientists, but, even if she does, I doubt she’ll have the spine or smarts to stand up for science and resist this ban on the seven dirty words.

It’s very clear that the Trump administration does not value science and wants to control the narrative and research about science as much as it can. It’s also clear that the administration favors extreme deregulation and free market fundamentalism, given that two of the names floated to head the FDA were cronies of über-Libertarian Peter Thiel, one of whom wanted to roll the FDA back to only requiring evidence of safety and not efficacy before approving drugs and another who wanted to substitute online reviews for science as evidence to be used in drug approval applications. Ultimately the Trump administration settled on the “least bad” option for the FDA, Scott Gottlieb, who is as close to a real, honest-to-goodness pharma shill as there is in existence. Then there was Tom Price, a Georgia Representative and orthopedic surgeon, who was appointed to head HHS but lasted only a few months before scandal consumed him. He belonged to the ultraconservative free market fundamentalist group of physicians masquerading as a medical professional society, the Association of American Physicians and Surgeons (AAPS). AAPS is rabidly antivaccine and antiscience in a number of ways, as well as very Ayn Randian in its view of medicine. While there is no good evidence that Price was antivaccine, one does not belong to such an organization without being sympathetic to its views.

These are the sorts of people the Trump administration has been appointing to posts involving science and medicine. Sure, Trump kept Francis Collins as NIH Director, but that’s about the only sound choice he’s made. Of course, the desire of the Trump administration to control the narrative with respect to science extends far beyond health. This is not even the first time that the administration has tried to censor scientific terminology. As Winston Smith was tasked with doing at the Ministry of Truth to news stories that no longer jibed with the version of history mandated by the totalitarian regime in which he lived in George Orwell’s novel Nineteen Eighty-Four, the administration has been throwing references to human-caused climate change down the old memory hole, even at NIH. Basically, any science that conflicts with the Trump administration ideology is being systematically purged from the government, as much as the administration can manage, while appointing people like Scott Pruitt, a man who made his name suing the agency and who opposes the agency’s mission, to head the Environmental Protection Agency.

What about the other words?

I can speculate about why the Trump administration might want to ban words like “entitlement” and “vulnerable.” First of all, it’s clear that the current administration is hostile to “entitlements,” although I am unsure why it would matter in terms of banning the word for budget requests, although I can guess that it might not want the CDC doing research on how “entitlements” (Social Security, Medicare, etc.) impact health.

Reasons for banning the word “vulnerable” are easier to see. In epidemiology and medicine, “vulnerable” populations are defined as populations more at risk for disease, poor health outcomes, and death because of age (children are considered a vulnerable population), sex, access to health care, and socioeconomic status, among other factors. In general, vulnerable populations can be described thusly:

Vulnerable populations include the economically disadvantaged, racial and ethnic minorities, the uninsured, low-income children, the elderly, the homeless, those with human immunodeficiency virus (HIV), and those with other chronic health conditions, including severe mental illness.2 It may also include rural residents, who often encounter barriers to accessing healthcare services.3 The vulnerability of these individuals is enhanced by race, ethnicity, age, sex, and factors such as income, insurance coverage (or lack thereof), and absence of a usual source of care.1,4-8 Their health and healthcare problems intersect with social factors, including housing, poverty, and inadequate education.2

Given the policies of the Trump administration, one can easily see why it would want to ban the CDC from using the word “vulnerable” in its budget requests.

It’s even easier to see why the Trump administration would want to ban word like “transgender” as a sop to the conservative evangelicals who supported him. After all, there is no good substitute term, not even one as convoluted and unbalanced as the one proposed for “science-based.” The overall effect is to make it harder to discuss scientific research having anything to do with transgendered people through language. Human nature being what it is, any roadblock placed in the way of doing research on a subject will make it less likely that scientists will want to jump through the necessary hoops to do it. Also, banning “transgender” is a clear signal to the CDC and other government agencies, whether they have to hew to the same ban or not, that the administration will not be receptive to budget requests for research in this area.

But what about “fetus”? As I alluded to above, banning the word “fetus” forces the CDC to use words like “baby” or “developing baby,” and changes the framing of any discussion of abortion. Why not ban the word “abortion” too? Good question. My guess is like that of Emil Karlsson, namely that banning “fetus” can “serve to crack down more broadly about research related to pregnancy and other issues related to reproductive health for women.”

Finally, “diversity” is a strange word to ban, although not surprising given the Trump administration’s oft-expressed hostility towards policies intended to promote diversity and equality. However, one wonders about unintended consequences. In medical science, the word “diversity” is used to describe far more than just racial and sexual diversity in human populations, the usual use of the word in policy and social science. As Karlsson also notes, “diversity” is a scientific term frequently used in biology and medicine; e.g., diversity can refer to genetic diversity of pathogens or hosts, diversity of animal populations, and the like. Will the Trump administration allow these latter uses of the word but not uses of the word related to human racial and ethnic populations, for example, and will the censors be scientifically savvy enough to tell the difference?

The predictable non-denial denial

On Sunday, Dr. Brenda Fitzgerald, CDC Director, took to Facebook and Twitter to deny everything.

First Facebook:

Here she is on Twitter, saying basically the same thing:

I was not reassured. This is a non-denial denial.

Note that that HHS statement was nothing more than the same statement quoted by a STAT News article published on Saturday, specifically a statement issued by HHS spokesperson Matthew Lloyd. Also note that I remain unimpressed by Dr. Fitzgerald using the terms “evidence-based” and “science-based” in a Tweet. Remember, the news reports stated that use of these terms was to be banned in budget requests. I also note that even Dr. Fitzgerald doesn’t exactly deny it. Let’s look again at the key Tweets:

Notice how carefully Dr. Fitzgerald is not to deny that these words were banned in CDC budget requests. It’s very careful phrasing that denies nothing while appearing to deny the reports. If these words were not actually banned in budget requests, why not say explicitly that these words are not banned in budget requests? Yet Dr. Fitzgerald does not do so. Instead, she hides behind carefully crafted sentences.

I call BS. I am now more convinced than I was when I saw the first story that the Trump administration did indeed ban these words, particularly in light of a follow-up report describing how officials from other HHS agencies revealed that they, too, had been given similar lists of banned words, and then some. The reporters also checked in with the CDC analyst who provided them the original story:

At the CDC, the briefing was led by a senior career civil servant in the office that oversees formulation of the agency’s budget. She opened the meeting by telling participants not to use the words “vulnerable,” “entitlement” and “diversity” because documents containing those words were being “flagged” by others higher up the chain in the budget process, and documents were being sent back to CDC for corrections.

And:

The CDC analyst said it was clear to participants that they were to avoid those seven words but only in drafting budget documents.

“What would you call it when you’re told not to use those words?” the person said. “If that’s not a ban, maybe I need to improve my vocabulary.”

No, the analyst doesn’t need to improve his vocabulary, and it doesn’t matter that, this year, the ban only applies to budget requests. The chilling effect is the same. Administration officials might now be claiming that this is only about the budget and how to win funding from Congress, words matter, and using the correct words matters.

Insoc Logo

Insoc Logo. By Nirwrath – Made in Inkscape 0.48.4.1, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=25354838

1984 has arrived 33 years later than Orwell predicted

In this case, invoking George Orwell’s dystopian novel is not inappropriate. Orwell understood what all totalitarian governments know, namely controlling language and narrative is an essential tool to controlling populations. That’s why in Nineteen Eighty-Four, Orwell portrayed unwanted news and history being thrown down the “memory hole” and inconvenient people becoming “unpersons” (i.e., erased from existence), the term in a language he called Newspeak for eliminating all references to them. The Trump administration policy is not quite a memory hole, but this attempt to ban “inconvenient” words at the CDC is uncomfortably close to Newspeak.

The intent is clear. The pretext might be about the budget process, but, no matter how much Trump administration officials claim it’s just about winning funding from Congress, it’s about more than that:

Dr. Ashish Jha, director of the Harvard Global Health Institute, worries about the ban’s broader impact.

“It sends a signal to people in the agency that this is not just about the budget process,” Jha told STAT. “There’s as much of a risk of self-censorship that comes out of this than actual direct censorship … This is the part that’s much more pernicious than any direct pronouncement.”

“So of course the administration and its defenders are going to argue that this is only about what goes into the budget,” Jha said. “But we know that the signal to the agency is much stronger than that. And it’s going to change behavior of people who work there. And that’s much more damaging than any direct censorship.”

Exactly.

Science and ideology often butt heads, and this tension is not infrequently apparent between Presidential administrations and government agencies devoted to science. However, the great strength of the US federal government’s science programs dating back many decades has traditionally been just how little political considerations can usually interfere with the scientific efforts of these agencies. Indeed, it has been impressive just how little difference changes in administrations have usually made in the day-to-day operations of federal agencies tasked with funding scientific research and using scientific findings to develop policy options. That’s not to say that previous administrations haven’t tried before to influence the scientific mission of agencies like the EPA (probably the most frequent target of political meddling), NIH, NSF, or CDC. However, as far as I can tell, the Trump administration’s edict to the CDC is unprecedented. Never before has a list of words, “seven dirty words” or others, been explicitly banned for use in budget requests.

This attempt at censoring scientific discourse, even limited as it is to one agency for 2019 budget requests, provides grave reason for concern, as it is not likely to be limited. Yes, right now HHS is denying that this is a policy for any agency other than CDC, and, yes, the FDA has stated that it “hasn’t yet received or implemented a policy to avoid certain words in budget or policy work.” The key word is “yet.” If this censorship of science isn’t nipped in the bud at the CDC, there’s no reason to expect that the CDC will be the only agency affected. As Tara Smith notes:

If this policy is allowed at the CDC, there’s no reason to think this will stay in that agency, either. Imagine all of HHS, NASA, NOAA, the Department of Education, and many others requiring similar definitions of science/evidence-based. It’s programmatic approval of the idea that facts are anything you want them to be.

It’s literally turning “truthiness” into Federal policy.

Dr. Fitzgerald and scientists at the CDC need to resist this obvious attempt to censor “inconvenient” scientific discussion. Scientists need to speak out and resist. You and I need to speak out to our elected officials. This new policy at the CDC is not normal. It is a violation of norms accepted by both parties over many decades. It must not stand.

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Posted by David Gorski

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