The 5 Stages of Anti-Vax Angst: A guide

Last week the Biden administration was criticized for making some harsh statements about those who refuse to be vaccinated. “For the unvaccinated, we are looking at a winter of severe illness and death — for themselves, their families and the hospitals they'll soon overwhelm. But there's good news: If you're vaccinated and you have your booster shot, you're protected from severe illness and death,” said Biden.

That statement came in for much criticism on social media, especially by those who took the statement out of context. “You’re not going to convince anyone to get vaccinated with such harsh language,” some scientists complained.

Well, true. But as someone who’s been fighting the anti-vaxxers for years, I recognized the Biden team’s statements as Stage 3 of what I’m calling the Five Stages of Anti-Vax Angst. I understand their frustration, because I’ve been there myself. Let’s go through these stages, shall we?

Stage 1: Disbelief. I first encountered the anti-vax movement, in the early 2000s, when I was leading a research project on sequencing the flu virus (here’s one of our papers), and a reporter asked me, quite seriously, if the flu vaccine could cause autism. Huh? I thought. “Well no,” I reassured him, “where’d you get that idea?” I soon traced the source of his concern back to a now-notorious Lancet paper by Andrew Wakefield, which turned out to be fraudulent and was eventually retracted.

Surely, I thought, the solution is simply to educate people better, and to explain that vaccines are the single greatest medical advance in the history of medicine. With better education, the anti-vax movement will quickly fade.

In Stage 1, vaccine advocates simply can’t believe that significant numbers of people believe stuff about vaccines that simply isn’t true. Alas, though, they do.

Stage 2: Frustration. Unfortunately, merely writing articles explaining the benefits of vaccines is not nearly enough. Officialdom (government agencies like the CDC and NIH) constantly issues statements about the benefits and safety of vaccines, such as this CDC website. Scientists and physicians have written hundreds of articles and countless books explaining how beneficial vaccines are, to no avail. For example, renowned vaccine expert Paul Offit wrote an outstanding book warning of the dangers posed by the anti-vaccine movement, called “Deadly Choices: How the Anti-Vaccine Movement Threatens Us All.” That book appeared all the way back in 2010, and yet look where we are now.

Just a year after Offit’s book, journalist Seth Mnookin published “The Panic Virus,” an excellent exposé of the fraud behind Wakefield’s original paper, and on how the anti-vax movement has been aided (often unwittingly) by popular media personalities.

What these books and others reveal is that the anti-vaccine movement is loud, committed, and (unfortunately) highly influential. For every article or book written by a clear-headed vaccine advocate (and there are many!), there are multiple articles and books promoting wildly inaccurate claims that vaccines cause harm. Trying to refute these claims is like playing whack-a-mole.

Scientific bloggers have learned that no amount of patient explanation can get through to some people, and the anti-vaxxers just won’t quit. Eventually, some of them move on to Stage 3.

Stage 3: Anger. This is where the Biden administration finds itself. After months or years of explaining, pleading, and even begging people to get vaccinated, the crazy, irrational, and often angry opposition of anti-vaxxers (or the “vaccine hesitant,” to use a kinder term) can be just too much.

Some people take a long time to reach this stage. Dr. Anthony Fauci, director of NIH’s infectious disease institute (NIAID), has been the public face of the government effort to get people vaccinated for all of the past year. He’s been subjected to inexcusable vitriol, including death threats towards him and his family, and he continues to try to convince people that vaccines are safe and effective. It’s a tough and thankless job. Dr. Peter Hotez, a vaccine expert at Baylor College of Medicine, has been tirelessly explaining the benefits of vaccines throughout the pandemic, and he too has been subjected to awful, hateful attacks. (Dr. Hotez also wrote a highly personal book a few years ago, explaining why vaccines didn’t cause his daughter’s autism.)

Neither Dr. Fauci nor Dr. Hotez has reached Stage 3, but I wouldn’t blame them if they did. Some public-health experts have, though, and one can see why: after trying for months to get people to do something that reduces their own risk of deadly disease, only to meet defiance, one might say “I’m done. You all can just go ahead and get sick.”

Or, as the FDA’s Twitter account responded in exasperation a few months ago, to the never-ending insistence that ivermectin, can cure Covid-19: “You are not a horse. You are not a cow. Seriously, y'all. Stop it.” (Ivermectin is a de-worming agent for horses. It does not work against any virus, including the one that causes Covid-19.)

The comments on Twitter can be far, far harsher. So when Biden warned that the unvaccinated “are looking at a winter of severe illness and death,” I can’t blame him. After all, he’s right.

Stage 4. Persistence. For those who get past Stage 3 (or skip it entirely), there’s a realization that even though some anti-vaxxers are simply beyond reasoning with (I’m looking at you, Robert F. Kennedy Jr. and Joseph Mercola), that doesn’t mean we can’t fight back. We have to recognize that misinformation is out there, and that some people will continue to spread it no matter what we might say. But there are strategies that work to convince others to get vaccinated, and we have to keep trying. That’s persistence.

For example, a study early this year showed that just a dozen people were responsible for a large majority of the vaccine misinformation across most of social media, including Facebook, Twitter, YouTube, and Instagram. I and others have called for social media companies to de-platform these harmful individuals, which could go a long way towards slowing down anti-vax propaganda. Let’s keep trying.

Another strategy, illustrated by Paul Offit’s 2010 book, is to reveal how anti-vaxxers often profit from their misinformation. Some anti-vaxxers have gotten wealthy selling supplements and “alternative” medicines, promoting them with bogus claims that the supplements can substitute for vaccines. If we raise awareness that these quacks are profiting from the spread of misinformation, that can help raise skepticism about their claims. Getting someone to ask questions themselves–to think critically, in other words–is often the best way to get them to reject the arguments of anti-vaxxers.

And even though I might seem critical of the efforts by government agencies to educate the public, I still think they should do it. Indeed, they should do far more than they are doing: in addition to providing facts about vaccine safety and effectiveness, the CDC and NIH could work harder to directly counter the myths and misinformation that are constantly circulating.

I’ve been blogging about the anti-vax movement since 2008, even before I started writing for Forbes in 2010 (see here and here, for example). I’ve long ago lost count of how many articles I’ve written, trying to point out the harm caused by anti-vaccine misinformation, and I’ll keep trying. So I’d say I’m still in Stage 4.

Stage 5. Surrender. In the face of stubborn opposition, and sometimes virulent and personal attacks, some people eventually just give up. It’s easier, of course, to stop fighting people who just don’t want your help, and I can’t blame anyone who does. When I call this stage “surrender,” I don’t mean to suggest that pro-vaccination and pro-science advocates ever accept the wildly misinformed views of the anti-vaccine movement. Of course not. It’s just that some people decide they can no longer spend time on what seems an endless battle.

I’m not advocating that we should ever give up. We can’t, because infectious diseases don’t care if we stop vaccinating ourselves.

So those are the 5 stages of anti-vax angst, as experienced by countless medical and scientific professionals who are fighting misinformation.

And here we are, in the midst of another huge peak in Covid-19 infections, with a significant portion of the U.S.–and of other countries as well–refusing to get vaccinated. The unvaccinated may indeed be facing a “winter of severe illness and death,” even though no one wants that. I don’t blame anyone for pointing out what is very likely to happen. And if the winter ahead is indeed bad, then I place much of the blame on a small number of very loud voices, such as the Disinformation Dozen, who irresponsibly continue to promote harmful untruths about vaccines.

Vaccines are the single greatest public health advance in the history of medicine. Vaccines have eliminated smallpox from the planet, nearly eliminated polio, and made many other previously-feared childhood illnesses a thing of the past. We can do the same to Covid-19, if everyone will just get vaccinated.

NEJM editorial calls data scientists "research parasites." Can Joe Biden fix this?

Vice President Joe Biden recently called for a "moonshot" to cure cancer, which President Obama announced in his State of the Union address last week. Motivated by the tragic death of his son Beau, who died last year of brain cancer, Biden says he will devote his remaining time in office, and many years after, to helping fight cancer. On his VP blog, he writes that he wants to do two things:

1. Increase resources — both private and public — to fight cancer.
2. Break down silos and bring all the cancer fighters together — to work together, share information, and end cancer as we know it.

I'm 100% behind the Vice President on these efforts, and I hope he succeeds beyond his wildest ambitions. But he might discover, paradoxically, that raising money–his first goal–is easy compared to the challenge of getting scientists to share data.

Exhibit A is an editorial titled "Data Sharing" that appeared in last week's New England Journal of Medicine, written by Dan Longo and Jeffrey Drazen, the deputy editor and editor-in-chief of the journal. Drazen and Longo wrote that scientists who wish to use other people's data to make new discoveries are "research parasites." Or, to be more precise, they wrote that "some front-line researchers" (none of whom are named) have this view. They also argued that "someone not involved in the generation and collection of the data may not understand the choices made in defining the parameters" and thus have no business re-analyzing the data.

The condescension implicit in this statement is deeply troubling. Drazen and Longo are saying, essentially, that only the people who originally collect a data set can truly understand it, and anyone else who wants to take a look is a parasite.

The editorial has led to a firestorm on social media. For example, Nobel Laureate Barry Marshall tweeted that

"Plenty of Nobel prizes came from a new look at other people’s data."

UC Davis professor Jonathan Eisen tweeted that the "editorial by @nejm is simply deranged," and a new Twitter account under the name ResearchParasite quickly drew many followers.

I asked Dr. Drazen if he really meant to imply that scientists who use other people's data are parasites. He and I spoke on the phone, and he emphasized that he's a strong supporter of data sharing, and that's he been traveling the country promoting a new policy to share the information from clinical trials (something that rarely happens). Just a few days ago, he and other medical journal editors proposed a new policy on clinical trial data sharing, a policy that (while not perfect) would be a big step forward.

So why, I asked him, did he use the harshly negative phrase "research parasites"? Dr. Drazen pointed out that he had heard this term from others, and that's why he enclosed the phrase in quotation marks in his editorial (true). He shared with me an update that will appear in NEJM this week, in which he and Longo will explain further; however the journal asked that I not quote from that.

I was relieved to hear that Dr. Drazen and his NEJM colleagues are supportive of data sharing, and that are implementing new, more open policies on clinical trial data sharing for the journal. I asked him if he would also state directly that he did not believe the phrase "research parasites" was accurate or appropriate. He declined to comment, though he reiterated the point that this phrase came from others, not from him or Dr. Longo.

So the attitude is clearly out there. Indeed, it's not that unusual: I have encountered similar attitudes many times in my own career, although I should quickly add that it is far from universal.

It's a simple fact today that biomedical researchers (take note, Mr. Vice President) rarely share their data with others. Unless a funding agency or a journal in which they wish to publish requires them to share, they will sit on their data forever. I've personally been involved in projects where the various participants–funded by NIH or other federal agencies–refuse to share data even with other groups in the same consortium. For example (and this is just one of thousands I could point to), the raw data behind this clinical exome sequencing study, led by Baylor College of Medicine and published in 2013 in NEJM, is not available. The data collected by the famous Framingham Heart Study, running since 1948, has been locked up by Boston University scientists for half a century, and only recently (after considerable pressure from their funders) have they agreed to let others take a look at small pieces of the data, if they beg hard enough.

Let's go back to Vice President Biden's blog, where he wrote:

"We’ll encourage leading cancer centers to reach unprecedented levels of cooperation, so we can learn more about this terrible disease and how to stop it in its tracks.... Data and technology innovators can play a role in revolutionizing how medical and research data is shared and used to reach new breakthroughs."

Again, I'm 100% behind the VP here. Biden is already meeting with cancer researchers to see what he can do to accomplish these goals, and I'm sure they will tell him what he wants to hear. In contrast, let's see what Drazen and Longo wrote in their NEJM editorial:

"...a new class of research person will emerge — people who use another group’s data for their own ends, possibly stealing from the research productivity planned by the data gatherers, or even use the data to try to disprove what the original investigators had posited. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites.”"

Shocking! If you share your data, someone might try to disprove your results! Could it be that a published result relies on misinterpreted data and is wrong? It took me less than a minute on Retraction Watch to find multiple articles retracted by the NEJM itself, including some that were retracted because the original data could not be found.

Disproving a claim using the same data is what reproducibility is all about, and this is one of the most important reasons that data needs to be shared. After all, if someone has distorted their data in order to reach a conclusion that isn't really justified, we need someone else–someone not invested in proving the same result–to re-analyze the data using independent methods. This is how science corrects itself.

These sentiments of the unnamed "front-line researchers" quoted by Drazen and Longo reveal the dangerously arrogant assumption that only they understand the data, and that no one should question their findings. And there's also that concern that another scientist might discover something that was missed by the original group. In what view of reality is this "stealing from the research productivity" of that group?

The phrase "research parasites" also reflects the view of some scientists that the data they collect is their property, despite the fact that their research is (frequently) funded by the public. It's time for the funding agencies to set some new ground rules: if the government funds a study, then we all own the data. Scientists who don't like the rule can find another source of funding (and believe me, they might grumble and complain, but they will do what their funders demand).

One final note: a quick scan of recent articles in the NEJM reveals that, not surprisingly, many of them rely on the human genome sequence. Did any of those authors contact the "data gatherers" to get permission to use the genome in their work? Did they offer to include the human genome sequencers as co-authors on their papers, a step that Drazen and Longo recommend? Of course not–and they shouldn't. When we publish papers, we cite the sources of our data, but we don't ask their permission nor do we include them as co-authors. Citations are the currency of modern science.

So here's some advice to Vice President Biden: don't just talk to scientists and urge them to collaborate. They'll all agree, and tell you wonderful things about their numerous collaborations, but once you leave the room, they'll go back to business as usual. If you really want to change the culture, Mr. Vice President, change the rules.