Vaccine hesitancy and the problem of "science"

The concerns of vaccine hesitant people must be taken seriously. But the specter of "science" needs to be used consistently.

Last week, I listened to an excellent episode from Jerusalem Demsas’ podcast Good on Paper. In this episode, Demsas interviews Dr. Rachael Bedard who argued in an NYT op-ed that “treating Mr. Kennedy’s supporters as fools” would not bring them into the pro-vaccine camp. Dr. Bedard also points out that beneath the vaccine skepticism that Kennedy channels—and one that seems to resonate with at least a subset of people—are concerns that the left should take seriously, such as the concern about the “nefarious influence of the pharmaceutical industry on health care.” And even existential questions like:

Have we become too reliant on treating every matter of discomfort with a pill instead of tackling questions about environment, culture and behavior? Are we over-diagnosing and over-treating mental illness with prescription drugs while failing to prevent rising self-harm?

The op-ed is excellent (go read it) and I should start off by saying that I agree with most—even all—of it. Vaccines are good and can help us create a healthier society; people who are vaccine-hesitant are cross-pressured and their views on vaccines are shaped by their views on all kinds of other values they hold dear; those values and concerns must be addressed and those concerns often don’t have much to do with the “science” behind vaccines. But along the way, some of this will involve “more transparency about how scientific knowledge is produced.” What I like even more is that the op-ed is pitched explicitly at Robert Kennedy Jr., takes his concerns seriously, and offers him suggestions on how he might pursue his objectives in a bipartisan way. There is much to admire and agree with in Dr. Bedard’s piece, both in its substance and in its style.

My concern—perhaps quibble is the right word—comes from some of the examples that Dr. Bedard offers in her wide-ranging conversation with Demsas. Her premise is that the leaders of the anti-vaccine movement draw on concerns that resonate with many Americans, such as the concern about overmedicalization: about whether we have too many drugs, whether we treat too many diseases with pills, and whether there is some kind of strategic collusion between government and industry that just leads to more and more medicines and care in the pursuit of profit. These are concerns, she says, that any “liberal doctor” will agree with, which is to say, these are classic left-wing concerns even if the people who seem most concerned here are not particularly ideologically left-wing.

When Demsas asks her for an example, she gives the recent example of the Alzheimer drug that got approved by the FDA even though it was not actually high-performing according to the FDA’s own standards.

There’s, you know, sort of famously: In 2021, there was a really controversial, high-profile case of approval for a drug for Alzheimer’s that had just been shown not to work, basically. And Alzheimer’s—very common disease, incredibly devastating to families. People are desperate to believe that there is something that they can do for folks. We don’t really have good treatments right now. This was the sort of treatment that had received a lot of hype in advance.

The data was just not supportive of the idea that it was effective. And, in fact, it did obviously cause harm in some small number of patients. It got pushed through the FDA approval process anyway, largely, in part, due to pressure from the Alzheimer’s Association, which was receiving money from the drug company. That is a perfect-storm setup for an RFK-type critique. And it’s true. And at the time, I wrote an op-ed criticizing that process. So that’s a place where he and I totally agree.

Notice something here (which I hope to address in a future post): the drug was pushed through because of the Alzheimer’s Association, a patient’s rights advocacy group, which, Dr. Bedard argues, was being funded by the drug companies. This is a collusion not necessarily between doctors and drug companies but between patients and drug companies, who in between them, have captured the federal government at least in this case. In particular, this particular case was resolved in favor of Alzheimer’s patients and their families, who got Medicare reimbursement (and hundreds of millions of dollars of government money) for a drug that was not actually very effective but that they presumably thought could still make a difference to some of them. And so they lobbied the government for approval (presumably with money that came from drug companies). The people who lost were the people on whom this money might have been spent more effectively.¹

But what could the FDA have done instead either in the Alzheimer case or the COVID case? Demsas asks a question about what exactly should we blame the FDA for whether it is for being too forward or too safe:

So I think it’s an interesting kind of tension, though. Because, you know, I wrote this article in 2022, and the headline was, “Is the FDA Too Cautious?” And part of what the article talks about is that the FDA is way too conservative when assessing clinical trials for therapies of, quote, “terminal illnesses with no existing therapies such as pancreatic cancer.” So these are areas where you would want the FDA to be overly willing to approve therapeutics, because the risk of death and disability are already high for the individual patients. […]

And then when I wrote this article, there were a lot of people who were like, Yes, it’s so important. There were scientists, outside individuals, public-health researchers from the outside who were like, Yes, it’s really a problem that the FDA doesn’t behave this way. There’s tension that we have in this conversation that I can imagine is very frustrating for people in government, where they’re being told, Hey. Why won’t you approve these tests quickly? Even though you’re not sure that they’re good, why won’t you act with greater degree of concern for people who need something right now, rather than trying to get the perfect thing later? And on their end, they’re saying, We need to increase trust. And trust means provide people things when they’re ready, provide people things when we can actually defend them clearly.

[So] there’s, obviously, this dynamic here, where you get blamed for things that go wrong much more than you get blamed for things that you don’t do, because people often don’t see those sorts of things.

But Bedard’s answer falls right back on the question of science:

So the first thing I would say is: The science actually matters a lot here. So there are examples, like the one that you just gave, where there are things—there are discoveries, breakthroughs, drugs, whatever—where the evidence is just sort of incontrovertible right out the gate, right? Like, way before sort of a study’s expected end point, it’s very clear the benefit is there, and people are tolerating it well enough, and the condition is serious enough that we should try to expedite it. [my emphasis]

This is odd to me. After explaining so clearly that one can’t talk to most vaccine hesitant people by explaining the science to them, Dr. Bedard seems to go back to saying that ultimately, the way the FDA should decide whether to go fast or slow should depend on the science, about whether “the evidence is incontrovertible right of the gate.”

But this just begs the question. The evidence for the COVID vaccines was incontrovertible right out of the gate, a point that even skeptics of the mask mandates admit. And those vaccines were speedily approved—not speedily enough for some, too rushed for others—and they were the catalysts for a remarkable rise of vaccine hesitancy.

Let’s take the case of aducanumab, the Alzheimer drug, about which Dr. Bedard’s point seems to be that the science, the result of the trial itself, wasn’t good enough; in fact, that it was incontrovertible that aducanumab did not demonstrate much of an improvement in the trial patients. But if you take the Washington Post op-ed in which she wrote about the issue back in 2021 (opposing the approval), the question of the “evidence” is dealt with in just one paragraph. The rest of the op-ed talks about the drug and its actual use in patient care and how that might harm patients and their families (apart from costing Medicare a ton of money)—and the “harm” here is not even necessarily medical; it comes from financial costs that they will bear (for not-so-great results), the emotional toll for families and care-givers who have to get the dementia patient into a PET scan, the cycle of hope and despair that they might go through, and so forth. Even in this argument, the incontrovertible science—here, the science is incontrovertibly wrong though—plays only a small role.

The science is clearly important and it needs to be done well. The point I’m trying to make here though is that it isn’t consistent to say in one sentence that vaccine hesitant people should not be lectured at about the science and then in the next sentence argue that the decision about cutting corners on the regulatory approval for a drug must start from “incontrovertible science”; it is precisely the incontrovertibility of the science and its incompatibility with the other values at stake in the debate that is at issue.²

I’ll get off my soapbox now.

Another similar blog-post you might like:

Is science bad for politics?

1. The bigger problem here, as Matthew Yglesias has written many times, may be that in the US, the process of drug approval by the FDA and its incorporation into Medicare is all tied up together. You could imagine a scenario where the FDA approves a drug even if it is not super-effective (let patients who want to take it try it out) but Medicare says it will not pay for the drug. But sadly, that’s not how it works in the US.

2. At the end of the podcast episode, Dr. Bedard says:

And so, to me, the challenge for the agency is less about whether they look good or bad, and more about trying to sort out those types of problems, right? When does it make sense for us to err on the side of being as conservative as possible in approving something? Versus, when does it make sense for us to err on the side of being as open to risk as possible because the alternative of continuing to live in an environment without treatment is so devastating to people?

This seems correct to me and I wish she’d just said this rather than talking about the “incontrovertible science.” The point is that the “when does it make sense” question has to be answered on the basis of the competing values at stake, and those values will determine ultimately the role the science plays in the debate.