October 2019 ACIP public comments – anti-vaccine complaints, part 2

This is part 2, the 2019 ACIP public comments, of Professor Dorit Rubinstein Reiss’ review of the recent Advisory Committee on Immunization Practices (ACIP) meeting. Part 1 can be found here.

There were 18 people slotted for the October 2019 ACIP public comments. Because more people signed up for comments than could fit in the hour allotted for it, they used a lottery to determine who will comment (note that in addition, the committee offered unlimited opportunity to comment in writing).

However, six of these people did not attend the meeting, so there were 12 commenters in all. Three of them were pro-vaccine, two members of the Immunization Action Coalition – LJ Tan and Julie Murphy – and one, a pediatrician from Oklahoma, Dr. Eve Switzer.

Nine of the 2019 ACIP public comments were from anti-vaccine individuals.

October 2019 ACIP public comments summary

Very few of the comments directly offered the committee concrete input, though several addressed its general practices.

The one exception was Dr. Switzer’s request, in the name of herself and colleagues, that the committee should offer “better guidance on men B (meningococcal B) vaccine. When science is most vague, most science is needed, not least.”

Generally, the pro-vaccine commenters offered the committee thanks for its thorough, careful work, and provided concrete examples of why and how it helps.

The anti-vaccine commenters provided specific stories of alleged vaccine harms, criticized the committee with varying levels of anger and harshness, accused it of harming children (for some, directly accusing it of harming their own children), and claimed the science behind vaccines was not robust enough.

Several of the anti-vaccine commenters talked about their own children – some of which had medical problems, in two cases, children who died – were understandably emotional (note that the two claims of deaths, however painful, cannot be convincingly blamed on vaccines).

Why have public comments?

Public comments made to government bodies fulfill various goals. These goals can be grouped into two rough categories:

  1. comments’ role in improving democratic legitimacy, accountability, and transparency;
  2. comments’ role in improving agency decision-making, including by providing information and perspectives not otherwise heard. 

More October 2019 ACIP public comments

The contribution of ACIP oral comments in this meeting to these goals appears extremely limited. The public nature of the meetings themselves is certainly part of the transparency of the committee’s activities and its accountability.

But the content of most comments does not suggest they do anything to increase the legitimacy of those comments.

Further, while the oral comments may give voice to perspectives not otherwise heard by committee members (though that would vary) – the anti-vaccine voices – they are not likely to be heard in the sense of having an impact on decisions or contribute meaningful information, for two reasons:

  1. The comments were too hostile. Accusing a group of people, many of them healthcare providers who directly treat people, serving in an advisory role of intentionally harming children or ignoring the harm to them, of being evil, comparing them to Nazis, and implied threats will not create a constructive listening environment. It will cause listeners to shut the comments off (see Note 1). Traveling to Atlanta and sitting through an intense two-day meeting many anti-vaccine commenters are clearly not fully engaged with to voice comments to a group of people who are going to stop listening because you are abusing them seems a strange way to use time and funds.
  2. The information and specific asks in the anti-vaccine comments are of little value to the Committee because they are generally inaccurate – and the committee’s experts know they’re inaccurate – and most of the asks are irrelevant to the Committee’s mandate. Comments focusing on children harmed or dying certainly touched one’s heart. However, the experts on the Committee know that vaccines don’t cause SIDS, are not linked to autism and have a strong safety record, such as what we have observed with HPV vaccines. The Committee will not go from sympathy to reconsidering their recommendations based on these stories. Stories are effective in convincing scientists when they put a face on facts, but not as much when they’re contradicted by the evidence.

Similarly, claims about the science that the committee would know are wrong, won’t work. These include, for example, the incorrect claim that 54% of United States children have a chronic illness, along with incorrect claims blaming vaccines for autism, SIDS, and other issues.

Claiming the science behind vaccines is “junk science” to people who are experienced scientists and know-how robust the body of evidence is will not work, either.

All of these claims will be dismissed by the committee experts. Not because they’re not listening, or callous, but because they listen and know that they are wrong.

In terms of asks, many of the speakers spoke about vaccines mandates, something ACIP has no direct role in or authority over. That shows, at best, misunderstanding of ACIP’s role, and there is nothing Committee members can do with such comments except ignore them.

One commenter asked for an unethical vaccinated v. unvaccinated study – which would require leaving children intentionally unprotected against disease. That’s not going to happen. It’s not needed, either

While it is not historically true of ACIP, quite a few agencies using notice and comment proceedings receive abusive, short, content-empty, off-topic and emotional comments – and those, generally, do not impact, and probably should not impact, federal policy. 

Practically, such comments are nil. They may be of interest to researchers examining the anti-vaccine movement, or a point of curiosity, but they have nothing that could or should impact the Committee’s work.

Compare that to Dr. Switzer’s comment, suggesting that the committee should give better guidance on Men B vaccines – that’s a specific act, within the Committee’s mandates and capability, addressing a specific issue that can be improved, and drawing on actual data. That can have an impact.

Commentary on the comments

While they would not have a direct impact on policy, hostile anti-vaccine comments may make committee members feel threatened, attacked, or harassed. I expect some commenters are fine with that, but I hope many realize that this will make members less receptive to the anti-vaccine comments, even ones that maybe have something in them.

It can also make capable people less willing to serve as committee members, and make finding high-level experts harder – to the detriment of all of us. Those concerns are why it is important and beneficial that pro-vaccine commenters also speak up, even with general comments that do not have a specific request or specific information, and support members, and I hope more people continue to do that.

We can assume many of the anti-vaccine commenters realize that their comments do not have an impact, even if they do not quite understand why the way they comment does not, and cannot, work.

So why do they do it? Why do some of them travel long distances, sometimes having to ask for money to do so, and sit through long and intense discussions they certainly do not seem to learn from, and often seem to misunderstand for the few minutes they can use for comments?

My best guess is that they have two reasons:

  1. They want to feel that they had their say, and standing in front of the committee and commenting gives them some temporary sense of validation.
  2. They want to get mileage out of the videos they make of their comments to galvanize fellow-believers. They can present the comments as statements in an official forum, to maybe attribute to them more weight than just a short video of a non-expert expressing an opinion, often drawing on incorrect facts.

The first may be somewhat related to the idea that public participation increases legitimacy by letting the pubic be heard, even if in a somewhat strange, skewed way.

The second is not a legitimate goal of public participation: it is not designed to help anti-vaccine activists make videos for their cause. Those videos can be used to galvanize believers or try and mislead others.

What can be done?

While it is not clear that the Federal Advisory Committee Act requires any oral commenting on-site, and it nowhere requires allowing videos, it is laudable of the CDC to provide that opportunity, and an opportunity to submit written comment and gives broad scope to commenters.

It should, however, act to prevent abuses and harms from the system. Here are some practical suggestions.

The CDC needs to protect commenters from being threatened or heckled during commenting, which is uniformly done by anti-vaccine commenters towards any pro-vaccine commenters.

Any hecklers should be removed immediately by security.

The CDC needs to make sure committee members get any support they need to deal with inappropriate comments and to continue protecting the physical environment they’re in.

People who repeatedly behave in inappropriate or threatening ways should be banned from ACIP meetings. A three-strike system might be one way to go.

One improvement the CDC made in was adding more information about monitoring vaccine safety, and adding accessible elements to the presentations are improvements. These changes are laudable. I hope they continue. They increase transparency and provide valuable information to the public.

I do not think there is room for or call to prevent or affect the content of comments. That’s within “free speech.”

I also do not think the CDC or the Committee should spend time responding to the anti-vaccine comments. However, the CDC should add a visual presentation, located so it can be caught by anyone filming commenters, making it clear the comments are not official statements.

For example, a screen stating “Public comments reflect the speaker’s views and no official position. CDC neither invites nor endorses the content of these comments” or similar language next to the podium would prevent presenting these as “my comments at the CDC,” something that implies an official role.

2019 ACIP public comments

Notes

  1. More experienced and more professional anti-vaccine commenters – for example, the National Vaccine Information Center, which routinely submits federal comments – do not do that. Their comments are highly professional, generally non-accusatory, and address the substance of the issue at hand.

This article was written by Dorit Rubinstein Reiss, Professor of Law at the University of California Hastings College of the Law (San Francisco, CA), who is a frequent contributor to this and many other blogs, providing in-depth, and intellectually stimulating, articles about vaccines, medical issues, social policy, and the law.

Professor Reiss writes extensively in law journals about the social and legal policies of vaccination. Additionally, Reiss is also a member of the Parent Advisory Board of Voices for Vaccines, a parent-led organization that supports and advocates for on-time vaccination and the reduction of vaccine-preventable disease.

Dorit Rubinstein Reiss
This article is by Dorit Rubinstein Reiss, Professor of Law at the University of California Hastings College of the Law (San Francisco, CA), is a frequent contributor to this and many other blogs, providing in-depth, and intellectually stimulating, articles about vaccines, medical issues, social policy and the law. 

Professor Reiss writes extensively in law journals about the social and legal policies of vaccination. Additionally, Reiss is also member of the Parent Advisory Board of Voices for Vaccines, a parent-led organization that supports and advocates for on-time vaccination and the reduction of vaccine-preventable disease.