77 Comments
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Scott M's avatar

Wow Jess - this is a fantastic piece. Thank you for your sensitivity, insight and courage in presenting this issue in such a clear and empathetic way that reminds us of our calling and that we can be better.

Robert Wack's avatar

Thank you for an important perspective well written and delivered. One not so small quibble: for some reason, you seem reluctant to use the term "disinformation" and instead rely exclusively on "misinformation". In the cases you describe, where individuals made decisions that caused actual harm due to their information environment, that is disinformation. Misinformation is just wrong, but there's no agenda, and/or no harm: the month of January only has 28 days, the Orioles should have been in the World Series last year. The ideas and advocacy of anti-vaccine information ecosystems have agendas counter to the interests of the public, AND they cause actual harm. That is disinformation.

Jess Steier, DrPH's avatar

Both misinformation and disinformation exist-- I would argue that many people share falsehoods unknowingly, but, unfortunately, MANY do intentionally. I typically just write misinformation as a catch-all for brevity purposes, but you're absolutel right that quite a bit of this is DISinformation, specifically.

The Artistic Rebel's avatar

Non of that excuses that fact it’s bloody murder. You people want to feel so smug you need to act like everything is forgivable.

Seems pretty normal given the state of the world.

Just stupid.

The Artistic Rebel's avatar

You moron. I don’t believe in seatbelts because the government mandates it. Ya my child died in a car accident but my #noseatbelt coalition was there for me.

Give your Dog Gamd head a shake!

George94's avatar

Why don't you start by proving there is a virus and then a vaccine? You don't even know what vaccine means. "Anti vaccne" is obvious disinformation language. The correct terminology is survivors. Labellng someone "anti vaccine" is disinformation tactics. Trying to blame "antivaxxxers" for deaths that occurred in the care of allopaths is severe abuse.. Terrorism. Deaths that acutally resulted from toxic drugs administered as a result of belief in the disinformation you are spreading about there being "disease" caused by "virus".

https://odysee.com/@hipsterious:3/Dr-Andrew-Kaufman---Do-viruses-exist-and-cause-disease:3«

Steven Bornfeld's avatar

Don't conflate poor medical treatment (which does exist) with a fundamental problem with medicine. That you feel a need to question the existence of viruses speaks to your credibility. The child referenced in the article did not die at the hands of allopaths.

Mary Makary's avatar

You don't want to go there. Take a look at its profile.

Steven Bornfeld's avatar

LOL I'll take your word for it. Hey, are you related to Marty the FDA Commissioner?

Mary Makary's avatar

My evil twin. That fucker even stole my "T."

Steven Bornfeld's avatar

LOL--I actually have an evil twin (but he'd tell you it's me who's evil)

The Artistic Rebel's avatar

No the child died DIRECTLY FROM THE RESULT OF THE PARENTS ACTIONS… It’s called MURDER and they care MORE ABOUT THEIR EGO THEN they EVER DID THEIR CHILDREN!

Do They DESERVE IT?

Play stupid games, win stupid prizes… like dead children.

He got exactly what he wanted… FREEDOM FROM VACCINES!

Proud father of the year hear. Let’s praise him actually!

Skeptical's avatar

Um hello, “What was she wearing?”, “Why didn’t she leave him?”, “Did they have their seatbelts on?”, “Why didn’t they just comply with the officer?”

Victim blaming is not new. This is just another opportunity.

Unfortunately, in many vaccine cases, the victim wasn’t the one making this decision and they deserve so much more compassion than they get due to transferred judgment of their parents’ choices.

Jason Maslanka's avatar

It’s really lovely that you can be this good of a person, but I don’t think most can or should even be asked to. If someone was driving 70 in a school zone, you wouldn’t meekly say that they just don’t understand the impact of their actions on your children. You’d be infuriated that they were a threat to a civil society. Anti-vaccine skeptics are no different.

Walter Foddis's avatar

Skeptic is being misused by media to describe what is more truthfully described as science denialism. Let's not perpetuate that misinformation.

A skeptic questions with scientific evidence and logic. In order to distrust vaccines, leaders in the movement reject peer-reviewed science and instead rely on pseudoscience, anecdotes, misrepresenting scientific findings, and outright lies. That is, they are science denialists.

JB's avatar

Fair, but I'd say that school speed zones aren't a hot politically-charged issue either, and I think that's a BIG part of it, especially in today's world. Can't say that I've ever heard anyone arguing against school speed zones.

Jason Maslanka's avatar

But that’s exactly the point. It’s equally ridiculous. Anything can be political. That doesn’t mean we have to respect it.

JB's avatar

Of course anything can be political, and ultimately most things are, but the 2 are not comparable, is all I was saying. There are not organizations created literally to rail against school speed zones and pump out false and misleading information on them.

But to your original comment "It’s really lovely that you can be this good of a person, but I don’t think most can or should even be asked to." -- I would disagree that we shouldn't ask people to "be a good person," but how to do that (in regards to vaccines in particular) is the disconnect, and I think that's what this author is trying to get to the bottom of here. Because being angry at someone who's anti-vaccine (as if they were speeding thru a school zone) doesn't get thru to them, and in fact, probably has the opposite effect if we're being honest. Case in point: the guy that went to the CHD conference.

BethC's avatar

Is someone driving 70 in a school zone at two a.m. a threat to civil society?

Being unvaccinated does not make someone a threat to civil society. Expressing doubts and questioning what they are told about the risk/benefit of vaccination does not make someone a threat to civil society. It's not against the law the way speeding is.

This piece is excellent in that it reminds health care workers that they must persuade others to vaccinate. To do that means they must perceive you as caring about them and their health. Being judgmental does not help persuade them.

Jess Steier, DrPH's avatar

I agree that in the context of herd immunity, yes, unvaccinated people do pose a threat to society. I see the distinction between what I described and your example of driving 70 MPH in a school zone is different for a few reasons, aside from the obvious illegality. I think it is quite obvious to EVERYONE that driving at high speeds in a school zone is dangerous. I think that many people who choose not to vaccinate genuinely believe that they are making the right decision for their child based on the information to which they are exposed.

BethC's avatar

Herd immunity is an interesting concept mathematically. Unvaccinated people don't pose a threat to society when there are only a few due to medical or religious reasons. It's only when a relatively large portion of society chooses against vaccination that herd immunity slips enough to be a serious threat to civil society. When that happens, it seems to me that there is indeed a problem, but that needs to be resolved regarding why so many are choosing against vaccination. Your column today is an excellent essay on what needs to change in our institutions to persuade more people to vaccinate.

George94's avatar

It's not mathematical as such but a set up in the diagnostic criteria. In the case of 'measles' for example this is a 'disease' label applied to 'unvaccinated' people. If someone has status of "vaccinated" then they are unlikely to be labelled with 'measles'. Further more 'cases' have to be 'linked' together so this becomes increasingly easier to do when there are more people labelled "'unvaccinated"'. The 'vaccine' is like an 'immunity' idol in the tv show survivor. It doesn't 'work' biologically but is simply a get out of jail free card.

https://viroliegynewsletter.substack.com/p/measles-magic

BethC's avatar

I'm not sure why you think herd immunity is not a mathematical computation.

"To calculate the herd immunity threshold, scientists use the formula: 1 – (1/R₀)." from https://historyofvaccines.org/vaccines-101/what-do-vaccines-do/how-herd-immunity-works

George94's avatar

If you are saying it is simply a mathematical computation why are you calling "unvaccinated" people a threat? The actual threat is you trying to inject stuff into people using such guilt tripping and deceit.

Jason Maslanka's avatar

“ Being unvaccinated does not make someone a threat to civil society.” -and that’s where we disagree significantly.

BethC's avatar

Why do you believe an unvaccinated person is a threat to civil society? What is the danger you perceive?

Abigail Welborn's avatar

Every unvaccinated person makes it easier for a disease to spread, more likely to mutate (in the case of covid or flu) and harder for people who can't get vaccines (immunocompromised or too young) to go out in public. For example, that's why we have vaccine mandates for public schools. Public schools are a publicly funded public good and should try to reach the maximum number of people. Allowing students who aren't vaccinated by choice (admittedly their parents' choice) means that student's who *don't* have a choice would be in more danger at school. We have to make the policies that help the most number of people and make the lowest barrier to entry. A parent who doesn't want to vaccinate their kids can go to private school (which does cost) or homeschool (for free except their time), but that is the price they pay to make their choice. We cannot allow their choices to take away other people's choices or to cause other people harm. "Your freedom to swing your fist ends at my face," etc. We can't ask a parent whose disabled child can't get vaccinated (they don't have a choice) to bear the burden of someone else's choice, specifically because public goods must prioritize the greatest overall benefit.

BethC's avatar

While I can agree that an unvaccinated person is much more likely to be infected with a disease, I don't see that as a threat to civil society unless they actually are infected. Further, the threat is the same regardless of the reason why they are unvaccinated, whether by choice or otherwise.

Abigail Welborn's avatar

Medically they're the same, but I would say practically they're not.

If you're not vaccinated, you depend on 95+% of other people being vaccinated to keep the disease from spreading. If a few people don't vaccinate, diseases are still unlikely to spread, because measles, for example, dies out quickly when 97% of people it comes into contact with won't spread it. That's why even though the US has had isolated measles cases this whole time (usually from travel to less-vaccinated places), we have rarely had outbreaks spread. In that way vaccines are victims of their own success. Because we've had such high vaccination rates in the US for two generations, people have forgotten how bad polio or measles could be.

So a person unvaccinated by choice is a "threat" to society because they COULD help spread the disease, and a person who is actively infected is a "danger" to society, because they ARE spreading the disease. That's why no matter how or why you got infected, you have to quarantine. If you're *choosing* not to vaccinate, you're not contributing to the safe threshold even though you could be. We need to reserve that 3% for the people who CAN'T vaccinate, because they have no choice.

Steven Bornfeld's avatar

Do you believe (as I do) that RFK Jr. is a threat to civil society, by muddying the waters of public health and fostering mistrust between patients and their own doctors?

BethC's avatar

I've been quite disappointed by RFK Jr.'s performance as HHS secretary. However, I do not blame him for fostering mistrust between patients and their own doctors. I blame the CDC for that. They have not been honest with the American Public about the risks versus benefits of vaccines. This is why people like RFK Jr. and others have been so successful in swaying others to decide against vaccination. I think propaganda is the correct term for most of the CDC public statements regarding vaccination. For example, claiming that vaccines do not cause autism is not a scientifically correct statement, it's propaganda. Putting out propaganda rather than honest assessments have led to the lack of trust in what they recommend.

Whatever someone’s background level of education and knowledge, they must decide who to trust, who is telling the truth. Scientific credentials are not needed to recognize conflicts of interest, obfuscation, lack of direct answers to questions, etc. that has been inherent in the decision making process for vaccine recommendations. To decide to withhold compliance regarding vaccine recommendations on that basis is understandable. This social problem will not be solved through science.

BethC's avatar

That doesn't explain why you consider an unvaccinated person to be a threat to civil society. What is the risk you are concerned about? Seems like it must be less than speeding given that we have no laws against being unvaccinated.

Sarah Berg, MD's avatar

This is powerful and so beautifully written. Thank you.

Informed Consent Freedom's avatar

"They didn’t win that family over with better science. They won them over by showing up with presence rather than judgment."

They won him over with LIES, and with malevolent blame shifting. And now they're using him to propagate evil.

haleykisshansen's avatar

Thank you for this perspective.

I think a lot of it genuinely does come from curiosity and self assurance to remind ourselves we’re making the right decision. We always want to know if someone was wearing a seatbelt when they got in an accident. Or if they were wearing a helmet when crashing a bicycle.

Instead of listening to those who have vaccine hesitancy, we often meet them with a big F you. With Covid, I think we could’ve had a lot more people vaccinated if we chose to have caring conversations with our inner circles instead of alienating them.

I saw a pediatrician post she’s exhausted having to explain vaccines to patients and appointments were now taking longer. Unfortunately I think that’s a good thing, people should be spending time asking questions and hearing from their doctors vs hearing information somewhere else.

Abigail Welborn's avatar

Agreed. Unfortunately I think those longer conversations are needed for now. Of course it's annoying and exhausting to have to explain things that used to be taken for granted; it ISN'T fair. I hope that as more patients who hear from her, she will need to have fewer of those in the future, as they will be reassured that she's giving them good information.

PreventionMD's avatar

Great piece, truly appreciate this kind of depth.

One other thought regarding the Hildebrand family. I don’t know if medicine or public health failed to provide empathy with them. What is very clear is that anti vaxxers provided them a narrative that was almost impossible to turn down, that it wasn’t their fault their daughter died, it was the medical system/health care who failed. As a parent grieving, how hard would that be to pass up?

Megan Daniels's avatar

I am in awe, Jess, for so many reasons; the first being how so many people have come together to support this film and its participants. People like you - who write these beautiful, heart-felt Substack articles - are elevating the film's message. Knowing the film moved you and others at Unbiased Science brings tears to my eyes. Tears of gratitude and relief. There were times throughout the process that this film almost didn't get finished. And now, brilliant motivated audience members want to have a conversation about what we try to tackle in the film. WOW. Just...wow. There aren't enough thank yous in this world to express how grateful we are that you took the time to build your own campaign around the topics in the film. I say this with deepest gratitude - THANK YOU. We're humbled that the film resonated with you the way it did.

Michael McEvoy's avatar

Thanks Dr Steier . You make a very important point . I am a primary care doc of 40 yrs . You reminded me I go through a similar thought process when a smoker is dying of lung cancer .

Keith Mellett's avatar

A sign of a good article is when it's thought provoking. Nice job.

Christine Sutherland's avatar

As a community, we have every right to be angry when lives are lost because of medical ignorance and|or the influence of wellness grifters, especially when the life is that of a child who should have been protected.

We also have a right to be angry that anti-vaxxers put the entire community at risk.

It is almost never right to be gleeful or smart-arsed about someone’s death (you can guess an obvious exception right now) or to have disrespect for someone’s mourning.

But anger. That one is totally justified.

Steven Bornfeld's avatar

Of course the grief is real. So is the rage--at RFK Jr., but also at the parents. It's a signal that all of us fighting to make things better are being ignored; that parents are mis-educated. Of course we don't shame the parents. We also don't shame parents of kids who are killed in preventable accidents. I rather doubt that not feeling rage will make things better. It will not get rid of the shysters and grifters that make this easier. That's not easy to do, and the mistrust of legitimate healthcare workers is a far bigger problem than the antivaccine movement.

Rachael's avatar

I need to process this one…

Keira WickBerg's avatar

Thank you for this! It captured a lot of my thoughts and feelings I haven't been able to put into words yet. Having started in the ER as a trauma nurse before going into ID epi, this resonated a lot with my ER days, especially with all the GSW's and stabbings that were gang related. So much isn't always a choice and the sorrow and pain those left behind doesn't change with the circumstances.

Carolyn Sullins, PhD's avatar

Thank you. None of us would respond to the news that a friend had late stage cancer with, "Did she get regular screenings? Did she eat processed food?" We should hold the same basic decency with the news of any disease.

Whenever I tell people about my post Covid illness, the first response is often, "Were you vaccinated?" Not "sorry to hear that" or "how are you now?" (In case you're wondering: yes I was vaccinated, no I wasn't up to date on my boosters, so either way it was my fault).