Vaccines and autism: "Culture eats data for lunch"

A common saw in the business world is that “culture eats data for lunch every day”. The lesson is supposed to be that in trying to create organizational change, it is important not to assume that people do what they do simply because they are ignorant of the facts, and that these simply need to be presented to them and change will occur. This is also the case in many other areas, including public health, and it seems it is often easier to create change by presenting simple “facts” (even if they are wrong) that are easy to digest and concord with pre-existing belief systems than more complex or nuanced facts that are actually right.

Recently, in a Facebook “discussion”, I was informed of a couple of things by a friend-of-a-friend whom I do not know. One was that vaccines are bad because pharmaceutical manufacturers make lots of money on them, and they are evil. Indeed, I had acknowledged that I think that they are evil, and the “discussant” asked (rhetorically, I assume) how I could then trust them? I didn’t respond (who needs to waste time arguing with folks who will never be convinced) but it is a logical fallacy. Drug companies are evil, in that they systematically exploit every method they can to make money, and even more money, but this does not mean everything that they do or make is evil. They are happy to make lots of money selling drugs (or vaccines) that in fact work well; their evil is in hiding when they don’t work well, or have bad effects (think “Sackler” and oxycontin) and grossly overpricing them when they do. Vaccines do work, and incredibly well, some better even than others. There have been rather rare side effects (beyond local soreness or slight fever) associated with them, but the one getting the most play is their association with autism, especially measles (or measles/mumps/rubella, MMR) vaccine. They don’t cause autism as shown by many studies, some of which are cited below and all are available by searching PubMed (National Library of Medicine) or Google Scholar.

Or maybe not. The other thing that this discussant noted was that there are over 200 studies showing that it does cause autism, which was news to me. They didn’t provide the citations (it was, after all, just a Facebook post) but I presume they have them. The only other explanation I can think of is that it is a number that they heard of read somewhere and are repeating (something which most of us are, at least sometimes, guilty of). In any case, I haven’t been able to find them. I am not going to go into great detail here about the absence of a link between autism and measles vaccine, as there are already many good discussions available, two of which are a review of Vaccines and Autism by the Children’s Hospital of Philadelphia and Vaccines Don't Cause Autism. Why Do Some People Think They Do? From the Johns Hopkins Bloomberg School of Public Health. This article in StatNews also reviews the evidence. If you are interested in some of the studies done that showed no association between vaccine and autism, one big one was from Denmark that looked at over 650,000 children and was published in the Annals of Internal Medicine in 2019, Measles, Mumps, Rubella Vaccination and Autism: A Nationwide Cohort Study. There are dozens of others, which have looked at over 3 million children, and are easily found on searches on either NLM or Google.

If not 200, however, there are at least 2 studies, by the same author, Andrew Wakefield, that purport to show that measles vaccine causes autism. The first, published in the Lancet in 1998, Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children, studied 12 children. It not only didn’t prove that the vaccine caused autism, but was so deeply flawed it could not have, and the Lancet retracted the paper (which you will see in a notification when you search it or follow the link above). Several of Wakefield’s co-authors removed their names from this paper. There was a second study published in 2002, using a different, but also flawed, methodology.

However, despite the vast preponderance of evidence, the Secretary of Health and Human Services, Robert F. Kennedy, Jr., is not convinced and is commissioning a new study of the link, to be done by David Geier, long associated with the movement to associate vaccines with autism, (who was not a doctor but practicing under the license of his father -- who had HIS revoked for experimenting on autistic children). I wonder what it will find?

In 2025, so far in the US, there have been almost 900 cases of measles, with 3 deaths, the most of both in many decades. Given that the mortality rate for measles is about 1/1000, it suggests an under-reporting of cases. 97% of those affected were unimmunized. This means that parents who choose to not immunize their children are risking disease and death from measles. And doing so for a “benefit” (not getting autism) that is unrelated. This is sad, but people believe what they believe for a variety of reasons, and act on those beliefs. There is also no shortage of papers studying and reporting on why this is so, e.g. Why Parents Say No to Having Their Children Vaccinated against Measles: A Systematic Review of the Social Determinants of Parental Perceptions on MMR Vaccine Hesitancy.

Historically, and today, the prevalence of measles is higher in communities of lower socioeconomic status, for a variety of reasons discussed, for example, in Measles Outbreak in Socioeconomically Diverse Sections: A Review. Of course, many diseases are more common in communities of lower socioeconomic status, for the same reasons, prominently including lack of access to health care. What is concerning about the current measles outbreak is that it is so closely tracking, in the main outbreak in West Texas and adjacent New Mexico, low levels of immunization that result from belief that vaccines are bad, not because they are inaccessible.

Taking things on faith and not on evidence is a cornerstone of most religions, but belief in things like vaccines causing autism, and other evidence-free ideas, should not be on the same order as religious beliefs. However, it may be that being used to accepting some of the most important things on faith conditions one to being willing to accept others. Also, while the autism/vaccine question is pretty specific, it is easy to accept simplistic guidelines to guide a person as to what is “good” or “bad”, without the (unfortunately ubiquitous) subtleties. One example is “natural”; things that are “natural” are good, and things that are manufactured or modified are not. So, vaccines, being manufactured, could be bad. Of course, this idea is pretty dangerous; lots of natural things are poisons, and many beneficial natural things (like plants that help with certain conditions) are actually not as good as the standardized and purified forms made by those evil pharmaceutical companies. Aspirin is derived from willow back. But how much willow bark is good for my arthritic pain? In what season? What microclimate? How much will be too much and cause stomach ulcers? If something seems too good to be true it usually is; similarly using a single touchstone (e.g. “is it natural”) it is too simple and often wrong.

I used to be very concerned with people ignoring science and good research and believing, well, what they wanted to believe, for whatever reason. Now I am even more concerned about the seeming pride that they take in not believing science, as if that were a good thing, that in not believing what the evidence shows they are asserting their loyalty to a cause and victory over an enemy.

This is the much more important thing to believe in: US mortality is high, and strongly linked to wealth! Let us work on addressing that.

 

 

 

Culture and Medical Culture: Understanding to increase benefit and reduce harm

Culture is often understood, at least by that culture that is in a majority in a given place, as a characteristic of others. That is, we are “regular”, they have a culture. The greater the disproportion between the dominant group and others in terms of numbers, the less diverse a community is, the more this – incorrect – assumption prevails. In the 19^th century, before the work of Bronislaw Malinowski and Margaret Mead, who actually spent time in the places and cultures they were studying,  cultural analysis of the world by anthropologists was often done “offline” by what have become known as “armchair anthropologists”. All European, they ranked cultures from least to most civilized, and guess what: European, and especially Western European, cultures were always at the top!

It should be needless to say that this was wrong. In addition to all the examples that can be given of other non-European cultures were far more advanced (think the Arab world for mathematics and science, China for all kinds of things), all cultures are different. They do not just have “strengths” and “weaknesses”, or areas in which one is “better”, but differences which have developed to serve the needs that existed where they lived. Weather, for a start, makes a difference in the types of crops grown or how housing is designed. In addition, of course, different cultures share many similarities. This allows for, for example, religious ecumenism, in which folks of different religions can come together based upon the values that they share. In the US today, we have seen great advances in understanding not only that differences between cultures do not mean one is better than another, but also that similarities between people usually exceed differences. Recently, we are seeing great strides against racism, sexism, jingoism, and all the other “isms” that promote hatred instead of understanding. Unfortunately, however, we also see a backlash from people who feel threatened by the idea that other people, whom they have disparaged and discounted, are indeed their equals. This has gone beyond attitudes; it has led not only to violence, but to legislation enshrining prejudice, hatred, and discrimination. I hope this will get better, but it might get worse first.

One way that we have on tried to address this issue in medical education has been discussions between small groups of students about how they see common phenomena in the world, in their communities, in families, and relationships. The more diverse a class is, the richer these discussions become and the more the students learn that what they think of as “regular” is in fact just as much a cultural belief as that of other people. Of course, this also can reveal assumptions that they may make about what is “normal” that are not normal for others, particularly regarding financial and socioeconomic issues. Or, for instance, whether the police are seen as your protectors or your persecutors.

This becomes an important entry point for examining medical culture, which certainly exists and carries its own beliefs and prejudices, as do most professions. These beliefs are no more, or less, “true” than sociocultural beliefs. Because medicine involves not only extensive interaction with other people who are not immersed in the culture but, even more, extensive power over the lives and health of those people, coming to grips with what you (and your teachers) believe because, well, we all believe it, rather than what is based in evidence, is important. This is more difficult because a big part of the socialization to a profession such as medicine is for a novice who is from outside that culture to learn the jargon, way of thinking, and indeed prejudices that characterize it, and this can have negative as well as positive results.

For example, our medical students usually enter perfectly capable of speaking English (and perhaps other languages) and conversing with others and communicating ideas and information. As part of becoming doctors, they learn new language, new terms, new acronyms, new meanings, and eagerly repeat them as evidence of their acculturation. Unfortunately, this can become an obstacle to communication with their patients, who do not speak this language. One example: a couple of sentences ago, I used “positive” and “negative” in their usual English senses of “good” and “bad”. However, when doing medical tests (lab, imaging, biopsies) a positive result is usually bad, and a negative result is good. But when a doctor, or student, informs a patient that their results are negative, it is common for the patient to react with fear, since this sounds like a bad thing. We urge them to say “normal”. Whew, that’s a relief!

Some other issues of medical culture are address in an Op-Ed by Robert Pearl in the Los Angeles Times of May 16, 2021, “How doctor culture sinks US health care”. A big part of Dr. Pearl’s critique in the distinct bias, not only in physician attitudes but in medical journal articles, towards intervention and procedures rather than prevention. This, he notes correctly, is very much tied to money, since physicians and hospitals and health systems (which are increasingly the physicians’ employers) stand to make much more money from them. Medical journals are more likely to print articles with positive (there is that word again!) results, demonstrating that a procedure had benefit, than negative results, demonstrating that, actually, compared to something – or nothing – else, something (or nothing) that was easier, cheaper, less interventive, and less dangerous, it had no better outcomes. Of course, anyone can see that knowing this information, that doing something is not worthwhile, is at least as important as knowing that something works well.

However, the inclination (or perhaps prejudice) among most physicians is to do something, to intervene; aside from making money, it makes them feel that they have skills, are justified, are important. Unfortunately, this is also an attitude quite prevalent among their patients, who want something done to help their problem – to cure their disease, or increase their lifespan, or improve the quality of that life, and in particular to ease their pain. But doing something does not always improve things, and can definitely increase the risk of harm. We need to know what works (and what doesn’t), and in what circumstances, and what the dangers are, and what the alternatives are, and their potential benefits and risks, and then have discussions together about what, in the specific circumstance a specific person is in, what would be the best choice for them.

This effort is likely to overlap with more traditional sociocultural and religious beliefs, which can have an influence on what a person thinks would be best for them. Communication around this requires care, and a real effort on the part of the medical professional to understand and to make their own thoughts clear and clearly expressed. This is even more complicated when, as is the case, physicians are from a pretty narrow slice of the American population, racially, culturally, and economically (and, again, a good argument for increasing its diversity). As in all situations where there is a power differential (and in medical care, the greater power lies with the physicians and health systems) it is incumbent on those with greater power to make the effort to understand those with less. And, at least as important, to not make decisions for and about people based on only your understanding – or worse, assumptions – about what they want, or are because of race, religion, gender, national origin, etc. Doctors, even when they are well-meaning (and all of them are not always) too often allow themselves to fall victim to the ecological fallacy, and confuse “condition X is more common in population Y” with “the patient is a member of group Y so probably has condition X”.

It is, of course, also very important to recognize that all interventions and procedures are not a bad idea; indeed, they are often the best treatment. And, also, that not everything sold as “preventive” is really so; plenty of tests and treatments called preventive are not proven to prevent anything. It is not easy to overcome prejudices and beliefs.

But understanding that we all have culture, and trying to not be bound by it and doing our best to understand that of others, is a good start.