Do It Yourself Health and the Anti-Vaxx Movement

Ross Douthat has a rather excellent piece in the New York Times. He thoughtfully explains why some people end up not vaccinating their kids.

These are people who have direct, immediate, personal experiences that make them anywhere from skeptical to terrified of giving their kids certain vaccines. The much-discussed example now is parents who have a child who seems to slide into autism immediately after vaccination, but the category is wider than this. There is still a lot of mystery around human health, and there are a lot of people who have medical experiences, or whose children have medical experiences, or both, that are strange and baffling and awful in ways that simply don’t respond to standard medical diagnostic tools and methods. This the world of “chronic fatigue” and “fibromyalgia” and “environmental illness” and is-it-Lyme-disease; the world of the “sudden illness” that changed Laura Hillenbrand’s life; the world of all kinds of debilitating allergies and inflammations and reactions and agonies that sometimes get classified (not unreasonably) as psychosomatic but aren’t experienced any differently than a normal, mainstream problem or disease.

And people in these worlds end up relying on personal experience, not medical consensus, in the treatments they choose for their families because the medical consensus doesn’t seem to offer them anything: It can’t explain why they’re sick or why their kids are sick, it didn’t predict the reactions they seem to have to different medications and treatments and antibiotics and, yes, vaccines, and it doesn’t offer a clear path back to health … so they feel, very understandably, like they just have to experiment until they somehow find their own.

If we really want to increase the vaccination rates in this country. It is best for us all to not dismiss the anti-vaxxers as insane and selfish. It probably is best to understand where they are coming from. The anti-vaxx movement may have begun as a hoax, which I find totally infuriating. But Douthat is right. Western medicine doesn’t have all the answers.

One of my good friends has a daughter with severe Celiac Disease. She has major, big-time issues with gluten, as well all sorts of other mysterious aches and pains that take the poor girl out of school for weeks. The doctors don’t have much advice for my friend. She’s had to figure out herself how to treat her daughter. When her daughter gets an ordinary chest infection, she has to call the drug companies to find out if their antibiotics contain gluten. She gets most of her advice from parent chatrooms on the Internet.

And then I’m in the autism community. In our case, doctors have been exactly zero help. His pediatrician never thought my son had a problem. His neurologist diagnosed him at age five, but hasn’t been any help since then. She’s a drug dealer and doles out some attention medicine, which is mildly useful.

It is blatantly obvious to all the parents in my clique that some autistic kids get better and some kids don’t. Some kids learn how to talk and communicate and have useful, productive lives. Other kids stall out. Again, doctors and western medicine are useless at this point. We huddle in corners of therapy centers sharing our secrets.

Some people believe that kids recover from autism when there is a major change in diet. I don’t see it, but others do. I’ve seen the impact of intense interactions between the child and parents or other adults. With enough effort, the young brain can sometimes get rewired. Still, both these beliefs — food and intense interactions — are examples of DIY health, cobbled together by people who aren’t getting answers from the medical community.

So, I do have some sympathies with those who question the medical establishment. Douthat doesn’t think that sympathy and increased information will change the minds of people who don’t vaccinate their children. I think it’s an important first step.

UPDATE: However, however, however. Where the anti-Vaxxers and I part company is when they state that western medicine is purposefully hurting children. Doctors are willingly disregarding the interests of the their kids and pumping poison into their veins. I think that Western medicine still doesn’t have the answers for many serious health issues, but I don’t think that doctors are actively hurting my kids.

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30 thoughts on “Do It Yourself Health and the Anti-Vaxx Movement

  1. The CBC’s The Current up here just had an interesting discussion on this this morning where they discussed that there’s lots of research into vaccines but not a lot of research into which pro-vaccination messages actually work on parents who are not quite hardcore anti-vaxx but leaning that way. You might find it worth a listen: http://www.cbc.ca/thecurrent/episode/

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  2. I 100% agree that the medical profession doesn’t have all the answers. Health is complicated and the system is set up to treat acute situations rather than chronic. There is a lot that they/we don’t know about how our environment (emotionally and physically) impacts our health over our lifetimes.

    You can’t put a cast on an autoimmune disease or “sew up” autism. Often at best it’s about throwing steroids at the situation to reduce the inflammation and then trying different things to treat the symptoms. Understanding the cause of many of these diseases/afflictions is years away.

    Without going into details, I live with a chronic, diagnosed, “there’s a specialist for this” disease. There is no cure. There is no real prognosis. It’s all guesswork and playing whack-a-mole with symptoms. I wish it was different.

    Luckily I have a specialist who understands what he can and can’t do with western medicine and is on top of all sorts of research into alternative solutions/understandings.

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    1. Hi Sandra! Can I ask a personal question? My husband has a chronic health issue as well (including hard to manage, never going away, pain), and I’m looking for resources for spouses. Do you know this book: Julie Silver’s Chronic Pain and the Family? Or do you have one you recommend?

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  3. There is research on how to deliver the pro-vaccine message (as well as to how to deliver messages on alcohol/drug use and diet, and exercise). We should listen to more of it, but it bangs up against another very strong impulse to blame.

    On the other hand, compassion in listening to the problems people face and understanding, can’t mean that we don’t consider the public health costs, and, when available use the tools we have to induce/compel people to comply. Persuading people to wear seat belts was a good thing, but the real changes in traffic deaths came when required people to wear seatbelts. In the vaccine world, I think that means stronger rules on vaccination for access to public schools and, in a growing trend, requirements on the parts of pediatricians to vaccinate to part of the practice. As a patient, and, especially when my children were babies, I’d support that decision in the medical practice I attend.

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  4. I have a child who reacts oddly to many medications. Doctors usually prescribe with the average child in mind. In their defense, they are overworked. For many conditions, lifestyle changes can be just as powerful as medication. Getting enough sleep, and cutting back on activities so that children can get enough sleep, can lead to better health.

    Celiac disease is more widely diagnosed in Europe. That makes sense, as it is more commonly found in non-hispanic whites.

    I wish the medical profession would not ascribe any condition they don’t understand or can’t diagnose to mental illness on the part of the patient. For example, Lyme disease is widespread in our area. I know several people who had to visit multiple doctors before they found one willing to test their blood for antigens to Lyme. There’s even a test for Lyme–yet some doctors don’t think of testing for it, especially if the patient is female.

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  5. Oops, I probably just posted something as anonymous.

    Regarding gluten-free diets and the such that they believe make them feel better — I don’t see any reason to take a public health position on those. I may remain agnostic (for example, I personally suspect that Hillenbrand’s illness is brain-based, from my understanding of her symptomology, but, I wouldn’t say that if I thought my saying it would be relevant to her), but I don’t see a reason to interfere with a choice that someone else is making for themselves or their children unless I see abuse (a high threshold) or a public health concern.

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  6. The first line lyme disease test (an ELISA that detects antibodies) has a fairly high rate of false positives. So there’s a reason that doctors don’t use that as a first line diagnostic with the generalized symptoms associated with Lyme disease. If it were indeed true that you could do a simple blood test and rule out Lyme disease, of course, doctors should do it. But there are medical reasons why they are reluctant to do the test.

    http://www.niaid.nih.gov/topics/lymedisease/research/pages/diagnostics.aspx

    We all did the calculation on false positives and it is one of those counterintuitive results, that a test with what seems to be a pretty low false positive rate will result in a lot of faulty diagnosis, especially when it is used generally on people who do not have the illness. I believe that’s why the ELISA test is not the standard of care for all people who present with symptoms of headaches, dizziness and joint pain — there should also be some indication of tick exposure.

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  7. A cousin-by-marriage homeschools her children. I’m pretty sure the primary reason for this is her vegan lifestyle. She and her husband are educated, but I do not think that they have positive feelings about their experiences in school. They opt out of many common lifestyle practices.

    There are children who cannot be vaccinated, due to health concerns. To deny school attendance to the children of parents who refuse to vaccinate due to their beliefs, yet allow other children to attend school because vaccination would threaten their health is not fair to the children, who do not control their parents.

    While it’s tempting to think that binding vaccination status to public school attendance, this does little to encourage vaccination, or public health. Unvaccinated children still go to Disneyworld, the grocery store, movie theaters. They travel abroad. They are clustering in communities which do not compel them to vaccinate. Such communities provide fuel for communicable diseases to spread.

    It would perhaps be better to tolerate vaccination levels falling from 97% to 96% overall, than to encourage the growth of clusters of 0% vaccination.

    At a certain point, people who opt out of one activity, will opt out of others. Punishing them for their beliefs makes them feel persecuted. They do not grow fonder of those they perceive to be their enemies. I worry that the attempt to shift the name-calling from “stupid” to “evil” will make matters worse.

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    1. Empirically — requiring vaccination for school attendance has a significant effect on compliance — everyone is citing the Mississippi example : requiring vaccinations for school has resulted in 99.7% compliance rates for measles (compared to 92% for CA and 82% for CO). So, although we could worry about exposure at Disneyland, if we can get vaccination rates high enough, the few remaining unvaccinated individuals won’t be a disease vector.

      I have no moral problem with allocating a scarce resource (the number of unvaccinated individuals before herd immunity is breached and vaccination becomes a public health problem) to those who need it for medical reasons.

      Ultimately, though, the theoretical issues you raise are relevant. If more restrictive laws actually increased the incidence of measles, then we would have to reconsider the approach. But, the current empirical evidence suggests that tightening the rules will increase vaccination rates and decrease the spread of disease.

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  8. Also, patients seem to really want a label associated with their illness, but the label is only useful to the doctor if it produces a different treatment option.

    Lyme disease matters as a diagnosis, because there are treatment options for it. Whether Hillenbrand’s illness is caused by a brain dysfunction (I think, form the description, that she had a stroke that caused chronic symptoms) or an immune system dysfunction, or a combination of both matters medically to determine what medications/treatment to give her (and, I believe she’s treating both).

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  9. This conversation is reminding me of the movie Safe. What is the role of psychosomaticism, if any, in all of this? There are a lot of people for whom the expression of their poor mental health is a physical ailment. Lyme disease is ripe for this kind misdiagnosis because it can present with symptoms all over the board so almost any ache or pain or ailment could be an indication of it. My sense with Lyme is that it is both very under diagnosed (there are a lot of people walking around who have it and don’t know it) and very over diagnosed (a lot of people who think they have it really don’t).

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    1. I think it’s not actually officially over-diagnosed, because I think the ELISA/Western Blot can diagnose an infection with decent accuracy (at least, infection with the Borrelia burgdorferi).

      http://www.cdc.gov/lyme/diagnosistesting/LabTest/TwoStep/

      I think we’re still stuck with the notion that if a symptom is caused by the brain it’s somehow not a real symptom (i.e. people should just will themselves to stop feeling it). But, there are lots of levels of symptoms that can be caused by the brain. Some of them might involve physiological changes that occur because of brain dysfunction (say, over production of stress hormones, as an example). The key is finding the effective treatment.

      I was fascinated when I first learned that the placebo effect (for pain) is not “all in your mind” — the placebo effect (i.e an intervention that causes people to get better because they expect to get better rather than through its direct action) causes physiological changes, including the release of pain-mitigating chemicals.

      We use words like psychosomatic and placebo broadly, and, in biology, they can mean different things.

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  10. “If we really want to increase the vaccination rates in this country. It is best for us all to not dismiss the anti-vaxxers as insane and selfish. It probably is best to understand where they are coming from.”

    You know, I worry that that horse has left the barn. If you read the coverage in the past few weeks and even a few of the comments, you’ll see that it’s open season on anyone – even those of us who do, in the end, fully vaccinate – that questions the safety of the current schedule at all. It’s doesn’t feel like a heated discussion within a civil society as much as a denunciation of the heretics. If the research is right and this kind of coverage makes people dig in further, the current “discussion” has set the fully-vaccinated cause back at least a few years.

    The Douthat piece is the first I’ve seen acknowledge that it’s not always crazy to question modern medicine and that non-vaccinating parents are probably not sitting around plotting against science, civilization, other people’s kids, and killing puppies for fun.

    School exemptions for vaccines are state law, not federal. I am not sure what would happen if states with lower vaccination rates attempted to pass a no-exceptions-for-school-enrollment rule – but whatever happens in Mississippi, I suspect it would backfire in states where connected and affluent parents are currently opting out. I agree with Cranberry that you’d drive many families into alternative schooling and end up with pockets of 0% compliance, which is much worse for everyone in terms of spreading of viruses.

    Really, I think the only way to increase the rates is for the CDC to play the long game, to listen carefully to concerns and address them. They need to reconsider a number of positions that hurt their credibility – the hysteria of the discourse (measles suck and can be fatal, yes, but no, not the same fatality rate as Ebola), the insistence that every vaccine possible MUST be given in infancy OR GRAVE DANGER, their insistence that the public health advantages of vaccines (considerable) outweigh the potential for individual harm so drastically that there is no need to acknowledge the individual harm or try to mitigate it.

    I also think that if our government was able to throw off the shackles of big food, big pharma, and big chemicals, it might be easier to sell vaccination. Parents are more and more aware of the prevalence of pesticides, herbicides, endocrine disruptors, and other toxic chemicals in our environment and can’t do much about it except buying organic and refusing vaccinations.

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    1. Let’s try this: – what exactly is your concern, and what would it take to address it? Comprehensively I mean. What would you need to see, or to see happen to convince you that following the CDC vaccination schedule is the only responsible course of action?

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  11. “I agree with Cranberry that you’d drive many families into alternative schooling and end up with pockets of 0% compliance, which is much worse for everyone in terms of spreading of viruses.”

    This is by no means a foregone conclusion — it depends on how isolated a population the 0% compliance group, and how big. In Pakistan, where large swathes of people have decided (not without justification) that vaccination campaigns are fronts for CIA operations 0% compliance is an issue.

    I don’t think it’s going to be in California, because I think we’ll reach heard immunity with the stick of public school attendance and community expectations. The uptick in vaccinations in CA speaks to this, actually. The concern that they might have to stay home from school if there’s an outbreak seems to have already had an effect.

    Those in favor of vaccination speaking from a medical point of view (and, I too think some of the media reports have been un-useful, so I’m not going to justify some of that rhetoric) do address the concerns you list. In particular, there’s an entire system set up to acknowledge the individual harm that can result from the need to vaccinate nearly everyone.

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  12. It is best for us all to not dismiss the anti-vaxxers as insane and selfish. It probably is best to understand where they are coming from.

    There. FTFY.

    In any case, I’ve come strongly to believe in the science. No, not the science about the public health benefits of vaccines. That was never in question, despite the best efforts of fraudster ex-docs and playboy bunnies. Rather, the studies that show that no matter how clearly and coherently you explain the science to the anti-vaxxers, they remain as, or more, recalcitrant. Sometimes you just have to concede that some people just aren’t going to get it.

    So what do you do? You reward those who buy into the public interest and you punish those who won’t. They don’t want to vaccinate? Fine. I’m a strong believer in the near-absolute right to a good education, but there is a social contract that you have to abide by if you want to benefit from it yourself. No vaccines, no school. No summer camps. No sports. Sports clubs and summer camps are mostly private institutions, of course, but if they allow the unvaccinated and there’s an outbreak then there has to be some liability assigned to include losing the potential lawsuits. Don’t want to vaccinate? Then keep yourself to yourself.

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  13. http://host.madison.com/wsj/news/local/health_med_fit/vaccine-exemption-rates-at-some-madison-area-schools-raise-concern/article_1fb11058-124c-5b6d-803a-a19df066e578.html

    the reasons given by our local anti-vaxxers are that they believe organic food and clean living will make their children be able to survive measles.

    In our city, the schools with the least amount of poverty/minorities have the lowest rates of vaccinations. I find that interesting. To generalize – In our little corner of the world, it is not the immigrants who aren’t vaccinating. It is the white liberals.

    Is there a link to the Atlantic article yet? 🙂

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  14. My kid is in a small liberal arts college where this winter 600 out of the 1200 students have contracted the flu. And yes, they gave the flu shot in the dorms — and strongly encouraged (did not mandate) kids to get one. I shudder to think what would have happened with some more serious disease.

    I think the commenter earlier in this thread is right: set up the conditions where an anti-vaxxer has to seriously think about the degree to which s/he is committed to those convictions. If, for example, every Ivy League or whatever you consider top notch (state flagship, etc.) college said — Get vaccinated or you can’t come here, I wonder what the compliance rates would be. How about a requirement that you can’t get Red Cross certification as a lifeguard or a babysitter? How about a rule that you can’t volunteer in a hospital (which would seem to only make sense)?

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  15. Perhaps the reason so many got the flu even though they may have had a flu shot is because the flu vaccine isn’t very useful in preventing the flu.

    1-4 adults out of 100 will get the flu if they have received a flu vaccination and 1-2 out of 100 will get the flu if they haven’t had a flu shot, depending on the year and how well the vaccine matches the virus.

    —–From an interview with Dr. Osterholm in the NYTimes in 2012:
    “We have overpromoted and overhyped this vaccine,” said Michael T. Osterholm, director of the Center for Infectious Disease Research and Policy, as well as its Center of Excellence for Influenza Research and Surveillance. “It does not protect as promoted. It’s all a sales job: it’s all public relations.”

    Dr. Osterholm, who says he is concerned that confidence in current vaccines deters research into identifying more effective agents, comes from the world of public health and the Centers for Disease Control and Prevention. A bioterrorism and public health preparedness adviser to Tommy Thompson, the former health and human services secretary, he served on the interim management team during a transition period at the C.D.C. in 2002.

    “I’m an insider,” Dr. Osterholm said. “Until we started this project, I was one of the people out there heavily promoting influenza vaccine use. It was only with this study that I looked and said, ‘What are we doing?’ ”

    —and another interview with Dr. Osterholm in 2013:

    Osterholm wants public health officials to be more frank with the public about the limitations of the flu vaccine.

    “What I worry about more than anything is the long-term credibility of science in public health,” he said. “Will people trust us if they don’t think that we’re being honest and forthright with the public data? Are we becoming nothing more than the anti-science people?”

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    1. 1-4 adults out of 100 will get the flu if they have received a flu vaccination and 1-2 out of 100 will get the flu if they haven’t had a flu shot, depending on the year and how well the vaccine matches the virus.

      I think you have those numbers reversed.

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  16. It was a bad year for the flu vaccine, 2014-2015 — only 23% vaccine effectiveness (VE) (meaning, a 23% reduction in risk). Lots of schools are feeling it, including my kids’.

    In 2013-2014, VE was closer to the historical value of 50% or so. But, it is indeed the case that people get the flu, even if they’ve been vaccinated. They’re just less likely to get it, and, in better vaccine years, this reduction has significant public health benefits (in 2014-2015, with a VE of 51%, the CDC estimated 90,000 fewer hospitalizations due to the flu).

    Like breastfeeding, though, it’s a public health benefit that shouldn’t be oversold. But, it is a public health benefit. And, I do agree that in talking about it, people should be clear about the protection it offers.

    And, from that same Osterholm interview,

    “He still considers himself a “a pro-vaccine guy,” Dr. Osterholm said.

    “I say, ‘Use this vaccine,’ ” he said. “The safety profile is actually quite good. But we have oversold it. Use it — but just know it’s not going to work nearly as well as everyone says.”

    (Oh, yeah, and everyone wash your hands)

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