The price of anti-vaccine fanaticism

Welcome back. I hope you and yours who celebrate Christmas have had a happy one. Ours was kind of mixed and bittersweet for reasons that I don’t particularly feel like going into now, although sooner or later I will probably have to say something about it. In the meantime, as much as I hate to be a downer right after the holidays, when many of my readers have the day off and are looking forward to hanging out with family or friends or maybe attacking the Boxing Day sales in the U.K. or just the sales in the U.S. and elsewhere. However, just before the holidays and shortly before I gave a certain neurosurgeon the gift of not-so-Respectful Insolence for Christmas.

It came from the Age of Autism.

I know, I know, I’ve said before that I try to avoid that site these days, and I do. There is nothing there other than pseudoscience, logical fallacies, and conspiracy theories about big pharma, usually laced with ad hominem attacks against skeptical and science-based bloggers like myself accompanied by whining about how the critics of the antivaccine movement are so unfair in making ad hominem attacks against the bloggers at AoA. (Never mind that the attacks usually aren’t ad hominem; they’re about what the AoA crew writes and how lacking in reason and evidence it is, and only sometimes about the bloggers themselves. Never mind that an ad hominem can be justified if the target’s behavior warrants the ad hominem.) It all becomes tiresome after a while, and it rarely manages to appall me any more as it did in the past. I must have grown a thick skin. Even when J.B. Handley launches a childish, all out broadside, it doesn’t even faze me anymore.

And then I saw a post by the ever-excitable and clueless Kent Heckenlively, he who makes bizarre speculations about autism science while clearly understanding nothing about it. The post is entitled I Officially Join the Mercury Militia, and it is the most horrifying thing I’ve seen on AoA. In fact, it’s the most horrifying story of autism quackery that I’ve seen since the death of Tariq Nadama at the hands of a chelationist. All I could think as I read the post is how sorry I felt for Mr. Heckenlively’s autistic daughter, whom he has subjected to all manner of quackery in the pursuit of his belief that she is “mercury toxic” and that is the cause of her autism. It also shows just how far down the rabbit hole it’s possible for an otherwise intelligent person to go when that person is ignorant of science and fixates on one idea after another about what causes autism. The post begins with some background:

It may seem strange that six years after I started in the bio-medical world, beginning with the gluten/casein free diet for my daughter, and encompassing just about every other known treatment, that I’d questioned whether mercury played any role in her problems.

The reason was I simply didn’t have any good proof of high mercury levels in her, despite more than three years of chelation, and forty-two UTM tests from Doctors Data. I did have abundant evidence of aluminum retention. She usually averaged somewhere between eight and thirteen times the normal amount of aluminum excretion, and in one test, after we’d gone after strep, excreted eighty-one times the normal amount of aluminum.

Forty-two urine tests from Doctors Data? For those of you not familiar with this laboratory, it is one of the favored laboratory of dubious practitioners everywhere because of its lax methodology and tendency to find high levels of mercury and other heavy metals in just about sample, as well as its tendency to participate in chelation-provoked urine testing for mercury, which is guaranteed to cause the excretion of a lot of mercury in a normal person. As for the aluminum, where on earth did he think his daughter may have gotten exposed to so much aluminum, even if Doctors Data’s results were accurate? Certainly the amount in vaccines is far too small to have caused such a seemingly huge aluminum overload. After all, it sounds as though Mr. Heckenlively was subjecting his daughter to chelation-provoked tests, and mercury is not the only metal chelated and excreted in the urine. Several are, and will appear elevated after a course of chelation. It’s the same problem as with mercury. Provoked urine tests for heavy metals give us no information about what’s really going on because they’re an exceedingly artificial test and, well, provoked.

What I wonder, though, is just how much did all those tests cost? Worse, despite all this search:

I was comfortable with aluminum as the reason for her problems because of the data, but also unsettled. Despite getting out huge amounts of aluminum she didn’t get noticeably better. I’d observed that accounts of kids getting better after mercury excretion usually involved somewhere between three to four times the normal amounts of mercury being excreted from their bodies and measured in the urine toxic metals tests. Even her most extreme test, when everything else was coming out, never even made it to twice the normal amount.

In other words, despite all that chelation therapy, Mr. Heckenlively’s daughter has not improved. However, she was subjected to a large number (at least 42, if in fact a urine metals assay was done after each chelation session) of repetitions of a useless treatment followed by an uninformative test. Worse, the treatment is not risk-free. Although I don’t know what specific chelation regimen Mr. Heckenlively subjected his daughter to, chelation can kill.

Mr. Heckenlively then says that this failure “raised a number of questions for me.” Unfortunately, apparently not a single one of the questions raised was whether he was following useless quackery and should stop subjecting his daughter to such treatments before he goes too far off the reservation and really endangers her. Indeed, Mr. Heckenlively’s questions were exactly the wrong questions in a reality-based world. Unfortunately, in the fantasy world of quackery into which he had immersed himself and his daughter, the questions made sense to him:

Did girls simply retain aluminum rather than mercury as the boys seemed to do? Did the aluminum do greater damage than the mercury? Were there still vast amounts of mercury in my daughter, that for some reason I simply couldn’t get her to excrete? The answers to these questions are vital because each one requires a different approach.

If my daughter was an aluminum kid, rather than a mercury kid, then something else had to be at work. When other children excreted high levels of mercury, they generally got better. Jacqueline’s levels of aluminum dropped to roughly normal levels by the summer of 2008, but there wasn’t a change.

Again, Mr. Heckenlively kept pushing the chelation therapy, and there was still no improvement. Years of quackery and dozens of chelation treatments with no improvement. Did Mr. Heckenlively start to doubt the quackery? Not at all. True, he did start to doubt whether it was aluminum or mercury, but unfortunately he did not move back into science-based medicine. Instead, he went even further down the rabbit hole into even less evidence-based (and far more expensive) quackery. If it wasn’t the mercury and the aluminum, Mr. Heckenlively decided that stem cells must be the answer:

That finding made me consider brain damage. Maybe she was simply damaged. How might you fix that? Stem cells were my answer. (Cost of $15,500 for treatment courtesy of a grant from her Grandpa Heckenlively.) In August of 2008 we traveled to Costa Rica for four days so my daughter could receive 16 million stem cells, eight million through an infusion in her arm, and eight million infused through a line in her spine so it would have direct access to her brain.

But two months after stem cells there wasn’t a change. I was counseled to wait for more time to pass. My regular autism doctor was also counseling me that at some time the mercury would come out. But I’d been waiting more than three years to see mercury and my daughter wasn’t getting any younger.

This part of the story is what I find most appalling and heartbreaking. Mr. Heckenlively subjected his daughter to stem cell quackery. Yes, quackery, so much so that Suzanne Somers endorses various stem cell “cures.” So not only did Mr. Heckenlively hit his daughter’s grandpa up for over $15,000, but he did it for a completely unproven and almost certainly useless treatment. Worse, given the dubious nature of the offshore clinics that serve up this stem cell quackery, there’s no guarantee that what these quacks infused into Mr. Heckenlively’s daughter were even real stem cells. In fact, very likely they were not. Not only is Mr. Heckenlively spending his own family’s resources, but he’s spending the retirement fund of his daughter’s grandfather.

Even more appalling, these quacks injected the stem cells directly into Mr. Heckenlively’s daughter’s cerebrospinal fluid. That’s right. Let me say that again. They did a lumbar puncture in order to inject these “stem cells” directly into his daughter’s cerebrospinal fluid! Remember, this being a clinic in Costa Rica, these cells were of unknown origin and purity. There are no words to describe how appalling I find that. The potential complications are enormous, and for any physician to do this outside the context of a well-designed clinical trial overseen by a properly constituted Institutional Review Board (not a Geier IRB) is utterly unethical. That these quacks would not only do this but take advantage of credulous and desperate parents like Mr. Heckenlively to sell their therapy should shock and horrify anyone with any common sense, much less with a modicum of knowledge about science and medicine. This is the real harm of the antivaccine movement and autism quackery. I understand desperation, but desperation and credulity have made Mr. Heckenlively vulnerable to the blandishment of just about any quack with an autism “therapy” to peddle. His desperation and credulity have led him to endanger his daughter. Worse, never does it seem to occur to him just to accept his daughter the way she is and stop subjecting her to IVs and invasive procedures like lumbar punctures for no benefit. Instead, he moves on to a new quackery, one I call the Magical Mystery Virus:

It was at this point I ran into a doctor who told me these children were infected with viruses that hid from the immune system and lowered cellular energy. And he had a treatment. Illumination with UV light and his magical mystery formula put onto a plastic sheet would activate an alternative energy pathway which would go after the viruses. But of course, he wasn’t a big believer that heavy metals formed any part of the autism problem.

I did the treatment and started seeing changes. Specifically, she’s had about a 50-75% drop in seizures, and started to gain in physical strength. This was shown most dramatically in her ability to hold a marker and do some coloring. I’ve included two of her pictures so you can see the difference.

“Alternative energy pathway”? More like voodoo. If Mr. Heckenlively had a single clue about biology, he would know that “lowering cellular energy” and “alternative energy pathways” are almost always quackspeak. What does it mean for an “alternative energy pathway” to “go after” the (nonexistent) viruses. Nothing! It means nothing! But it sounds all science-y, good enough to suck in parents like Mr. Heckenlively.

This incident also illustrates a principle of autism quackery. Because autism is a condition of developmental delay, not stasis, and because it frequently has periods of stasis followed by periods of rapid development followed by periods of stasis again, if a parent tries enough quackery, sooner or later by coincidence alone he or she will be seem to be able to match up a remedy with an apparent improvement. That is likely what occurred in this case. Even if it is not, because of the highly variable course of autism, it’s impossible to say if this magical mystery treatment did anything without a randomized clinical trial. Still, even then Mr. Heckenlively was not satisfied. He moved on, back to mercury, and, after forty-three tests, he finally got what he wanted: a finding of elevated mercury. In fact, this is a similar principle. Because of the variability in tests and because the reference ranges are set to encompass 95% of the population (at least in real labs; in dubious labs like Doctors Data, I don’t know), if you do enough tests, sooner or later an anomaly will occur, particularly if multiple values are measured in each test. That’s one of the first things I like to teach medical students on the wards. Panels of lab values, in which 7 or 13 or even 20 different things are measured may be convenient for the lab, but the more of them there are the more likely there will be an abnormality or two, even in a “normal” patient.

The important question, however is: Is Mr. Heckenlively’s daughter any better? Not really. But because he so desperately wants to believe in what he is doing, Mr. Heckenlively remains undeterred:

Maybe after more than four months the stem cells are starting to kick in. Maybe she’s got more cellular energy and it’s causing the mercury to be excreted. Maybe after three years of chelation we’ve drained enough of the swamp that the mercury is finally coming out. I have my opinions about which one is really at work, but I don’t have a definitive answer. As you can probably guess, I’m running an additional test to confirm the results. (There is a 1 in 43 chance this is a coincidence, although the cadmium and nickel excretions are similarly high, and they usually increase shortly before or in combination with mercury excretion.)

“More cellular energy” causing the mercury to be excreted? It hurts me to read that sentence not so much because of the wishful thinking that is behind it but because of what that wishful thinking is causing a young girl who doesn’t know any better and depends upon her parents to give her the best treatments possible to be subjected to. Does anyone doubt that Mr. Heckenlively will continue in his quest indefinitely flitting from one quack to another looking for an answer? Sadly, I don’t. Does this mean that Mr. Heckenlively is stupid? I don’t think so. Ignorant of science? Yes? Stupid, probably not. Desperate? It would appear so. I like to look at this sort of behavior as the same phenomenon that we see when we see highly intelligent people believe in fundamentalist religion or creationism. The mercury militia (and, indeed, the antivaccine movement of which the mercury militia is a subgroup) to which Mr. Heckenlively proudly proclaims membership has indeed become like a religion–more like a cult, in fact. It attracts parents desperate to need to believe that there is a cure for autism and willing to pursue it at almost any cost and, worse, it seems every bit as capable of coopting intelligence in pursuit of doctrine and of convincing parents that pseudoscience and even outright magical thinking (the Magical Mystery Virus, for instance) are science.

I do try to empathize with Mr. Heckenlively. He has an autistic daughter, and raising such a child is a huge challenge. I don’t know if I could handle it myself. It’s quite possible that I cannot. I also have no doubt that he really and truly wants to help his daughter. Unfortunately, he has no understanding of science or medicine and is clearly a credulous soul, easily persuaded of the value of the quackery du jour. Never does it occur to him that his daughter is not getting better because she is not mercury toxic; she is not brain damaged, and stem cells wouldn’t repair that “damage” even if she were; that she is not infected with some magical mystery virus. In the meantime, he subjects his daughter to round after round of chelation and even invasive procedures such as a lumbar puncture to inject cells of unknown origin (I highly doubt they’re real stem cells), spending thousands upon thousands of dollars in the process, even going after the grandparents’ savings in the process. Both he and his daughters are victims of quackery, and I have sympathy for them both, although far more for his daughter. Mr. Heckenlively is being taken advantage of. His normal parental love for his daughter is being twisted into a useless and expensive search or a “cure” that doesn’t currently exist and is unlikely to come into existence in our lifetimes.

But you know what’s worse. Look at the comments after Mr. Heckenlively’s ode to autism quackery. Not only is he wasting his money and risking harm to his daughter for no benefit; he’s influencing others to do the same. That’s where my sympathy for him ends.

ADDENDUM: The Bad Science Forum has picked up on this.