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The “no compassion” gambit

As usual, I was impressed with Mark Crislip’s post on Friday in which he discussed the boundaries between science-based medicine and what we sometimes refer to as woo or what Mark often refers to as sCAM. It got me to thinking a bit, which is always a dangerous thing, particularly when such thinking leads to my writing something for my not-so-super-secret other blog (NSSSOB). Of course, this is not my NSSSOB, but that doesn’t make it that much less dangerous. Be that as it may, I started thinking about a gambit I started noticing a few years ago being directed at me by the targets of my logorrheic deconstructions. Actually, I noticed it from the very beginning, when I first started blogging about SBM versus quackery way back in 2004 and even before, back when I was one of a doughty band of pro-science types who waded into the Wild West of online forums known as Usenet, in particular the misc.health.alternative newsgroup.

I happen to be in Washington, DC as I write this. In fact, as I write this I’m here to attend the annual meeting of the American Association for Cancer Research (AACR), the better to soak in all that cancer science goodness and (hopefully) be pumped up to go back and keep trying to do good science and, hopefully, manage to get my lab funded. Of course, the latter task is a really daunting these days, a truly depressing thing to contemplate, given that the current payline for the National Cancer Institute is around the 7th percentile, which makes me worry about how much longer my lab will be open. My self pity aside, Mark got me to thinking about the characteristics of purveyors of non-science-based medicine (i.e., quackery and quackademic medicine) compared to SBM. More precisely, I started thinking about a difference that what Mark calls sCAMmers try to pin on those of us who try to defend SBM against the forces of pseudoscience. To introduce this concept, I think it’s worth going back a few years to a comment I got a long, long time ago on a blog far, far away (i.e., my NSSSOB):

When it comes to autism, you seem to have lost something that I think every physician is well-served to have in abundance: compassion.


This is such a common attack on me and any other physician who would argue against what we consider to be unscientific medicine and/or quackery that it is worth answering. The charge of being uncompassionate isn’t just a favorite gambit of antivaccinationists who believe that vaccines cause autism either, which is where that charge was first aimed at me. Indeed, it goes far beyond that. Does anyone remember the cases of Starchild Abraham Cherrix and Katie Wernecke, two teens who, along with their parents, chose quackery rather than conventional therapy such as chemotherapy or radiation therapy to fight their lymphomas? The same charges were thrown at me whenever I discussed these cases on my NSSSOB. Remember the case of the teen Jehovah’s Witness who died for want of a blood transfusion, all because of a bizarre and literal-minded interpretation of a single passage from Leviticus? Same thing, along with charges of religious intolerance. Then there was another case, namely Madeline Neumann, the 12 year old girl from Wisconsin who died because her parents thought that prayer would save her from diabetic ketoacidoses, when I supported taking the parents’ remaining children away from them and prosecuting them for their negligence? That’s right; it was the same. And don’t even get me started on the number of times I was attacked for not caring about the desperate patients with cancer who were sold a bill of goods by Stanislaw Burzynski.

Still, at least in my experience, from nowhere else is the charge of meanness, cold-heartedness, and lack of compassion shouted quite as vociferously and with as much venom as from antivaccinationists who believe that their children were made autistic by vaccines. Any criticism of their belief that either mercury from vaccines or vaccines themselves caused their children’s autism is viewed not as reasonable criticism, but as a direct and vicious attack on them personally. The person making the scientific criticisms or undertaking skeptical analysis of their claims is not just someone who disagrees with them, but an enemy to be destroyed. It doesn’t matter if the criticism is respectful or polite. It doesn’t matter if the criticism is nasty. The reaction tends to be the same, differing only somewhat in degree: Counterattack! The reason is obvious. Many of them honestly and deeply believe that vaccines “poisoned” their children and that their interventions are in the process of “curing” their children, one particularly famous antivaccinationist mother even to the point where she believes that she could make her son autistic again if she were to let up, feed him the wrong foods, or–God forbid!–vaccinate him. Attacks on their beliefs are viewed as direct attacks on them, whether they are or not. The same applies to many in the thrall of so-called “alternative” medicine. It also applies to those who have fallen for dubious cancer treatments, such as Stanislaw Burzynski’s unproven “antineoplaston” therapy, incompetently administered “personalized gene-targeted cancer therapy,” or his disingenuous and opportunistic co-optation of an orphan drug with at best modest and at worse no promise as an off-label prodrug for his antineoplaston therapy.

They misunderstand, of course.

I have nothing but the most enormous respect for parents who manage the incredible daily task of raising an autistic child–or any special needs child, for that matter–day in, day out, often with inadequate finances and difficulty obtaining insurance coverage, or even with no insurance coverage at all. It’s a huge challenge that I don’t necessarily know that I could meet were it to fall on me. No one knows if they can handle the job until they are thrust into that situation. Still, my compassion for the difficulties such parents face should not–must not–give them a free pass to spout antivaccinationist misinformation uncountered. The threat to public health is too great, and some of them count on that sympathy for them that reasonable people have in order to stay or blunt any criticism, sometimes seemingly waving it like a talisman in front of them to chase off evil skeptics like me.

Similarly, I feel nothing but sympathy and respect for parents (like, for instance, the parents of Amelia Saunders) dealing with a young child with an inoperable and almost certainly terminal cancer. Anyone who can’t understand why such parents, no matter how intelligent, skeptical, or savvy, might fall for the blandishments of someone like Burzynski doesn’t understand human nature. Anyone who tells himself that he wouldn’t be tempted to do the same thing that the Saunders did if they ever found themselves in the same situation as the Saunders family is fooling himself. I say it fairly frequently, and some people think it’s BS when I say it, but I assure you that it’s not. I don’t know how I would react if I found myself in the same situation as, for example, Hannah Bradley. Burzynski might start to sound tempting. Or, at least, he might have tempted a few years ago, back before I paid much attention to him and didn’t know the full depths of his abuse of clinical trials, patients, and clinical science.

So why am I so passionate against antivaccinationism and other forms of quackery, particularly cancer quackery?

It’s compassion for the victims, which far outweighs my feelings about the parents. Think about it. In the case of cancer quackery, even patients who can’t be saved by conventional medicine become victims. Patients who, for example, are seduced by the blandishments of quacks to undergo the Gonzalez protocol, with its coffee enemas and hundreds of supplement pills a day, often do so at the expense of foregoing effective palliative care in order to undergo a harsh regimen that robs them of what little quality of life they might achieve in the time they have left. Children and teens who choose quackery such as the Hoxsey therapy or high dose vitamin C instead of effective chemotherapy, children like Abraham Cherrix and Katie Wernecke, give up a reasonable chance of a cure and living to a ripe old age. Children whose parents believe that prayer is more effective than medicine in treating life-threatening diseases die when they could have been saved. Children of HIV-infected mothers who don’t believe that HIV causes AIDS die of AIDS-related complications when combination antiretroviral therapy could have prevented their deaths, as do potentially millions of people in Africa. Autistic children whose parents believe that they were made autistic by vaccines are subjected to injections, restrictive diets, hyperbaric oxygen, blood draws, and even chemical castration. Children are subjected to unethical and scientifically worthless “clinical trials” in the service of pseudoscience. Some even die because of these nostrums. Many more will die if antivaccinationists get their way and vaccination rates fall to the point where herd immunity is no longer operative. Indeed, we see a disturbing glimpse of what might be in the resurgence of measles and mumps in the U.K. due to Andrew Wakefield’s litigation-driven pseudoscience.

Don’t all these people deserve compassion, too?

I say yes! It is my compassion for them that drives me and my disgust at how they are taken advantage of by promises that no human can keep. As I have argued here and elsewhere many times, science- and evidence-based medicine are the best methods that we have to determine what causes disease and how to treat it. Whatever its faults (and there are many), science- and evidence-based medicine are at least constrained by law, ethics, and, of course, science itself to restrain the natural human impulse to promise more than can be delivered. When the shortcomings of SBM are revealed, I assure you, it’s almost never pseudoscientists and “brave maverick” doctors who think that they know better than scientific medicine who bring such shortcomings and ethical lapses to light. It’s medical scientists, ethicists, and, yes, sometimes reporters, who shine the light of reason, ethics, and science into the darkness. It’s often forgotten because of his brilliant investigations into antivaccine guru Andrew Wakefield’s research wrongdoings that Brian Deer, for instance, turned his formidable skills on big pharma before he became interested in Wakefield and beyond.

Besides, if we’re going to play the compassion game, I’ll match my compassion with those of the practitioners who inflict this quackery on desperate patients and parents. How much do Mark and David Geier charge for administering Lupron to autistic children? You can be sure it’s not cheap. What about Dr. Roy Kerry, whose quackery and incompetence killed a five year old child several years ago? You can bet he didn’t do it for free, and let’s not forget the horror of the description of that child’s final hours, as he was held down and stuck multiple times to get an IV going, having been subjected to unnecessary IV infusions many times before. Then there’s Dr. Rashid Buttar, who charged dying cancer patients tens of thousands of dollars while leaving their care primarily in the hands of a nurse-practitioner, with himself rarely to be found. He even tried to collect money from the estates of his deceased patients, thus surpassing even Stanislaw Burzynski.

I could also ask: What about compassion towards the victim of Dr. Roy Kerry’s quackery, for example? Here’s an example in which a woman named Jan responded to the observation that chelation therapy killed Tariq Nadama:

We shall wait and see, and if it did, it happens, as with all procedures.

Imagine, if you will (apologies to Rod Serling) if I tried to defend an iatrogenic complication or death that occurred while a patient was undergoing “conventional therapy” with such a blasé riposte.  You can bet that Jan, and others like her, would be outraged. Now compare Jan’s reaction to Tariq’s death with her reaction to the death of Jesse Gelsinger, the 18 year old who died from complications due to the administration of an adenoviral vector while participating in a gene therapy trial in 1999:

Isn’t that most strange,,,,,,,,,,,,,,,,,,,,

This health fraud that KILLED a volunteering, caring, loving teenager, helping mankind, and the doctor who KILLED him who committed, FRUAD, COVER UPS, FALSE AND MISLEADING *REPEATED* AND *DELIBERATE* VIOLATIONS,,,,,,,,,,,,,,,,,,,, ,,,,remains on staff.

I detest either outcome: Death from quackery or death due to a clinical trial design that wasn’t as safe as its subjects were led to believe in the informed consent discussions. That’s why the efforts of pseudoscientists to get their trials approved by dubious IRBs packed with cronies and friends outrage me so. If they can get away with it, then big pharma can get away with it too. Think of Stanislaw Burzynski again. He portrays himself as being “compassionate” and caring, but how compassionate and caring is he really? He charges his patients tens of thousands of dollars to enroll in trials for his unproven chemotherapy drug, which he calls “antineoplastons.” Yes, he doesn’t actually charge for the antineoplastons, but his “case management” fee is often several thousand dollars a month.

The “lack of compassion” gambit is nothing more than a variant of the “mean skeptic” gambit. It’s a gambit that’s frequently used against scientists who argue against other forms of non-medical pseudoscience, such as “intelligent design” creationism, but it is a particularly potent gambit in medicine, because there is virtually always a suffering patient at the receiving end of the pseudoscience who thinks (or whose relatives or parents think) it will really, really help. Attacks on the pseudoscience can thus lead to the perception that the skeptic wants patients to suffer and does not want them to be “healed.” (Never mind that, as far as science can tell, no one is actually being “healed.”) In reality, what the “compassion gambit” is really designed to do is to neuter any criticism. Skeptics hesitate because they do not want to be perceived as ganging up or being unduly harsh on people who may be truly suffering and/or desperate, who may truly believe that the woo under criticism is the only chance for them or their children. Even though I try to reserve my harshest attacks and sarcasm for people who have demonstrated time and time again that they support pseudoscience and quackery and that they are virtually uneducable, I can’t always parry that attack. It’s a “heads I win, tails you lose” game. If as a skeptic I hold my fire or give undue respect to ideas that do not deserve it out of fear of being perceived as being too harsh on patients who pursue dubious treatments or even outright quackery, pseudoscience is granted an undeserved patina of respectability, as though it really is a viable alternative to scientific medicine. If as a skeptic I am too harsh, I am accused of having “no compassion” for the suffering who turn to woo.

The way out I have chosen, which may or may not be the best way out, is not to play the game. I may not always match the vociferousness of my attack perfectly to the level of the offense against science and reason, and hopefully I will usually recognize when or if I have “gone too far.” Either way, I will not allow the charge of not being sufficiently compassionate (in reality, not showing what supporters of alternative medicine deem to be sufficient deference to pseudoscience) stop me. The victims of quackery deserve no less, and the quacks themselves deserve no such deference.

Posted in: Cancer, Health Fraud, Public Health, Science and the Media, Vaccines

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