I’ve spent the last three weeks writing about a “brave maverick doctor” by the name of Stanislaw Burzynski who claims that he can cure cancers that regular oncologists cannot. He uses a combination of what he calls “antineoplastons” (which, it turns out, are more or less than the active metabolites of an orphan drug known as sodium phenylbutyrate) plus a very expensive cocktail of chemotherapy and targeted agents chosen in a haphazard fashion and thrown together with little rhyme or reason. This week, I had planned to move on. However, I felt that I had to mention the Burzynski saga because it provides me with the most appropriate segue to a topic I’ve been meaning to write about for a long time, possibly since this blog began. In fact, it’s about as perfect a framework as I can think of upon which to drape the points I want to make in this post.
What I will discuss is perhaps the most effective, devastating attack that proponents of quackery, woo, and nonsense aim at supporters of science-based medicine (SBM). As far as that is the case, it is not effective because it’s fact-based, evidence-based, or science-based. Far from it. Rather, it’s effective because it appeals to the emotions and very effectively demonizes SBM proponents to the point where they often have a hard time standing their ground when it is used. Sometimes, it preemptively prevents them from even speaking up in the first place. It’s a little tactic that I like to call the “compassion gambit,” which means trying to discredit critics of “alternative” medicine by painting them as cold, unfeeling, uncaring, arrogant monsters who want to hurt or kill children (and probably get a big smile on their faces when they torture puppies, to boot).
“Compassion” and the anti-vaccine movement
I first noticed this particular gambit as a distinct entity about three years ago, after I first wrote about the execrable “monkey business” study promoted by Laura Hewitson and Andrew Wakefield as “evidence” that thimerosal results in serious problems during development. The study, as I originally pointed out and then subsequently re-emphasized, was, scientifically speaking, a pair of fetid dingo’s kidneys, something I felt obligated to point out (not to mention obligated to explain why) because anti-vaccination activists were promoting the study as though it were smoking gun evidence that thimerosal-containing vaccines cause autism. They don’t, of course. In any case, around about that time I made the mistake of letting myself get into an e-mail exchange with a prominent anti-vaccine propagandist who shall remain nameless. Not surprisingly, the logical fallacies were flying at me fast and furious, as was, of course, a heapin’ helpin’ of the pharma shill gambit. This mass of logical fallacies was all topped off with this:
When it comes to autism, you seem to have lost something that I think every physician is well-served to have in abundance: compassion.
And there you have it, the distillation of the compassion gambit: the attempt to discredit an argument by arguing that the person making the argument is cold and heartless. In other words, it’s a form of the ad hominem fallacy, combined, of course, with a bit of non sequitur. After all, even if the person making an argument were actually cold and heartless, it doesn’t follow that his argument is incorrect.
In my experience, from nowhere else is the charge of meanness, cold-heartedness, and lack of compassion shouted at SBM proponents quite as vociferously and with as much venom as from antivaccinationists. Any criticism of their assertions that either mercury from vaccines or vaccines themselves caused their child’s autism is viewed not as a counterargument, but rather as a personal attack on them. The reason is obvious: many of them honestly and deeply believe that vaccines “poisoned” their children 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.
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—and individual children put at risk from diseases unnecessarily—is too great. Moreover, the use of the compassion gambit is often quite intentional. Many anti-vaccine activists count on the sympathy that their struggles to raise their autistic child evoke from reasonable and compassionate people blunt any criticism, all too often waving that plea for sympathy like a talisman in front of them to shame evil skeptics like me into silence. In this they are not alone.
The “alternative” medicine cancer cure industry: Using compassion as a fundraising tool
It’s not just those who speak out against the anti-science of the anti-vaccine movement who wield the “compassion gambit” against their foes. Not surprisingly, after my posts on Dr. Burzynski’s cancer cure claims, I got a couple of e-mails from his fans accusing me of the same thing, an utter lack of compassion for children dying of cancer. These sorts of complaints basically boil down to demanding of me, “How can you crush this desperate patient’s last hope, you uncaring, heartless monster?” It’s as if the people writing such screeds honestly believe that I revel in telling people with cancer (or the parents of a child with cancer) that there is nothing that can be done and that they are going to die. Or that I somehow get off on telling people with cancer going to the Burzynski Clinic that he can’t help them. One wonders whether people who write such things picture me twirling my mustache as I tie a young maiden up on the railroad tracks, as anti-vaccinationists apparently picture SBM proponents as preferring baby as the main course for their Thanksgiving feasts. Of course, they forget that, although fortunately I rarely have to do this anymore given my cancer specialty, I have indeed had to tell a depressing number of patients that they had a horrible cancer for which there was very little that medicine could do for them. I’ve watched patients and family members die of cancer, sometimes in horrible ways.
In any case, the compassion gambit is such a common attack on me and any other physician who would argue against woo that it is worth answering. The reason I decided to write about this phenomenon this week is because Dr. Burzynski appears, at least in part, to count on the compassion of strangers to fund his clinic. Indeed, through his minions, shills, and fans, Burzynski appears to quite intentionally portray his critics as standing between his patients and a cure for their cancer.
As you probably recall, what first drew my attention (and that of many other bloggers) to Dr. Burzynski’s dubious practices was the habit of his patients (apparently with his encouragement) to set up charitable funds to ask for donations to pay for their treatment at the Burzynski Clinic. For instance, the first case of this sort of fundraising appeal that I heard about was that of Rene Louis, who formed the I Promise campaign, first to try to fund her trip to the Burzynski Clinic to treat her thyroid cancer, then later to fund other cancer patients’ search for cures. This year, there was the case of Billie Bainbridge, a four-year-old British child with an inoperable brain tumor whose parents wanted to take her to the Burzynski Clinic. To fund this trip, Billie’s family took to fundraising on the Internet and elsewhere, ultimately managing to attract the attention of U.K. performer Peter Kay who did two sold-out charity concerts to raise £200,000. Billie’s story and the story of Kay’s concerts were told in an incredibly credulous article in which almost never was heard a discouraging word about Dr. Burzynski, whose claims were barely questioned—and then only as an afterthought. In response to criticism, the editors of the paper were completely clueless as to why their article was so heavily criticized. What also happened, besides a UK newspaper behaving irresponsibly, is that bloggers criticized the credulous coverage of the Billie Bainbridge story, the result was its PR flack named Marc Stephens issuing legal threats to critical bloggers, a move that spectacularly backfired.
You’d think that UK newspapers would have learned a thing or two about their coverage of this story, but you’d be wrong. Not long after the blogospheric kerfuffle that erupted over the Billie Bainbridge story and Marc Stephens’ ham-handed attempts to silence criticism of the Burzynski Clinic, I saw this story from the U.K. in which another family of a girl with an inoperable brain tumor was trying to follow in Billie Bainbridget’s footsteps:
The family of a five-year-old girl with a rare form of brain cancer are hoping to raise £130,000 to send her to a US clinic which could be the only chance of saving her life.
Chiane Cloete’s family in Enfield want her to be treated at the Burzynski Clinic in Texas after she was diagnosed with a highly aggressive form of cancer.
The clinic’s course of treatment, which aims to “switch on” the genes responsible for cancer suppression, is not available in Britain. Her father, Chris, a company director, stepped aside from his role this year to help her mother Andia look after their girl. The couple also have a two-year-old son Estian.
She is being treated at Great Ormond Street Hospital where an MRI scan next Thursday will see whether the cancer is spreading and if she is fit to fly.
Mr Cloete said the discovery of the cancer meant the family’s “whole world was turned upside down in a matter of seconds”, adding: “She is like any normal child. We are just a normal family, looking after her is so intense and takes up so much time. She is so brave for her age and a fighter. I have no doubt we will get the funds needed. The snowball effect is starting to take an effect.”
Chiane’s family is taking a similar approach to that of the Bainbridge family in that they’ve set up a website (Help Me Fight Cancer) that advertises fundraising events, Chiane’s Diary, and, of course, the appeal for funding for the Burzynski Clinic:
I need your Help to fight my Brain Cancer”
We desperately need to raise £130,000 for Chiane. We have to take Chiane to the Burzynski clinic in Texas (USA) for Innovative and pioneered cutting-edge Personalised Gene Targeted Cancer Therapy that is customised specifically for her.
The £130,000.00 covers her treatment costs ONLY. We did not include any costs or expenditure such as traveling, accommodation etc. to the States.
For more information please visit www.burzynskiclinic.com
Whenever I start getting too cynical about human nature, I think of all the people who are more than happy—eager, even—to send money children like Billie and Chiane, children whom they don’t know. I get a warm, fuzzy feeling inside; that is, until I think about the purpose for which the money is being raised, namely to pay for an overpriced, incompetently designed, unproven therapy that is incredibly unlikely to benefit the child. It’s horrible to contemplate the death of a child due to a disease as devastating as the brain cancers causing these children’s suffering, just as it’s profoundly saddening to consider the pain their families endure as these children become more and more ill, deteriorate, and ultimately die. Who wouldn’t want to do anything in his or her power to try to help these girls to live to a ripe old age? I understand. I understand why parents would go to such lengths and why they would be so susceptible to the promises of someone like Dr. Burzynski. Really, I do. I can’t even be sure that, if I had a child with a deadly tumor and were in the position of some of these parents, I wouldn’t be immune to the siren song of the claims made by someone like Burzynski, who takes on the trappings of science in the name of his “alternative therapy” but delivers bad science, bad medicine, and unproven therapies. Only my background in cancer surgery and oncology would have been likely to protect me, and most parents don’t have that.
Unfortunately, although what Dr. Burzynski is selling is hope, it’s a false hope that glimmers no more brightly than the hope offered by conventional therapies. Certainly he’s never been able to demonstrate that his results are any better than any other cancer center, and, as has been pointed out, patients he promotes as being success stories very frequently turn out, when someone follows up on them later, to be nothing of the sort. Often they turn out to be dead of their cancers.
Dr. Burzynski’s stock in trade, as far as evidence goes, is anecdotes and case series without control groups subject to major confounders and selection bias, all wrapped in a patina of science-y sounding gobbledygook designed to mimic what real oncologists and real science do. He keeps numerous clinical trials open to allow him to administer his unproven antineoplastons as part of a clinical trial but never seems to be able to progress to phase III trials or to publish his clinical trial in halfway respectable journals. Unfortunately, although Dr. Burzynski is a good mimic and very talented at portraying the “brave maverick doctor,” he’s not so good at actually doing oncology. As I have shown before, he uses the results of a commercial test that does nothing better that what a lot of other cancer centers do and produces recommendations that are facile and whose applicability to the tumor being tested ranges from the painfully obvious without the test to the highly questionable to come up with cocktails of chemotherapy and targeted therapies without regard to potential interactions. Then, of course, he throws antineoplastons—excuse me, phenylbutyrate—into the mix. The result is a gmish of up to six or seven drugs thrown together without consideration of potential drug interactions, the likelihood of which rises markedly with each new drug added to the cocktail. Worse, Dr. Burzynski tells the press and his patients that he is not giving chemotherapy when, in fact, he gives lots and lots of chemotherapy in a non-evidence-based manner.
It is not my intention or desire to crush the hope of such families. It is, however, my intention to put Dr. Burzynski’s claims in context for them, so that they understand what they are getting into and that Dr. Burzynski is not a savior. He isn’t even a good doctor, in my opinion, and he’s certainly not a good scientist. Parents need to realize that in reality their children are no more likely to survive due to Dr. Burzynski’s ministrations than they are if they just stick with their current oncologists. It might sound cruel to say so, but I would argue that it’s far more cruel to hold out false hope at a price of hundreds of thousands of dollars, which is what Dr. Burzynski does. It’s what Rashid Buttar used to do before the state of North Carolina limited his ability to treat cancer patients. It’s what innumerable “alternative medicine” clinics in Tijuana do. It’s the very epitome of “misinformed consent,” in which they are given a far more optimistic assessment than reality would warrant. Worse, if parents find a way to raise the money necessary and then spend it at the Burzynski Clinic, they’ll squander the short time they have left with their children subjecting them to Dr. Burzynski’s cocktails. In the end they’ll still have a dead child, but if they save the money and focus on good palliative care they can at least maximize their quality time remaining with their children. More importantly, the child will suffer less.
There’s another aspect about Dr. Burzynski that is disturbing. I had been thinking along these lines, although not as starkly, but wondered whether I should bring up the issue. I’m not entirely sure I agree with this viewpoint, but it’s something that is worth at least discussing. A few days ago, Ministry of Truth published a post, Burzynski – Conscience and Complicity. In it, he argues that, as bad as we feel for the parents of these children, it helps no one if we in essence “give them a pass” when, after falling for Dr. Burzynski’s patter, they promote his clinic and use their stories to raise money that goes to him. First, he notes something that’s painfully obvious to anyone who’s looked at Dr. Burzynski’s history over the last three decades:
For as much as I understand and accept the validity of the reasons given for taking a softly, softly approach with Burzynski’s patients and their families, the problem I have with it is it that it too readily fails to illuminate what is one of the most, if the most, despicable facets of the Burzynski Clinic’s business model.
By preying on people who are genuinely in a desperate situation and charging them huge sums of money to join one of the never-ending series of so-called clinical trials, the overwhelming majority of which fail to report any kind of results, Burzynski not only scalps these people for tens, and even hundreds of thousands of pounds/dollars but, in some (many?) case he also compels them to serve as his accomplices and even, when the critics begin to circle, as his own human shields.
This strikes me as the most despicable aspect of the Burzynski business model. Over the years, he has encouraged, if not outright built up, a cult of personality around himself, in which he is portrayed as the one doctor who can cure incurable cancers but, for all his efforts, is rejected and “persecuted” by the medical establishment when all he is trying to do is good. Any criticism directed against him inevitably results in patients and families coming out of the woodwork to extoll the virtues of this “brave maverick doctor” and proclaim him as the man who is saving their lives or the lives of their loved ones. It’s a strategy that, at times, has worked brilliantly, as demonstrated in the numerous scenes of patients in the incompetently produced propaganda piece Burzynski The Movie castigating lawmakers, the FDA, and the Texas Medical Board for going after Burzynski, telling heart-wrenching stories and proclaiming that they will die if Burzynski is shut down. It’s an incredibly potent P.R. weapon, and one that Burzynski is not in the least bit shy about using, as you can see in this video and Burzynski The Movie, which featured long, manipulative minutes of patients telling Burzynski critics, the Texas Medical Board and various regulators and legislators that if his clinic is shut down they will die. Burzynski counts on the media, full of sympathy for these families, not looking too closely at the stories they tell or being to skeptical.
Real compassion demands truth telling
Anti-vaccinationists and proponents of quackery often accuse skeptics and proponents of SBM of lacking compassion, while at the very same time using their very own tales of woe as both a defense against science-based criticism and a weapon with which to attack SBM proponents. In this, they are often encouraged by the very quacks who profit by selling various unscientific treatments. Compassion, whether real or not, is both a marketing ploy to lure new customers and a weapon against those who would warn the new marks that they are about to be taken. It’s a highly effective gambit, one that’s not easy to avoid or overcome. However, the compassion gambit is a double-edged sword.
So why am I so passionate against antivaccinationism and other forms of quackery, particularly cancer quackery?
It’s compassion for the victims that motivates me. 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 could 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 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 mothers who don’t believe that HIV causes AIDS die of AIDS-related complications when combination antiretroviral therapy could have prevented their deaths. 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, every bit as much as Billie Bainbridge or Chiane Cloete?
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 is at least constrained by law, ethics, and science itself to restrain the natural human impulse to promise more than can be delivered. When the shortcomings of EBM/SBM are revealed, I assure you, it’s almost never pseudoscientists and “brave maverick” doctors who think that they know better than scientific medicine that bring shortcomings and ethical lapses to light. It’s medical scientists and ethicists who bring the darkness to light.
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? 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 as he was 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. He even tried to collect his blood money from the estates of his victims!
I could also ask: What about compassion towards the victim of Dr. Roy Kerry’s quackery, for example? Where’s that? 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.
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 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 man kind, 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. That’s why 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.
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 being “healed” for the most part.) 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 or desperate or 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, 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 and to fire away. 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 sufficient deference to pseudoscience) stop me. The victims of quackery deserve no less.