One year later: Selective outrage over treatment-related deaths

Note: One year ago today, an autistic boy, Abubakar Tariq Nadama, died of a cardiac arrest while undergoing chelation therapy to try to "cure" his autism. Today, as I am on vacation, I have scheduled several of my old posts on the topic to appear.The investigation into his death is ongoing regarding whether to file criminal charges against the doctor, although it irritates the hell out of me that they are arguing over whether Tariq was given the "right" agent when in fact there is no "right" agent for chelation therapy for autism. The boy should never have been getting chelation to "cure" his autism, period.

This is the third in a series that I wrote over the ensuing weeks and months that I have scheduled to appear throughout the day today, the first anniversary of Tariq's death. Stop back later for more:

Sadly, I don't often make it back to my old stomping grounds at the Usenet newsgroup misc.health.alternative anymore. The time I used to spend jousting with alties on misc.health.alternative and Holocaust deniers an alt.revisionism has more or less been replaced completely by the effort I now put into Respectful Insolence since I started it last December. There's no way I have could possibly have time to do both (and, yes, admittedly sometimes it's questionable whether I should devote as much time to my online hobby as I do).

Every so often, however, curiosity gets the better of me, and I just can't resist the temptation to drop into the newsgroups where I used to be a regular, see what the remaining regulars are up to, and sometimes even post a little, if only to remind them that I haven't completely disappeared. Weeks, sometimes months, go by between my appearances, but they can be instructive, particularly in relation to the themes of this blog. Last night was one such time. I was not surprised when I dropped in on misc.health.alternative to be greeted with a bit of heated "discussion" over the recent case of Abubakar Tariq Nadama, the 5 year old autistic boy who died while receiving chelation therapy for "autism" at an altie clinic near Pittsburgh. Predictably, the discussion fell into the usual two camps, with those in favor of evidence-based medicine (such as myself, Mark Probert, or Peter Bowditch) expressing justifiable outrage over what appeared to be a clean kill of an otherwise healthy boy who was unfortunate enough to have been treated by a quack named Dr. Kerry, and the altie contingent either trying to defend Dr. Kerry or at least downplay the death, arguing that it doesn't show that chelation isn't generally safe.

This week, one particular longstanding regular on misc.health.alternative, an altie named Jan (posting under the pseudonym of "Lady Lollipop"), displayed an excellent example of this behavior. Jan is one of the most die hard alties I've ever come across in my entire life. Throughout the years I've butted heads with her on Usenet intermittently. When it comes to any treatment-related complications or deaths or deaths due to negligence or medical errors that occur during "conventional" treatments and are controversial or egregious enough to make the news, Jan has generally been quick to become outraged. For example, take the famous case of Jesse Gelsinger, the 18-year-old boy who died as a result of a gene therapy trial at the University of Pennsylvania in 1999. This is what Jan has had to say about him:

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. (Link)

(Yes, I left the spelling and punctuation unaltered.) Another example:

Are YOU interested in the fact that those in organized medicine are doing worse, and remain on staff??? You've been asked your opinion, you are strangely silent, but still posting ONLY fraud within alternative medicine. Furthermore we see fraud within conventional medicine, EVERYDAY.

Do tell us WHY we never see this kind of fraud on the Barrett, Polevoy and Bowditch websites???????? (Link)

She said a lot more about the Gelsinger case, but that gives you a flavor of her mindset. When it comes to conventional medicine or experimental treatments in even carefully monitored clinical trials, Jan was very harsh indeed on the doctors involved, allowing room for no errors, no risk, no adverse outcomes. (In actuality, when it comes to the Gelsinger case, to some extent I sympathize with her viewpoint, as there certainly was evidence of shoddy record-keeping and a question of whether previous adverse reactions in patients participating in the trial had been properly reported before Jesse's death. I was rather disappointed that the penalties assessed in that case weren't more severe, and felt a bit odd going to see a talk by the principle investigator of that gene therapy trial, Dr. James Wilson, who was still being invited to give scientific talks in its immediate aftermath in 2000.) In any event, any time there is error or negligence by conventional doctors or, even worse, pharmaceutical companies resulting in patient harm, Jan is utterly unrelenting and vicious in her criticism. She will post relevant (and often irrelevant) news articles about such incidents over and over and over again, along with her invective.

It was quite a different story when Jan found out about young Tariq's death while receiving chelation therapy for autism, however. After a bit of sniping, back and forth, during which time Jan, as she is frequently wont to do, deleted the the quoted text of one of my posts and replied by calling me a liar. At this point, I said:

Snipping what I said won't change that it was almost certainly chelation that killed that boy.

To which Jan replied:

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

Let me reemphasize what she said:

...if it did, it happens, as with all procedures.

Note the rather blithe attitude towards this complication. This is the same woman who roared her outrage at the death of Jesse Gelsinger. Note her now equating the utterly unproven treatment of chelation therapy given in an uncontrolled situation with no oversight outside of a clinical trial with an experimental gene therapy vector administered under the auspices of approved clinical trial that had to be approved by multiple entities. In the latter case, she correctly (if near hysterically) questions whether the oversight was adequate or whether the doctors administering the gene therapy vector were being reckless. In the former, she dismisses the child's death with, "It happens, as with all procedures." If this had been, say, a patient dying from infectious complications after chemotherapy, I know from past experience that Jan would be ranting and raving about "conventional medicine" pushing toxic chemotherapy that suppresses the immune system and how the patient would not have died if not for the evils she perceives in conventional medicine. She might also blame big pharma as well, for good measure. The bottom line is: From conventional medicine, she will not accept even reasonable justification or explanations of risk-benefit ratios as valid explanations for any complications or treatment-related deaths. From conventional medicine, she will not tolerate any adverse outcomes. Yet it's a very different story indeed when it is an alternative practitioner who produces a bad outcome or even a death. When one of her favored therapies results in the death of a boy, as it did in Tariq's case, suddenly she becomes oh-so-circumspect, oh-so "let's wait and see" about it. Suddenly, she's willing to bend over backward to give the benefit of the doubt to Dr. Kerry, hoping against hope that the final results of the autopsy will give her an out that allows her "reasonable doubt" over whether chelation killed the boy.

A regular named Rich summed it up best:

But when it happens with a conventional treatment Jan is quick to invoke evil organized medicine to explain the death. Funny that Jan does not say it happens with all procedures when the death is due to a conventional procedure.

But when the death is due to some alternative procedure (and chelation for autism is certainly alternative) then she just says "it happens". Well if a treatment with absolutely no credible evidence for efficacy is used then the death is a senseless one that should never have happened.

Precisely.

Poor Tariq's death was senseless and unnecessary, but there are a fair number of people out there who will not concede that point, as Kev has shown. Unfortunately there are extreme alties out there for whom conventional medicine can do no good and alternative medicine can, it seems, do no ill. It is not just in the field of autism, either. I simply used this recent event to illustrate my point because it is fresh in my mind. For another example, some alties like to go on and on about the number of people who die as a result of complications of coronary artery bypass operations while at the same time extolling the supposed virtues of another bogus use of chelation therapy, to treat cardiovascular disease. Another example I could have used that is not related to chelation therapy is the way that many die-hard alties defend quacks like Hulda Clark, who charge large amounts of money for ineffective cancer treatments that can result in catastrophic delays in patients seeking effective cancer treatment, as I have described before.

The odd thing is that people like Jan seem to expect an incredibly high level of performance from "conventional" medicine, so much so that errors or treatment-related morbidity and mortality are utterly unnacceptable. In contrast, their expectations for "alternative" practitioners seem to be much lower, so much so that they are willing to give them every benefit of the doubt and defend them even when their treatments kill. To them, any death or compliction due to alternative medicine seems to be excusable ("it happens, as with all procedures"), but conventional doctors must have utterly perfect results, something no human can achieve.

This post originally appeared on September 7, 2005 on the old blog.