Follow-Up on the Makayla Sault/J.J./Hippocrates Health Institute Case: J.J. Went Back to Chemo

Finally, two items of good news come out of this dreadful affair in which Aboriginal families stopped chemotherapeutic treatment for their leukemic daughters and sought nonsensical pseudoscientific treatment in Florida.

While one of the children passed away this winter, the other, known in the media as “J.J.”, is being reported as feeling well. Could it be that the raw vegan diet and the Aqua Chi Ionic Foot Bath really work to fight off cancerous tumours?

Or could it be that the family reversed their initial decision and sent their daughter back to chemotherapy?

“But [J.J. was feeling] good, as became abundantly clear, because she resumed chemo treatment in March, as soon as hospital tests confirmed that the cancer had returned.

“The cancer that her parents claimed, early this year, was no longer in evidence, as the child was treated with traditional indigenous medicine, and after the family had returned from a quack therapy regime at a Florida establishment that preaches curing cancer with a positive attitude and a raw plant-based organic diet.

“But J.J. wasn’t ‘cured,’ and to her parents’ credit, they turned back to the conventional if debilitating chemo treatment they’d fought so hard to avoid.”

It is not an easy decision to admit having been wrong, especially when it comes to the survival of your child.

But what about the judge, who had ruled in November that J.J. could not be taken for her family and forced back into chemotherapy, because it was well within the rights of her parents to pursue so-called “traditional medicine” in lieu of a debilitating treatment that had an incredibly high cure rate?

Judge Edward has issued a “clarification” to his ruling.

“Implicit in this decision is that recognition and implementation of the right to use traditional medicine must remain consistent with the principle that the best interests of the child remain paramount. The Aboriginal right to use traditional medicine must be respected and must be considered among other factors in any analysis of the best interests of the child, and whether the child is in need of protection.”

The judge has, in my opinion, displayed a shocking lack of understanding of human psychology and the strength of beliefs that are often not founded on evidence:

“Now Edward tells us that he always knew, instinctively, the parents would do what was best for J.J. He took that comforting view from the testimony of an intake manager with the Brant child welfare agency, in which she quoted the child’s mother as saying, ‘I will not let my baby die.'”

Unfortunately, that is precisely what happened with Makayla Sault. The parental impulse to ensure the survival of one’s child is no insurance against the use of quackery. There often is a gap of information between a willingness to take action and an informed decision.

You can read Rosie DiManno’s report in the Toronto Star here.

You can also hear my discussion of this case back in November with Dr. Christopher Labos on episode 204 of the podcast Within Reason.

Listen / Watch: The Cost of Cancer Drugs

The only good drug is the one the patient can afford.

WNYC radio show and podcast extraordinaire RadioLab most recently did an episode entitled “Worth” in which the show’s hosts and producer investigated the worth of an extra year of human life. They stumbled upon a very interesting story centred on the cost of cancer drugs in the U.S.

Dr. Christopher Labos brought to my attention a recent report from 60 Minutes which discussed the same controversy (using much of the same interviewees, actually).

If you prefer to listen to a top-of-the-line aural production, check out “Worth” from RadioLab.

If you love the sound of a ticking stopwatch and like your journalism the old fashioned way, check out “The Cost of Cancer Drugs” on 60 Minutes.

Both are excellent.

And if you like getting your news from different sources, enjoy them both!


Listen: Dr. Christopher Labos and I on the Rise of Integrative Medicine

This month, Within Reason tackles a scientific topic, so I can publicize it here! Woohoo!

Would you like a side of magic with your chemo? Disproven folk remedies used to be the domain of snake oil salesmen; now, they are being integrated into university health centres. Jonathan speaks to Dr. Christopher Labos, a public science educator and cardiologist, on this worrying trend. Where is the line between feel-goodery and wishful thinking? The recent case of Makayla Sault highlights the harm caused by magic’s new veneer of respectability. Back in the studio, Andrew Cody returns to the podcast, flanked by Anna af Hallstrom, to discuss laundry balls, foot detox, and child abuse. Are our panelists hopeful for the future of science-based medicine?

You can listen to the podcast (for free) at http://withinreason.podbean.com.

If you prefer iTunes, search for “Within Reason” and look under “Podcasts”!

Within Reason Season 2 Logo 600


Cracked Science Video 4: Irreproducible

We often hear the science corrects itself in the long run, but how efficient is this mechanism? Jonathan Jarry reports that reproducibility in the scientific literature is not always a given.

(Des sous-titres en français seront bientôt disponibles!)

Just so you are not too demoralized, the landscape may be changing:
http://www.nature.com/news/journals-u…
http://www.nature.com/news/metascienc…


Comedy Quiz Show on Pseudoscience in Montreal

If you like this blog and would like to see me host a comedy quiz show on pseudoscience, come to Pub St-Paul on Sunday, November 16 at 5PM for a fun evening of comedy, reason, and alcohol!

Andrew Cody, from Within Reason, will be a panelist and will be joined by Montreal-based stand-up comedians Darren Henwood, Chris Sandiford, and David Pryde, who will end the show with their own brand of stand-up comedy.

You can RSVP via Facebook or on Meetup, or if the whole process is too complicated for you, just show up! Free admission; we ask for donations.

Poster


Listen: First Nations “Medicine” on White Coat, Black Art

@NightShiftMD, Dr. Brian Goldman, tackled the issue of First Nations’ right to choose traditional treatments for themselves and their children with, I believe, the correct balance between respect and the need to ask tough questions. You can hear his conversations on the subject in the latest episode of CBC’s White Coat, Black Art.

We are weaning ourselves off of paternalistic medicine, in which medical doctors were deified and their decisions obeyed to the letter. The type of participatory medicine which is replacing it elevates the patient to the level of a dignified decision-maker who requires information and guidance to make an enlightened decision that will affect his or her health.

But what of children?

If an adult chooses to refuse chemotherapy to pursue pseudomedical homeopathy or Reiki, the most cynical of critical thinkers might mutter “social Darwinism” under their breaths. However, when these believers in disproven nonsense need to make medical decisions regarding their children, what is the role of the State?

Dr. Goldman spoke to Dr. Nadine Caron, a surgical oncologist at the University of Northern British Columbia, a First Nations woman herself, and someone who feels that there is more to medicine than evidence.

When boldly asked by Dr. Goldman about the lack of scientific evidence for First Nations “medicine”, she displayed the sort of relativism that readers of this blog will be familiar with by now. “I think there is other ways, uh, where you can garner knowledge and wisdom, and the aboriginal ways of knowing are simply different. And it’s so important to say that they are not wrong; they’re different.”

This relativistic nonsense leads medical practitioners like Dr. Caron to claim that patients need to find the treatment that “works for them”. The problem is that most patients aren’t doctors. Most patients aren’t scientists. Most patients do not understand what a clinical trial is, why placebo controls are important, what the peer review process brings to the table, and how to judge whether a published study is robust or just plain baloney. I’m glad Dr. Caron provides information to her patients, but a science education is not possible within the confines of a public healthcare system.

Some of her aboriginal patients refuse surgery and opt instead for traditional First Nations remedies. Dr. Goldman formulated the tough question that was on my lips: “Can you share the outcomes of any of these patients?” The three examples that popped into Dr. Caron’s mind showed a balance that I don’t suspect the full numbers would reach: one changed her mind and had surgery, one died, one is still alive.

How could conventional medicine fail First Nations patients? Dr. Caron states that few clinical trials test chemotherapeutic drugs, for instance, in First Nations individuals. What if they don’t work as well as they do in the Caucasians often recruited for these trials? The solution to the problem, of course, is not to resort to magical nonsense but to conduct further studies on First Nations patients. There are genetic factors that can affect a patient’s response to treatment. Throwing Western medicine out the window and replacing it with millennia-old wishful thinking is not the logical answer.

I’ve previously written about why Western medicine is not relative. Traditional remedies often either lack rigorous testing or have been thoroughly disproved. The ethical question that I am left with, at the end of this episode of White Coat, Black Art, is what should the State do with children whose parents refuse Western medical treatment.

Should these sick children be taken away from their parents and forced to undergo chemotherapy, with all of its (temporary) side effects? Is refusing treatment for your child in this context equivalent to neglect? Is foregoing chemotherapy and administering traditional herbs that fly in the face of evidence abuse? What is the cost of saving a child’s life if you traumatize him or her by separating the child from his or her parents?

There’s no doubt in my mind that replacing a Western medical treatment with a 90% chance of success for disproven herbal remedies is wrong. It is not different but simply wrong. But is the State forcing a child to undergo this treatment against the parents’ will right or wrong?

Comments below.


A Cure for AIDS that Big Pharma Doesn’t Want! Sounds Familiar?

I was sent a link to the following story by someone who wanted my opinion on it. The article is in French but I will highlight its claims.

“Son remède contre le sida, les labos n’en veulent pas”

Translation: “Labs don’t want his AIDS remedy.”

This is yet another David-versus-Goliath “news” report on a maverick humanitarian who just happens to have stumbled upon a cure for a debilitating or fatal disease that just so happens to be dirt cheap, and so Big Pharma does not even return his calls because it can’t make trillions of dollars selling his cure. Let the people die from their sickness! It’s not like pharmaceutical company employees have families and friends of their own who may also be sick; rather every pharma employee in the world is a soulless, corporate drone addicted to money.

This particular article tells the story of a Robert Vachy, a hardcore mountain-climber (which has no bearing on the story except to anchor your mind on this idea of a lone man who conquers the odds) who tinkered in his kitchen and created, get this, his very own sunscreen! The story specifies that he was the head of R&D for Sandoz, now part of Novartis, so there is some reason to believe that he had a sufficient background, if the story is to be trusted, to engage in a bit of combinatorial chemistry in his spare time. The article does not explain why he felt the need to create his own sunscreen.

However, it turns out that his homemade sunscreen was not just great at repelling dastardly UV light; it was a universal virus killer. That’s right: from herpes to the common cold to HIV, the active ingredient in his homemade sunscreen could kill any virus. He even expects it to work against the Ebola virus!

The problem, of course, is that his miracle molecule costs only a few Euros: no pharmaceutical company in their right mind would want to sell it, since they would stop raking in the dough from their much more lucrative triple therapy. So the poor 81-year-old sap has sold his apartment “in Montmartre” (cue “La Bohème), invested all of his life savings into his small lab, and is now a pauper begging, just begging for the money he needs to cure AIDS.

Do you know why I know for a fact that this is quackery at its most typical? The article claims that none other than Françoise Barré-Sinoussi, the co-discoverer of the HIV, tested this miracle molecule in her lab in 1995, found that minimal amounts of it would kill 99.99% of HIV… and didn’t publish this revolutionary finding in any peer-reviewed journal.

I checked Medline.

There are no articles with “Amovir” (the name of the molecule) and either her name or Robert Vachy’s name. If you can find this article, please send it to me. As it stands, it looks as if the co-discoverer of the HIV had the miracle cure in her lab and decided against publishing these findings. It must be a conspiracy by Big Pharma.

The mistake Vachy made was in going to the wrong co-discoverer of the HIV. If he’d gone to Luc Montagnier instead, the two of them would be in China right now, investigating homeopathic Amovir to cure the Ebola virus.


Listen: Dr. Brian Goldman’s Soft Take on Alternative Medicine

Dr. Brian Goldman (@nightshiftmd), host of a great CBC radio show called White Coat Black Art that dares to pull back the curtain on the hidden world of medical practice, seems to be the latest victim of integrative medicine (IM). This IM movement has been gaining traction with Western physicians and medical institutions: many North American hospitals now include complementary and alternative treatments alongside evidence-based medicine. The world-famous Mayo Clinic in Rochester has done it; our own Jewish General Hospital has done it as well.

In a recent mini-podcast for the CBC show, Dr. Goldman was being interviewed on Dr. David Gorski and Dr. Steven Novella’s paper in Trends in Molecular Medicine entitled “Clinical trials of integrative medicine: testing whether magic works?”.  While he seemed to agree with the authors that treatments like homeopathy and Reiki have no plausible mechanism and have not been shown to work, my “hmm” alarm went off a few times when I noticed that Dr. Goldman kept saying, “the authors of the study show”, “the authors say”, “the authors claim”, etc.

At the end of the interview, Dr. Goldman, in a most irritating fashion, seemed to contradict himself:

“When there were calls in the past for more studies [...], I thought it was plausible to wait and see. These days, I think, that attitude holds less and less appeal. I think anyone who is considering alternative medicine should ask tough questions about scientific evidence and, and I–I’d turn a 180 degrees if I don’t get good answers that this is safe and that it’s–it’s active, that it’s doing something beneficial.”

A few seconds later (italics mine):

“But if you are determined to use alternative treatments, then do them with Western medicine in addition–in a complementary way, not an ‘either/or’ thing. [...] Be safe, do both, and hopefully you’ll find an enlightened family doctor or specialist who will entertain both.

You can listen to the whole interview here.

White Coat Black Art is one of my favourite podcasts. I think Dr. Goldman has shown remarkable drive and passion in bringing controversial topics in medicine to light. However, this is an instance where I think the IM movement is just too appealing. I don’t think physicians who “entertain both” are “enlightened”. I consulted with a Western physician a few years back when I wanted to “do both”, one last hurrah for wishful thinking before I became the staunch rationalist I would like to think I am today. This doctor did not agree to monitor my liver enzymes while I indulged in unproven Chinese herbs. He educated me and set me straight: he questioned my reasoning. That is being an “enlightened” physician.

Thank you, Dr. Tischkowitz. You did the right thing.

Dr. Goldman? How much negative evidence do you need to take a stronger stance? Enough of the wishy-washy stuff around alternative medicine. If it had been proved to work, it would be medicine. Let’s spend government money in more promising treatment modalities.