Apr 06 2010
Michele Mandel, writing for CNews (a Canadian outlet) is responsible for one of the worst examples of science and health news reporting I have ever seen. Certainly she is at the top of my list so far for the worst reporting of the year.
She tells the story of Alda Byers, a 52 year old woman who suffered a brainstem stroke and is now locked-in – a syndrome in which she is conscious but mostly paralyzed and can only blink her eyes. This is a devastating neurological condition, and I fully understand the desperation of her family in seeking a cure. Unfortunately, currently there isn’t one.
But we are living in the golden age of quackery, where a global market of false hope is peddled over the internet. And so Byers’ family found a stem cell clinic in Mexico willing to treat her stroke with a stem cell transplantation. Mandel does not name this mystery clinic in Mexico, or the doctor who runs it or who treated Byers. We learn no details about the treatment except that it was “stem cells.”
The story is actually fairly predictable from that point – the family raised the money necessary to take Byers to Mexico and receive the treatment (we are not told how much it cost but these clinics typically charge tens of thousands of dollars). After receiving the treatment the family was convinced that Byers improved, reporting that she could move her head from side to side, form her mouth into an “o”, and wiggle her toes. But the improvement was not sustained.
Then we get to the focus of Mandel’s story – in order to continue the treatment Byers needs a Canadian doctor to prescribe a cocktail of drugs (erythropoeitin, filgastrim and somatotropin), but the family cannot find a doctor willing to prescribe them. Here we have the human interest story that Mandel wanted to tell, regardless of the facts or the dictates of journalistic integrity. She concludes:
And as she watches him, her blue eyes spill unspoken words of unbearable defeat. It’s as if someone dangled the key of hope before her and then cruelly snatched it away.
Leaving her locked-in for good.
I do not want to in any way minimize the sincere plight of Byers and her family. I have treated patients who were locked-in and it is one of the worst neurological conditions we face. My problem is with Mandel’s framing of this story as cruel doctors snatching hope from a desperate patient. This is utter rubbish. Mandel does not interview a doctor and provide any explanation for why they would refuse to prescribe these drugs. She does quote Byers’ husband, who can only speculate:
“There was definite improvement here. Why someone wouldn’t want that to continue is beyond me,” insists Byers. “I guess they’re all afraid of malpractice suits.”
I suspect there is another explanation – the doctors understand that this treatment is bogus and that Byers is being exploited by a con-artist in a white coat. Facilitating such exploitation raises serious ethical issues, and is not in the patient’s best interest.
That is the story behind the story, but apparently Mandel was not interesting in such things, or even a pretense of false balance.
Stem Cells for Stroke
What is the current status of research into stem cell therapies for stroke? At present we are at the animal research level, mainly producing strokes in rats and then transplanting various types of stem cells with various techniques and following outcomes. Early results are encouraging, but we do not yet have sufficient data to transition to human trials, although we may be getting close. There are many questions to be answered: what are the stem cells doing exactly, do they survive and form connections, do they support native cells in their recovery, do they limit inflammation, and what are the long term outcomes? A recent review of the research concluded:
Future studies of neuroregeneration will require the demonstration of function in endogenously born neurons following focal ischemia. Further, methods are currently lacking to demonstrate definitively the therapeutic effect of newly introduced neural cells. Increased plasticity following stroke may facilitate the functional integration of new neurons, but the loss of appropriate guidance cues and supporting architecture in the infarct cavity will likely impede the restoration of lost circuitry. Thus careful investigation of the mechanisms underlying trophic benefits will be essential. Evidence to date suggests that continued development of stem cell therapies may ultimately lead to viable treatment options for ischemic brain injury.
Translation – cautious optimism, but we are not there yet.I would also point out that much of this research involves transplanting stem cells shortly after the stroke, and so some of the improvement may be due to a protective mechanism (limiting damage) rather than a restorative function (growing new brain cells). This would therefore not translate into treatment long after a stroke (more than a few days).
So why is it that an anonymous clinic in Cancun Mexico would be years ahead of leading research centers in translating stem cell therapies for stroke in humans? The simplest answer is – they aren’t.
Further, if this Mexican clinic had a new treatment that was more effective than what leading researchers were so far able to develop – where is their published research? Why aren’t they telling the medical community about their breakthroughs, and doing the kind of clinical trials that would convince doctors their treatments work? There is absolutely no legitimate reason not to do this. If they were transparent and were doing ethical research and had a treatment that worked, their clinic would become world famous and they would have more clients than they could deal with. Their techniques would also spread to other centers and the research would be expanded. That is what happens when a treatment is legitimate.
What about Byers’ story – did she really improve? We don’t know, because there does not appear to be any scientific follow up of her condition. In stroke trials patients often appear to improve even with placebo treatments. There is what is known as the “cheerleader effect” – tell someone you have given them a treatment and encourage them to do more, and they will do more – if for no other reason than perhaps they are trying for the first time in a while. That is sufficient to explain this story, at least in the absence of objective stroke scales documenting maximal neurological function prior to treatment.
Further, it is quite possible that Byers was given one or more drugs that may have treated a post-stroke depression or temporarily stimulated neurological function, or she was given some intensive rehab – giving the appearance of a temporary minimal improvement, but just enough to stoke the fires of hope and make the treatment seem legitimate.
It is also possible that the clinic actually transplanted neural stem cells (we cannot take this for granted, but it’s possible) and that they provided a temporary benefit to brain function. This is plausible given existing research. But one of the big questions and challenges is – how long do such cells survive? Patients may be better at 30 days, but not 6 months. This is a common problem of both fetal and stem cells transplants, and is one of the technical issues researchers are working on.
If in the very unlikely situation that these Mexican doctors actually have an effective stem cell treatment, then they are guilty of extreme malfeasance. By failing to do ethical, transparent, and scientific trials of their treatments they are depriving their patients of proper follow up (as is evidenced by the Byers case) and the world of their treatment. This is unethical in the extreme.
But it is more likely in my opinion that they are just charlatans.
The press needs to do a far better job of exposing these exploitative clinics to the public – they are there to take large sums of money from desperate patients and their families and friends. Their behavior is grossly unscientific and unethical. There is a reason why they are hiding away in Cancun, and are not embraced by academic centers.
Rather, Michele Mandel decided to give such clinics free advertising. Her article goes beyond incompetence to reckless indifference to the truth. She is now an accomplice to this exploitation and is responsible for every patient who seeks out such care after reading her article.
More information on this story is available from Orac, who originally pointed me toward the story. Specifically, another article on the story mentioned which Mexican stem cell clinic treated Alda Byers – Stem Cell Therapy International. As Orac points out, this is as bad as you might imagine, with all the red flags for quackery. They make astounding claims to treat a wide variety of ailments and provide no evidence to back up their claims (they basically tell you to look up the subject in PubMed).
We also learn that the Byers spent $150,000 on the treatments – $40,000 to the clinic and the rest on travel and other expenses.
Also, I noted one error in Mandel’s article. She mentions that the clinic is in Cancun, but it appears that it is in Tijuana Mexico. This is not an important detail, but reflects the generally sloppy nature of her reporting.
One of the commenters on Orac’s blog brought up what is an excellent point – by requiring the prescribing of several powerful and risky drugs, which local docs (as in this case) are unlikely to prescribe, the clinic has a ready-made excuse for lack of efficacy of their treatment.
This also raises another ethical issue – beginning a treatment (and charging tens of thousands of dollars) without first establishing appropriate follow up, including prescribing necessary drugs, is malpractice.
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