On Friday, Gordie Howe, the ferocious right-winger for the Detroit Red Wings, died at 88. He was a titan of professional hockey who played the sport until he was 52 (!), scored more goals than anyone not named “Wayne Gretzky,” and, when all was said and done, staked a claim as one of the best players of all time. His toughness and longevity made him extremely beloved among fans, who dubbed him “Mr. Hockey” and named a special kind of hat trick — one goal, one assist, one fight — after him. Soon, his name will even be on a bridge connecting Detroit and Windsor, Ontario — a fitting monument for a man who was born in Saskatoon but who ended his life as a legend of American sports.
Today’s an important day for Howe’s family, friends, and fans to remember his life. But there’s a less inspiring undercurrent to the final year and a half of that life that shouldn’t be ignored — if anything, now’s the time to bring attention to it. I’m talking about the experimental stem-cell treatment Howe received that supposedly led to a medical “miracle,” greatly improving Howe’s quality of life in the wake of a stroke and other medical problems. The media, in one of the worst recent examples of bad science reporting, credulously amplified this story line, likely doing real-world harm in the process — and at a time when experts are starting to take the threat posed by stem-cell misinformation very seriously.
Let’s review the basic timeline. In October of 2014, Howe had a debilitating stroke. Two months later, he was rushed to the hospital for what was probably dehydration. In the wake of the two medical emergencies, as his family tells it, Howe was at death’s door. Then, hope came out of nowhere. As Reeves Wiedeman reported in a thorough New York Magazine feature about Howe’s medical problems, the family “received a call from Dave McGuigan, the marketing chief at Stemedica, the stem-cell manufacturer. McGuigan had once worked for the Red Wings and told the Howes about an experimental treatment Stemedica thought could save their father: the injection of up to 100 million neural stem cells into his spinal column, in the hope that they would migrate to his brain and help his body repair itself. Howe could improve within 24 hours, Stemedica said, and receive the treatment anytime — just not in the United States. The procedure wasn’t FDA-approved, and Howe would have to go to a clinic in Tijuana.”
Seeing little other option, the family sent Howe down south for the treatment. Almost immediately after it was complete, in what has, according to Wiedeman, become a legendary bit of family lore, Howe walked, assisted, to the bathroom — the first time he had walked in months. Other shocking improvements came as well, according to the family, both on the physical and cognitive levels (even before his stroke, Howe had been suffering from dementia). “I would say he’s basically back to where he was before he had his stroke,” Murray Howe, Gordie’s son, a radiologist and the family’s de facto spokesperson, told me in an interview, “and we’re hoping for continued improvement so that even some of his dementia symptoms will continue to improve, so we may end up having him be stronger than he was before the stroke.” Murray told me he was positive the stem cells were responsible for the improvement: “The fact that he was actually standing and walking eight hours after the intraspinal injection — there’s nothing that can explain that short of responding to the cells.”
The problem is that stem-cell experts appear to be united in their skepticism that Howe’s case provides solid evidence the Stemedica treatment regime works. Thousands of words have been written on this in some rather comprehensive, extremely skeptical examinations of Stemedica’s claims, and experts quoted in both Wiedeman’s story and my own said that they viewed the story, as it was being told by Stemedica and the Howe family, as quite unlikely.
Their biggest gripe is that a single-subject anecdote, which is what the story of Howe’s ostensible recovery is, can’t come anywhere close to proving that a given treatment works. One of the most important reasons medicine is incredibly suspicious of these sorts of anecdotes — and it’s a suspicion broadly shared by every other field of legitimate science as well — is the fact that the human body and the treatments we use to heal it are both incredibly complicated, so an individual patient’s outcome can’t necessarily be attributed to any one thing in particular. People get sick and get well for a wide variety of reasons. For example, “stroke patients often improve on their own within six months,” as Wiedeman pointed out. So the way to determine whether the Stemedica treatment works would be to set up an experiment: to compare a group of stroke victims who get that treatment to a group of stroke patients, as similar as possible, who don’t. Then, and only then — and the bigger the sample size, the better — can you even start to make any claims about the efficacy of the treatment.
The need to be careful about anecdotal evidence is only heightened when it comes to dealing with vulnerable medical populations, since the stakes are so high and the emotions so raw. In Wiedeman’s article, for example, he noted that after the Howes announced Gordie’s treatment, they “started getting three or four calls a day from people interested in the therapy, including the family of Bart Starr, the Hall of Fame quarterback, who had recently suffered a stroke.” It’s almost certainly the case that some of these people, as well as others among the millions who have read about Howe’s “recovery,” ended up shelling out the $35,000 (that figure is from Wiedeman) it costs for a round of the Stemedica’s experimental treatment in Mexico.
They were likely motivated by media coverage of Howe’s condition that failed spectacularly to push back against some rather over-the-top claims — over and over and over, readers were told that Gordie Howe’s life had been saved by a miracle cure, that he was now attending events again and enjoying life because of that miracle. That narrative bled into some of the obituary coverage: “Five things about the stem cell therapy Gordie Howe underwent after strokes” went the headline of one credulous Winnipeg Free Press article. A USA Today article that did raise questions about the treatment’s efficacy quoted both Murray Howe and a statement from Stemedica, but didn’t quote any stem-cell experts. (After this article went up, the author of the USA Today piece, Brent Schrotenboer, told me via Twitter that none of the stem-cell experts he had reached to had returned his calls initially, and that he had subsequently added a comment from one to the article. A quote from a stem-cell researcher has indeed been added to the article – he emphasizes the need for controlled trials.)
That’ s been a consistently missing piece from coverage of Howe’s medical travails. For the most part, readers of these stories weren’t exposed to the serious questions being raised by experts. That’s partly because Howe’s family, particularly Murray, believed in and promoted the treatment so enthusiastically (they have since become Stemedica investors and announced they will be “collaborating” on an American clinical trial for Stemedica) and journalists took their stories at face value. Many of those journalists weren’t really qualified to write on this subject, anyway: The Howe episode was something of a worst-case scenario for science reporting in part because the sports journalists providing the bulk of the coverage were more equipped to discuss the neutral zone trap than the blood-brain barrier. “To be honest,” wrote a surgeon and science blogger who was skeptical of the Stemedica claims, “I can’t remember a time when I’ve seen a medical story presented so many times in a manner so devoid of basic fact-checking.”
The single biggest contributing factor to this bad reporting, though, was likely the way readers and writers alike are captivated by inspirational stories. A hockey legend’s life has been saved by a medical miracle — it’s such an amazing story! Who wants to be the jerk who stands up and asks tough questions?
One person who has made a career out of being exactly that “jerk” is Tim Caulfield, the Canada research chair in health law and policy at the University of Alberta. He’s been studying science communication and miscommunication — with a focus on stem cells — for decades. If you get him on the phone on this subject he’ll quickly, proudly tell you about the time Keith Olbermann, who conducted an interview about the Howe “miracle” that was so credulous it drove some skeptical scientists batty, called him a “bastard” on Twitter after Caulfield implored him to “Stop stem cell hype!”:
Caulfield uses his exchange with Olbermann in one of his talk slides, and it reflects the emotionally explosive nature of stem-cell science communication. As Caulfield explained, stem cells occupy a unique place in the public consciousness when it comes to medicine: On the one hand, there is real promise there, but on the other, because of that promise, it’s extremely easy for the public to become confused about the current state of the science, as well as the field’s very real limitations — and to fall for peddlers of half-baked science. That’s especially true when it comes to people dealing with some of the serious illnesses stem cells may (or may not) be able to treat or cure in the long run. Caulfield told me about times he had actually been yelled down by multiple sclerosis patients at talks in which he was trying to … prevent MS patients from falling for shoddy science. (It just so happens that an incredibly promising, peer-reviewed Lancet study on stem-cell treatment for MS was just published, it so happens.)
The emotions involved, in short, “necessitate being even more careful in how the research is done and presented,” he said. So Caulfield and other experts have been concerned for awhile about just how susceptible to exaggeration and hype the subject of stem cells is. In fact, the latest edition of the guidelines published by the International Society for Stem Cell Research — the primary international organization for the stem-cell research community — which was just released last month, included, for the first time ever, a section specifically dedicated to science communications, and in particular the way stem cells get overhyped in media coverage. In a Science article explaining this problem, a team of authors including Caulfield — they all helped write the guidelines — laid out the “harmful consequences” of stem-cell hype, “including misleading the public, creating unrealistic expectations, misinforming policy debates, devaluing methodical approaches to research, and driving premature or unwarranted clinical use. This is particularly important in light of mounting concern about the marketing of unproven stem cell treatments.”
A major culprit in all of this, Caulfield and his coauthors write, is — wait for it — “the popular press.” Caulfield has found that media portrayals of stem-cell research, among other shortcomings, present overly optimistic estimates of how long it takes to turn stem-cell research into actual therapies; emphasizes benefits over risks; and portrays stem cell clinics in an uncritical light. He even coauthored an article on the Howe case in particular, since it’s such a striking example of how everything can go wrong when journalists cover stem cells in a shoddy or superficial way.
It’s important to point out that Howe’s death doesn’t prove the Stemedica treatment didn’t work. “There are some people who are angry about these clinics, and I was worried people would say something like Guess it didn’t work, which would be entirely inappropriate — it’s one anecdote, for both sides,” said Caulfield. But the way Caulfield sees it, “You can even be generous to the science with the Gordie Howe case. You don’t have to say it’s complete nonsense.” In other words, Howe’s death offers no more reason to believe the treatment worked than his post-stroke improvement offered reasons to think it did. There’s just nothing — nothing — an anecdote like Howe’s can really tell us about an experimental treatment regime, especially in an instance like this when so much of the story has been told by family members who are, understandably, tied up emotionally in the story’s outcome.
It’s also important, of course, that criticisms of the media’s coverage of the last chapter of Gordie Howe’s life not extend into criticisms of the Howe family’s very personal, agonizing decisions. They had every right to seek out experimental treatment for Gordie, and to accept Stemedica’s offer, and it’s obviously not their job to approach the story of Howe’s ailments and treatment in the skeptical manner of a journalist. They are human beings who were dealing with the trauma of watching a family member, who saw a chance to extent that family member’s life, and — in the case of some of them, at least, based on Wiedeman’s reporting — are convinced it worked.
But journalists, on the other hand, have a profound responsibility to get this stuff right, and it’s exactly the wrong idea for them to retract their skeptical instincts when they come across a complicated story that feels right, that feels inspiring. This stuff isn’t complicated: If you’re writing about a subject where you lack expertise, call or email someone who has that expertise. Don’t take claims at face value, especially spectacular ones.
Maybe Stemedica was onto something — maybe further testing will show that. But to have people racing to Mexico for last-ditch, experimental treatment based on a single inspiring anecdote, echoed repeatedly and credulously by mainstream media, implies that something has gone seriously wrong in how science is communicated to the public. It also does no favors to the stem-cell researchers who toil diligently to do science the right way, whose legitimate, peer-reviewed findings will be lumped in with all the pseudoscience with which they coexist and compete for headlines. “I think these kinds of portrayals hurt the field,” said Caulfield.