Telling the whole story on stem cells

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Every day, it seems, new research “raises hopes” that stem cells will cure a new disease. I myself have written about the enormous potential of stem cells more times than I can count. Since stem cells can transform into any type of cell in the body, they might become a source of replacement cells for diseases in which sick cells malfunction or die.

And yet, earlier this month, there was a piece of stem cell news that nobody seemed to care about: one of the few companies that is actually trying to develop stem cells into therapies announced that it was abandoning a clinical trial. The news came in a press release issued on a Friday, as bad news often is; that tends to dampen the bad publicity. And indeed, no major newspaper or magazine covered the story.

The company behind the trial, Stem Cells Inc., was testing whether cells made from fetal brain cells would help children with a fatal illness called Batten disease. The disease results when children are born with dysfunctional versions of proteins that normally sweep the brain clear of wastes that are generated by normal biological activities. Without working versions of these proteins, kids suffer from an untreatable buildup of toxins in the brain. Most die by age 10.

In 2006, Stem Cells Inc. began a small trial to see whether its cells were safe in six children with Batten disease. The trial, if successful, would be a major coup for both patients and for researchers; this was the first time that anyone had tested human brain stem cells in patients, so if the trial worked, it would be a big thumbs-up for a whole new method of disease treatment. The trial – and the company’s 2009 announcement that the trial didn’t uncover any major safety problems – drew wide media coverage.

“He was a little boy who was basically waiting to die, now he’s waiting to get better,” one father told the San Diego Tribune after his son became the first child to receive a stem cell transplant in the trial.

Stem Cells Inc. launched a second clinical study last October. It was this trial that was abruptly canceled earlier this month, because, the company said, it couldn’t find any patients with Batten disease to enroll in its trial. Three of the six children with Batten disease who were treated in the earlier study have now died, which is, sadly, not surprising, given the severity of the disease.

So why did the trial’s abrupt end go largely unnoticed? Because progress, promise, and potential are exciting and inspiring. Failure is not.

It’s true that Batten disease is rare; maybe if the trial had been in cancer or diabetes, more people would have paid attention. But the fact remains that we report all the time on “breakthroughs” that are decades away from helping a single person. Yet when this treatment actually made it into patients, in a trial that had earlier been hailed as a significant milestone for the field, and then failed, nobody really cared.

People complain a lot that the media only notices when things go wrong. “If it bleeds, it leads” is the oft-repeated cliche about broadcast journalism. But I think we don’t report the bad news often enough, especially in science journalism. Failure is built into the scientific process, and often tells researchers as much as an apparent success.

Canadian researchers have reported that patients are spending anywhere from $5,000 to $39,500 per treatment on completely bogus, untested stem cell “therapies.” On the one hand, it’s surprising that someone would be willing to invest such astronomical sums in snake oil. On the other hand, when all most people hear about stem cells is good news, it’s not so surprising at all.

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Photo credit Iki-shi, Nagasaki Prefecture, Japan. colincookman/flickr.

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Categorized in: Erika, Health/Medicine

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