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Injections of Hope
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Likewise, patients who travel for stem cells are strongly motivated to feel better, said Jamie Heywood, founder of the online support network PatientsLikeMe. "If you spend so much money and sacrifice so much to do something, it's difficult to believe it didn't help," said Heywood, who tracks several offshore stem cell providers.
More Study Needed
The disease that most interests Heywood is amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's disease.
In 1999, after doctors diagnosed his brother Stephen with the fatal disease, Heywood organized the first human stem cell trial in the country for ALS. After Heywood won FDA approval for the safety study, his brother and two other ALS patients received spinal injections of stem cells from their own blood at Thomas Jefferson University Hospital in Philadelphia. None of the patients improved. Stephen died in 2006.
Since then, about 20 ALS patients from PatientsLikeMe have received offshore stem cell injections, Heywood said. None has shown lasting improvements, according to patient reports and surveys on the site. "The evidence to date is that the simple 'put them in and they will heal you' model isn't going to work" against ALS, Heywood said.
The only way to know if the injections help patients, academics say, is to subject them to fully documented, placebo-controlled studies. That's why the 2,500-member International Society for Stem Cell Research (ISSCR) is developing guidelines to encourage overseas stem cell companies to collect and share data. A draft of the guidelines says the society "condemns" injections of stem cells outside rigorous studies.
At the same time, a few academics voice regret about overplaying the promise of stem cells. Reams of evidence suggest various types of stem cells do possess healing properties, but figuring out how to harness that power will take years of careful human trials, they say. "There's been extremely high levels of hope and hype" surrounding stem cells, said Laurie Zoloth, a bioethicist at Northwestern University.
"I take as much blame for creating this aura that stem cells can do anything as anyone else," Snyder said. He and other academics offer a rule of thumb: Avoid companies asking for money.
"There's a standard in clinical research: Patients don't pay for it," said George Daley, president of ISSCR and a researcher at the Harvard Stem Cell Institute. Snyder said this rule might screen out "some legitimate operations," but it will also weed out the scams. Legitimate clinical trials are usually funded by the government or by private companies, he said.
"At the beginning you think, 'I'm going to be cured for life, I'm going to get better every day,' " said Hanson, the lung patient who traveled to Tijuana. "Well, that isn't true."
Brian Vastag is a freelance science writer in Washington. Comments:health@washpost.com.
