Stem Cell Tourist Sports Massive Growth: Condition Worsens - Blog - Reeve Foundation

“Don’t trust anecdotes.” Take it from Jim Gass.

Gass, a 66-year-old former chief legal counsel for Sylvania, then living in Wilmington, Mass., had a stroke in 2009. He could walk on his own and lived independently, but he wanted to recover his flaccid left arm and weak left leg.

“I began doing research on the internet,” Gass said. He discovered a lot of online testimonials about successful stem cell treatments. These treatments, unproven and basically experimental, are not available in the U.S. of course, so you have to travel overseas, and pay a lot of money. Gass was especially impressed with the story of former football star and golfer Jim Brodie, who recovered from a stroke after cell therapy in Russia.

So, figuring he had nothing to lose, Gass says he spent $300,000 – more than half for the therapies themselves – traveling to China, Argentina and Mexico. Gass got his last cell injections in Mexico in September 2014; he was told they were fetal stem cells. Soon after that Gass experienced back pain and paralysis in his right leg, which had been unaffected by the stroke.

It gets worse: Gass is now paralyzed from the neck down, using a power wheelchair, incontinent, with progressive back pain.

He is carrying around a massive, uncontrolled blob of cells in his back. It’s a lesion – but not cancer; the mass is sort of teratoma formed by someone else’s cells. Those stem cells he got in Mexico are apparently expanding in his lower back, invading his nervous system. His doctors are baffled. They don’t know how to remove the sticky mass, or to turn if off. Radiation worked for a while but that thing inside him is still growing.

Gass’s story was made known after doctors at Brigham and Woman’s Hospital in Boston reported on the case in the New England Journal of Medicine this week, “Glioproliferative Lesion of the Spinal Cord as a Complication of ‘Stem-Cell Tourism.’” The Boston Globe and the New York Times picked it up.

From NEJM

He was not taking any immunosuppressive medications. In reports provided to him by the clinics, the infusions were described as consisting of mesenchymal, embryonic, and fetal neural stem cells.

Neuropathological analysis revealed a densely cellular, highly proliferative, primitive neoplasm with glial differentiation.

Times reporter Gina Kolata notes that while there have been reports in medical literature of patients getting tumors after stem cell therapies, none have been as candid about desperation for a cure, the money paid, and the tragic outcome. From her report:

The surgeon gasped when he opened up his patient and saw what was in his spine. It was a huge mass, filling the entire part of the man’s lower spinal column.

“The entire thing was filled with bloody tissue, and as I started to take pieces, it started to bleed,” said Dr. John Chi, the director of Neurosurgical Spine Cancer at Brigham and Women’s Hospital in Boston. “It was stuck to everything around it.”

He added, “I had never seen anything like it.”

Ruth Gass, Jim’s sister-in-law, was suspicious from the start. She tried to talk him out of it, and contacted some of the clinics asking for data showing that the treatments worked.

She raged against the clinics, telling them: “You ought to be ashamed for charging $40,000 a shot. You prey on people like my brother-in-law who is desperate for help.”

Then came her kicker: “I said, If what you are saying is true, you should get the Nobel Prize. If not, you ought to go to hell. Shame on you.”

Kolata asked Gass what he would like others to learn from his experience. Don’t fall for every internet anecdote you read, he said.

Gass told the Globe, “I couldn’t accept where I was. A life lying down in bed is not the place to be,’’ he said. “The consensus was stem cell therapy was going to be the future of treatment for stroke. I read all the cautionary tales even though I didn’t believe them.”

Gass’s sister-in-law put it this way: “If something sounds too good to be true, it is.”

This story is bad for Gass, for whom I have much sympathy. He is not an uneducated rube who fell under the spell of Svengali. But he was scammed. He was the perfect target of a global marketing effort to sell expensive and bogus medicine. It’s a wonder we don’t read about stem cells-gone-wrong more often. It comes as no surprise that if somebody shoots you up with cells that are programmed to grow, well dang if they don’t grow.

Let’s hope Gass and his doctors figure out his blob of runaway cells. And let’s also hope this news does the stem cell field a big favor. Could this finally be the tipping point wherein patients with every sort of malady stop to consider the very real risk of rogue cell therapies in distant lands? And perhaps might this spur needed regulation of the medical frontier to protect well-meaning patients such as Gass?