Although this intriguing story comes from The New York Times rather than a scientific journal, it has a “gene-environment interactions” theme. This story also represents a powerful message for everyone.
A Cautionary Tale of ‘Stem Cell Tourism’
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.”
Tests showed that the mass was made up of abnormal, primitive cells and that it was growing very aggressively. Then came the real shocker: The cells did not come from Jim Gass. They were someone else’s cells.
Mr. Gass, it turned out, had had stem cell therapy at clinics in Mexico, China and Argentina, paying tens of thousands of dollars each time for injections in a desperate attempt to recover from a stroke he had in 2009. The total cost with travel was close to $300,000.
A growing number of clinics, often in places like Russia or China, but also in Europe and elsewhere, say on websites that they can treat, even cure, diseases like muscular dystrophy, Alzheimer’s, Parkinson’s, and spinal cord injury as well as strokes, by injecting patients with stem cells that, in theory, could develop into a missing nerve, a muscle or other cells and repair damage from an illness or an injury.
Reports by injured athletes of seemingly miraculous results have contributed to a growing interest among desperate patients. Estimates are that tens of thousands of patients around the world have had such treatments and that the industry is worth hundreds of millions of dollars.
The clinics, which are unregulated, have websites with glowing testimonials from patients, some of which, Mr. Gass’s sister-in-law discovered, have financial interests in the clinics. The clinics often claim to be doing clinical trials, giving a veneer of legitimacy to their work.
Academic researchers say stem cells hold enormous promise, but they are proceeding cautiously with clinical trials because stem cells divide rapidly and can form tumors in laboratory animals. In lab studies, stem cells also can quickly accumulate mutations like those in cancer cells.
While there have been reports in medical literature of patients who developed tumors after stem cell injections, few patients have been as open about their quest for a cure, the money they paid and the tragic consequences as Mr. Gass, a 66-year-old former chief legal counsel for Sylvania who lives in San Diego, has been.
After the stroke, Mr. Gass lived independently although his left arm was useless and his left leg weak. Now, however, with the foreign body in his spine, he is paralyzed from the neck down, except for his right arm. He needs a hoist to move from his bed to a wheelchair, and his doctors do not know how to stop the tumor from growing.
The doctors wrote about his case in a letter published on Wednesday in The New England Journal of Medicine.
Experts who have written articles in medical and scientific journals bemoaning “stem cell tourism” said this case could make a difference.
“We scientists and clinicians say, ‘Don’t do this,’ ” said Dr. Jaime Imitola, a neurologist and stem cell researcher at Ohio State University Wexner Medical Center who haswritten about the dangers of stem cell tourism. But, he said, their warnings often do not resonate.
Dr. Imitola said that Mr. Gass “puts a human face to a tragedy.” Patients might see what happened to Mr. Gass “and say, ‘Oh my God, that could be me.’”
“This is a really cautionary tale,” said Timothy Caulfield, research director of the Health Law Institute at the University of Alberta, who wrote a recent commentary on stem cell clinics.
Mr. Gass’s problems began on May 10, 2009, when he woke with a terrible headache. He tried to get out of bed and fell to the floor, unable to move. He’d had a stroke.
Two years later, he was able to walk only with a leg brace and a cane.
“I began doing research on the internet,” Mr. Gass said. He was particularly struck by the tale of the former football star and professional golfer John Brodie who had a stroke, received stem cell therapy in Russia and returned to playing golf again.
So Mr. Gass contacted a company, Stemedica, that had been involved with the clinic, and learned about a program in Kazakhstan. When Mr. Gass balked at going there, the Russian clinic referred him to a clinic in Mexico. That was the start of his odyssey.
Mr. Gass’s doctors and his sister-in-law, Ruth Gass, tried to dissuade him. Ms. Gass called the clinics and demanded evidence that their treatments worked.
Some of the clinics hung up, saying they would not talk to a terrified relative, she said. Websites often had data but it did not hold up to basic analysis, Ms. Gass said, and when the data was published, it appeared in vanity journals. Other clinics simply told her, “People get dramatically better.”
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 theNobel Prize. If not, you ought to go to hell. Shame on you.”
But Mr. Gass was undeterred. He was willing to spend his money and go anywhere. What did he have to lose? The worst that could happen, he thought, is that he would have no improvement.
He went from clinic to clinic, ending up back in Mexico for an injection of fetal cells shipped from Russia. Six months later, his walking improved. But the improvement did not last long, so he had another injection. Then something disturbing happened.
“I felt pain when I would lie down, like I was lying on a tumor,” Mr. Gass said. “I started to lose my ability to walk and I fell down a lot.” He was in Thailand at the time, a place he likes to visit. Doctors at a hospital there tried to do a spinal tap but told Mr. Gass that something was wrong. There seemed to be no spinal fluid.
He returned to the United States, to Boston, where he had spent most of his life and where his brother and sister-in-law lived and asked the doctors at Brigham and Women’s Hospital for help.
They did a magnetic resonance imaging scan of his spine and were aghast when they saw the image. “The entire lower portion of his spinal column was filled with a mass,” said Dr. Aaron Berkowitz, director of the hospital’s global neurology program.
The only option was to operate.
But now that the doctors knew what the mass was, they were left with another problem: How could they stop it from growing? If it had been an infection, they could have used antibiotics. If it had been cancer, they could have used drugs to target it. This mass, though, was unique.
They decided to try radiation. It seemed to slow the mass’s growth a bit, maybe even shrink it. But recently, Mr. Gass has had another scan in San Diego, and doctors told him that the mass was growing again.
Asked what he would like others to learn from his experience, Mr. Gass said, “Don’t trust anecdotes.”
His sister-in-law had a different reply: “If something sounds too good to be true, it is.”