"He went abroad for stem cell treatment. Now he’s a cautionary tale" by Liz Kowalczyk Globe Staff June 22, 2016
When Jim Gass suffered a stroke in 2009, it soon was clear that standard rehabilitation would not repair the damage. Unwilling to accept life in a wheelchair, Gass decided his only option was to fly overseas for experimental stem cell treatment.
At clinics in Argentina, China, and Mexico, doctors injected Gass with what they described as stem cells from several sources, including fetal tissue, in attempts to reverse his partial paralysis. Clinics tout the treatments online as cutting edge and curative.
What happened to Gass next is a cautionary tale for other desperate patients seeking unproven and unregulated treatments in the murky world of “stem cell tourism,’’ warned a group of Brigham and Women’s Hospital doctors in a letter to the New England Journal of Medicine, published online Wednesday.
After scans showed something unfamiliar on Gass’s spine, where the latest round of stem cells had been injected, a Brigham doctor discovered a strange sticky fibrous growth there.
“It looked like nothing I had ever seen,’’ said Dr. John Chi, director of the neurosurgical spine cancer at the Brigham, who co-wrote the letter to the journal. “It was stuck onto the nerves and had an odd consistency.’’
Gass, 67, the former general counsel for Osram Sylvania in Wilmington, had chosen a particular clinic in Mexico in part because former San Francisco 49ers quarterback John Brodie had stroke treatment there that he considered successful.
But in the year after he returned from Mexico in September 2014, when he had his last treatment, he began experiencing extreme back pain and additional paralysis in his right leg, which had not been affected by the stroke, he said in an interview. That was what led him to the Brigham doctors for surgery last year.
Now Gass is more disabled than he was prior to stem cell therapy.
Doctors have treated Gass with radiation to shrink the mass, which has helped somewhat, but they are also searching for other solutions.
Doctors have been increasingly warning that stem cell clinics are proliferating around the world with little oversight. They are promoting their methods to patients suffering from strokes, amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease), Alzheimer’s, and other conditions for which there are few good options. Professional athletes have helped popularize the clinics by seeking out stem cell therapy for strokes and shoulder and knee injuries.
Hockey legend Gordie Howe received experimental stem cell treatments in Tijuana, Mexico, in December 2014 — treatments that his family credited with helping prolong his life after a debilitating stroke about two months earlier. He died early this month at age 88.
A paper published in 2014 in the journal Travel Medicine and Infectious Disease identified 224 websites advertising stem cell clinics in 21 countries. They most often pushed treatments for multiple sclerosis, antiaging, Parkinson’s disease, stroke, and spinal cord injury — diseases and conditions for which there is no evidence that stem cell therapy is effective.
For now, patients are relying on what they read online and athletes’ anecdotal accounts....
We know what they are not relying on.
Also see: Leaving the Nest
It's painful but part of growing up.