This is an article I was asked to be a part of--More patients seek experimental stem cell therapy-the boston globe

More patients seek experimental stem cell therapy
Boston Globe
US physicians warn of dangers
By Neil Munshi
Globe Correspondent / June 13, 2008
http://www.boston.com/news/local/massachusetts/articles/2008/06/13/more_patients_seek_experimental_stem_cell_therapy/


Drew Schemera's blog, "The Journey," begins, appropriately enough, with a post detailing preflight jitters.
"I have been tossing and turning all night wondering where I get my strength, but I dig deep and find the answer, always, somewhere in my mind's abyss," he wrote just about a year ago. "A friend told me yesterday that this will be my calling when I get better to breathe life back into people and talk about my experience with this illness and my journey to get better."

Schemera, 35, was on his way to Beike Biotechnology in China for experimental stem cell therapy six months after being diagnosed with amyotrophic lateral sclerosis, commonly known as ALS, and given a life expectancy of 2 1/2 years. His seven injections cost $42,500, including travel and food expenses, and he wrote that he noticed his breathing and swallowing improved afterward.
The Connecticut resident is part of a growing - and potentially dangerous - trend that has seen Americans traveling abroad for experimental stem cell treatments not allowed in the United States.
Leading stem cell researchers say the centers that offer these treatments are exploiting desperate patients. Research, they say, has not yet yielded treatments for diseases such as Parkinson's, ALS, or spinal cord injuries.
Yesterday, members of the International Society for Stem Cell Research began the process of setting professional standards for stem cell research. The guidelines, which will be finalized by year's end, advocate peer review for research, the informed consent of all patients involved in research, and scientific justification for the work. When finalized, the guidelines may help patients decide whether the treatment they seek meets professional standards.
"Because of the spotlight on stem cells, there's been a misconception by some patients that the cure is already here," said Dr. George Q. Daley, president of the research society and head of the stem cell program at Children's Hospital Boston. "We need to be clear that the path to cures is a long and arduous one."
Eden Laboratories, which runs a clinic in Belize, would not meet the stem cell society's proposed guidelines, but still supports them.
"These standards are being put out there to help patients and help the doctors become more educated when they are helping patients," decide whether to get stem cell treatment, said William Bodley, the company's chief operating officer. "The guidelines are absolutely critical and necessary to help in this process."
The clinic has not submitted research for peer review because it hasn't seen enough patients, Bodley said. Eden's website offers patient testimonials for its treatment of ALS, multiple sclerosis, Parkinson's, and skin cancer that has spread, among other ailments.
Still, Daley cautions against any expensive, experimental treatments that offer only anecdotal evidence.
"Patients should be highly suspicious if they are being asked to fly off to far-off places that don't operate under the jurisdiction of any regulatory agency," Daley said, given that only blood stem cell transplants have demonstrated any proven treatment benefits for diseases, including leukemia.
"When we move outside that realm, everything becomes highly experimental," Daley said.
Schemera feels he did the right thing by getting treatment, he wrote in an e-mail (because speaking is difficult for him).
There were "no clinical trials in the USA of any significance and no cure on the horizon," he wrote. "I made a choice to come to China and work my butt off in therapy and change my diet, and I'm slowing it (ALS) down. I'm realistic [enough] to know that I probably will die from ALS, but I'll be damned if I'm not going down swinging! What do I have to lose?"
Daley said the task force that issued the guidelines struggled with the notion that if patients are terminally ill, they should be allowed to choose experimental treatments. Ultimately, the task force had to decide whether the risk of taking such experimental therapy outweighed the benefits - and decided it was important to emphasize how dangerous such treatment can be.
Which is exactly what Dr. Jang-Ho Cha, a neurologist at Massachusetts General Hospital, does when dealing with his terminally ill patients, many of whom suffer from Parkinson's and Huntington's disease. He has never had a patient make the trip overseas for treatment after seeking his advice, but he can understand the mindset of those who do.
"I can't completely blame people because I think it's reasonable and normal to feel very frustrated at the pace of advancement," he said. "I really believe [stem cell therapy] is going to be very powerful one day, but there are a lot of people out there who feel like they don't have time to wait."
© Copyright 2008 Globe Newspaper Company.
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