EDMONTON – Canadian patients seeking relief from various illnesses are among the major groups feeding a troubling growth in unproven and expensive stem-cell therapies offered at private clinics around the world, a University of Alberta researcher says.
Health law expert Tim Caulfield told a U of A audience that most such clinics are likely frauds, engaging in “science-ploitation” to persuade people to pay thousands of dollars for treatments of questionable value.
“This is a big industry. It looks like thousands of people are doing this, and the major source of patients are Canada, the U.S., and the United Kingdom,” he said Tuesday during a forum on the growing phenomenon of medical tourism. “The clinics offer therapies for almost everything, including ALS, Alzheimer’s, cancer, anti-aging, autism. We don’t even know what causes autism and yet they have a treatment for it?
“There is no proof any of this stuff works,” he said, adding that 43 per cent of patients who visit stem-cell clinics are children.
However, two Edmonton-area men challenged Caulfield during the lecture, saying they had received successful treatment for multiple sclerosis at a clinic in India.
A man who declined to give his full name said he spent $30,000 in July for travel, accommodation and treatment that included the controversial experimental procedure of opening narrowed neck veins. Doctors also grew stem cells derived from his bone marrow and injected them into his spinal cord.
The 39-year-old said the results were undeniable. A “cognitive fog” cleared almost immediately. The right side of his body, which had been partially paralyzed, regained a wide range of motion. His energy level increased dramatically, to the point that he hopes to take part in a body-building competition this fall.
“I’m a businessman, so for me it’s all about risk and reward,” he said. “I did my homework. To assume all of us who do this are stupid peasants who can’t think for ourselves, it’s insulting.”
The man said he researched private clinics for two years before deciding on one that seemed to have the top specialists and the best results. Given that the treatment he was getting in Alberta could only promise to slow the disease, he felt the $30,000 investment was worth it.
He said he was so happy with the therapy, he encouraged his friend to go to India as well. That friend, who returned two weeks ago, said the treatment also cleared his brain fog, resolved his bladder issues and allowed him to walk better.
“My left leg had been paralyzed, but when I woke up after the first treatment, I could move my whole left foot,” said the man, formerly a home inspector. “I get upset because our medical system is not helping us here at home, and now people want to take away this option from us as well.”
Caulfield said he often draws derision from patients whenever he criticizes private stem-cell clinics.
“If people go in with their eyes open, then it’s hard to argue against, but I’m worried people aren’t aware of the scientific data,” he said.
He said there is great promise that legitimate stem cell therapies will be developed one day, but virtually none are close to fruition. Unfortunately, that hasn’t stopped private clinics from trying to capitalize on the public’s fascination with the topic, which is often exacerbated by positive media coverage, Caulfield said.
He said he and his team did a study in 2008, which was repeated last year, to gauge what clinics are offering compared with what the scientific literature says. The group found the clinics use sophisticated online advertising, often using images of people in lab coats to promise their therapies as successful, safe, and routine, “which is wrong, wrong, wrong,” he said.
He said patients have suffered physical as well as financial harm, including cases where people have raised money from their friends, families, churches and communities to pay for treatments.
As for trying to control the market, Caulfield said this is difficult because it is largely international and Internet-based. He said some governments are moving toward tougher regulations and improving education, but more should be done. Among the steps, health care professionals should become more involved in the issue, and the scientific community may need to tone down its rhetoric about the promise of stem-cell therapy, he said.
Another participant at the forum, Dr. Chris de Gara, raised the issue of what happens when Alberta patients come back from a private clinic with unfavourable results and then ask the public system to fix the problem.
De Gara is part of team running a “revisional” bariatric clinic at Royal Alexandra Hospital, catering to people who have undergone anti-obesity treatments that have failed. Some have paid $15,000 to $20,000 for out-of province procedures such as a gastric bypass that often do not deal with underlying psychological or nutritional issues.
“I have three patients in hospital at this moment in time, who suffered consequences of their medical tourism,” he said. “They come to my clinic and I have to do some additional surgery at a huge cost to the system. I am responsible to the human being sitting in front of me, so I must deliver care. But at a societal level, is it up to the Alberta taxpayer to pay for things that didn’t go quite right?”
Caulfield said the issue extends to other patients, such as organ transplant recipients who come home and ask the government to pay for anti-rejection treatment.
“Where do you draw the line? We are starting to see that with, ‘You chose to smoke, you chose to overeat, you chose to be born to poor parents who didn’t go to university.’ “
Other speakers at the event included Harvard law school scholar Glenn Cohen, who talked about the challenges of curbing the illegal organ transplant market in places such as Pakistan, Bangladesh and India.
Y.Y. Chen of the University of Toronto offered a critique of the supposed benefits of medical tourism to the host countries.