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.
KEITH GEREIN
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