Controversial 'stem cell tourism' attracts ailing Americans
Todd Finkelmeyer  -  9/24/2008 6:57 am
To many scientists, those promoting what is sometimes referred to as "stem 
cell tourism" are nothing more than the 21st century's version of the snake 
oil salesman.
Fueled by sometimes desperate patients who are willing to travel the globe 
for cures, dozens of companies around the world are marketing injections of 
stem cells as life-changing treatments, or even cures, for everything from 
Parkinson's and Lou Gehrig's disease, to heart failure, spinal injuries and 
other tough-to-treat conditions.
"Medical tourism for stem cells is very controversial," said Bernard Siegel, 
executive director of the Genetics Policy Institute and the driving force 
behind the World Stem Cell Summit, which concluded its two-day run at the 
Alliant Energy Center's Exhibition Hall on Tuesday.
"If someone is a patient whom you know, a loved one who has an affliction 
for which there's no cure, should they travel if someone is offering stem 
cell treatment of some kind in Asia, central America or Europe?
"What if their physician confers with them and they find out there are some 
guidelines and informed consent, should we condemn that person for seeking a 
treatment or cure?
"Or what if the lab that's doing the procedure won't tell you what cells are 
being used and is charging $50,000 for an injection, is that fair? Should we 
condemn this as a scientific community? Should we seek to shut it down?
"This is really an important subject."
Although researchers across the United States are investigating stem cells 
and their potential use as treatment for many diseases, currently only blood 
stem cell transplants have proven beneficial to help treat blood disorders, 
such as leukemia and immune deficiencies.
Therefore, American patients seeking injections of stem cells from embryos, 
fetuses and umbilical cords must travel overseas for the controversial 
therapies because the Food and Drug Administration has yet to approve such 
treatments as safe and effective.
While it's nearly impossible to give an exact count, and based merely on 
claims made by these overseas stem cell companies, published reports 
indicate that at least a few thousand patients from the United States have 
traveled abroad to try these treatments. The going rate for these stem cell 
injections tends to run from $12,500 to $50,000.
The Web sites that generally promote these overseas stem cell therapies --  
many of which advertise clinics in China, India, Mexico and the Ukraine --  
mostly rely on patient testimonials as proof the treatments are safe and 
effective. Critics often say these Web sites have the feel of infomercials 
pushing the latest weight loss breakthrough.
One such person who sought treatment for a loved one overseas is John 
Brower. The 42-year-old retired New York City police officer traveled to the 
Dominican Republic to seek stem cell treatments for his son, Jake. Brower 
says his son developed a fungal infection in his brain, had numerous strokes 
and severe brain damage around the time of his fifth birthday.
Brower says his son was unable to speak or walk, had to be fed through a 
tube and was paralyzed on his right side.
"The doctors here recommended that I should seriously consider discontinuing 
medical treatment and letting him go," said Brower, who was attending the 
World Stem Cell Summit to sing the praises of William Rader, who gave his 
son human fetal stem cells both through an IV and by subcutaneous injections 
into the fatty tissues of the belly.
Brower mortgaged his home to pay for the first round of injections, which 
cost $30,000. Follow-up treatments through Rader's Medra, Inc., have cost 
$12,500 each. So far, Jake has had five treatments.
"We get something out of each and every one of the treatments," said Brower, 
whose son now is 9 years old. "They've literally carved him out a new 
future. He talks. He feeds himself. He laughs. He has a personality again. 
His cognitive functions improved dramatically."
To Brower, the decision to fly his son to the Dominican Republic for 
treatment was a no-brainer.
"If the medical community here had something to offer to my son, I could 
completely understand that it would be crazy for a dad to go seek something 
like this," he said. "But they had nothing to offer."
It's testimonials like this that can cause those with debilitating ailments 
to seek unproven treatments overseas.
And it's testimonials like this that also often frustrate researchers in the 
U.S.
"I would urge Dr. Rader to actually submit all his patients for 
before-and-after examinations by neurologists and so forth," said Wise 
Young, an internationally known spinal cord injury researcher at Rutgers 
University, while addressing Brower. "What we need to do is document. It 
should not just be your word, it should be documentation so that if this is 
real, the procedure should benefit a lot of other kids besides yours."
While Brower seems genuinely convinced that Rader's work is both legitimate 
and life-altering, several published reports over the years have put those 
claims in question.
According to a Washington Post article earlier this month, Rader, who is a 
psychiatrist, previously operated eating disorder clinics and reported 
medical news for a television station in Los Angeles before recruiting 
patients to the Dominican Republic from his Malibu, Calif., office and via 
the Web site of his company (www.medra.com).
Rader told the Washington Post that he has tried to educate several 
physicians about the benefits of stem cell injections but that they refuse 
to accept he has helped patients. Rader said his treatments have reversed 
Down syndrome, stopped intractable seizures in children, cured AIDS in at 
least two patients and boosted the immune systems of cancer patients 
undergoing chemotherapy.
It must also be noted that medical journals have shown plenty of drugs and 
other therapies that displayed initial promise prior to wilting under the 
rigors of placebo-controlled studies -- where some patients get the latest 
drug or treatment, and others get a sugar pill or other nontreatment.
Rader, meanwhile, told the Post he is not interested in talking to the FDA 
about conducting fully documented clinical studies because if he opens his 
work to scrutiny, the FDA and the pharmaceutical industry will squelch him.
Noted Brower, who once again came to Rader's defense: "There is no Pfizer or 
Merk to pay for these clinical trials. So how are they ever supposed to do a 
clinical trial? And then whose kid will get the placebo? Yours or mine? All 
this country wants to deal with is level, blind, random studies. And there 
isn't even one of those."
Young realizes that until American scientists start providing trials for 
therapies, people will continue to seek treatment elsewhere.
In fact, says Young, finding ways to fund these stem cell trials should be 
made a top priority.
Beyond that, he stresses the need for American doctors to screen patients 
both before they travel for overseas procedures and to monitor them for when 
they return to verify if the treatments received are working.
Young also urges those in the medical profession to do everything they can 
to educate their communities about the latest advances. Young said he 
personally spends eight hours per day talking to people on the Internet 
about a range of spinal cord and health-related issues.
"I believe medical tourism is here to stay," said Young. "And what we need 
to do is maximize its benefits and minimize its harm."
Meanwhile, at its annual meeting this past summer, the International Society 
for Stem Cell Research composed a draft set of guidelines in an effort to 
control how stem cell therapies are offered and advertised to patients. 
Those guidelines, which should be finalized in the next three months, 
condemn clinics that offer stem cell therapies outside established clinical 
trials, especially those that charge patients for unproven treatments.
"When I first started getting involved with this topic, I thought it was 
going to be a fairly clear-cut case in black and white, of essentially 
people doing mad science or exploiting vulnerable patient populations," said 
Douglas Sipp, who currently serves as chair of the International Committee 
of the ISSCR. "But as I did more research about it, I found that although 
there are certainly black and white examples out there, there also are 
equally various shades of gray in the spectrum."
In other words, while no scientists have yet verified a magic bullet of a 
cure for things like Parkinson's, Lou Gehrig's disease, heart failure and 
spinal injuries, it's also impossible to disprove all the claims currently 
being made on company Web sites around the globe.
"People will go to their church or their community to ask for money so they 
can have the opportunity to go overseas in search of that magic bullet for a 
cure," said Robin Smith, chairperson and CEO of NeoStem, Inc., an adult stem 
cell collection processing and long term storage company. "There is so much 
hope and so much promise for medical stem cell therapy. We clearly are 
behind in the United States. But we have to help people be informed and make 
decisions with accurate information."
Todd Finkelmeyer/The Capital Times

Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
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