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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 [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn