Desperate patients seek stem-cell ‘miracle,’ but scientists warn of hidden dangers

Boca Raton parents Gary and Judy Susser say the know the hope and promise of stem-cell therapy. Nine years ago they traveled to Mexico for stem cell injections for their son Adam, who has cerebral palsy.

"Maybe it will do some good," Gary Susser said he and his wife thought at the time. They spent $25,000.

But the Sussers stopped stem cell injections in 2005, after spending about $25,000 and seeing no improvement. Now armed with more information, the Sussers are grateful the treatments didn't harm Adam, now 12. While they are advocates of "responsible" stem cell research, they warn other parents against making trips to Costa Rica, Mexico, Russia or other offshore clinics for experimental treatments.

With promising breakthroughs making the news, as well as Internet hype, desperate parents and seriously ill patients may look to stem-cell therapy as the modern miracle that could cure them. And one day, stem cells may be routinely used to repair damaged cells, improve the treatment of diseases and even cure paralysis.

But there are hidden dangers to today's stem cell treatments, both in the U.S. and offshore, scientists said at the recent World Stem Cell Summit in West Palm Beach. They pointed to reports of deaths, tumors, lumbar punctures and other potential harm, as well as vulnerable people being conned out of thousands of dollars.

Patients are "buying hope," said University of Miami scientist James Guest, working on The Miami Project to Cure Paralysis. But he and other scientists say that responsible research takes years to complete. The Miami Project, in the making for 25 years, is just now reaching the human clinical trial stage, he says.

Scientists urge consumers look for regulated clinical trials at universities and research institutions, saying that even those are not without risks.

"Clinics are operating out of loopholes, a gray area disguised as the practice of medicine," said George Q. Daley, director of the stem cell transplantation program at HHMI/Children's Hospital in Boston.

Industry researcher Douglas Sipp has kept records of more than 400 companies advertising stem cell products or procedures on websites since 2007. When he rechecked this summer, Sipp said 80 of the sites were no longer online, though they could have simply changed web addresses.

Some of the offshore clinics have been closed by individual countries after patients died, according to Sipp, who leads the research unit for Science Policy and Ethics Studies at the RIKEN Center in Japan.

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Desperate patients seek stem-cell 'miracle,' but scientists warn of hidden dangers