Stem cell groups warn of 'rogue' clinics
Patients considering going overseas for stem cell therapies should ask some serious questions before they shell out thousands of dollars for what could be an unproven therapy, the International Society for Stem Cell Research warns.
The ISSCR released this week a list of what it calls the "Top Ten Things to Know About Stem Cell Treatments" as part of a report that lists how patients can evaluate stem cell therapy clinics.
The society said it felt compelled to issue the report and to launch a website called "A Closer Look at Stem Cell Treatments" because of a growing number of aggressive marketing campaigns on the Internet and elsewhere, promoting stem cell treatments.
Canada's Stem Cell Network said it was delighted with the report, noting that many overseas clinics are making claims of cures or treatments without any scientific evidence.
"The false claims and unscrupulous methods through which some clinics attract patients has quickly become one of the most important concerns facing the field today," Drew Lyall, the Stem Cell Network's director and one of the authors of the report, said in a news release.
Dr. Irving Weissman, President of the ISSCR, explained that while stem cells "hold tremendous promise" for the treatment of many diseases, the research on whether such treatments are either effective or safe for most conditions is simply not there yet.
"There are organizations out there that are preying on patients' hopes, offering stem cell treatments – often for large sums of money – for conditions where the current science simply does not support its benefit or safety," Weissman said in a statement.
"We feel it is an obligation of the ISSCR to both a) alert patients and caregivers about clinics and other entities that are selling unproven ‘stem cell' therapies, and b) help shepherd real stem cell advances from discovery to successful patient treatments as rapidly as possible."
Among the ISSCR's "Top Ten Things to Know About Stem Cell Treatment":
- If a clinic says it can treat a variety of ailments using a single type of stem cell, that's "a major warning sign."
- Clinics that say they can use stem cells from one part of the body to treat another part are also suspicious.
- Patient testimonials are no substitute for rigorous scientific study. Be wary of those that advertise their results primarily through patient success stories.
The ISSCR notes that currently, there are only a small number of conditions that have been shown to benefit from stem cell therapy. These are mostly blood diseases, as well as corneal conditions and skin grafts. Yet many clinics are promoting cures for everything from cancer to cerebral palsy to Parkinson's disease.
Joyce Gordon, president and CEO of the Parkinson Society Canada, welcomed the new website, noting that her group's offices regularly receive inquiries from patients about the usefulness of stem cells in treating Parkinson's.
"Patients want to know whether the treatment offered by overseas clinics is effective and worth the cost. Since Parkinson's is one of the diseases unsupported by clinical evidence for these treatments, the new resource will provide more critical information so people can evaluate the claims by overseas clinics," she said in a statement.
The report recommends that each clinic be evaluated on whether it's been approved by a research ethics board in its jurisdiction, and whether it's been approved by an internationally recognized national oversight body.
The ISSCR's website includes a list of questions that patients should ask their doctors about stem cell treatments and videos from experts explaining why true stem cell therapies take so long to develop. As well, patients can ask the ISSCR to offer its review of particular clinics.
The case of an Israeli boy who developed dangerous tumours after an experimental stem cell therapy was documented in a medical journal two years ago and served as a warning to the hazards of unproven treatments.
The boy suffered from a rare but fatal genetic disease called ataxia telangiectasia. He travelled to a clinic in Moscow to have fetal stem cells injected into his brain.
Not only did the treatments fail to slow the disease, but about a year after the boy's final treatment, surgeons found two tumours pushing on the boy's brain stem and spinal cord. Testing on the tissue revealed the tumour cells were female and came from at least two donors, suggesting they were formed by the injected stem cells.