Stem cell clinics around the world are marketing treatments directly to consumers for a range of serious conditions, including multiple sclerosis (MS), Parkinson’s disease, Alzheimer’s disease and spinal cord injury, even though there is little published evidence that such treatments clearly work.
Last year Canadian researcher Timothy Caulfield and colleagues published a snapshot of 19 online clinics offering treatments that usually involved adult stem cells from bone marrow, blood, fat or skin being injected into the recipients’ spinal fluid, bloodstream or even directly into the brain.
The websites tended to play up the benefits through patient testimonials, the paper in Cell Stem Cell journal notes. “Asymmetric portrayal of relevance of risks and benefits contributed to an overall impression that therapies were safe and effective.”
But the researchers found little if any peer-reviewed evidence for the safety or efficacy of the treatments.
Patients from the US are seeking stem cell therapies in Mexico and Costa Rica, which lie beyond the jurisdiction of the FDA, says David Harris, professor of immunobiology at the University of Arizona and director of the cord blood registry in Tucson.
“The patients have to hand-carry the stem cells to the treatment,” says Harris, who notes that patients or their families may also need to hand over tens of thousands of US dollars. “You get concerned when you have to travel outside of your country to receive these therapies and pay a large amount of money multiple times.”
Closer to home, Irish patients have previously sought stem cell treatments for MS in Holland and a company in Germany is offering to harvest stem cells from a patient’s own bone marrow and use them to treat neurological conditions.
Dr Stephen Sullivan from Trinity College Dublin says there are a number of warning signs that a company may be operating outside of regulated clinical trials. He says companies operating regulated trials should not ask for large amounts of money up front and patients should not be asked for money to partake in a trial.
People should never be told there is no risk, as there is a risk with every treatment. Clinics should cite scientific literature rather than patient testimonials that treatments work. The cells being used in the therapy or the manner in which they will be used should be well documented, he says, and patients should not need to go to a place where regulations are weak to get treatment.
Claire O’Connell