The Current

Patient-funded clinical trials may do more harm than good

Critics argue that patient funded-clinical trials might be more harm than they're worth because they can skew the study design and conduct as well as being dangerous for the patient.
(Novastem)
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Former NHL star Gordie Howe has been ravaged by stroke in recent years — left paralyzed on one side, and hardly able to speak.

But when doctors offered to treat the 87-year-old with experimental stem cell technology in Mexico, he made the trip to Tijuana to participate in their clinical trial. And according to his son, within eight hours of his first treatment, he was starting to walk again.

It's not only Howe's apparent improvement that's attracted attention around this type of procedure, however...

Mr. Hockey's treatment came as part of a patient-funded trial. It's research that patients pay to participate in. Howe's treatment would normally cost $32,000 USD — though for him it was free, courtesy of the stem cell company.

Patient-funded trials are coming in for some serious criticism. Just last week, a group of scientists from the U.S. and Canada published a paper in the journal Cell Stem Cell arguing that patient funded trials may do more harm than good.

Dr. Jonathan Kimmelman, associate professor of Biomedical Ethics at McGill University and the Chair of the International Society of Stem Cell Research's ethics committee, is one of the authors of the paper. He says there can be a place for patient-funded clinical trials, but the studies under that model need to work in quality control similar to what's found in public or private drug development — otherwise, the scientific data coming out of these trials will be questionable. He joined us from Montreal.

Rafael Carrillo is the director of Novastem's Tijuana clinic, Clinica Santa Clarita, where Gordie Howe participated in the clinical trial. He argues that while patient-funded trials are less than ideal, they are necessary because they fill a gap for experimental treatments which Big Pharma has little incentive to finance. We reached him in Tijuana.

What are your thoughts on patient-funded clinical trials? Join the conversation on Twitter @TheCurrentCBC, Facebook, or by email.

This segment was produced by The Current's Sonya Buyting.