While the scientific sessions of the International Society for Stem Cell Research don’t begin until this morning, the meeting started last night with one of its most important events: a panel discussion for patient advocates and other members of the public. After presentations by the five speakers it became clear that the dichotomy between real stem cell therapies and bogus ones is breaking down. There is an increasingly large middle zone of potential therapies in sanctioned clinical trials that are not yet proven safe or effective, but usually have sound science behind them.
Kelly McNagny of the University of British Columbia led off talking about the various types of stem cells and noted that most of the current clinical trials involve adult, tissue specific stem cells. He detailed the many reasons why it has taken researchers so many years to bring these cells to the verge of routine clinical use. You have to learn how to efficiently grow them outside the body and get them to behave in a very specific way when they are transplanted into a patient. They have to know how to talk to and respond to the cells around them.
Doing all this, McNagny said, takes a village; a multidisciplinary team of researchers and clinicians. He also said it needed another component, vocal patient advocates to maintain financial support for the work, and to act as a liaison between the patient community and the research community. This call for an active patient community working closely with researchers became a theme for the evening.
Tim Caulfield of the University of Alberta, who leads a team conducting some of the most extensive investigation of unregulated stem cell clinics around the world, told the crowd of over 200 that patient groups will have to help educate those who are desperate for hope about the danger of some of these operations. He said he has tracked more than 700 clinics around the world offering to treat many different diseases while offering little scientific rational and no data on results other than anecdotal patient testimonials.
He said these clinics use the legitimate excitement about the potential for stem cell therapies to sell bogus treatments. He dubbed this “scienceploitation.” Their ads, he added, make the public take for granted the effectiveness of the supposed treatments.
The Q&A at the end of the session drew out some advice to help patients sort out claims they find on the internet. Much of what was said echoed advice found on the ISSCR “A Closer Look” web site and on our “Stem Cell Tourism” web page.