I just participated in a panel discussion at the World Stem Cell Summit moderated by Lee Buckler on what patients should be thinking about as they contemplate non-compliant stem cell interventions. Also on the panel was Dr. Allan Wu. Both Lee and Al are exceptional members of the stem cell community so it was fantastic to be on the panel with them. Above is a picture of me, Lee, and fellow blogger Alexey Bersenev.
A key take home message from Al during the panel is that patients should do their best to apply common sense to their decision making processes. For example, a doctor who specializes in treating one’s left pinky, as Al said, is probably not someone you want treating you for kidney disease with stem cells.
Also, we all agreed that as much as doctors can be somewhat intimidating to patients, as much as possible patients should be asking doctors selling non-compliant stem cell treatments many questions.
Another take home message from the panel was that it’s better to talk in an approachable manner with patients and try to equip them with information rather than to be preachy with them. I really try my best in my ever-growing interactions with patients to not fall into lecture mode, but rather to talk openly and to listen with compassion. It’s about respect.
Finally, the clinical stem cell world is not strictly black and white as to compliance, but mostly varying shades of gray. This point was raised repeatedly after the session when I stayed for another half hour to field questions one-on-one with patients and other interested parties. This kind of interaction is one great attribute of the World Stem Cell Summit.
A question as seemingly simple as “what is a compliant” stem cell provider and the converse, “What is a non-compliant” provider, which one astute audience member asked me after the panel, is quite difficult to answer in concrete terms across the board. Some are clearly compliant going through the clinical trial process and communicating with the FDA. Some are clearly non-compliant over cure-alls for sale for big bucks without appropriate training or approvals. However, so many fall somewhere in between.
Despite the complexities, what a great discussion and fantastic questions from the audience. This kind of conversation needs to happen far more often!
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I do not think that there are so much shades of Grey in the clinical stem cell application but there is either succes or failure. THe Problem is proper documentation and peer reviewed publications…. but not everything that is not published is peril per se, it may be even clinical success. In todays Internet society no clinical stem cell unit can survive if they do not have successful cases, it is easy to read for everybody on the earth if other patients were satisfied or not. It is one Thing to work in a University that covers your ass but it is another Story to be out there and know that one case that goes wrong may kill your whole Project or your very existence. It is not only honey licking to have a so called for Profit clinic.
What Needs to be done is to bring the so called non compliant Groups into the boat by assisting them to properly and honestly assessing their results and make them publishable.
In my opinion there are a few clinical applications of stem cell surgery out there which are denied to the General public (patients of public hospitals) that would help many patients for reasons that are legal rather than medical and this is a Problem too. Honesty may be the solution for the Progress of stem cell Treatments as well as for many other big Problems in this world
Paul:
Congratulations on your National Advocacy Award! How cool to share a stage with Denny Sanford, Malin Burnham, Mary Ann Liebert, and Roman Reed!
Jeanne
It was very cool!
Thanks, Jeanne!
I hope you know how much I appreciate all your advice over the years! 🙂