June 5, 2020

The Niche

Knoepfler lab stem cell blog

World Stem Cell Summit Panel on Non-Compliant Stem Cell Interventions

Paul, Alexey, LeeI just participated in a panel discussion 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.

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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