By Jeanne Loring
There has been news over the last few days about stem cell researchers pulling out from a documentary called “The Healthcare Revolution”. First to report on June 15 was Erin Allday of the San Francisco Chronicle, followed by David Jensen’s California Stem Cell Report blog, Michael Hiltzik of the LA Times, and Beth Mole of ArsTechnica.
The documentary is a multipart series that included interviews with people designated as “Episode Experts”. I discovered last Thursday (June 13) that I was listed on the documentary’s webpage as one of these experts.
It started for me in January of this year at the Phacilitate/World Stem Cell Summit in Miami. Along with several other speakers, I was invited to be interviewed for a Doctors Channel program. The filmmaker was local and had done publicity for these conferences in the past.
Our interviews were transferred to another group, Working Pictures, whose project I did not know was funded in part by an unregulated stem cell clinic that is the target of an FDA legal action.
Early in the morning on Thursday June 13, an attorney in a lawsuit against a Florida clinic alerted me to a disturbing video and told me that I was in it. I was listed as an episode expert for Episode 2, “Cell Pioneers”. But the majority of those listed were from unregulated clinics, some of which had been specifically targeted by the FDA’s investigations.
I was mystified about how this happened, so Thursday evening I sent an email with the subject “Help! what do you know about this “documentary”?” to the 9 people on the documentary’s website whose emails I had: Bruce Levine, Evan Snyder, Larry Goldstein, Arnie Caplan, Josh Hare, Paolo DeCoppi, Tony Atala, Julie Allickson, and Maria Millan. None of them seemed to know either.
Early Friday morning (June 14), it became clearer. I received an email titled “Exciting News” from Sara Sheehan, a partner at Working Pictures, with a vimeo link to the episode I was in. I didn’t even watch the whole episode before I sent Sara a request to be removed from the video and the website- titled “Re: Exciting News-Please remove me from the video.” I wrote a long letter explaining why I wanted out, which is available on the California Stem Cell Report blog.
I sent the message at 10:40 am; eight minutes later, while I was talking to Erin Allday, the reply arrived: “We will, of course, remove you from the series entirely. We respect your concerns and will work on this immediately”.
I was very, very relieved. I checked the website later that day, and my photo was gone. Over the next few days I heard from the colleagues I’d contacted earlier, and gradually they too asked to be removed. It was fascinating to watch the “episode experts” disappear one by one from the website.
I tried watching one of the newly edited episodes. I was sickened by it and couldn’t watch to the end. I’m so glad I’m not in it.
The documentary appears to have this simple story line: courageous clinics performing miraculous stem cell therapies are being attacked by the big bad FDA (and by implication, those of us who are following the FDA regulations).
The program looks like a long commercial for these clinics, portraying them as victims of the medical establishment. They aren’t victims; this promotion is a blatant effort to get more paying customers.
Why don’t they invest in obtaining FDA approval instead of investing in promotional videos? If the treatments work as claimed, it would be easy to obtain FDA approval, and wouldn’t take long. The FDA has invited applications from these clinics and they have refused to apply. Why? What are they afraid of? I think the answer is obvious, but I won’t speculate any further about their real motives.
But we should remember that the same strategy was used to sell “snake oil,” a substance with no real medicinal value sold as a remedy for all diseases.
We are too smart to fall for snake oil. We should be too smart to fall for these schemes.
These people are in the business of making empty promises to exploit desperate and vulnerable people.