Everybody loves a good story. It doesn’t really matter if it’s true or false or somewhere in between. For stories, the truth is found in the telling – in the narrative.
When we hear a story, we’re as much captured by the way it’s told, the meaning behind the metaphors, the building of its narrative, as we are by overt content or take-away message.
An example of this playing out in regenerative medicine health policy is in the telling of my own story: I was legally blind from macular degeneration and after having stem cell treatments to my eyes I then become able to see my grandchildren for the first time. Many people have heard and been moved by my story in different settings all over the world.
In June of 2016 I was in Washington, D.C., telling my story to legislators who were considering whether or not to pass the 21st Century Cures Act, I spent five days meeting and speaking with dozens of Senators, Congressional leaders and regulatory officials, and was astounded early on when I realized that my experiences, delivered by narrative, were being projected by them into their own lives, leaving them to wonder and ask if the same treatment that I had undergone would “work for _________”.n’t merely “put a face” on it. Rather, it became the mechanism that people needed to help them experience the science in a way that meant something to them. It inspired a realistic hope.
“We both realized that the story didn’t depend on science to come to its rescue. It didn’t merely “put a face” on it. Rather, it became the mechanism that people needed to help them experience the science in a way that meant something to them“
My profound response to a stem cell treatment was resonating with most everyone who heard it, based upon our common hope of feeling better, maybe even someday being cured of untreatable diseases. The narrative was power-agnostic, easing partisan tensions and allowing us to put aside our differences and come together to do everything we could to get regenerative medicine “done” and into the mainstream of our healthcare culture.
The science, the complexities, the research and study, the marketing, distribution, safety and effectiveness, even reverse-engineering of the treatment I had were all absolutely vital. But they weren’t capable on their own of influencing the passage of the 21st Century Cures Act, and were not the central talking points that The Hill’s quest needed to pass it.
Instead, it was the story, the language of empathy, that science needed to finally drive the effort home with the hard-hitting impact to move the will of legislators.
Which leads me to a related point (that I will further clarify in my next post): A high-gravity “miracle” story like mine is emotionally powerful, and vulnerable to exploitation in more ways than one. That is why as soon as a story is finished its life-affirming task of motivating human experience to action, it must step backward, and yield to science. It must let the rigor of science prevail.
This is especially necessary within the current stem-cell arena of regenerative medicine here in the U.S. That is because it’s difficult to predict what a wonderful, expansive account might produce in the way of a patient’s expectations, a provider’s phrenetic aspirations of profitability, or a commentator’s appetite for juicy controversy, any one of which could derail the science necessary to move the amazing potential of regenerative medicine forward.
“as soon as a story is finished its life-affirming task of motivating human experience to action, it must step backward, and yield to science. It must let the rigor of science prevail”
One personal example of this is when patients, providers, and commentators ask (or don’t ask) me if they can reference my story, usually for their own agenda or benefit. I consistently say “no”, when I feel this might be the case. Still, despite my best efforts, my story sometimes gets coopted. It sadly becomes currency to some, clickbait to others.
That is why in this, my inaugural post on Regenerative Medicine News, I want everybody to remember, that story does its best work when it powerfully represents hope to people out there that matter. It must retain its own identity and impact in order to continue helping us all. For that reason, I don’t authorize its reference to enhance others’ profits, imply their legitimacy or endorse the treatments they offer. If you see or hear otherwise, you can be assured it didn’t come from me. As far as I’m concerned, the stakes are too high for that kind of nonsense, especially in a time of the rapid-firing medical revolution we find ourselves in. I want my narrative to continue effectively portraying realistic hope, everywhere needed. It’s not nearly as valuable as a currency as it is a call of action, where it can further raise awareness of how we can draw from it shared goals in anticipation of the next big advancements the field of regenerative medicine will offer to us.
Doug Oliver, Founder and Chair of The Regenerative Outcomes Foundation in Nashville, TN, was legally blind for 10 years, and had his sight restored after autologous stem cell therapy in 2015. He has since inspired millions with his story of emerging hope in regenerative medicine, and helped Senator Lamar Alexander craft key patient provisions included in the 21st Century Cures Act, which passed with historic bipartisan support, and was signed into law in December 2016.