Several years ago I read a book titled “His Brother’s Keeper” by Jonathan Weiner. It’s the true story of one man’s race against time to try and find a cure for his brother, who was stricken with ALS at the age of 29. The book is subtitled, “One Family’s Journey to the Edge of Medicine”. Indeed, this is where we must travel if we’re going to solve the neurological puzzles of paralysis from spinal cord injury.
As a writer, Weiner has an amazing ability to explain the complexities of neuroscience in terms that can be readily understood by a lay reader. He also does a terrific job of portraying the impatience and urgency that patients and family members feel when confronted with the glacial pace of advancing therapies from bench to bedside. The story repeatedly raises the philosophical question of how best to advance science, and towards the end quotes Art Caplan, a bioethicist at the University of Pennsylvania:
“Should the pace of medical research be determined by people desperately afflicted and their kin? Is that the best way to move the science? My argument would be no. Just as it’s hard to do the best science when you’re heavily invested and have a financial interest in what’s going on, it’s very hard to interpret results when your vision is completely clouded up by love of your subject.”
Caplan’s point is well taken. In our own SCI community we have seen many patients spend tens of thousands of dollars on unproven therapies that provide little or no benefit. At times advocates have allowed passion to drive their research investments rather than reason.
On the other hand, to my knowledge Caplan is not living with a debilitating or life-threatening condition. It’s frustrating and tiresome to sit in your wheelchair and listen to scientists, funders, and regulators counsel patience. And of course we have the problem of our big-name charities losing sight of their initial purpose (see my previous post, “Chase the Vision, Not the Money”).
It’s time for the stakeholders in the SCI cure effort to keep watch over each other:
- For researchers to share their scientific results openly and honestly;
- For advocates to educate themselves about the science of regenerative medicine;
- For charities and patient advocacy organizations to operate with transparency and purpose;
- For regulators to consider the voice of the patient when evaluating risk and reward;
- For those living with SCI to speak up and put a face on spinal cord injury.
Kudos to Dr. Keith Tansey for writing so eloquently on this subject here. I met Dr. Tansey at Working 2 Walk in 2011, and I know that he is a compassionate professional who understands the frustrations of those living with SCI. He, too, believes that the science will advance more quickly and safely if we as a community work together, with ongoing, open dialogue and a sense that we are “Our Brother’s Keeper”.