By: Alfonso Fasano & Benjamin Stecher
The following was written out of a shared belief that there are only two things that can change the world. A big army and a big idea. This is a distillation of our big idea.
Dear Elon Musk,
We are writing out of concern. Concern for ourselves, our patients, and the tens of millions of minds around the world you reach. You see, we have a problem. Patients and physicians in the neuromodulation community consistently misinterpret your public comments. It is very important to us that we do not overinflate expectations or unnecessarily hype these products beyond what is possible.
The example closest to us is Deep Brain Stimulation(DBS). DBS has been around for over 30 years now to treat Parkinson diseases (PDs), tremors, dystonias, epilepsies, obsessive-compulsive disorders, and a gamut of different kinds of pain. These indications are approved by the major health agencies worldwide and many others (e.g., Alzheimer dementia, depression, paraparesis) are presently under investigation. However, DBS is and should continue to be seen as a risky therapeutic tool that benefits some patients but harms others when proper precautions are not taken.
We need leaders in the field, like yourself, to be scientists, not salesmen.
Further complicating things is that we have no idea how to measure the impact these procedures have on the lives of patients and their families. Any patient receiving DBS carries an unexplored and highly individual set of burdens and expectations. Disappointment, depression and even suicide are becoming increasingly common. How these implanted pieces of technology impact patients’ self-image, and their place within family and societies are grossly underexplored areas that demand more research.
The fields of DBS, neuromodulation and neurodegeneration have a lot to teach the world about how human beings operate and what it is that we need going forward if we are going to continue to make progress. But, again and again we fall short. This is not just because of the complexity of the organ we are dealing with, but also because of a gross underinvestment in the following:
1. Better diagnostics – Patients, their families, and their doctors, need a much better understanding of what is happening in the brains of people affected by neurological conditions. To get there we need to invest today in better tools to explore the brain and continue the tedious work of looking for better biomarkers. Even within established indications for neuromodulation – such as PDs – there’s an immense amount of variability in presentations and outcomes. We desperately need to get better at ‘precision neurosurgery’, possibly also using the genetic makeup of individuals to predict the positive and negative effects of neuromodulation by employing so-called ‘surgicogenomics’.
2. Better understanding of brain circuitry – You are right, despite centuries of work, we still know surprisingly little about how we work. Going forward we need to throw out most of the wiring diagrams currently used to teach students and begin anew with an understanding that the brain has no boundaries or borders and that it is the oscillations and the entirety of the circuits that matter.
3. ABC, Always Be Computing – Human intelligence is reaching its limit. We need more people to do as you and many of your colleagues from the tech world have done – start to leverage what computers have to teach us on a global scale. However, it must be done with the good of humanity as the driving force, not for a few elites who hope to blast off to another planet if things get bad on the only home any of us will ever know.
4. Education, education, education. You did it for your own kids, now we need to do it for the rest of the world. Society desperately needs to focus on educating people about what matters in life. A foundation for that begins with understanding what we do and do not know about the machinery that makes us who we are – our Brains and our biology. They are the greatest stories never told. Doing so won’t bring peace, nor save anyone from death, but it can, if done properly, ground us in the realities of why and how we are where we are.
Sincerely,
AFBS
Dr. Alfonso Fasano, MD, PhD
Chair in Neuromodulation
Professor of Neurology – University of Toronto
Clinician Investigator – Krembil Research Institute
Benjamin Stecher
Author, Consultant & Patient Advocate
Brain Fables