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
I had DBS for Parkinson’s disease in 2017. Wonderful experience although slightly less benefit than expected. But laughably worth more than the $60 I paid for the $150,000 procedure. My only regret today is that there are millions of people around the world untreated or undertreated for the same condition I was diagnosed with.I can’t directly reconcile these two occurrences. But I’m compelled to figure out some way of evening the unconscionable disparity. I honestly don’t know what Musk is up to. But I like the stance you’re taking. Who gives a fuck about brains if we don’t have hearts?
Well put Gavin.
One of your better efforts, young padwan
It sounds overwhelmingly like your issues are with the medical system, not Elon Musk. Why isn’t the medical system purchasing and implementing better diagnostic tools? Why isn’t the medical system completely overhaling their grossly outdated curriculums? Why isn’t the medical system spending more money on research and computation? Maybe doctors should stop grossly inflating their own salaries, start spending less money on Ferrari’s and luxury mansions, and spend more money on science and technology. It seems to me like most doctors accidently took the “hypocritical” oath.
Hello, Brandon.
You have good concerns, but the expectations that you put up are similar to asking for teleportation or telepathy at this very moment. Neither is possible at the snap of a finger as things stand currently. Elon Musk is well known for not delivering on his promises (either late, late and not up to expectation, or not at all), and sadly this is one of those instances. Big talk for what essentially constituted replication of other peoples’ research. For example, Hubel and Weisel did an experiment with a cat in which they inserted a small electrode into the visual cortex that could detect neuronal activity, triggered by a moving object. This could be seen as the precursor to the type of technology that Neuralink currently is working on. The thing is, that first cat experiment occured already in 1959, a bit more than 60 years ago. If there’s one thing that researchers generally do not lack, is creativity. In 1965 there was a crude brain-computer interface developed with EEG technology. Brain-computer interface has existed for over half a century, and the idea possibly for even longer than that.
Sadly, the harsh reality is that if researchers and medical professionals already would have thought of it as currently feasible to implement, it would have been by now. As good as all researchers within the field of medicine has a wish to aid humanity in a battle against illness, but not all goals will be reached as soon as one could hope for.
If Elon Musk wishes to act in a philanthropic manner, I’d highly suggest that he would consult experts in the research field he is thinking of, and giving grants or donations for further research in that way instead. I say that this would have been more beneficial, and unfortunately, one thing that Elon Musk is well known for is that he generates hype and oversells an idea to generate funding, where results most often are lacking.
problem with DBS is it’s economic model. There is hardly any expertise in the follow up. Even the best of surgeon often does not know what to do when a few years down t he line the system isn’t functioning and patient is sent home not even with the message ; I am really sorry, but I really don’t know why this isn’t working. So they just blame your mental state. Well, if after brain surgery hardly 4 years ago, as a 50-year old, I am allowed to be ‘ a bit under the weather’ when being sent home, not being able to walk, eat and talk?
Sounds like you are worried about your job. The tactics of the medical community in regards to learning and not just capitulating to the dollar that the neuro modulation companies provide have made DBS irrelevant.