The Myelin Repair Foundation participated in the first grassroots organized BIL:PIL conference last week in San Diego. This is an “unconference” where the passionate advocates and entrepreneurs in the health and medical research movement shared ideas & tools, found new collaborations, and vowed to take action on what they cared about.
Most of the talks were interesting, covering cool technological tools to empower patients with knowledge, medical devices, anti-aging work, or the power of personal genomes; however, I personally hoped that there would be more folks talking about bigger systemic changes needed.
Luckily, Scott Johnson was there to fill the void. He spoke about our nonprofit medical research model, describing why it is so important to individuals with any chronic disease (productive years lost, loss of years in life, pain, cost to families), the costs of the current research system, how it is broken and the way he tackled the problem with an outsider’s view and with a “clean sheet of paper.”
The entire medical research system spends billions a year in research & development where more than 1 page is published a minute — but despite all these inputs and outputs there are far too few treatments for patients.
Underpants Gnomes from South Park
A good analogy is the “Underpants Gnomes” episode from South Park. The Underpants Gnomes are businessmen of sorts, and they explain their business plan is as follows:
Phase 1: Collect Underpants
Phase 2: ?
Phase 3: Profit
If one were to map out the traditional medical research process, it would be very similar to the underpants gnomes’s’ model:
Phase 1: Pour billions of dollars into research or development
Phase 2: ?
Phase 3: Treatments for patients
Does it make any sense to use this model in medical research?
When Scott Johnson started to approach the problem of coming up with a myelin repair treatment for MS, he found that in the traditional research model there is usually NO PLAN for finding a treatment. Research is funded on an adhoc basis.
There is also NO COLLABORATION, just siloes between research laboratories. This includes industry labs. On the Pharmaceutical side there is the problem of NRDO (No Research, Development Only) which focuses on creating small changes in existing products. On top of all these barriers, there is the Valley of Death between basic science research and industry where discoveries made in academic labs are not passed on properly to the biopharma industry to be developed into treatments.
The traditional research model assumes that by just pouring money into the problem — at the tune of $95 billion a year (back in 2005) and funding scientists on an adhoc basis that this will create treatments for patients. We often hear calls for increasing funding in medical research. Sure money can help if spent properly — but it can’t speed up the development process when it is so broken.
Instead of following the “underpants gnome” model of research and giving his money to existing research organizations that ignore big question mark in Phase 2, Scott looked at the entire drug development continuum and found ways where one could speed it up in its entirety, by being clinically relevant and managing all collaborations.
At BIL:PIL, Scott talked about our results in terms of the potential drug targets, the neurological tools developed and our patents — the fact that there are many organizations looking at our model of research.
Luckily, the Myelin Repair Foundation is taking those steps in Phase II to get us closer to treatments for patients, instead of leaving it as a big question mark.
Let’s all work to remove the blockage and create ground-up solutions. 
We’ll post up Scott’s video presentation once it’s available.
Thank you to Jonathan Sheffi for being the driver and main organizer for this event and for all the sponsors and volunteers that made it happen. We look forward to participating and helping out in future BIL:PIL events.
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