A conversation with former U.S. Representative, and recent transplant to New Jersey, Patrick J. Kennedy on how his One Mind foundation takes aim at brain disease
On May 25, 1961, President John F. Kennedy told the U.S. Congress: “I believe that this nation should commit itself to achieving the goal, before this decade is out, of landing a man on the moon and returning him safely to the Earth.” Just eight years later—on July 20, 1969—the crew of Apollo 11 accomplished the President’s objective. On the 50th anniversary of Kennedy’s speech, his nephew—the Honorable Patrick Kennedy—made a pledge of his own by launching One Mind, a nonprofit that fights brain disease. Patrick Kennedy made time to talk about his vision with Mike May.
Mike May: When you think of New Jersey’s experts forging ahead in biotechnology, medicine and science, what do you have to say to them?
Patrick Kennedy: This is an opportunity of incredible possibility, in spite of it being a time of great peril. The challenges we have are ones that we can overcome. They’re challenges of political will. We launched One Mind on the anniversary of my uncle’s famous moonshot speech because in order to go to outer space, we needed to leverage the supercomputing power of NASA and its ability to do what’s known as systems analysis, which is really integrating the various aspects of science to achieve a goal. What we don’t have in neuroscience today is the ability to integrate all science across all the different brain disorders and to find the algorithms that are going to allow us to better identify answers to Parkinson’s by researching Alzheimer’s or traumatic brain injury or ALS and vice versa.
First, these things can be made possible through the integration of science, which currently is not the paradigm of the way NIH—the U.S. National Institutes of Health—funds these clinical trials. Second, the way NIH funds the research is incongruent with the way that FDA—the U.S. Food and Drug Administration—ultimately evaluates the research. In other words, there isn’t a common research track that ultimately can be expedited to clinical approval. If you’ve done all this great initial research, why not have the protocols embedded in it that will facilitate the learning curve for FDA to finally approve a given molecule?
M.M.: To make those changes, do we have to go back to square one in terms of building these systems?
P.K.: No, this is all about political will. It can be done. To speed it up, you could use FDA. Only the safest bets are being made, because drug companies can’t be betting on things that are not more well-developed. What we really need, especially in neuroscience, is a new area of discovery to get that new generation of medications. One way to do that is de-risking. FDA is sitting on all these data from previous clinical trials, and FDA can act as a traffic cop or crossing guard, if you will, for drug companies to know whether they should spend a lot of money on something, because maybe it’s already been explored by some other drug company at some other point. That would be of great value to all of us, and there has to be a way that can be worked out amongst the drug companies.
Also, FDA is still operating with these big clinical trials where they’re trying to test one molecule against a whole population, but the future is in having the molecule target the right subtype of the population. So there may be a lot of discoveries that we have already made that we don’t know about. In other words, a drug for a particular disorder might have been rejected because it never worked for a majority of the people or it had side effects. But maybe for people with a certain genetic type the benefits were demonstrably positive.
M.M.: That gets back to your concept of the systems-analysis approach. We hear so much about big data, and maybe lots of healthcare’s big data are already available but have not been tapped.
P.K.: That’s right. The reason I mention these, just a few of these examples, is because they don’t require us to have a whole new tranche of money. I am still a big advocate for more money for NIH, and my overall message to BioNJ and to others would be for us to have a “brain bond,” a savings bond for disorders that are the most crippling, disabling disorders to not only people but to our country. To bend the cost curve in the next few decades, we need to start tomorrow, and the way to do that is to pretend that we’re in a war. Nothing is going to wreak a bigger cost on our national security and our economy than our people being taken out by these brain illnesses. So if we treated it like the crisis that it is, we would do these savings bonds, these patriot bonds. We’ve got to win at all costs and that’s why I would say we need new financing mechanisms beyond the federal budget.
We would tap these new mechanisms, like these social innovation bonds, and we could repay these bonds simply by reducing the costs associated with treating these disorders. You could reallocate the savings begotten from reducing the costs and the disability associated with these disorders to pay for the underlying bond.
Still, we have a capitalist system. The only way we’re going to get people to invest in this space is to have intellectual property, and you’ve got to be very sensitive to how we protect that while maximizing data sharing. We just have to be very good at being a gatekeeper for who gets to interrogate the science and how they get to contribute to the clinical research findings.
At One Mind, we invite the best and brightest to look at our data as we’re developing them, and then they become part of the research because they are able to give valuable feedback. If they come up with some valuable insight, well, then you can track it and you can negotiate it with them ahead of time to say that, “If you add some value to this, we’re going to negotiate your remuneration for that value.” That’s a better way to go than everybody husbanding their data and not realizing the data’s potential, because no one bothered to connect this data with that data. That happens because everybody is so afraid that they’re going to give up their IP, but the IP might lie in the fact that you’re overlaying this data with that data. That’s where the real value comes.
Illustration by Greg Betza
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