Congressman Patrick J. Kennedy served 16 years in the U.S. House of Representatives and is predominantly known as the author and lead sponsor of the Mental Health Parity & Addiction Equity Act of 2008. This dramatic piece of legislation provides tens of millions of Americans who were previously denied care with access to mental health treatment. Now, Kennedy is co-founder of One Mind for Research , a newly formed national coalition seeking new treatments and cures for neurologic and psychiatric diseases of the brain that afflict one in every three Americans. One Mind for Research is dedicated to dramatic enhancements in funding and collaboration in research across all brain disorders in the next decade. This historic grassroots endeavor unites efforts of scientists, research universities, government agencies, industry, and advocacy organizations across the country.
Congressman Kennedy will be the special program guest at the 2012 Morris K. Udall Awards Dinner  in Washington, D.C. on Wednesday, October 3.
PAN’s Communications Director, Carol Blymire, interviewed Kennedy about his work with One Mind for Research and his vision for the future of neurological research, treatments, and cures:
PAN: Can you tell us about the genesis of your organization, One Mind for Research?
Patrick Kennedy: I started One Mind for Research because as a [mental health] parity champion and former Member of Congress, I saw a huge need for a cause I care deeply about to be better organized. I have an appreciation for my family’s legacy and saw the aspirational power of my uncle’s [President John F. Kennedy] “moon shot” speech , and thought there was an opportunity to appeal to the same sense of aspiration with a race to inner space.
We’re at a confluence of crisis and opportunity. The crisis is the tragic experience of our returning American heroes from Iraq and Afghanistan, and the signature wound of war which is both ends of the neuroscience spectrum: traumatic brain injury and post-traumatic stress disorder. The opportunity is that research on traumatic brain injury encompasses epilepsy research, Parkinson’s research, Alzheimer’s research, autism research, and so on. The catalyst – in other words, the “Sputnik” – of this generation is research around traumatic brain injury and post-traumatic stress disorder.
For instance, when treating someone with Parkinson’s, you’re not only treating the neurological condition, you’re also treating the depression, sleep issues, and other brain-related issues. We need to learn more about how these galaxies are intertwined.
PAN: What can you do in this area as a private citizen that you couldn’t do as an elected official?
Kennedy: I see the ability to leverage my 16 years in Congress with my family’s good name, the relationships I’ve built over the course of my advocacy for [mental health] parity, and my family’s relationship with this administration and what they’ve done to build health care, as synergistic. I honestly see my time now as being much more effective because I can keep my eyes on the prize and don’t have the distractions that anybody who runs for election has to contend with.
PAN: Can you shed some light on the importance of advocacy when it comes to research funding? Do advocates’ voices really make a difference?
Kennedy: We’re stronger together than we are divided. In a time like this when there are many voices asking for research dollars … asking for education dollars … asking for defense dollars … asking for infrastructure dollars … asking for healthcare dollars … we, as a community, need to be singing off the same sheet of music. We need to be a chorus of voices across all like-minded research; we need to benefit from the combined voice of everybody else who, when you look at what divides us, doesn’t even compare to what unites us.
It’s easy for Members of Congress to not see the full weight of what we’re asking for if we’re not clear and consistent with our message; by that I mean, as a Member of Congress, I want my vote and my agenda to make everyone from the Parkinson’s community happy, as well as the Alzheimer’s community, as well as the autism community, and to be able to win the hearts and minds of all veterans groups.
Let me make a comparison to the Chamber of Commerce or the AFL-CIO. If they ask a Member of Congress “are you supportive?” that Member knows what he or she has to do to secure the support of the AFL-CIO or the vice president of the Chamber of Commerce. The agenda they have to follow to get their endorsement is crystal clear. And when times like these are upon us, with a crisis in funding and budgets that could have devastating impact on the advancement to a cure for all neuroscience, we cannot afford to be coming to Congress with what Members would see as different messages. The science has told us we’re all in this boat together. Common sense tells us we’re all in this together. To borrow a phrase: It’s the brain, stupid. We’ve got to get this done together.
Maybe it’s because I operate at the 30,000-foot level in policymaking, I get to see this in a much clearer way than do the neuroscientists in their silos. I’m used to advocating for them as a policymaker and, frankly, it’s going to be political science that’s going to unlock neuroscience. We need to think about how critical it is today to get the narrative right. We need to have a visceral message. The irony is, we’re talking about the head, but we have to reach for the heart to get our cause to be successful.
PAN: Does our current federal structure support the aspirational goals our community has when it comes to neurological research?
Kennedy: Let me give you a metaphor: in my home state of Rhode Island, there are 39 cities and towns. Until three years ago they all had their own police departments, fire departments, education departments, water departments … today, they’re all working together. Not because they wanted to, but because they needed to. Rhode Island is as parochial as a district can get, and the turf battles are so deep in each community, so the notion that you could ever have them work across town lines to combine for efficiencies of scale would’ve been unthinkable five years ago.
But, we’re in a new reality today and, as the saying goes, in crisis there is also opportunity. In this crisis we need to highlight the opportunity, which is: how do we make the best case for effectively advancing our cause in an austere environment? The way we do that is to be more efficient just like everyone else is going to be more efficient. If there’s research going on in one part of neuroscience, there’s no need to repeat it unless it’s important for scientific validation purposes. We need to devote dollars to extending our knowledge rather than duplicating knowledge. If we advocate for neuroscience collectively, the advances we make by doing them collectively will benefit all of us.
PAN: What can the Parkinson’s community learn from what One Mind is trying to accomplish?
Kennedy: We need to begin to think in a more global way about how we advocate. The Parkinson’s community has been successful in funding research that helps advance work in other disease areas. So, why shouldn’t you get the benefit of the research those other disease groups do that’s of interest to your particular population?
PAN: What is the private sector’s role in all of this?
Kennedy: My feeling is that we need to be organizing ourselves not only so that we’re more successful with government dollars, but also because we need to strengthen our case in an increasingly competitive world for scientific philanthropy. Today, we’re operating in a global environment where medical issues know no geographic boundary and to the extent we can be harnessing and leveraging the economies of scale of other budgets in a much bigger world, the closer we get to our ultimate goal: to expedite cures and more advantageous therapies. So, we really have to act like any money manager making an investment. We need to be mercenary about achieving our goals. We cannot be hung up on a style of doing business that isn’t productive anymore and where the rest of the world is going to run past us. We have competition for government dollars and philanthropic dollars. We need to be very smart about how we execute on making sure our issues prevail.
PAN: Ten years from now, where will we be in terms of funding for neuroscience research?
Kennedy: Michael Milken [philanthropist and chairman of FasterCures] recently wrote an op-ed in The Wall Street Journal  that I identified with. He helped illustrate how the issues we’re working on aren’t about just saving our loved ones, it’s about saving our economy. It’s about our intellectual capital and an investment in leadership, globally. We need to be very clear on the multiplier effect of doing the right thing. It’s not only the right thing by our mothers and fathers, sisters and brothers … it’s the right thing for our community, for our economy, and for our budget because, frankly, good investment into neuroscience is the best deficit-reduction plan no one has even bothered to consider.
Think about the cost of care to people with diseases or disorders of the brain, versus mitigating the “burden of illness,” and what you have is a small down payment with a very big return on investment. If you minimize the debilitating impact of these illnesses and diseases, you not only minimize human suffering, you also minimize the fiscal suffering that comes from not attending to better therapies and cures. All of this is within our grasp, provided we make the investments today.
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