(by Carey Goldberg, WBUR CommonHealth Blog, May 31, 2011) Let the historical record reflect: Last week in Boston, a cadre of some of the most powerful scientists and politicians in America declared war on brain disease.
They likened their new campaign to President Kennedy’s famous speech exactly 50 years earlier declaring his ambition to send an American to the moon. Will last week’s One Mind For Research conference prove as noteworthy a launch?
Perhaps. What worries me is that the War on Cancer seems a more apt analogy than the moon program: A broad coalition of people with a deep personal investment in beating a disease commit to pouring resources and energy into the cause. But the War on Cancer has been running for decades now, and some call its results underwhelming.
I asked California businessman Garen Staglin, who is spearheading the brain initiative along with Rep. Patrick Kennedy, where it goes from here. And frankly, I was also entreating him to overcome my skepticism and help me believe that the brain will be as conquerable as the moon. His answers, lightly edited:
Q: You gathered leaders from Vice President Joe Biden to NIH director Frances Collins at the One Mind For Research conference in Boston. You showed you could get important people into a room together. Now what?
We’re on two tracks:
In the middle of July we’re convening a conference of CEOs of pharmaceutical companies, foundations, technology people and others to sign up for a new public-private partnership that will actually be part of a new way of governing and managing neuroscience across all aspects.
We have commenced a search for our executive director, interviewing candidates around the world.
All of the scientific advisory board have committed to stay with the process. We have also commenced a working group to develop the networked Web methodologies to allow this plan to be transparent, visible and available on the Web in a working environment.
On the Website, we’re going to develop a patient registry for people to sign up and donate tissue. We hope to develop at least 1 million samples and a similar number of genome surveys. We also want people to register if they’re willing to be part of clinical trials on a disease- or non-specific basis.
And we’ll begin to develop the actual campaign itself, testing messages and doing public fundraising to begin to achieve our goal of philanthropy at a level that starts to mirror what’s going on in cancer, heart disease and AIDS.
You say the Obama administration supports your initiative. What does that mean?
Ultimately I think that means we’ll work toward either some form of mandated inter-agency cooperation from the White House up to and including a potential executive order.
It’s likely there will be legislative amendments required to accomplish the incentives we need to provide for companies to invest in this with extensions of either patent lives or something like the orphan drug laws that have facilitated more aggressive drug development for rare diseases.
And I think what it also means is that the visibility of this campaign is at the highest level of our country now, and it is important and it’s integral to the president’s objective of innovation.
Q: Please help me overcome my skepticism! We’ve had “decades of the brain” before — the brain always won.
This is the first time in history that we’ve actually developed a coordinated plan across all the disciplines. There have been efforts that started in one camp, then it’s hard to sell the other camps. We didn’t do it that way. We brought everybody together and said, ‘Develop a plan you all believe in, but this is the plan, you’ve all got to get behind this,’ and I’d say we’re 90% there.
Secondly, we’re putting in this plan what has never been in a plan: it’s the politics of neuroscience as well as the science of neuroscience.
And third, we are bringing in this whole new way of working by bringing pharma into the process now… We’re bringing them into the tent now in close collaboration with scientists.
We’re going to run this with a discipline and a vigor that is probably unique to any campaign like this.