Translating innovation into new approaches for applied and clinical research
Robert Boorstin,
Senior Vice President,
Albright Stonebridge Group

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Alexandria Summit: Neuroscience 2015 – Opening Remarks

Good morning. Let me begin by thanking Joel and Lynne for inviting me here, and for the organizers who have put this together. I also want to thank this entire room of geniuses – and that’s a word that I don’t use lightly – that Alexandria has gathered together for this conference.

I can say with certainty that if it weren’t for all of you and the thousands of people who do what you do and help you out, I wouldn’t be standing here today. Now, as you may know, complimenting the audience is an old speechwriters’ trick. It’s meant to soften you up and help you feel good about me and things like that. But in this case, as Henry Kissinger once said in a radically different context, it has the added advantage of being true.

Because in this room, there are people who decipher the genetic code; who actually understand the intricacies of neurotransmitters; who make bets on ventures where other people dare not tread; who develop medications that, while imperfect, actually work; and who have devoted their lives to standing up for people like me with brain disorders. And these are diseases that confuse, that confound, and that terrify.

Your commitment and your efforts have made it possible for me to wake up every morning and go to work, to stay out of the mental hospital for 26 years, to survive various tragedies, to get married and raise children (albeit with mixed success), to make it through divorce, and then to find a second person foolish enough to want to spend the rest of her life with me.

So, a big thank you to this group for, well, my life. You should really feel good about what you’ve done for me.

All that being said, I still have one favor to ask: please make your way down to Washington, D.C., because it’s a short trip and there’s a long list of people who could really use your help.

I want now to talk to you about why I’m here. Then I want to talk very briefly about things I imagine we may not hear a lot about over the next day and a half.

I’m here because, like you, I have a deep fascination with the brain. How it works, of course, but more importantly what happens when it doesn’t. That fascination is born of personal experience. More than half a life ago, after several years of psychoanalysis and deep depression, I was diagnosed with manic depression. I had a couple of wildly psychotic episodes that led to doing time in two mental hospitals. I then sued an insurance company over failure to adequately cover mental illness.

I got involved in patient advocacy, I ran support groups for patients and their families, and then I had the special pleasure of working on mental health issues for the wildly successful Clinton healthcare reform effort.

I am also here because of my family. I am the grandchild, son, and nephew of people marked by mental illness of one sort or another. I’ve got a sister with depression, and I am the father of a child, an uncle, and cousin to others who are on the autism spectrum. Thinking carefully about the mess that is my family, I am reminded of a bumper sticker I once saw. You there, it demanded, get out of the gene pool.

On a more serious note, I am here because I’m lucky. In addition to benefiting from all your work, I come from a personal background where psychiatry has been encouraged and understood, where money for treatment has not been an object, where friends have stuck by me, and where I’ve been able almost since the day of my diagnosis to be open about my illness with my colleagues.

The same, as you know, cannot be said for millions of people who suffer from illnesses that affect the brain. So, I guess fundamentally, I’m here to speak for them.

Over the next couple of days, we’re going to listen to a lot of very smart people talk about the latest innovations in the way we diagnose, measure, and treat disorders of the brain. We’ll hear about data and technological wizardry and the kinds of new therapeutics that will blow our minds and, in some cases, actually might even help fix some of them.

That’s not what I’m going to spend the rest of my time on. Instead, I’m going to talk now about the people for whom you work so hard: the patients. And I’m going to offer five propositions that might help guide some of our thinking over the next couple of days. Consider them just a few basic ideas to start a discussion, and to make sure we don’t lose sight of why we’re here.

So, I’m going to talk about treatment and say simply it takes more than medication. I’m going to talk about policy and say focus where the need is greatest. I’m going to talk about attitudes and say let’s make being open easy. I’m going to talk about solutions and say don’t overpromise. And I’m going to talk about the future and say let’s keep taking big risks.

Let me start, as one should, at the beginning with my first proposition, it takes more than medication. Now, please don’t get me wrong – and I know that there are many drug manufacturers in this room – I believe that medication is necessary. And in today’s world, not using the best available biological or chemical solutions to treat brain disorders is, in essence, malpractice.

But what’s necessary is not necessarily enough. Why? Because, simply put, even the best drugs in the world only help people like me get to the point where we’re as miserable as everyone else in the world. Mental illnesses, brain disorders, addictions – all of these things go way beyond the brain to undercut whole lives. They seem to devote themselves to creating new levels, new kinds, and new dimensions of misery.

And that’s why things like psychotherapy, family support, community services, and even exercise are needed to keep patients on their meds in the first place, to help them cope with events that can trigger episodes, to keep them from wandering aimlessly, and to help stop them from sinking so low that they reach for the pills, the rope, or the pistol.

Second, on policy and brain disorders, let’s focus where the need is greatest. That sounds of course like the most obvious thing one could say. But remember, I’m from Washington, where the obvious is all too often overlooked by the oblivious.

So, where’s the need? Certainly among military veterans, among whom the rates of post-traumatic strees disorder and suicide have created new battlefields here at home. And in the prisons, what I like to refer to as America’s leading chain of mental hospitals, where we need to find new ways to arrest the vicious cycle that leads from the streets to the cells and back again.

And, as all of us know far too well, let’s focus on children. We need to find new ways to diagnose and prevent illnesses before they fall into a lifetime of struggle or pick up a gun and walk into a school.

Focusing on these groups means that middle-aged white guys like me, people who have access to decent health insurance and treatment, may not get quite as much attention tomorrow as we do today. Well, that’s OK.

Third, let’s make being open easy. There’s no question that in some very fundamental ways, we live in a far different, more accepting society than we did even a decade ago. If you’re looking for evidence, consider the fact that just a couple of nights ago, an African-American President stood up in front of Congress and talked about national acceptance of gay marriage. Let that sink in just for a moment.

Now, to be fair, and lest you think that I’m a “glass seven-eighths empty” kind of guy, I’ll acknowledge that society has also grown more open and accepting of illnesses like mine, manic depression. When I first went public to talk about my problems back in 1989, it was seen as something of a foolish choice. Today, however, the ranks of the publicly foolish have grown and the level of denial has declined.

But there are still things that are so feared and so foreign – illnesses whose symptoms can include violent acts, voices in one’s head, and behaviors that are just downright mysterious – there are still things so feared and so foreign that we’ve only begun to chip away at the ignorance. And lucky you, you’ve chosen to spend your lives dealing with this stuff.

I believe it’s never our place to tell someone else whether to go public about his or her illness. That’s a personal choice. But I think we all have a responsibility to make the choice to be open easier, and I thank you for doing that.

My fourth proposition is about solutions: don’t overpromise. People who carry disorders of the brain are desperate for the cure. They are anxiously awaiting the new, new thing, and at times, they have been told that it’s just around the corner. I understand that providing hope is necessary. It’s important that your patients and their families believe that things will get better. It’s vital for your funders to know that they are investing in something worthwhile. And you certainly want to do everything in your power to remove obstacles to better, safer treatment.

But let’s all pledge to talk about what’s doable, about controlling and managing these illnesses, not curing them. Let’s agree that silver bullets don’t exist. Let’s under-promise and over-deliver. And let’s let the public know that progress is going to come only very, very gradually.

Finally, my fifth point. At the same time that I argue against big public promises, I urge you to keep taking big risks. It may seem strange to promote gambling in this context. After all, we’re dealing here with science and the logic and rationality of molecules and genes and chemistry. We’re focusing on an organ of infinite complexity, and we should be taking a cautious approach when so many millions of lives are at stake.

But I think that caution in your work is the enemy of progress, and those of you in this room – scientists, funders, government officials, advocates – you know from experience that breakthroughs only really happen when you take a leap of faith. You’ve taken those leaps before, and I urge you to keep taking them. Because change, more often than not, requires a roll of the dice and a bet on something that’s no sure thing.

Let me end where I began, by thanking all of you on a personal level for the life you have given me and the help you’ve provided to my family. Because of you, I have so much greater hope for my son and the generation that will follow him, more hope than I ever thought possible. And on behalf of all those people who aren’t lucky enough to stand up here today, let me thank you for the millions of new and renewed lives your discoveries will bring. As you dissect the mysteries of the brain and point the way to the next new things here at this summit, let’s keep those people firmly on our minds.

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