Transcripts For KQED Charlie Rose 20151105

You wake up, and its tough to get out of bed. Its not for the faint of heart. But once you are there, ive got a mission. Rose the future of medicine when we continue. Rose fudging for charlie rose is provided by rose funding for charlie rose has been provided by american express. Rose additional funding provided by and by bloomberg, a provider of multimedia news and Information Services worldwide. Captioning sponsored by Rose Communications from our studios in new york city, this is charlie rose. Rose dr. Francis collins is the direct are of the National Institutes of health. He has been described as quote the man who holds the most powerful job in american m with two projects, theasked Precision Medicine initiative and the Brain Initiative. The Precision Medicine initiative provides new approaches to Disease Treatment and prevention. It accounts for an individuals geng etics, environment and lifestyle to determine a diagnosis. The Initiative Aims to enroll one million volunteers. The Brain Initiative looks to increase Scientific Understanding of the brain and neurological diseases. Im pleased to have dr. Collins, our friend, back at this table. Welcome. Great to be back at this wonderful table with you, charlie. Weve talked about many things here. We have. Tell me about these new things. Im constantly, you know, curious about where the new is. Of course. What is Precision Medicine. Precision medicine is sort of the contrast to one size fits all medicine. Maybe its easy to say what it is by what its not. Of course weve been trying to make our medicine precise over time with variable success. But still its the case, charlie, if you go to the doctor and you need some kind of intervention or some recommendation about your health care, youre likely to get kind of a again erich recommendation based on the evidence that was built upon a again erich person. Youre not again erich. Im not either, nobody listening to this is either. So the idea of Precision Medicine is to try to combine what we are learning but with some pretty dizzeing new technologies about individual differences. Some of that is your dna, your genome some is your environmental exposure, some of it is your lifestyle, your exercise pattern, your health behaviors. If we had all of that data in one place on a very large cohort of americans and we could actually begin to find out what works for the individual, that would be a good thing. Thats one of the goals of this new initiative which is pretty breathe taking. What does that mean, what works for an individual. Well, if you are healthy, as most of us try to be, well, what should we be doing to maintain that healthiness . Pretty much now everybody gets told to do the same thing. Rose exercise, diet. Yeah, right. And dont smoke. And those are good things. But individual. Rose everything in moderation. Everything in moderation. But those things will perhaps not be the best fit for every person. There may be some people for whom its probably more important to Pay Attention to your diet than to your exercise. There may be other people whore whom smoking is like really high risk and should never have started if they do they should quit. Rose why is that . There is this thing called the genome. We all are born with a sort of deck of cards here. Its up to us how we play the cards. But that genome influences a lot of what happens to us in the course of our lifetime as far as health. An if we get sick, we also want to know how best to manage that illness, and right now a lot of that is one size fits all. You wouldnt go to the shoe store and just pick any old shoe off the rack without noticing the size. But when you go to your doctor, you are kind of getting that kind of a shoe. And it may not be right for you. If you have diabetes, what kind of diabetes do you have, you know, type 2 diabetes is probably not one disease, a paper published last week says it is at least four. Different interventions for different types would make a good outcome happen. Precision medicine is trying to take that apart. And it is particularly trying to take it apart rye now cor cancer which is something we could talk about, because that is where we are furtherrest along with this concept. Someone said to me in your profession, that in the next five to ten years well have significant curs to cancer. I totally agree with that. Rose totally agree with that. Totally agree with that. Significant cures, let me be cure. Im not going to say that every case of cancer will be cured in five to ten years. After all, cancer is probably a thousand diseases but we will have cured some that we cant cure now in the next five to ten years. Rose how many can we cure now . You know, we do really, really well with childhood leukemia. Rose that is. Hodgkins disease, we cure that almost all the time. We increasingly do well with mel noama even after had it has spread. We, of course, the death rate from cancer is actually dropping every year by about 1 percent, so we are, acrosstheboard, saving more lives from cancer. But theyre hard won those battles. To see that 1 percent per year actually drop even further, is going to take all the technologies that were talking about here and spring them bring them to bear on this with every bit of energy and determination that our nation and the world can mount. Rose so what do you do at the institutes of health . We are the largest supporter of Bio Medical Research in the world. The National Institutes of Health Thanks to the paks taxpayers what has a budget of about 30 billion a year. It goes out there to all of the finest institution, medical centers, universities, Small Businesses in this country and some outside the country that are doing this cutting edge research. So when you read about a breakthrough in cancer, immunotherapy, it is because nih paid for it it. So Francis Collins decides how to spend 30 billion in terms of pushing medical research. Not all by myself. Rose but the buck stops with you. Much of what happens, people send us, investigators send us their best ideas. And we dont tell them what those should be. Here is my grant. Here is what i could do if you give me money for five years. We put that through the peer review process, the toughest one in the world. And their peers look at their proposal and try to decide whether they think did will work or not. Then they assign it a priority score. If its in the good range, then they get funded and we say go to it and lets see what you can do in a period of four or five years which is the usual length of a grant. That is, i think, the best system in the world. Right now i have to tell you, it is a system under great stress. And the chance that that grant, that that person sent in is actually going to get funded is down to about one in six. Where it used to be one in three. You see six good projects and you will fund one of them. Yeah. And i know im not just throwing away things that dont matter. Rose you are throwing it away because we are not funding it, things that could save lives, is what you are saying. Im afraid i am saying that. Nih has lost over the last 12 years 25 of its purchasing power by research, by flat budgets that have been eroded by inflation, complicated by the is he quester that took away a billion and a half dollars on one day in march 20136789 we have not recovered in that. Our deficit in this nation dealing with our fiscal situation has had a consequence for medical research and has slowed us down for things we could have been doing by you no. We would be further along with Cancer Research than we are rose who funds it if youd we dont . Foundations . There are lots of foundations very invested in this. Rose universities. Universities, of course lets be clear. Were in an ecosystem with the private sector. And they spend twice as much in r d as nih does getting those great ideas all the way out the door to an fda approved therapeutic. And we need them and they need us. But theyre not actually in a position now to ramp up their funding either. Rose tell me about the Brain Initiative. I would love to. Rose so would i. So the brain, well, gosh, this three pounds between our ears here, made up of some 86 billion neurons, each of which has maybe a thousand connections to ear neurons. Rose how many. 86 billion. So that would be 86 trillion connections. Rose right. The most complicated structure in the known universe. And we are audacious enough to say its time to figure out how it works. Not just in a sort of general idea, but in a detailed idea. How do those skirts in the brain do what they do. How is it that im looking at you, my brain is processing your image and i know youre charlie. And how is it that you are liss egg listening to my words and hopefully theyre making sense because are you processing them. And how is it that you are tree treefing memories as are you talking about other things you heard about. Rose or the things you told me or whatever. We dont know how that works. And boy do we need to know how that works if were really going to get to the bottom of Alzheimer Disease or autism or epilepsy or traumatic brain injury or als. All of these incredibly important frustrating neurological conditions. Our problem is, we are making progress on those but not at the level we could if we really understood the basic foundations of how the brain works. And we can do things pretty well when you look at the whole brain. We have these amazing scans now whether they are mris or pet scans. And we can look at individual neurons and say whats that cell going to do if i tweak it with this neurotransmitter. T there is this huge space in between the single cell and the whole brain that we dont have much nrvetion about. So the brain Initiative Aims in a ten year period and were in the third year now, to go after that and figure out the kinds of technologies that need to be invented to be able to measure maybe tens of millions of neurons at once. Acting under some interesting stimulus, to see what they are doing. Learn the language of how the brain accomplishes these amazing things. And i think its probably the most audacious program that you could imagine. Some people have argued our brains arent complicated enough to understand our brains. Rose our brains are not complicated were not smart enough to understand our brains. Somebody who said that, but maybe computers will help us there am because we will have to model it. Rose you are funded for how many years, five. Of course at nih everything is funded for one year because the congress has to decide what are they going to do the year after. The plan for this scien tiffically which is a very bold plan put together by some extremely visionary neuroscientists including corrie bardman from right here in new york at rockefeller, lays out a plan to 2025. And we were now into that just starting the third year. And much of it in the first few years is building technologies. And then it moves into applications and ultimately to understanding disease. Rose when you look at some of the more remarkable things like gene editing. Yes. Rose what is happening there . This is a great story. I know. And it comes out of the most obscure area of basic science that you can imagine. People studying bacteria, and the viruses that infect bacteria, now who would care about that, but its sort of interesting basic science. They realize that bacteria have their own way of fighting off viruses and try to figure out how that works. Basically the bacteria have figured out how to damage the viral dna by editing it. When you learn that system and you see how incredibly elegant it is, you can just pick it up by recome by nant dna out of that bacteria system and put it almost anywhere else you want to it is a revolution. Rose what happens when you put it wherever you want to. If you are a researcher and you want to make a mouse that has a mutation in a very particular spot, that used to take you years and it was frawt with errors. Now it is a week or two of using so the called crisper. Rose what is that. It is basically a very elegant molecular surgery that because of the ability of these bacterial enzymes to home in on a genome of three billion letters and find the one that you told it to go and look at, and it goes and it finds it and then it snips it. And it either just cuts it and basically knocks that gene out or it can even, if you tweak it right, replace that letter, lets say it was an a with a c. So suppose you want to cure single cell anaemia, something i really hope we will get to. People are thinking maybe we can do that. Rose you mean trying to cure sickle cell anaemia. Yeah, you take somebody that has the disease. You use this remarkable induced fleury potent stem cell approach, ips cells where you can take a skin buy op see, grow a few cells, convince them to go back in time and become plu ry potent, they can make any cell you wanted them too. They grow foa ever. You take the enzyme and the sickle cell and you fix it. It is still that persons letter, you just change that one letter. You then grow that up into blood forming cells, give it back to the center, there it is their cells no transplant rejection. You should be then in a situation to cure the disease. Rose is it possible now. It is possible now. Rose is it being. It is become actively pursued now. It looks like it works pretty well in animals. Rose if you do that, just think of what you can do. Yes. Just think what you can do now were actually seeing though people getting concerned about wait a minute, are there concerns about not using this in certain places. Rose like designer edits. We will have a meeting later this week about how to worry about using this if it got into the germ line, that is if actually you changed the human genome in a way that got passed to the next generation, that is if you modified an embryo. I think personally thats a bad idea. We ought not to go there. Rose but give me the horror story. Well, the horror story is that we think were so smart that we think we understand how to modify human biology and make it better. Something that evolution has been working on for 3. 85 billion years. And we think in the next two months were going to make it faster and figure out how to make a better human being. So some person somewhere decides i will take a human embryo and i will use this crisper cass thing and im going to sort of mess around and try to make that person stronger. I will reduce their chances of getk Alzheimer Disease or a heart attack by manipulating some genes. Rose what is wrong with it so far. Because we dont know what we are doing, you know. The law of unintended consequences applies to the genome it is such a complicated system. When you actually con tell plate doing that, you dont know what the consequences are. An experiment that has gone wrong, you have created a human become and a human being who may reproduce. Rose with a dna that could reproduce. And you have basically also turned a child into a commodity. Rose can you do this with you know, it works reallyth well. Rose can you do it with rats. And mice too. Rose works well. It works well. Rose why wouldnt it work with humans. I think were special, charlie. Rose i do too but. I think you are working with mice or rats in a laboratory, you end up. Do two, three generations later rats who have had this done, are they do they go crazy, are they awful. Too early to know. Rose even with rats. Yeah, because weve only really been doing this a short period of time. Rose i thought that was the reason you worked with rats, you could make it faster. You could. An even if the rats didnt act odd after three or four generations, rats and humans are very different. The other thing here. Rose when you find cures in rats it doesnt necessarily transmit to humans. And unfortunately thats often the case. People would say weve cured cancer in mice so many times now, its almost like an every day event but most of those have not transmitted to humans. Rose let me test this. Suppose there you were having a inherited disease. Uhhuh. Rose take any one of the number of them. And you had the capacity to go into an embryo, an embryo knowing that with what we know now we can go in age change whatever it is, breast cancer, okay, an inherited disease. And change it. Is that okay . Again, you dont know what other things you might be affecting. And that scenario, you can do that right now without having to use gene editing with preimpli taition, genetic diagnosis where people basically create embryos in in vitro, do a diagnostic buy op see and decides which to implant. I saw something with nih about chronic fatigue. Yeah. Rose did you write something . This just happened. I have been puzzled and frustrated about how little we understand about this condition. Now just here is the theme weve been talking about. Rose chronic fatigue. Chronic fatigue syndrome, people who have that diagnosis t is a very heterogeneous collection of individuals. But the steult of medicine has just sort of defined what we should sort of limit it too is people who are profoundly affected by fatigue, oftentimes coming on after an acute. Rose what do you mean. You cant get out of bed. You are disabled. You are utterly unable to carry out daily activities. You have other things which eer shun seems to make you worse instead of better. And you have sleep disorders, sleep is not refreshing as it should be. You may have postural hypertension where you stand up, your Blood Pressure drops and then you stand up it is serious stuff. And its particularly frustrating to see cases and there are hundreds of thousands of them, of people who were healthy and then have what appears to be just a flulike illness, but they go to bed and then at the cant get up for months. So we Just Announced we are going to make a big push to try to get the answer here. Bring some of these new technologies, of againomics and metanlommics and figure out what is going on in this decision, and if we understand that maybe we would understand. Why do people on chemotherapy get fatigue. We dont really know, wouldnt it be nice to have that answer. There are so many things you can start to ask about the technology we have in front of us now. You also said an aids Free Generation is possible in the next few decades. An aids Free Generation. Absolutely. We already have made sub staks straids in that descreks by work that has shown, that for instance, if you find somebody that is hiv infected at the earliest possible moment and treat them, then they cease to be infectious to others. And so you can cut back that transmission. We already are making significant progress in terms of understanding how to have those who are at highest risk actually take chronic medication. Just like you would for other Infectious Diseases if you are going into harm away when you go to africa you make mall aria pill, for people at high risk why wait until they are infected. Do this as a preventive stratd gee. But charlie, where i think the real excitement is, at least for me is the vaccine. It has been 30 years that weve been trying to make a vaccine for hiv aids and it has been frustrating. Your body and mine just doesnt seem to know how to make the right antibodies. What does the vaccine do . The vaccine has to be able in immunity. Rose here. Not so good at that. Our Natural Immunity looks at the superficial layer of that aids virus and makes an antibody against that. And that varies so dramically, even within the same person, that its not protective. But there are a few people who make these broadly neutralizing antibodies. And by studying them, we can kind of see what the pathway needs to be to get there. But its sort of like you have to educate your immune system. Because at the moment its not wired to deal with hiv aids. But we can teach it. We can take it to school. And the School Lessons in this case might talk a couple of trips. You might have the first vaccine that gets you halfway to that broadly neutralizing antibody and the second one that gets you all the way there. But this is not Science Fiction and tony falchi is not somebody who makes priemses that he is not pretty sure of is confident we are on the path to a successful hiv vaccine within the next five or ten years. And then there will be, if we can distribute that, the end to new cases. And well need to take care of the people who are still infected. An even there, maybe well figure out how to cure them. Rose what slt most the most wildest, craze ye, not crazeie, but what is an idea that excites you even though you do not know the potential . You know, there are a lot of them but i am excited about this future image. Rose and making sure that we say to everybody watching this program, this is just an idea that might have enormous potential but no one knows exactly how. Yeah. Rose what is that . Its the empowered individual. Its individuals, you or me, who have our complete genome sequence vainl us to, who have all manner of moniters to see how our health is going. Were just starting this, of course, with these wearable apps. Environmental sensors that are telling us what is around us that might be bad for us. And all kinds of ways to find out early on if something is going wrong with you. For instance, a blood test that tells you years before that pan cree attic cancer shows up that its starting and so you get in there and fix it before its too late. Thats not entirely Science Fiction any more. A cellfree dna floating in your system might be the Early Warning sign that we are starting to discover. And if you take that scenario. All coming out of genomics. A big part, the wearable part, that is everything you can think of. And you give everybody in this nation and the world that kind of access and we transform our current medical system which is a sick care system into a healthcare system, focused on keeping people well, thats a big, bold, brave idea that i would love to see come true. And im doing everything i can to get there. And i will help you. I really really will. Bill gates has convinced me and it didnt take much. He understands this, that he is given and devoted so many billions of dollars. Question. To doing, making a dent. But he would be the first to tell you that if you are going to scale it, it has to come from governments. It really does. It does. You talked about it, you know, a 30 billion budget, for you. For nih. Right. E of our most valuablebills partners between the bill and me lindar Gates Foundation and nih, that is more than half of the money that goes into Global Health research in the whole world. Were working closely together. Between the Gates Foundation and nih you ask where are the dollars going to support Global Health research, that is more than half of the total dollars in the world from those two organizations. Rose nih and bill gates is more than half of the dollars going into Global Health. Thats right. And were working more closely together than ever. And again, i mean some people will say well, why is nih spending money on Global Health. Dont we have enough problems here at home. Well you and i both know diseases dont pay a lot of attention to those country boundaries, plus i think we have a responsibility for those who are less fortunate, who have less resources, who are suffering from illness, to reach out. I think its good for our country to be seen as not just the soldier to the world but trying to be the doctor too. And we have the resources to do that and the science is right. We should not spare efforts. Rose you need the right political leadership. Indeed. Rose thank you for coming. Great to be here. Rose Francis Collins. Back in a minute. Stay with us. Jay fishman has been chairman and c. E. O. Of travelers for more than a decade. He built it to one of the largest of property and Casualty Insurance in the united states. Earlier he was diagnosed with als. On december first he will step down as c. E. O. And remain at travelers at executive chairman. Dr. Jeffrey rothstein is director of the Brain Science institute and robert pack ard center for als research at jons hopkins and executive director of the largest coordinated and could lab rattive initiative to end als in the history of the disease. Im pleased to have them both at this table. Welcome. Thank you, charlie. Nice to be here. Rose glad to you have both back. Thank you. Rose what did you know about als. Not very much. I knew lou gehrig, i listened to the speech. I was aware of Stephen Hawking and his condition generally. And that was about it. I just,s just it isnt something that presents itself on a daily basis to people. Rose and how were you when the doctor said to you you have als. Im about 18 to 24 months post diagnosis. So i will be 63 next week. So 61, late 61 when i was diagnosed. But even that is a challenge. Because the docs will tell you that the i did cease isnt the easiest thing to diagnose. The symptoms often tell you whether you have the disease or not. So when you present, how you present, complicated issues. But im about 18 to 24 months into it. Rose but told you after how much diagnosis . Ness. Oh, a lot, a lot of tests, a lot of examinations, probably about a years worth. I thought i had a bad back. And had been to lots of different doctors and gone for lots of different treatments. One after another and then finally someone said i think its time to see a neurologist. And that was sort of the breakthrough. I had not been, there was no one who caught it in those early stages. Rose i mean how do you explain that . Its actually pretty common that it takes about a year from the first symptoms to get final diagnosis by a specialist. Partly because very early in the disease the manifestations are so protean and common. A little hand weakness. Well there are a lot of reasons we have hand weakness. And at that erlgee stage. Rose mean ug cant lift things. Trouble zippers, or keys, or might be your foot say little weak and the first indication of that is you trip. For a man it might be they trip on a golf course. And after that, they say you know, my leg is not right. And they actually blame it often on that fall. Very common. They will go to their internist, this is an uncommon disease in the grand scheme of things. And the internist will work you up for maybe a little back injury, as jay mentioned. Or if its hand, something called carpal tunnel, a very common condition. A few more months go by, maybe they get surgery t is very common to have carpal tunnel surgeonry or back surgery. That fails. The patient comes back to the surgeon and says what did you do to me. Im not getting better. Theres something wrong. And ultimately that percolates the time where a patient is finally referred to a neurologist. And thats about a year. Rose what amazes me about that is that jay would have access to the best doctors in new york by definition. You are saying the best doctors did not have any sense that maybe we should see a neurologist. Well, i cant speak for jay. And i dont want to point fingers. All can i tell is is my experience, thats very common, they are such mild things. An internist doesnt really see als, even neurologists, dont, experts do. He or she will go after what is common. It is only when the patient doesnt get better. These are diseases like alzheimer, we dont treat right away with a drug that makes you better. So you watch, you say ill do a few tests. You dont get better. You come back and that iteration just repeats it self even with the best doctors. And in my case have i what is known as the axial version, he can tell you better what that means but it is in the core. My initial weakness is in my core muscles. So my ability to stand erect, my ability to cough, to clear my chest, to sneeze, they were all sort of deteriorating. But not typical things. Ed milses and nerves. Diagram and the muscles in your ribs. Like any other muscle they deter rate and it becomes more challenging to breathe and cough. But people who arent trained in it are looking for limbs. Theyre looking for limb weakness. I didnt present any limb weakness. I was presenting, my back and i tilted to the right and im having trouble breeght. So it wasnt picked up. One of the things were working hard at now. And i have come to get involved in the world of als, it shouldnt be this hard for someone, it ought to be easy to say here are the common markers. These are the 15 things, you know, one is muscle twiching. By the way, if your muscles are twiching it doesnt mean by definition you have it. But thats a symptom that you want to have looked at. It is a red flag. There are 10, 15 red flags that should bring someone to their doctor and say somethings not right here. Early diagnosis, what does that mean if there is early diagnosis. Cause for some diseases early diagnosis of a stroke, within minutes or heart attack that is great. Because we have therapies. It makes a difference if you come in early. Especially cancer, of course. Early, what we hope is that early diagnosis will lead to then better therapies. Our problem is the other end of that. We dont have those therapies yet. So but early diagnosis, so that is me wearing a neurologist hat. But to a patient dealing with this disease and going for a year or more without knowledge of what is going on, going from doctor to doctor, early diagnosis is powerful. It puts you on the stage to say now i know what is wrong with me. Now i can go to the people that can help me deal with weaknessk while we look for drugs there are a lot of things we can do for patients that can make their life, if you will, more enjoyable and give them hope. I think it is so important. I recognize not all patients are the same. I approach this some of the best advice is to lean into the disease. The progress is inevitable. It is inevitable. The speed will varree. Patient to patient. But the needs that im going to have are clear. They are clear in front of me. And so to the extent that i can plan, anticipate, all helpful, getting for example a wheelchair fitted when you can no longer stand is next to impossible compared to trying to do it when you can move from chair to chair and try the different chairs. Silly things like that. But being able to lean into the disease really important. And too, for me, i just embrace the purpose of it. Your my mortality, it just comes on you instantly. You understand. So now the question becomes what am i going to do with the time i have left. That was the quickest thing that happened to me. A very quick personal discussion, me, myself, with what do i want to do with the time i have left and how do i want to use it. And if i hadnt known that, you dont have the opportunity to plan that way. And for me its maids a difference. But so when the doctor, you knew you had been testing for it and what you finally got was confirmation. Correct. By that time you knew pretty much everything there was to know about als, i assume. Well, i learned more since. Rose but you had a grasp. Correct, yeah. I knew of its path. I know that a, its 100 percent fail. I knew that increasing paralysis and ultimately if you are lucky, complete paralysis meaning that you survive long enough to reach that stage. Of course what ultimately kills you, is you are your breathing. You simply cant breathe. And so the ability too lean into that, noninvasive ventlation. The technology has changed enormously in the last five years and have i met remarkable people doing great work in that arena. Rose but did you go through an emotional. Not so much. And i dont im not even sure i can tell you why not. A year before i was diagnosed, if you had asked me, tell me about your life. I would say blesd, remarkably blesd. And i could tell you a hundred reasons why. A terrific family. A great job. Working with terrific people. Intellectual engage am, good stuff. I quickly said i wasnt going to let the endofmy life change the definition, or change my perspective on how i looked at the rest of it. I wasnt going to let that happen. Were all going to face this, maybe not this disease but no one gets out alive. Were all going to face it. And so i didnt. I you know, i pitched up my pants, so to speak. And said how am i going to use the time i have left. Rose and your family went through this process with you . Yeah. I, my two son, each both of whom are married, they have been terrific. One is a doctor and gets it, an engages. My wife, its more of a struggle for here, and it shows from time to time. Look, i dont have to anticipate the hereafter, she does. Right . And so. Rose she has to anticipate when you are gone. Right. And just being blunt, being a young widow, no one anticipates being that way. I would say young, but she has to deal with that. I dont have that burden. So i can get very focused on what i have left. So they have been great, better than great, more supportive than anybody deserves, really. Rose do you have hope . Well, i not for myself. By that i mean medical hope. I have no illusions that anything that is going on today will cure me. What i have hope for. Rose and no cure around the corner. There is no cure around the corner. Rose so you hope for . I want to leave a legacy. There are so i have asked myself any number of times, im not deeply religious but im spirit all, how i define that is odd. Why me. And once i get past the scientific dynamic which is random choice, stuff happens. I either have convinced myself that im being punished for having been atilla the hundred in a previous life, or alternatively i was given this so i could help do something about it. Rose lets accept the latter. Me too, thats what ive done. And so im engaged. Im engaged with my time, my resources, my energy. But moving the needle along so that once im gone, people will say, well, the couple of years that he had with us, he used it so thoughtfully and so productively. You can, you know, it happens every day. You wake up and its tough to get out of the bed. Its not for the faint of heart, but once youre there, ive got a mission. Ive got a mission. Rose and the mission is . So im trying to identify projects. Thats how i came to know jeff. Projects that i thought had promise. And so i bumped into jeff, and thats unfortunately one of those things about this disease. There is no single organized place to go. Its not like you can go to the Als Association and they say here are the ten things worth getting voferred in, but jeff is carrying a mission here to be getting individualized treatment individualized examination of als. So we went through his lab and there is motor neuron, and that mot or motor neuron could be yours, you in the dish. And so now we can begin to test things against you, not against the whole population but against you. And that then gets us into the whole notion of what is you. And so dna testing. Genomic testing, protiomic testing. But what was so compelling about it, to me, was the basic science. Lets stop trying to find a drug and throw it at it. Lets see if we can understand the genetic diej of a disease and therefore maybe have better luck at treating it. Much of what has happened with cancer. You look at what happened to cancer treatment, that is where it has gone. What is the specifics you have. How do we treat it. And which is so motivating to me. Jeff had a project and we were fortunate enough to put out a press release a few weeks ago. We raised in a year, and i would say that i raised but more than me. 20 million dollar, privately funded. So my family came in, travelers came in, my mentor bob came in, the nfl, the pga tour came in. And took, and then we met this wonderful fellow lee ri didu tto who is a mission unto himself. And we put together 20 million. And they are off in running in this remarkable baifng science study. Rose let me understand more about the basic science study. Off and running with 20 million. So jay actually gave a great introduction to what this is. And it does stem from the concept of say breast cancer, prostate cancer. When i was a medical student, a woman would have a buy op see, look under the microscope, yup, thats cancer and we treat everyone and we would fail, as many treatments would fail. But then we began to say if we look at that tissue and figure out it may look alike on the microscope but there are different kinds of breast cancers. And that lead to the identification of if you will individual kinds of mechanisms for cancer. It ultimately let to again entech drying a trying a drug for people who have herceptin reserpts an those women do very well on those drugs in a large way. But not everyone does. So that individualized approach which is now being embraced in medicine, for say cancers, that same approach, we think, has bearing for disease. Actually not just als, alzheimer. Many of these difficult diseases. And the challenge in neur lodge cake neur logic diseases, is that you have a problem with your belly, pan cree as, kidney, fine, we put a needle in and look at it. We cant do that with your brain. I cant take a sample of your brain and say this is what is wrong. But the technology changed about five, six, eight years ago. We started to learn how to make stem cells from you. And i am really getting to is i can take your blood today, and my colleagues, of course, can i make your brain cells, they may not think like charlie rose but i can make your brain cells. If you have a disease like jay i can make your als brain cells in a dish. Why is that important . Because now i can really begin to study the different what is different about you and every other patient that comes in. So this is a very grand plan. And the plan is. Rose you take the stem cell and you make, from his blood. From his blood, can i make his brain krels. Especially shalled motor neurons, the cells responsible for his disease. You create the cells, then tissue. So i have the foundation to do the following. I can then analyze those cells for as jay said the dnas, whats called genomics. They raise a lot of money i guess with the bucket challenge. Did that raise a lot of money for als research. Raised a lot of money. We dont know whether they. What was disappointing to me about that is i think that was one of the greatest grass roots efforts ive ever seen. It came from the people up. And it caught on. Lots of money raised. My initial objection was that there was no accounting. No one came back and said gee, thank you, thank you all foreign gaging, this is how much weve raised. Or then they didnt say and this is, by the way, what were doing with it. Or all sorts of rumors or stories about how much had come in. But there was no accounting for it. And i thought that was a lost opportunity. The way it came up from people, they were entitled to a response. And then accounting. And it didnt happen. You think about it demanding. They finally came up, the Als Association did publish a piece a couple of months ago, maybe three months ago, on how much at least was raised by them. Because even that is a question. You might have sent your contribution to the mda i might have to als connecticut so the money is in all different pockets. But they did come forward with an amount, over a hundred Million Dollars raised and said here is what we have done with it. Now of course you look at that and everybody will have their own view of whether that was thoughtfully invested, not thoughtfully invested. I think it could have i think it could be different. Rose so suppose you had an unlimited budget. How much velocity would that add . Thats a valid question. Im not entirely sure i could tell you a true answer. I can tell you all brains are specific. What jay has initiatedded, that would not be possible. The government wouldnt pay for this project it is well beyond the Als Association or other groups who pay, it required the ability to bring multiple people together and a business mandate. So this plan is running off the world that jay is used to. These are milestone driven projects. If people dont move fast enough, the director of this, they are getting kicked out and bringing somebody else in, this is a need to get information fast. Rose this is business rules. Yeah, and to that point, so i mentioned lee lri didu tto to you, the owner of con air, hair dryers and such. Dawcial was diagnosed when she was 41 years old. Lee has committed and pledged what i would character what anybody would characterize as an he nor enormous amount of money to medical research and really engaged. Hes taking basic business principles, collaboration, account ability, responsibility, bench marks, combined it with the best scientists in the world, and put real money behind it. And so were sitting here, he would say look, were not missing dollars, were missing ideas. Come forward with your ideas and well collaborate. So i would say its a mix of both. There are resources there which need people thinking outside the box. What i found so compelling about jeff was his passion for his could lab rattive style, bringing in other people, and thinking just outside the box. Differently than people had done before. And that is what compelled me. Are we, is it likely that well find a pathway to als that will be similar to a path way to parkinsons or similar to. Yes. Im sorry, i said that too fast. But thats actually, no question the fundamental research makes a difference in any disease. A new gene was discovered in als about four years ago and it has changed als as a field. Als is not just als, it is als in dementia. And that gene defect accounts for probably half of people who have the inherited form of als which is a large chunk. But very unexpectedly, even if you have no Family History there is a very high likelihood you will carry this gene defect without any Family History. So it is a very penetrant disease, a common mutation t is not just in als, it is in dimension, already in some parking packinsons and huntington shall muntingson huntingtons patients it has moved so fast, so quickly because of philanthropy, government moves slow. I love having government money but the discoveries which came out bay month ago in this area, teaches us that these could be targets for other diseases. And thats important. We hope for that. And sometimes we would hand wave whether that was possible. Its possible. I want to come back to one thing you said earlier, this so called voice banking, how does that work. You can talk about bumping into things. My son forwarded an article from the boston globe talking about a fellow at boston Childrens Hospital johns could fello costello who is a communications specialist. Who when you still have your voice get a microphone, relatively inexpensive and record phrases. And the early 1. 0 version of this is you record mp3 phrases. A good morning, honey, how are you . And subsequently using an i tracker computer, you can trigger those phrases, basic stuff, and instead of the voice coming out at darth vaider, it comes out as you. And so that is sort of the early stage of it. And john is, talk about another committed, passionate guy. Its moving now to where you can begin to bank words and the technology is good enough to link the words together. You are a guy who grew up in the bronx. Yup. Didnt come from a rich family. Father ran a printing press. Yeah. And what did you want to do . Well, you know, so i was, by the way i dont mean to demean running a printing press. My father paid rent and educated his kids by running a printing press. A little tiny shovment i dont think it makes it today, tiny place. I didnt have the sort of growing up experience to truthfully, to aspire to much. I know that may sounds funny but our world was pretty narrow. I wanted to get out of college and get a job and put food on the table. That was the mission. And you know, the fascinating thing to me is the connections of my life, and how you things changed. How i began to perceive the opportunities that were out there and what i could do to access them. I dont mean to sound selfish that way, but i went from being, i just have to get a paycheck and put food on the table to gee, i can really do something. Rose i can be competitive. That was a big deal. That was a big deal. It took a lot of years before you know, one of the benefits of having this disease is that i got nothing to hide. Its all out there. And so i went through a long period of time. I was a kid from the bronx. You know, who was i. I find myself years later now working for sandy weill and jamie diamon and bob lipp and im suk siding, much to my own surprise, by the way. Meaning i had grown up thinking gee, im a book keeper, an accountant. I stud studied accounting. I found myself in this crowd and the world began to change so much for me. Rose in other words, you realized that what, i want to say, i belong here because i have shown that i can do the same kienlds of things these mentors can do. Yeah. And it took yes. And it took hooking up with the right people at the right time. I had had really good jobs before. And had been successful. But it was of a different nature. When i came to work for that group, things really did change. I learned quickly what it felt like to go to work somewhere that felt good. That felt good. Well, august the work i had done before that, they were largely adversarial places. Highly personally competitive. What sandy and jamie and bob created wasnt that way at all. And it got rid of all of that noise, all of that personal dynamic of am i good enough, am i smart enough. You can imagine how many times working for jay mee that i asked myself, am i smart enough. You can imagine how many times. And you know, that is the process of growing up and maturing and seeing the world around you. And i ultimately came to the conclusion, im smart enough. Whatever that meant. Smart enough. Smart enough to work in that environment and succeed and smart enough. Rose and, and, achievement. And excellence is not just a product of iq. Well, you know, im so sandy has i thought stunning eq, sandy look sandy could be demanding. He could yell at you. He could do all those things. But in the big picture he made you feel really good working for him. There was a great warmth, almost a family sense to the company. And didnt mean it wasnt demanding. Didnt mean you didnt have to perform. But boy, he made you feel good and you wanted to come in each day and climb a mountain for that guy. And jamie with an iq that was off the charts, you know, what can you learn, look how the guy looks at problems and issues and how he jamie rolls up his sleeves and is in it. You want to learn you will roll up your sleeves and get into it. You work for sandy, you will learn how to make people feel good. You will learn that they do better when they feel good. And you combine all of these things, you know, the c. E. O. Academy at the time. It was amazing. And when you told sandy you were not going to be what he might have want you to be, what did he say . You know, he was very upset with me. He was. He was very upset. Rose because he thought were you his giend of kie and that he had partly traind you. All true. And i so i will shair with you share with you, i knew i couldnt be an effective c. E. O. At sti group, and it wasnt for lack of intellect or lack of energy. It was for lack of experience. That place was so big and so broad and so challenging. I knew i didnt have the background to do it effectively. And then at some point i really want, i aspired to run my own place. I wanted to lead. I really wanted to lead. And so when i sat down with sandy, i said to him sandy look, you were the number two guy at american express. And that wasnt good enough for you. And you decided you needed to leave. So you have got to understand my motivation here, right. You have to. He said absolutely not. And that was so that was the conversation. He was disappointed in me at that moment. And you know, listen, i gave him everything i had for the 12 years that i was there, all of it. And i wasnt the right leader there. And i knew it i knew it better than anybody else. And so it was time for me to go. Listen, i loofed working with him. What he didnt understand, that day, what he didnt understand was that it was hard to leave. It wasnt you know, when you work somewhere and we built what we built, the day i started, the day i started the stock was under 20, the day i lift it was 600, split a jusd. We had a run of success, im not just talking financial, i am talking about success. That was amazing. I loved working with him. And it was hard to leave. He just couldnt understand that i wanted to do more with my potential than just be there. And we kissed and made up and i do mean kissed and made up with sandy because thats what we do. Were terrific. Rose and jainlie same. Jamie and i were always on i talked with him last week. I felt so badly for him when he went through his own health issues. And the fact that he has come through it and come through it well. The blessings of my life, they start at family but the people i have worked with, and how they made me feel. The opportunity they gave me, is just amazing. So how request you not love him, how can you not. Rose so where are you now . Well, is first im okay. Physically its clungy and you know, i use a wheelchair when i need to i cant walk long distances. I can do some walking. Physically it is what it is, it gets worse every month. I can see it and feel it, i have another five weeks left as c. E. O. Of travelers and im loving every minute. My last for the last 40 years has been with a purpose, with a mission, i was never going to be somebody who would retire and wear bermuda shorts and play goferl. Even if i had my health that wasnt going to be me. So i was going to be engaged. So now im engaged in this mission and i get to meet different kinds of wonderful people, like jeff, like john costello. These are people with deep, personal professional commitment. Rose these are people who are working for something that is bigger than they are. You bet. Rose bigger than their personal ambitions. I tell them all the time, being the patient isnt so easy. Being the doc isnt so easy either. Because you got to deliver the news. Its difficult news. And you got to do it in a way so that the patient doesnt leave devastated. So the human aspects of delivering this dying no scis to people and how to help them through it, you got what time you have left. What do you want to do with it. And so i admire, i admire their engagement because its a tough field. Rose is there part of you, a part of you that says show, somewhere, maybe something will happen . Wince dont no, there is no i not for me and its okay. Meaning i dont so you, i know you know jimmy lee, the former investment banker. 62 years old, gets on a treadmill and goes down that day. 62. I will be 63 next week. We all face our end. I have chosen for the moment, maybe it will change in a month and i wont be as effective. I have chosen to see it as an opportunity. Thats how i wake up every day, what am i going to do today, who am i going to call, who will i hustle a few books for to do research. The legacy, all i have left, my legacy with my family is clear. Nothing can i do in the next two years will change that but the legacy i can leave to the illness that i have been dealt is substantial and im not going to lose that opportunity. Rose thank you for coming. Great pleasure. Pleasure to be with you. Rose thank you. Thank you for joining us. See you next time. For more about this program and earlier episodes visit us at pbs. Org and charlie rose. Com. Captioning sponsored by Rose Communications captioned by Media Access Group at wgbh access. Wgbh. Org nunding for charlie rose is provided by american express. Additional funding provided by angry by bloomberg, a provider of m announcer this is nightly Business Report with Tyler Mathisen and sue herera. Hitting the like button. Facebook beats earnings targets, and the stock rises, but is the highprofile company the tech stock to own right now . Starter kit. The government launches its plan to help get your nestegg for retirement growing. And medical checkup. How you can check how much your doctor gets from drug companies. All that and more tonight on nightly Business Report for wednesday, november 4th. Good evening, everyone, and welcome. Glad you could join us. Talk about making your profile more attractive. Thats what facebook just did. The social Media Company beating both profit and sales targets, and investors responded. 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