of the u.s. senate floor proceedings and keep public policy events and every weekend booktv for 15 years the only television network devoted to nonfiction books and authors. c-span2 created by the cable-tv industry and brought to you as a public service by your local cable or satellite provider. watch us in hd, like us on facebook and follow us on twitter. of nick at this seth rogan testifies at a senate appropriations subcommittee hearing on alzheimer's disease focusing on a latest science and research. national institute of health's director francis collins told senators federal investment in alzheimer's research pales in comparison to how much the disease costs the country. from earlier this year this is

just under two hours. [inaudible conversations] >> the senate subcommittee -- senate appropriations subcommittee on labor health, human services, education and related agencies will please come to order. today's hearing is the sixth that this subcommittee has held since 2000 focusing on alzheimer's disease. the burden of the disease, the state of the research and the challenges we face. going back many years we heard predictions from experts about the far reaching consequences this disease will have on the quality of life of american families and the burden will place on our economy in the years ahead. last april major study predicted these consequences will be far greater than anyone previously imagined. we will hear from the author of that study on the next panel. this study commanded the

attention of the nation and the subcommittee. there are few americans whose life hasn't been touched in some way by alzheimer's disease whether through a family member or a friend. it is the most common form of dementia among older americans and its risk increases with increasing age. for those living with the disease its ravages get worse over time as does the burden on their families and on society. the number of americans living with alzheimer's has doubled since 1980. the growth will certainly accelerate as the baby boom generation continues to retire in the future. the federal government's involvement in alzheimer's disease research began in 1976 when three institutes at the national institutes of health invested $3.8 million in research into the cause of this disease. we now spend approximately half a billion dollars each year on research into alzheimer's disease. we have had some successes along

the way. the reality is we do not know how to prevent a reverse or definitively diagnose alzheimer's disease. more research is needed. this subcommittee has always adhered to not earmarking money for a particular disease, a good policy. or definitively saying what diseases money goes to. we allow the peer review process to support the most promising science. however we were able to provide the one $31 million increase for the national institute on aging in fiscal year 2014 on the this. again with the expectation that promising science in alzheimer's disease will be supported. we have a distinguished panel of experts today, scientists, ecommerce, a patients and family members and quite an audience and we welcome representatives of the alzheimer's association. some of you came a long way to

be here today. we thank you for your tireless work to educate members of congress and the press about the need to do more to help you and your loved ones. also in the audience are students i'm told from the university of virginia. these young people spending a day learning about budget and appropriations and we welcome all of youth year also. on the first panel we will hear from dr. francis collins, distinguished director of the national institutes of health, who will discuss the current state of science and what kinds of research arm most likely to benefit from our appropriations. we are also very fortunate to have dr. story landis of the institute of neurological disorders and stroke and also dr. richard hurd, the researcher who wrote the landmark study i mentioned earlier and we will be joined by two individuals

impacted by this devastating disease. finally, former congressman dennis moore of kansas is here. as a longtime colleague and friend of his i was sad to learn of his alzheimer's diagnosis as soon after his retirement from the house of representatives. it is no surprise to anyone who knows him that his first instinct was to educate others and continue serving the public through advocacy and education so we look forward to hearing from our distinguished experts and before we turn to the first panel i yield to senator brand for his opening statement. >> i will make my remarks relatively brief because i would not want to detain or delay the testimony of our distinguished experts but i very much appreciate what you just said and your willingness to conduct this hearing on alzheimer's disease. in my view this could be the defining disease of our generation. i am pleased as you indicated

have story landis testified -- dennis moore. i appreciate his desire to take his and difficult challenges and focus them on helping other individuals struggling with this horrific disease. he is advocating for those living with the disease, we need to find a cure next week. i could not agree more. mr. chairman, every 68 seconds someone in america develops alzheimer's disease. and devastating irreversible brain disease that destroys an individual's cognitive functioning including memory and fox. alzheimer's currently affects 5.2 million people in the united states and 44 million worldwide according to the alzheimer's disease international. as our population ages the number of people diagnosed after the age of 65 will double every five years while the number of individuals 85 years and older with the disease will triple by

2015. already alzheimer's is the sixth leading cause of death in the united states and there is currently no cure, no diagnostic test, no treatment. with the baby boomer generation aging alzheimer's disease becomes more prevalent than the need to confront the pending health care crisis has become ever more urgent. as you indicated the study by rand indicated the cost of dementia will double surpassing health care expenses for heart disease and cancer. alzheimer's disease defined at generation but if we focus our priorities on our research capacity it does not need to continue to be an inevitable part of the aging process. for every $27 medicare and the kids spends caring for individual alzheimer's the federal government only spends $1 on alzheimer's research. in fiscal year 2014 the on the

misappropriation bill provided for an increase in the way you describe for 1 civilian dollars for alzheimer's research and i appreciate working with you to accomplish that goal. but without a way to prevent, cure or effectively treat alzheimer's it will be difficult if not impossible to rein in our nation's health care costs. in this committee and the full committee you often heard me say i really appreciate dealing with the issue of health care and health research. health research is an opportunity for those who are the most fiscally conservative than those who are the most caring and compassionate to come together because we can save tremendous amounts of money and improve people's lives by doing so. is an opportunity for all of us to work together to find a solution. one study found that a breakthrough against alzheimer's that delayed the onset of the disease by five years would mean a total savings of $447 billion by 2015. now is a time as a nation we

fully committed defeating one of the greatest threats to the health of americans and the financial well-being of our country. 1962 president kennedy called the nation's election to reach the moon by the end of the decade. we commit ourselves to the goal of the dancing alzheimer's research with the same ambition and urgency. overs the next decade we must strive to achieve not only ineffective treatment but a cure for alzheimer's. alzheimer's is as i say the defining challenge of our generation. we need to find a cure next week. the gift we all could provide every american and every american family is a special gift. it is called the gift of hope. thank you very much. >> thank you, senator moran. we welcome our first panel, dr. francis collins, director of the national institutes of health overseeing the work of the

largest biomedical research entity in the world's, spans the spectrum from basic to clinical research, dr. francis collins is a physician geneticist's noted for his landmark discoveries of disease genes and leadership of the human genome project which he started in 1993, culminated in april of 2003 but then continued on in that capacity until 2008 and has now come back as director of the entire national institutes of health. he is elected member of the institute of medicine, national academy of sciences, was awarded the presidential medal of freedom in november of 2007, received the national member of science in 2009 and i also want to welcome dr. richard hodes. this is our primary federal agency supporting and conducting

alzheimer's disease research. as director dr. hodes overseas studies of basic clinical, epidemiological and social aspects of aging. and dr. story landis, director of the national institute for neurological disorders and stroke served as director since 2003, supports and conducts basic clinical research on the normal and diseased brain system. we welcome you all here. dr. collins, thank you for your leadership through all these years both for the cumin genome project and a 40 entire national institutes of health. welcome and please proceed. >> thank you and good afternoon, mr. chairman and members of the subcommittee. it is agreed on a to appear with you with my two distinguished colleagues. we are here to discuss the latest research into alzheimer's disease and related dementia.

before getting into the science i would like to thank you for the recent on the bus appropriation for n i h. the subcommittee came together a bipartisan way to reverse the downward spiral of support for costing us 25% of their purchasing power for research over the last ten years. difficult trade-offs did not make it possible in fiscal year 14 to completely reverse the devastating effects of the f y 13 sequester we are gratified and i h was able to turn the corner. let me begin my report on the scientific challenges and promises we face in alzheimer's by underscore all the work i am going to discuss is about helping patients and their loved ones. that is what we are committed to and we know you are too. one of the most famous of those patients is country music star glenn campbell. along with a number of you i was thrilled to be on hand last spring when glenn was honored at

the alzheimer's association gala. here is a photo of him and me with an autographed guitar pick he gave me, my most prized possessions and simon musician also. to see his great talent, a national treasure, so compromised by this devastating disease is a reminder how much is at stake. we heard the sobering statistics and they have already been cited in opening statements but the wave of diseases that break over the united states as the baby boom generation ages, 5 million americans have been diagnosed with alzheimer's disease, hundreds of thousands more affected with other types of dementia. without new scientific breakthroughs those numbers will continue to rise along with the terrible toll on our nation's health and economies that this disease creates. as you mentioned already the alzheimer's association estimates that our nation is

currently spending more than $200 billion a year on care of people with alzheimer's and those costs are projected to soar to 1 plan $2 trillion annually by 2015. to put this in context consider how much the nation is spending on medical research. $29 billion in f y 13 with 504 million of that devoted to alzheimer's disease research. we are thrilled the f y 142 this includes an additional $100 million for research including alzheimer's disease but the investment pales in comparison to the cost. in our effort to find ways to prevent, delay or treat alzheimer's and other dementiass we are bringing to bear all possible technologies from genomics to imaging to big data tools. this task is immense.

there are great many things we still don't know about how the normal brain functions level of the brain with alzheimer's. in fact this month's national geographic provides a glimpse at what researchers are doing to explore what is called biology's last frontier:the human brain. i couldn't tell notice scientific american has the brain on its cover for the current issue. as you know n.i.h. is meeting the initiative called brain research through advancing innovative narrow technologies, the acronym breen. we ungrateful for the subcommittee's support for this pioneering venture in the omnibus. the brain initiative which the president called the next great american project will create tools capable of examining the activity of the brain's billions of nerve cells, networks and pathways in real-time. that is sure to be of tremendous value is researchers working on autism, schizophrenia, epilepsy,

traumatic brain injury, depression, parkinsons' disease and all forms of dementia including alzheimer's. let me tell you what one recent find in print bring science generated a lot of excitement involves a protein, one of the major culprits in alzheimer's disease. the others amyloid. to give you a better idea how affects the brain i would like to show you this short video. i will explain what you are looking at. the normal brain cells, the protein you see here stabilize structures that are involved in internal transport which you see happening here with this amazing machine inside the cell but in alzheimer's it separates from those tubes calling -- causing them to fall apart. strands of this protein combine to form tangles with in the neuron disabling the transport system and destroying the cell

ultimately as you see in this animation. neurons in certain parts of the brain disconnect from each other eventually die causing memory loss. the effect on the brain, the brain shrinks and begins to lose function. showing you here what happens in a dance alzheimer's disease as the brain substance is gradually shrunk away by the loss of brain cells. one of the exciting findings recently is we discovered that this protein which we used to think was just inside cells and therefore inaccessible is actually transferred from neuron to neuron almost like an infection inside the brain. that may sound less scary but for us it means opportunities for therapy. proteins that spend their whole existence inside cells are hard to attack but if we confined to wait to prevent the cell to cell transmission, perhaps by blocking it with an antibody we might be able to stop alzheimer's in its tracks.

new drugs won't do a lot of the nestle identify accurately those who might benefit from it. to do that we need better ways to diagnose alzheimer's disease and do so as early as possible. until recently week and only conclusively diagnose alzheimer's after someone had died. involved examining slides of brain tissue like you see year, the classic signs of alzheimer's disease. amyloid plaques and tangles tangles. but now thanks to recent defenses in imaging technology, we can detect signs of alzheimer's inside living brains. what you see here are pets chance of two living people. on the top and alzheimer's patient whose brain lights up with markers for both, on the left and amyloid on the right and on the bottom you see a normal brain. quite a difference. importantly these scans are able to detect deposits of tower and

amyloid years before the onset of symptoms, that to improve our ability to diagnose and hopefully treat alzheimer's at a much earlier stage before so many brain cells have been lost. it may also be possible to use these scans or other biochemical measures in blood or spinal fluid to see if the new therapy is working even before it has an impact on the course of memory loss. those predictive measures are called bile markers and one of our top priorities is to find and validate those by markers the clinical research so we know treatments are working as quickly as possible. this leads me to the crucial issue of clinical trials. and to the couple years ago we focused primarily on trying to treat people with unmistakable symptoms of the defense alzheimer's, those who have already lost many of their brain cells. the results have almost been entirely discouraging. but today we are focused on

earlier intervention. many of our newest clinical trials are looking get free symptomatic patients who are at higher risk but don't show symptoms. one of these is a five your clinical trial to see if an antibody treatment that amyloid can prevent cognitive decline by setting the treatment before any symptoms appear. in a unique situation we are testing this among members of the very large family in colombia as well as some u.s. patients tiexiera dominant we inherited genetic mutation that causes alzheimer's at about age 45 and places those individuals at extremely high risk. a second study, in a symptomatic alzheimer's, will test another antibody and 1,000 volunteers age 65 to 85, these individuals to not yet had any symptoms of alzheimer's but by pets can they are found to have sufficient

amyloids in their brains to be considered at risk, like the person in the middle here, this is somebody with completely normal function but there's a lot of amyloid. that is somebody who will go on to alzheimer's? is this the moment to intervene? this is a great opportunity to try therapeutics before there has been major damage to the brain. all of these studies will hinge upon validated bio markers which is why i decided to announce the accelerating edison partnership earlier this month. and is an unprecedented collaboration between n i h and ten pharmaceutical firms which will identify drug targets for alzheimer's disease, diabetes, rheumatoid arthritis and lupus. $230 million will be invested over five years, with an eye agent industry contributing equally. for alzheimer's disease will incorporate an expanded set of bile markers in to four ongoing

trials designed to delay or prevent disease and evaluate those for effectiveness. another part of the project will develop a detailed maps of molecular network in the alzheimer's brain potentially pointing to new therapeutic targets. empowered by the $100 billion fiscal year 14 budget increase for research on diseases of aging, and i h will make major investments in cutting edge areas of the mentor research that we would otherwise not have been able to pursue, genetic analysis, of the genetics, stem cells and translation sectors. similarly we will find a significant number of investigator initiated research grants that otherwise would not have gone supported. mr chairman, members of the subcommittee, i began talking about people with alzheimer's disease. evan bayh to close with a tribute to a deeply affected group and represented by many in this room, people who care for their loved ones as they slid into deepening shadows of

alzheimer's and dementia. one such caregiver is a friend of mine, merrill, who has cared for her husband in their home for nearly 20 years as. arby was a leading investigator at nih until he began showing signs of confusion in his late 50s. this last week merrill shared with me these lines in a book about experience intitled poignantly for slow dancing with a stranger. as i write these words, a glow of light chairs the room i philip harvey. he is always present even though he is absent. the person i knew is lost but not gone. so heartbreaking and so true. what harvey has suffered, what merrill has suffered is what inspires all of us in alzheimer's research to fight back against this insidious disease as vigorously and swiftly as possible. that is our commitment and there is no time to waste.

on behalf of my colleagues thank you for this opportunity. we look forward to your questions. >> thank you very much for a very lucid presentation. when you are talking about the brain initiative by was driving to work late one day, must've been a friday or in and day of 5 coming in late and i heard you on the diane reed show talking about that and once again, i say this with all respect, you are one of the unique individuals who can take very complicated and hard to understand scientific processes and put it in language people can understand and the want to thank you for that because what you said on that show brought it home to the average person who just doesn't understand a lot of what this research is involved with so thank you very much for

that and i compliment you for that ability. we start a round of 5 minute questions. this may be a simplistic question after your presentation, but i see all kinds of plans of how to prevent alzheimer's. there is brain games for sale, articles on how to do crossword puzzle every day, there's a website suggesting supplements of vitamin e or be 12 or others too. what does the research community know about these claims? was a the best things individuals can do right now to lower the risk of the dementia or alzheimer's disease? >> those are questions on many people's mind and we have funded a lot of research in that area. i turned to my colleague to summarize what we have learned. >> thank you for the very important question. we have to make lifestyle choices every day, there is no

such thing as not making a choice. we do by our actions and no question that in general issues of health and exercise, diet are important in many aspects and they correlate to risk factors for alzheimer's disease so we know having high blood pressure or inactivity or overweight or associated with increased risk of alzheimer's disease, but the critical question you ask, do we know with certainty what activity, what exercise, what diet will decrease the probability of developing alzheimer's disease is a question being addressed by an ongoing research for which we do not currently have a definitive answer. i would emphasize there is important research going on in this area, studies looking at the defect of exercise intervention in individuals before they develop alzheimer's or at early stages of alzheimer's. in years to come we will have the results of those studies. there is a major study called wife, looking at exercising folks and the impact upon their

ability to maintain mobility and cognitive function, there are two studies funded by investigators at the university of kansas looking at precinct medical orderly systematic disease to determine whether exercise actually changes the course of the disease or changes these brain alterations we have seen. we have the ability now as we never did before to look at the ability of interventions to make a difference not just once people develop the disease and followed for years to see if the symptoms become worse, we can look before there is evidence of clinical disease and use bio markers to determine whether exercise or cognitive exercises will affect the course of those processes. in the next year we should have the answers. in the meantime although we say research does not have a definitive answer there are many good reasons to be practicing that lifestyle, we have no hesitation in recommending those.

>> former surgeon general david thatcher brought up the very important issue in the washington post that african-americans are two to three times more likely to develop alzheimer's disease than non-hispanic whites but they participate in clinical trials at far lower rates than other ethnic groups. we all know the shameful history of the tuskegee experiment so the community's level of distrust is natural and dr. thatcher referred to is that. is there anything we can do to inspire more participation by minorities in fees and research endeavors? >> i read that editorial, it was indeed compelling, a moving reminder of how important it is to focus on health disparities and that is an issue for alzheimer's disease. i will say one thing and ask hodes to say more. one of the greatest opportunities in terms of encouraging minority

participation in clinical trials is if the researchers themselves represent the diversity of our country. there is a strong reason we need to focus on improving and expanding the diversity of our biomedical workforce. we have a number of new programs that are quite bold and high personal priority for me to see if we could do a better job of recruiting and retaining and mentoring and supporting individuals from underrepresented groups. .. individuals from underrepresented groups in order to populate those clinical trial work forces with people who represent our country and would therefore be perhaps more welcoming to the groups that tentatively now are unsure if they want to join up or not. dr. hodes can tell you what we're already doing in terms of alzheimer's trials. all of our centers are engaged in that. >> we are indeed making great efforts to correct what you point out, an underrepresentation of minorities in clinical studies. all the alzheimer's disease

research centers have outreach cores. some of them, for example one in the city of chicago, happens to serve an area where some 90% of individuals are african-american. but in all cases, these outreaches are intended to maximize recruitment. we're working actively with cdc and former aoa, acl, the partners in an exercise that's called roar, which overall is attempting to increase the recruitment of older adults into clinical studies and trials with a very concrete emphasis on minorities. we have a program of centers that are particularly focused on minority ageing research and developing methods for enhancing the right liaison in communication with minority communities to increase their level of comfort, confidence, and stability as a means to recruiting them to clinical research. >> i appreciate that. i hope you'll do it very aggressively. the chair of our distinguished appropriations committee and a distinguished member of this

subcommittee was the first person to bring to this subcommittee's attention a long time ago the disparity in women in terms of research trials at nih. so i hope that we've taken a lesson from that and really become much more aggressive in including these minorities in these clinical trials. so i thank you very much. i'll turn to senator moran. >> mr. chairman, thank you. dr. collins, thank you for your testimony. we're honored to have you here. you indicated in your testimony several developments promising opportunities in this area of research in alzheimer's. let me ask you to put this in my view and again kind of a chart. where are we five years ago compared to today? are the increases in knowledge -- are they growing at a faster rate all the time? how does this look in the progress that's being made or

not being made? >> well, i love the question. thank you, senator. i think if you go back ten years, people working in alzheimer's disease were pretty darn frustrated. the ability to understand what are the molecular pathways that have gone awry in the brain to cause this condition was limited. our tools, our technologies were not very good at making that kind of comprehensive assessment. our clinical trials largely based upon hunches were turning out badly. we had a limited number of ideas about where to go next. in my view, and i've been at nih for 20 years, the last five years have been really quite a dramatic change in that environment. we have learned through a variety of approaches things that we probably didn't expect would be now in front of us this soon. for instance, what are the hereditary factors involved in this disease? it clearly runs in families. we have gone from knowing sort

of one risk factor for the late onset type of alzheimer's disease to now depending on who you ask 19 or 20 that we have. that number is growing. in fact, it will be growing rapidly this coming year in part because of the fy-'14 appropriation because we're expanding our ability to do that kind of genetic analysis. we have gone from understanding that amyloid was a player to understanding a lot more about tau and to be able to look at pathways in the brain that are really quite complex and point to other sort of nodes in those pathways that are really important and might be drugable. we have gone from having a few clinical trials focused largely on advanced cases of alzheimer's to what you heard about today, where we now, because we can make the prediction about high risk, start the treatment earlier. just like people have often said, and i'll say it now, if you try to test stattens by waiting until somebody had far advanced congestive heart failure, you would assume they

don't work because you're too late. well, likewise, if we want to have a successful treatment for alzheimer's, start while there's still lots of brain cells and see if you can protect them. so there's a sense in this community of momentum, and it's coming from imaging and genomics and clinical studies and biochemistry and behavior studies. everything sort of coalescing here. so it is the right moment to really try to provide that extra push. that's why what's happened in fy-'14 could not come at a better time. it's momentum we hope can be sustain sustained. as you know, this kind of science is not a 100-yard dash. we're engaged in a marathon. the other thing about that trajectory you're asking about, it's on an upward course. i guarantee it won't be a smooth and steady one. we'll have big moments of realization that we've learned something we didn't expect. then we'll have big disappointments where a clinical trial that looked really good somehow didn't work. it's going to be jumping around a bit, but it's headed upward. and it is my hope and my

commitment that with your help and with the amazing talent that we have in our u.s. and worldwide scientific work force we are going to tackle and win this disease battle. >> i appreciate that answer. again, you use the word hope. i always use the word hope when it comes tdidical research. what you're suggesting is that there are reasons to be hopeful. >> yes, i totally support that statement 100%. >> let me ask about a particular set of people that we care greatly about. scientists have discovered that people with downs syndrome are at increased risk for developing alzheimer's disease by the age of 40. as i understand, almost everyone with down syndrome has beta amyloid deposits in their brain. yet, only about half of those people ever develop dementia. even if do they do, they develop

plaque. so my question is, is nih exploring the question of why 50% have a different outcome, a different result than the other 50%? >> a wonderful question, senator. i just spoke this morning to the director of the child health institute about this very issue. this is another opportunity, perhaps, to try to understand this disease in a group that has such a high risk, both in terms of understanding why some development and some do not. what are the other modifiers? but also, this could be a great opportunity to try new therapeutics at the earliest stage, before the dementia has begun to actually take its toll on function. there was a workshop which was held specifically on this topic about alzheimer's and other dementias in down syndrome kids. there's a challenge here in terms of things like the informed consent. we would want to do whatever we were doing in a way that's absolutely recognizing the difference in carrying out research in individuals who may themselves not be in the best

position to give consent. we will depend on their parents. but there is intense interest on this. i would predict in the course of the next year or two there will be new initiatives focused on that very special population to see what we can learn and how we can help. >> thank you. i have senator mikulski. >> thank you very much, mr. chairman. thank you and also ranking member moran for organizing this hearing on this topic of alzheimer's. it is very special to me because my own very dear father died of the consequences of alzheimer's now 25 years ago. so i've been at this a long time. and for many of us, we've had it either in our own families or people near and dear to us, and of course there are marquee names that talk about this.

this is reagan, justice sandra day o'connor and others. really, it's -- this is an equal opportunity epidemic. it hits people at all income levels and whether you are the president of the united states like president reagan or a small grocer businessman like my father or like the men and women out here in the audience who wear the purple sash. they know this tremendous impact on family life, the family budget, and ultimately on our budget. so i think we all do need a sense of urgency about how we can come to grips with this and accelerate what we want to do. i want to welcome the witnesses here. dr. collins, dr. landus, dr. hodes. i was just at nih on monday. i'm so proud of the fact it's in maryland. i call it the national institutes of hope. the national institutes of hope.

and i think that's what brings all the men and women and family members here. my question, because we've been able to do something in this year's appropriations, and i might add every single senator up here is also a member of the appropriations committee. we can feel proud of the fact that we put close to $30 billion into nih, $1 billion more than last year. we increased the national institutes of ageing by $100 million. we've included money for the brain initiative. so we think we're making that progress. that comes to me, dr. collins, and other esteemed witnesses. we would like to be able to accelerate these breakthroughs. what you just testified seems so promising, but i feel we also need a sense of urgency because we are facing an epidemic in this country. and the impact again on family

budget and on our medicaid budget because ultimately the impact of people being in long-term care. what, dr. collins -- i remember what senator harkin and senator spector did when they doubled it. do we need more money? do we need more people going into science? what do we need to put this on the fast track so these promising breakthroughs following all the rubrics of the scientific method, how can we? because the clock is ticking. the numbers are growing. the poignancy is there. could you share how we can help move this along? >> i appreciate the question, senator. it was great hosting you at nih on monday. i think we are not at the moment limited by ideas. we're not limited by scientific opportunities. we're not limited by talent. we are unfortunately limited by resources to be able to move this enterprise forward at the

pace that it could take. and it would be, of course, great to see that achieved, and it would actually, even setting aside the pressing need for the benefits to health, would also be a nice investment in our economy since as many of you know, the way in which we put dollars into medical research pays back more than twofold in just a single year. at the moment, people who have great ideas about alzheimer's disease who come to nih with those -- and again, we have some ideas about areas that we think are exciting, but we also count on our community to come up with ideas that we, the three of us, couldn't necessarily have thought about. and to send us those. we put them through the most rigorous peer-review process. but their chance of getting funded right now is about one in six. >> one in six? >> so five out of six are going away with nothing. the community is incredibly struggling and demoralized about that. you and i looked at this survey from the chronicle of higher

education on monday that just came out indicating what's happening. investigators in laboratories all over the country -- remember, nih is not just in bethesda. most of our money goes out to all 50 state where is this research is going on. more than half of those investigators saying they basically had to let somebody go or they can't take on a student they wanted to or they're not going to start a project they're excited about but don't think they have the resources to do it. we're constraining the energy, the innovation, the creativity of the most amazing engine for discovery the world has seen, which is america's science. >> dr. collins, what you're saying is that young people are discouraged from coming forth because they don't think that there's going to be the money there to fund their project? i see dr. hodes and landus shaking their head. so we have promising ideas. people in our own country, in our own country with these ideas ready to roll. well, let me ask you this. the whole idea of doubling, i don't know if it's in our fiscal

cards. but i understand we shared an idea here that if we had stayed on the 3% growth initiated by harkin-spector, where would we be now, about $40 billion? >> if you look at that curve of what the trajectory was prior to the 1998 doubling, it was about a 3% growth rate, and that's accounting for inflation. so real growth in terms of purchasing power. if we had stayed on that curve, we would now be just at about $40 billion. rvelgs so it's $10 billion less than where we are. we're both not only at the national institutes of ageing, but as you pointed out, this could be in a variety of other institutes from dr. landsus' on neurological behavior. everything. so here's my question. i understand you have an idea that if we took inflation plus 5% for about four years, we could get to where we ought to be. >> that would, if you do the math, carry nih back up to that

$40 billion number, if it were possible to do that. again, that's a decision that is up to the congress, the administration, the american people. but i must say from my perspective, the best thing we could do for science would be to get on that kind of a stable, predictable trajectory so we can plan more than three months at a time, so we can actually tell young people who are coming into the field there's a career for you. america is going to invest in this. you can count on if you have a great idea you're going to be able to be part of an adventure that is going to be exciting and world changing. right now people aren't quite sure. this up and down and uncertainty has really done quite a lot of damage to the momentum. >> well, thank you, dr. collins, and also the wonderful people there. my time is up. i look forward to really -- this seems to be an achievable goal if we put our minds to it. >> thank you, senator. >> thank you, senator mikulski. and senator shelby. >> thank you. dr. collins, i just want to share some statistics i have and see if you agree with them.

i bet you would, but i don't know. that alzheimer's is the only cause of death among the top ten causes in america without a way to prevent it, cure it, or even slow its progressions and so forth. is that true -- basically true here in america? what about some of our european countries like germany and england, france, switzerland, more industrialized countries. are some of these statistics, if you have some prevalent there too? >> yes, sir, they would be. the alzheimer's epidemic is not just the u.s. it's worldwide. it's a function of the ageing of our population, which is by the way a good problem that medical research has contributed to. 100 years ago, alzheimer's was barely known because people didn't live long enough to get it. now we've created a wonderful possibility of longer life, but with it has come this new

responsibility to do something about alzheimer's. >> so some of us that hope to be in the 90s some day, the good chance we might have symptoms of it or even have some of it or have acute cases, is that correct? >> dr. herd, who's in the second panel in the study, he published in the new england journal, kind of went through those. as i recall, people in their 90s, the incidence of alzheimer's or some form of dementia is up there in about 30%. >> tell us again about how some of the translational research that's going on at nih hopefully will affect maybe a slowdown or a cure for this. >> well, translation is the process of going from basic science diskorys, translating those into clinical benefit. that is a major focus of all of the parts of nih, all 27 institutes have an investment in that. i think i'll ask dr. hodes to give a quick snapshot of some of the most exciting areas of

translation we're pursuing right now. >> thank you. i can really organize thoughts along the the lines of dr. coll response to the areas of hope and progress over the past five or ten years because they really do range from basic discovery through their translation. the level of basic discovery noted, for example, the number of new genetic risk factors and protective factors we're finding. with funding that was made available this year we can expand new analysis, contrasting what goes on in a normal brain and diseased brain and these are identifying critical points that seem to be central to disease, we can test that hypothesis by tracking an intervention of a drug or specific molecule, find out in a single cell or animal model if that's correct. for translation to emphasis what

dr. collins has noted we now have the capability of beginning interventions at a stage which we can track disease long before extensive cell death. we can track the effect justifiness of treatment through biomarkers. biomarkers are what we know now and as we learn about the progress of disease. everything is about translation and in fact in the planning process now and years beyond with the benefit of this increased funding by appropriation we'll be looking at precisely the right balance of initiatives across this whole spectrum from discovery, to translation, to clinical trials. this is an ongoing effort. we'll meet periodically with the best minds in the nation and internationally to revise those plans, but translation is what is primarily in mind for this whole effort and i think progress at each of tlefls from basic science through clinical trials will support acceleration

with full utilization of the resources made available to us. >> let me add one other translational thing that's exciting and that's stem cell. to take a skin biopsy or skin sample and by adding four genes convince those cells to go back in time. then having achieved that, add a certain number of growth factors and convince those cells to become neurons. you can take somebody with alzheimer'sand study their neurons. it's a disease in a dish. you can tell there's a difference in those neurons if it came from somebody with alzheimer's versus somebody who doesn't. to understand the disease in a system where you can work closely with it and use it as a drug screen because you could then take 1,000, 100,000 drugs which of these make the alzheimer's cells make them look

like normal neurons. >> one last question, my time super. in your research, do you do research into animals that live longer than others and see if there's some corresponding problems with their ageing process? if so, which could you speak to that. >> this is the central role of the institute of ageing, a question of longevity. >> go ahead, doctor. can you? >> looking at varied species with different life spans and expectancies is an important part of the research that's ongoing and is still a mystery which is unraveling. for example, we know that examples have been given for different kinds of clams that live in the same environment. some species of clams will have a life expectancy of nor than a year two. others 500 years.

the longest life expectancy of any animals. try to unz that. comparativ comparative. those with single or multiple genetic changes we can extend their life span several fold. maybe three, four, six or ten fold. now, that, obviously, reveals something about the basic pathways that determine health and life expectancy and now the real promise and excitement currently is translating that to the equivalent pathways in humans to understand whether manipulating those pathways will improve health and life span. very informati very informative area of research. >> mr. chairman, thank you. thank you all for joining us today to discuss this situation.

i am reminded that at the university of mississippi dr. arthur embarked upon a study of the heart and flowing from the research that he managed and was in charge of at the university, a textbook was written and great strides were made in understanding and prescribing changes in life styles and medications that could have this effect or that effect on the human heart. is it time now for us to encourage and identify someone or some place where a crash course in research and emphasis on one element, this horrendous disease called alzheimer's can be undertaken maybe with the hope of marshalling the best

minds we have and techniques we have for research and take one step in the future where your name might be on a textbook? what's your reaction to that? do we have the capacity to do that? what amount of funding should we urge the senate to consider appropriating for such a crash course endeavor? >> interesting question. think back about the incredible impact that the doctor had and reverberates down through the decades what we understand about the heart. over the course of those decades we have moved more and more into a realization that for the current challenges it's bringing discipli disciplines together. certainly in alzheimer's disease the idea you can bring together people who know something about neuroscience, people who know something about clinical

medicine, people who know about imaging technologies, people who are engineers, robotics experts, big data is a big part of this now. that's where a lot of the excitement is. increasingly what we need to do, the modern version is to come up with teams that are made of many brains sort of working together and that is very much the way science has now proceeding. the brain initiative which dr. landis co-leads for us is a great example of how to achieve that. maybe you can say a word about how that is coming together that reflects a change in the dynamics. >> it's very clear that we made excellent advances in understanding brain structure. we know we have crude wiring diagrams for the brain but we don't know how information is processed along those wires, how the vision of a rose actually

gets translated through many, many different way stations in the brain to recognition that this is a rose and the expectation it will smell sweet. what we really need to do to understand how the circuits work, the organization of brain, brain cells is to bring together neuroscientists, computational people, physicists, chemists, engineers to work together develop tools that we can then apply to answer those questions about how brain circuits really function and that obviously starts with normal brain circuits but what we learn from understanding normal brain function will have significant implications for diseases like alzheimer's, other kinds of dementia, park joininson's dise and epilepsy. >> yes. first i have to agree the appreciation for the remarkable

family. but in line with your suggestion of a new kind of center that will allow a translation from basic observation through pre-clinical observations the very existence of the additional appropriation this year has led us to begin -- set aside funds for translation centers, the concept approved this morning by our advisory council, concept developed and now implemented in the context of funds available. it's intended for the sort of thing you mentioned, bring together as dr. collins mentioned individuals from multiple disciplines to look at new ways to integrate and accelerate in this area. >> thank you very much. thank you, mr. chairman, for calling this hearing. >> thank you. senator kirk. >> mr. chairman, i just wanted to highlight and praise dr.

collins for the a.m.p. effort that brings together ten pharmaceutical companies. one headquartered in illinois. biogen. smith kline, johnson & johnson. institutionally these are all shareholder sponsored entities who all are going to be very interested in bringing something to market eventually which actually means actual patients will be helped. and not 25 year -- with all these institutions coming in to play they are only interested in the clinical application of what they find. and for a lot of the people, i'm sure that's where they are most focused on. >> senator, i appreciate your raising a.m.p. because i'm personally very excited about this and put close to three

years in trying to build the momentum and was thrilled that it was possible to announce this just a couple of weeks ago. it is unprecedented to have nih and academic researchers getting together around the same table with equal financial contribution, with these ten pharmaceutical companies to say this is a hard problem let's work on it together. and with agreement that all the data is going to be publicly accessible. so we're calling this no longer a competitive part profit sees, this is pre-competitive. but the opportunities now because of the proliferation of discoveries to move those to the clinic has never been greater but overwheming to see how to do that and those ten companies came to the conclusion no one single of them could do this in the kind of time frame that's necessary. let's get together and do it as a team. and recognize that once we've

done this pre-competitive part the coerce going to jump in and going to race each other to try to get to the end point of having an fda you a proved drug and we want them too. that part of competition is how we get to ultimately the treatments people are waiting for. it's an exciting model. never been tried like this. watch this closely. we put ourselves in a position to deliver on some ambitious milestones. i think we'll get there. it will be great to mix these cultures together. the culture of the academic scientist and private-sector scientist with different kinds of ideas but agreeing as deep as their dna that what they are really at here is to try to solve problems and help patients. >> thank you. >> and i just want to make clear, this information is shared across all the companies? >> absolutely. >> the public and everybody? >> some of the companies initially like why should we join because if we sit on the outside and watch we'll still see the data, right?

>> yeah. they will sit on the outside. if you're on the outside you're not actually able to steer the project, you're not able to say why don't we try that. being part of the team is going to be significant and useful and i think very exciting for the participants. i should have said alzheimer's is one of the projects that was chosen. we had to figure out which of these various disease opportunities where the companies excited enough to put money on table and alzheimer's was one of those. alzheimer's the goal is to see what we can do about biomarkers to identify whether a therapy is working or not and study these brain networks that the doctor was talking about to identify new targets for drug treatment that we don't know about already. >> again, thank you and congratulations for pulling this group together. quite a feat. senator alexander. >> thanks, mr. chairman, thanks dr. collins and to all of you.

of course we greatly admire what you've done. i think we all asked you about the same question so let me ask you again, make sure i understand it. a moonshot had a very specific goal, all the incredible human activity was organized around that specific goal. i suppose mapping the human genome was a specific goal and all the activity was organized around that goal. you knew when you got to the moon and you knew when you finished mapping the sequence that you worked on. what is the a.m.p., the equivalent of those big crash courses as senator cochran called them or goals or is there a better goal? i think what i'm asking, i think every one of us may have asked what's the equivalent here in

terms of brain research or in terms of alzheimer's, what should the goal be and then how much money should a great country put behind that to reach the goal? in my work in public life it always seemed to me the money was not the problem, the goal, defining the goal usually was the problem. the goal was compelling enough, usually the resources would follow the goal. so, tell me, again, what the equivalent of the moonshot or the human genome project is here so i understand it clearly and then remind me again, if you know, what it would cost to do it. >> that's the hardest part because we don't know what trajectory will be. let me see if i can address your very thoughtful question. you're right the moonshot, the human genome project were unique situations where you could

define a precise end point and everybody would know if you got there or not. you got a man on noon. you read out 3 million letters of the human notebook. what's the goal. there's lots of goals. getting diagnosis so it's accurate and can be done early before symptom. we're coming along pretty well on that one. i wouldn't say we're there. of course the big goal is prevention, treatment so no one gets this disease any more. that's far enough out in the future that i think it's hard for us with the uncertainties about how we will get there table to put a timetable on that but people are trying. i'm going to ask dr. hodes to say -- >> before do you that. is the goal to prevent anyone from getting alzheimer's just like we say today polio is gone? >> that would be my goal. that's very bold. very ambitious but that's got be the place to try for.

now i'm going to ask hodes to say something about the alzheimer's plan. we also have this brain project. like genome project that will stretch out over a decade or so but it needs have clear indications of whether it's succeeding or north milestones. that's the difference. wean the moonshot you had to have milestones whether you can get there. can you go around the moon and come back. can you put somebody on the moon? maybe dr. landis can say something about brain how we're setting those milestones so we can say if we're getting there. >> so, as i said we have maps of the connections in the human brain, but what we don't have is a way to record from the 86 billion neurons and the thousand connections that each of them has in order to understand how the brain actually functions. so what we need to do is to be

able to record not just from one neuron or tenure rons or 100 neurons but hundreds, tens of thousands of neurons as a person or animal to start with ising b reconstruct how those brain cells directed that behavior. if we can do that it would give us a much better understanding of this amazing computational machine that accomplishes actions and thoughts that no computer could ever replicate. >> there are milestones. >> there are milestones. in fact those milestones are being developed and will be presented to the advisory committee, to the director. we have request for applications out on the street now that have discreet pieces of that problem that we will fund projects to answer. different steps in that process.

>> maybe you can say a quick word about the national plan because it's all about milestones. >> yes. the national plan establishes and has zab lished long term goals including the very ambitious goal of 2025 generating an effective means of prevention. what we did was what would be necessary to reach that success by that date and from there set a series of specific research objectives and milestones so that in 2013 and 2014 there are investments in certain areas of research which as projected if successful will lead in 2025 to ultimate success. we don't know which of the. approaches we take will succeed or which will fail but the design to set out and approach that has potential for that success and as ambitious it is we have no choice but the urgency to move towards that accurated course. >> thank you, mr. chairman.

>> thank you dr. collins, dr. landis for being here today. congratulations on bringing together the drug companies on this a.m.p. project. i think it's a milestone. and, again, hopefully we'll be able to continue our funding and next fiscal year and this fiscal year. thank you all very much. we'll now turn to our second panel. >> mr. chairman, if i could, others have raised kind of like a manhattan-like project, genome, landing on the moon, the manhattan project itself. wasn't one of the biggest concerns the fact that there would be a discouragement or impediment is two things. the shut down of our government and the other sequester so that there's the lack of certainty as

you have to not only sequence the human genome but you got the sequence what you're going to do when in terms of research, recruitment, retention and so on. don't you need certainty as well as resources? >> absolutely. people say that the worst thing you can do to the business community is uncertainty. well that's true for science even more so. our cycle time for projects runs about four years in order to come up with an idea, put it into practice and work really hard and see if it works. when your cycle time for support sometimes is three months, and we've been there for some of these continuing resolutions and certainly when you lose a billion and a half dollars halfway through the fiscal year as we did with sequester it's very damaging for people to pursue momentum and to be able to take risks. not worrying whether they will miss the pay line because it's so tight. if we could find our path forward, madam chair woman to

that kind of stable support for medical research in the united states it would make a huge difference. >> i can't help them but add here that years ago, mark hatfield, senator hatfield came up with an idea i joined with him on it and others did. he pointed out every time you buy a drug in a drugstore, every time you go buy an off the shelf drug or even a prescription drug some of that money goes for research. when you buy health insurance policy none much it goes for research. think of the amount of money we spend every year on health insurance policies to treat and to take care of illnesses, but none of it goes for research. so senator hatfield came up with the idea, it was a long time ago, about having, i think it was two or three cents out of every health care dollar that would come to the appropriations

committee to go to nih and, of course, the argument was made well that would just supplant the money we were doing. no. as long as this committee funded nih or the congress funded nih at a minimum of inflation, then that money would flow on top of it and be a supplement to it. i've been preaching this for 25 years. that some of this health insurance money that we spend ought to go for research and i'm sorry the health insurance industry has always opposed it. but it seemed to me that -- i just say this, this is one way of getting some amount of money that you know every year is going to be there. with that, thank you very much dr. collins. we'll town our second panel. >> thank you. >> dr. michael herd, congressman

dennis moore and mr. seth rogan. while they dome the table i'll go ahead and introduce them. first, dr. michael herd, a senior principal researcher at the rand corporation. where he directs the rand center for the study of ageing. also a professor at the party rand graduate school in santa monica, california. his research focuses on economics of retirement, social security and social welfare systems and other topics related to the ageing. congressman moore who has served in the house of representatives for 12 years. first elected in 1998 congressman moore served on the budget and financial services committees. in 2010 he announced he would not seek re-election. prior to his time in office congressman moore served in the u.s. army, u.s. army reserve, was an assistant attorney general for the state of kansas,

johnson county district attorney as well as private practice lawyer. in february of 2012 he and his wife announced that congressman moore had been diagnosed with alzheimer's disease. mr. seth rogan a stand up comedian, actor, producer, screen writer, voice actor, originally from vancouver, british columbia. moved to los angeles to pursue acting in the late 1990s. since that time he's acted in and co-written movies and done voice over work for animated films. he raises awareness for alzheimer's disease as a celebrity champion for the national alzheimer's association and that alzheimer's has affected his wife's family and he'll, i'm sure talk about that. we welcome you all here. i read your testimonies last night. they are great. all your testimonies will be made a part of the record in

their entirety and i would ask if you would give a short five minute summation of that so we can engage you in questions and answers and conversation. first, well recognize our former colleague from the house side, congressman dennis moore. good to see an old friend back again from the midwest. dennis, thanks for being here and please proceed. >> thank you. good afternoon, chairman harkin, ranking member moran. as an individual living with alzheimer's disease i thank you for the opportunity to testify before this subcommittee. alzheimer's is a devastating progressively and ultimately fatal disease. it currently impacts more than 5 million americans. these men and women are husbands and wives, mothers and fathers, sisters and brothers, republicans and democrats. i should know i'm a former member of the united states house of representatives and i'm one of them. i was diagnosed with alzheimer's

disease almost three years ago on june 1, 2011. i had become concerned when i noticed i was having some difficulty remembering random events and difficulty managing our household finances. since then i've learned coping skills but still recognize the issue i have with my short term memory loss. i now an alzheimer's advocate for the alzheimer's association because i know personally how this disease affects an individual and family. there is a great need for educating the general public and funding research for a cure. not only is it alzheimer's stealing our memories and independence and our ability to function but demands increasing amounts of care. beyond the exhaustion and stress there's the financial burden. the direct cost of alzheimer's and related dementia is greater than any other condition in the united states including heart disease and cancer according to a recent study in the "new england journal of medicine." over the next 40 years caring

for people with alzheimer's will cost $20 trillion. however, even with this, information for every $27,000 medicare and medicaid spend on caring for individuals with alzheimer's the national institute of health spends only $100 on alzheimer's research. fortunately alzheimer's is a bipartisan issue. in 2010 congress unanimously passed the national alzheimer's project act. the act mandated the creation of the first-ever national alzheimer's plan, which was released in may 2012 with a goal of preventing and effectively treating alzheimer's disease by 2025. recently updated the plan now includes important milestones and a timeline to facilitate achieving that goal. however goals of this magnitude, goals aimed at changing the trajectory of a national health crisis requires significant investments if we hope to

realize success. recognizing this we commend congress through their leadership of you chairman harkin and moran for increase for alzheimer's and appropriations act in 2014. this is an important down payment and step into implementing the national alzheimer's plan so we can reach the goal of treating and preventing alzheimer's by 2025. this will allow scientists to pursue innovative research that will thread new treatment, interventions and diagnos diein diagnostic. in order to take full advantage of the potential of the national alzheimer's plan, congress must

see to it the necessary resources are prioritize to accurate the government's investment in alzheimer's. it's now incumbents upon our nation's leaders to ensure the promise of the national alzheimer's plan. my fellow alzheimer's advocates i thank you for your support in fiscal year 2014 and urge you to stay committed to alzheimer's as you start discussions for fiscal year 2015. an epidemic is upon us and too many families are in situations like mine facing a fatal disease that currently has no way to prevent, cure or slow its progression. as a nation we cannot afford to wait until alzheimer's bankrupts us. we must make the smart investment now realize a better, healthier future for our families and our country.

>> appreciate your being here and your advocacy. next we will turn to dr. hurd, the author of the same study that came out last year i think the author of the same study . doctor. thank you for the kind words about that study. challenging as i will outline now. chairman harkin, ranking member moran, i thank you for the opportunity to testify about the monetary cost of dementia in the united states. my testimony based on research that co-authors and i did at the rand corporation and university of michigan and it was published last year in "the new england journal of medicine." the emotional cost of dementia are in measurable. our more modest goal was to measure the monetary cost of dementia but even so there were a number of challenges. first most people with dementia have coexisting health problems such as history of stroke or a heart condition which by themselves would lead to higher costs. we wanted to find the costs

attributable to dementia itself, not the health care cost of people with dementia. a second difficulty concerns in formal care, that is unpaid care most often performed by a family member. we had to develop a method of placing a monetary value on that care, knowing it could have large effects on our estimates. decent other challenges may be difficult to find valid and reliable data that were adequate for the needs of this research. unfortunately the national institute on aging, nia, under the leadership of dr. hodes and others have divorced many years ago to invest in a data infrastructure, the health and retirement study, without which this research could not have been accomplished. the hrs has become the preeminent data source for general population represented studies of aging. it provides a wide range of data including cognition, health care

use, costs and informal caregiving. however, the agent has lacked a major of the dementia status of its respondents. in 1998 a multiple display mary team including myself proposed and then fielded a small sub study to diagnose a sample of h.r. as responders for dementia status. in our study we use these diagnoses to estimate the dementia status of a much larger h. res sample around 6000 persons. according to our results in 2010 the prevalence of dementia in the population aged 71 or older was 14 points 7%. the annual health care spending attributable to dementia was about $29,000 per person. the great majority of these excess costs were for nursing home stays and paid in home care, adding in the cost of unpaid or in formal care increased total annual cost per

person between $42,000, and $56,000 with a range depends on the method of valuing informal care. we were not able to allocate costs between alzheimer's disease and other dementias, but we know the great majority would be due to alzheimer's. we used census estimates of the population to estimate the annual cost of dementia in the united states. we found that actual spending attributable to dementia was $109 billion in 2010. this cost place as dementia as the most also disease in the united states in terms of actual spending. adding in costs for informal care increased its estimate to a range of $160 billion, to $250 billion per year. because the prevalence of dementia sharply increases with age, the aging of the population itself, particularly when the baby boom generation reaches an advanced age come will increase

future costs. the costs for care purchase in the market place will increase in real terms from the 2010 value of $109 billion, to $260 billion in 2040. that's in real terms. adding in the cost of informal care increases the cost estimate to the range of 380 billion, to $510 billion per year in 2040. we are extending this research into direction. dementia is very costly on average, but these costs are unequally distributed. some households spend nothing while others might spend more than $100,000 per year. in the research we find that the costs are even more skewed when accumulated over many years because some people with dementia can be in a nursing home for five years or even longer. i.t. related costs can be financially devastating to some families. -- accumulated cost. long-term care and the total cost of dementia, rand is

developing a research, reportedly released this year that aims to providers, payers and policymakers efficiently group long term care for dementia. in summary, dementia is already very costly and will grow even more costly. clearly medical breakthroughs that would prevent or delay onset are urgently needed. but even in absence of such breakthroughs, innovations and policies that can reduce costs should be pursued. thank you ms. chairman and ranking member. thank you for your attention and i look forward to your questions. >> thank you very much, dr. hurd. now we will turn to mr. seth rogan. welcome and please proceed. >> thank you very much for having me, esther chairman, ranking member moran, and the members of the subcommittee. thank you for the opportunity to testify today and for the opportunity to be called is expert at something because that school. i don't know if you know who i am at all. you probably not have ever seen

knocked up, mr. chairman. it's a little insulting. [laughter] spent i want the record to note speakers is very important spent i want t the record to note this is the first time i will wager, this is the first time in any congressional hearing in the history that the words knocked up have been used to. [laughter] >> you're not going to like the rest of this then. [laughter] first, i should answer the question i assume many of you are asking. yes, i'm aware this is nothing to do with the legalization of marijuana. [laughter] in fact if you can believe it is concerned something that i find even more important. i started dating my wife nine years ago when her mother was almost 54. the first time i met her parents being dementia that again, i was excited to spend time with him and make lauren think i was the type of guy she should continue dating. it was this trip, the first time i met my now mother-in-law that lauren first admitted to herself

and then to me that something was off with her mother. i guess the clues were unfortunately easy to spot since both of her parents had alzheimer's disease. soon after this trip at 55 years old, laurens mother was diagnosed with early onset alzheimer's. now, at this point my impression of alzheimer's is probably what i assume most people's impression is. i thought it was something only like really, really old people can't, and i thought the way the disease primarily showed itself was in the form of forgotten keys, wearing mismatched shoes and being asked the same question over and over. this period which was the only way i sing all sums displayed in movies or television lasted a few years from laurens mom. after that, however, is when it's on the real ugly truth of the disease. after forgetting to she ever loved ones were, my mother-in-law, a teacher for 35 years been forgot how to speak, feet or so, dress yourself and go to the bathroom herself, all by the age of 60. lawrence father and a team of

caregivers dedicate their lives to let my mother will be as comfortable as she can be. they love to do more but can't because as you've heard, unlike any of the other top 10 causes of death in america, there's no way to prevent, cure or even slow the progression of alzheimer's disease. another thing i did realize until i was personally affected was the shame and stigma associated with the disease. it was before i was born but i'm told of a time when cancer had a stigma that people were ashamed by. celebrities and other public figures that restricted would hide rather than the voices of hope. although it's turning, this is currently where we are largely out with alzheimer's disease it seems like. is because of this lack of hope and shameful stigma that my wife, some friends and myself decided to actually try to do something to change the situation. we started polarity for charity. hilarity for charity as defined we have as a part of the alzheimer's association to raise money to support cutting edge

research. that's right, the situation is so dire that it cost me, a lazy, self-involved, generally self medicated manchild to start an entire charity organization. it was through this that we felt we were just complaining, there was nothing to be done, but actively taking steps to do so. instead of being disappointed that young people were misinformed about the disease, we started to educate them. we recently started a college program that allows university students to hold their own polarity for charity events. in the months since it started, 18 schools nationwide have signed up to hold events. the fact we have college students stop linking to games and volunteer their time is a huge accomplishment especially considering station for -- playstation for. i'm sure these people know what i'm talking about. i came in today for a few reasons. one, i'm a huge house of cards than --

[laughter] had to be here. number two is to say people need more help. i have person seemed massive amount of financial strength this disease causes and give the american people ever decide to -- i will no longer be able to afford it. please don't. therefore i can't begin to imagine how people with more limited incomes are dealing with this. as you also heard study shall alzheimer's are related to dementia at the most costly condition in the united states. yes, it is more costly than heart disease in the country where for $1.29 you can get a top of made out of doritos. their delusions but they are not healthy. while death and stroke, while deaths from other mage disease like heart disease and hiv instructs continued decline, death from alzheimer's have increase almost 70% in the last 15 years. over 5 million americans have alzheimer's and at this rate in 35 years as many as 16,000,001 have the disease. the third reason under simply is

to show people that they are not alone. so few people share their personal story, so few people have something to relate to. i know that if me and my wife saw someone like me talking about this, it would probably make us feel a little less alone. americans whisper the word alzheimer's because their government whispers the word alzheimer's. although a whisper is better than silence of the alzheimer's community has been facing for decades, it's still not enough continues to be yelled and screamed to the point fund gets the attention and funding that it deserves and needs. i dream of a day when my charity is no longer necessary and i can go back to being the lazy, self-involved manchild i was meant to be. people look to the government for hope and ask them what comes to alzheimer's disease you take more steps to provide more. i would like to thank the committee again for the opportunity to share my story and to voice my wholehearted support for the continued work that pursues a cure for alzheimer's disease. thank you very much. >> thank you, mr. rogan. that was great.

thank you, thank you. although i'm sorry you had to unmask me. i'm really kevin spacey in disguise. [laughter] not too many people knew that. thank you all very much. i'll start with the dr. hurd. i'm pleased to see her research was funded by the national institute of aging. you may be aware, made all of you, maybe you're not aware, that some of my colleagues in the house of representatives hold a different view of the role of nih and health economics research. in fact the house draft of last year's appropriations bill, our counterpart, which they released but did not has included language that would've precluded nih from supporting any health economics research such as what dr. hurd did. dr. hurd, as an economist

researcher, how important is in ages support to your work? .. off the ground? >> it's extremely important, i would say say all-important to my work. i'm the holder of several grants and a center grant. the importance of nih funding comes from its, i would say primarily from its long term reach and also from its multidisciplinary aspect. our study involved cognitive scientist, economists, gerontologists. that kind of assembling a team is not easy outside of the nih

umbrella. the long term reach is extremely. hrs was the foundation for this study. it wouldn't have been possible without them. the study began in 1992. i was part of the original team. that sustained funding over many years doesn't happen outside of nih for this type of research. i mentioned the 1998 study, similar example where we are laid the foundations for the study that we published in the new england journal really in 1998 and pursued over many years. i just don't think the kind of study we did would be feasible outside of the nih. i don't know of an agency that would support that kind of long term study as well as the multidisciplinary aspects. >> we didn't do this on this side, bipartisan. i just want to get that out just so people understand that and that hopefully the house won't repeat that again this year. representative moore, as a

former policymaker and a patient, is there anything you personally experienced that would change? do we need -- is there anything we need to better educate primary care physicians on number one. i'll ask two questions. that's number one, dennis. secondly, you've spent a lot of time on this side of the dais. is there -- if you were here what questions would you ask of nih. is there anything that we didn't ask or something we didn't cover? >> i really think you have asked the appropriate questions of nih. i just think it's important that people in this country understand that this is a disease that's affecting more and more people. i had it in my family with my dad. so i wasn't terribly surprised when i was diagnosed. i understand there's some genetics involved. something you wouldn't wish on anybody but it happens. i hope some day they will find a cure. right now i just think as a

nation we need to deal with this disease as best we can and i really, really appreciate the fact that you're holding this hearing and trying to get more information so you can do the right thing. >> thank you very much, dennis. mr. rogen, i got to be honest -- [ laughter ] -- i was reading this last night very quickly. hilary for charity? >> i forgot the t. >> i had to stop and go back. >> it's a progressive program. >> so tell us more abohilarity charity. >> there's zero acknowledgement in the world of these young people. it seems to be something not of a high priority. something that people, again,

think only happens kind of naturally when people enter their 90s and i don't think people understand that it's not their grandparents being i really just saw that first and y felt that there was a massive hole missing when it came to, you know, informing young people about the reality of this disease, and it didn't seem like a high priority anywhere globally to inform young people about the disease, so we decided we should do it because no one else seemed like they were going to. >> good for you. senator moran. >> i don't know that i'll ask mr. rogen any questions. i'm a dull, woring person -- boring person, and i would certainly be reticent to have a conversation with you as a comedian. [laughter] i was fully prepared to be shown up by you, but it really bothers me that senator harkin is more funny. [laughter] >> that kevin spacey line was

great. [laughter] >> so i don't know whether i'll ask you a question or not. i'll start with mr. hurd, and this really is a question for dr. collins and his crew at nih. as i was listening to dr. hurd's testimony, it occurred to me it would be useful to me to understand whether the prevalence of alzheimer's is increasing, or is that just a factor of us living longer? and i don't know the answer to that, but i assume that has significant cost consequences. so do the costs -- are you expecting greater costs in the future as a result of longevity? and then just scientifically on a research basis, has alzheimer's been with us to the degree that it is today into the past, it's just that we now live longer, therefore, it's not that we're physiologically change, it's just that we live longer and, therefore, the evidence

exists. i don't know whether that's a question for you, dr. hurd, or not, but before i forgot my question, i wanted to be sure i got it in front of dr. collins. >> i can say something about that in two ways. we looked in our data to see if we saw any trend in prevalence adjusted for age, to you're exactly right. -- so you're exactly right. one needs to be careful about increased dementia due to increases in aging in the population from changes in dementia rev lens holding age constant. and the latter would be a very important finding because that would suggest that as the population ages, we may see less prevalence than had been forecast. our forecasts are based upon constant prevalence, holding age constant. so the question came up earlier about over the age of 90. we estimate around 38.5% over the age of 90 are suffering from

dementia. we assumed that rate remained constant to 2040. and so as the aging of the population, more people reaching those ages caused the increase in overall population prevalence and the increases in cost. we study now our data quite carefully. whether we could see any change in specific rates of dementia over time, we saw a slight suggestion of that, but we're not ready to write a paper on that until we really are quite certain about that. there was a recent study in lancet in england that suggested a decline in age-specific prevalence in dementia, quite a large decline in prevalence. i think before we would want to take that and put that into a forecast, we would want to have more examples of that from a wider range of populations. but right now i think at least from our perspective we do not

see any change in age-specific prevalence. >> doctor, we generally have been using the word alzheimer's, and you've been using the word dementia. is there a distinction to be drawn here? >> yes. we used -- our study was about dementia because that's what our data would support. we had some diagnoses of alzheimer's, but the data -- we didn't have enough observations really to distinguish those. this is somewhat outside my area of expertise, but my understanding is that there's somewhat of a blurring line between many forms of dementia and alzheimer's. the majority of dementia is alzheimer's, typically there will be vascular dementia in addition to alzheimer's at the same time. >> should we expect an announcement, the results of another study from you related to these topics? >> we're working right now, we

have an ro1 from nia to look at long-term care. the cost of long-term care and the role of health insurance for long-term care. why do we not have a functioning long-term care insurance market. it's very clear that the costs are highly skewed, and this should be an insurable situation, but we don't yet have a well functioning market for that, and we're finish -- we've produced one paper on that, and we'll produce further papers. >> thank you very much. mr. rogen, i appreciate your work, hilarity for charity, so my comments are dull and boring, but it's really an expression of gratitude. and i appreciate your efforts to educate and to communicate with young people. that's something that i have no doubt that is missing. one of the things that i might suggest in that regard in talking to young people is we need to instill in american

young men and women the desire to pursue careers, degrees, education in science, research, medicine. we need the next generation of the doctors that were in the preceding panel, and i just would encourage you, and maybe you have comments in that regard, but to do everything you can to instill in people the desire that this is a noble calling worthy of a career. >> yeah. i would love to do that. but, actually, i think one of the most distressing things, honestly, i learned today was talking to the doctor before the panel just in the little waiting room area, and he was explaining to me saying that he touched on here as he was talking was how the funding for the research in this area so sporadic and inconsistent that people -- and i relate to it as just a young person who is pursuing a career -- people are discouraged from entering but a it's not --

because it's not as financially stable as many of the other diseases that are having great strides taken in, you know, conquering them. and i will do my best to encourage it, but again, i ask the government to create a situation financially where there's the means for the people with ideas to actually do something with them. i mean, what he told me, again, backstage was there's people that come to us with ideas that could literally be the thing that cures this disease, and what we have to tell them is there's a one in six chance of that getting funding, and they probably take from that, man, if i go focus on heart disease, i'll make more money, and i'll also save lives. but it's a more glamorous situation financially. alzheimer's just isn't a cool disease, unfortunately. and it's something that i think, you know, that was honestly one of the most distressing things i heard today was each people whose natural ip at this point would be to -- instinct would be

to pursue curing this disease are discouraged from the financial land scape of this profession. >> while you earn a living as a comedian, you are a very effective lobbyist, turning my request -- [laughter] >> i'll do it. [laughter] give me the mean, i'll give you the people. >> i certainly noticed although you will find in this request, this plea for constant increasing of funding is one that we've made for a number of reasons, but included in those reasons is the understanding that people who are making decisions about what to do in their careers need to know whether it's alzheimer's or any other disease that nih funding is going to be there, and there's an opportunity for them. the uncertainty that congress and the administration can create in budgets and spending create a real challenge as we try to recruit young people. >> and i think that mentality trickles down to people my age and just honestly shows them that it's not at the national

level. and that's what we're trying to change. >> thank you very much. let me now visit with my colleague, my former colleague from kansas. dennis, thank you very much for being here. i appreciate you reminding me of your -- i was at at your fathers funeral. i remember his condition and the reminder of heredity. i think my question to you is this: what is the state of knowledge, what is it that we know? when you've been diagnosed with alzheimer's, what is it they can tell you to do to make the quality of your life better, to slow the process? in other words, what does -- my impression would be you would be a typical patient who learns of a diagnosis, and you've pursued, i assume, all the opportunities to try to make life better over

the course of your remaining life. what is it that's out there that people can tell you, health care professionals and others, that can tell you what you can do, what does the alzheimer's association tell you to do to accomplish that in your life? >> basically, to take the medication that they've diagnosed for me and others, i think, and also to get some exercise which i try to do on a daily basis. and my wife very much encourages me to do that. i'm a smart husband, i say, yes, dear. [laughter] >> some things we won't forget. >> right, right. >> it's a good thing. dennis, again, i appreciate you, your public service -- >> thank you. >> the chairman had a long list of things that you've done in our state, and i wish you and stephanie all the, absolutely all the very best. it's very pleasing to me to see you here not on your behalf, but on behalf of all the people who sit in this audience and the thousands of americans and people around the world who have

encountered the same circumstance that you encounter. and the way that you're living your life, i believe, gives others courage and hope, and i commend you and stephanie for that tremendous addition to your life, another role to play, and you're playing it very well. >> i thank you very, very much for those comments, and i also thank you for conducting this hearing and learning more about this and what we as a nation can do to better deal with this situation of alzheimer's, because millions and millions of americans -- as you well know -- are being affected by this. thank you very much. >> you're very welcome. mr. chairman, thank you. >> thank you, mr. chairman. >> dr. hurd, and maybe i need to get the other doctor in here too on this. i'm a little confused listening to your response. in other words, is dementia getting more aggressive, affecting more of the population, or is there just an

increase in the number of people over 65, that we're living longer so the incidence is more? is there any data that we have from the past about the prevalence of dementia, let's say, in someone who's 50? or 55? compared with what it is now? so do we have a higher percentage of our oplation affected? -- population affected by dementia? >> [inaudible] >> punch the button. >> there is no evidence of an increase in the risk of demen shah at a given age. i think as you were alluding to in past years, there was so little awareness and specificity of diagnosis, so relatively few people reaching an age that we don't have accurate figures for that point. certainly, longitudinal studies

are going on now, but no evidence that there's an increase in the incidence of alzheimer's at a given age. >> so the prosecutor of the population, say at age 55 or 60, that was diagnosed with dementia, say, 50 years ago is about the same as -- >> well, i think all i can really say is there's no evidence of a change. 50 years ago we simply didn't have the statistics to answer your question. >> but you said that, i thought you told me, though, that it is about the same, that there hasn't been -- >> trying to be careful. we have no evidence that there has been any change. and i think if you were asking people, ask us to speculate, we don't know of reasons for change. now, there are, for example, vascular components to dementia that are affected by hypertension, and since hypertension is better controlled, we might have expected that made a difference.

but the straightforward answer, comparable diagnostic means that could it allow us to answer your question, and the answer is we don't know. the studies that have been referred to, the population-based studies and health and retirement survey as an example are beginning now or began ten years ago will tell us in the future ten years from now, twenty years from now we'll be able to answer your question when you're here 20 years from now better than we can now. >> i'm retiring next year, by the way. [laughter] do you have a question? >> i just saw the word "doctor" in front of hurd and just started asking medical questions. senator be harkin is asking the question i was trying to pursue better than i did. and if you took the 50 years away and said five or ten, is there evidence that the disease is more prevalent, the incident

is changing, either increasing or decreasing in a shorter period of time or, again, we just don't yet have the evidence, we've got to wait another 20 years? >> we don't have sufficient evidence. now, do you want to comment in the longitudinal study? >> yeah. in the hrs we, again, looked at that. this is a time period from about 2000 up to 2008. it's a very short time period. maybe saw a slight suggestion of improvement in age-specific rate of dementia. but we want to pursue that further because of some technical reasons. as i mentioned, there was a study in lancet that suggested an improvement. but i would say right now that we don't know. but you need, you have to have very consistent methods over a long period of time. we have that in the hrs, but not long enough time period to be able to answer your question. >> i think why i think this is important is part of it is the cost. when you analyze what the costs are going to be, you need to

know what the trend is. but also from the diagnosis or the cause, are there environmental factors? i hadn't thought about high blood pressure, but that -- the increase of stress in our lives, higher blood pressure, does that again have a consequence on the disease we're trying to eradicate? >> absolutely. and there's a part of the priorities through the national plan is having in lace means to do just this -- in place means to do just this sort of surveillance. preventing, delaying alzheimer's disease will need to be to be reflected by monitoring these kinds of population effects. to do that, we have to have some surveillance. those studies are now in place, and it's important we maintain them. whatever our evidence whether on blood pressure or specific approaches to treat dementia, we can monitor the impact on the prevalence of the disease, the risk of the disease in the general population. >> thank you very much. dr. hurd, thank you for piquing my interest and, doctor, thank

you for attempting to answer the question. [laughter] i -- >> i have a follow-up question for dr. hurd. let me find your testimony again here just a second. what'd i do with it? on this study, something leaped out at me. this. those who did not graduate from high school were more than twice as likely as those who graduated from college to have dementia. and those with household incomes of less than $15,000 were more than tour times likely to have dementia as those with household income more than $75,000. what does that tell us? four times? >> the, so these are raw statistics in the population over the age of 70 -- >> okay. but why, why would income have

any bearing on whether someone gets dementia or not? >> it has to do with the correlation between age and income. very old people have much lower incomes than younger people, so within the age 70 and above the poorest people are the oldest people, and age so high they correlated with -- >> what do you mean the poorest people are the oldest people? rich people live to be old too. [laughter] >> yeah. >> probably live longer because they're better able to -- >> yes, that's certainly the case. more wealthy people live longer than poorer people. it's a cohort difference. people who are age 90 lived through a period where their earnings were substantially less than people who were 70, so when the 90-year-olds were 70, they were poorer than today's 70-year-olds. so there's a relationship between income and age that

brings the relationship between income and dementia into the quantitative aspect that you mentioned. >> but when i read that, when you say less than 15,000, more than four times to have dementia, i would assume that's at every stage, at 70, 72, 75, 80, 90? no, that's not right? >> that is not what's in that table. it's not corrected for age in particular is the main aspect that it's not corrected for. and, of course, in our research we do correct for that, but in that particular table, there is not that correction. >> i'm having trouble with this. >> ask mr. rogen. >> i actually get it, i think. [laughter] >> you get it? >> i think i do, right? >> and cell phone spacey doesn't -- kevin spacey doesn't. >> yeah, exactly. [laughter] >> tell me, tell me what you

think. >> i think what he's saying is older people have less of an income, and, therefore, if you're older, by default, you'll have less of an income, and, therefore, if you have dementia, odds are you're old which odds or means you don't have much of an income which supports those statistics. [laughter] [applause] >> well, thanks. >> thank you, doctor. [laughter] >> it's easier to say see an education where the older population's much less educated. so 90-year-olds have, on average, education of less than high school. and so in that table education is highly related to dementia status simply because the much older population is much less educated. >> my mistake is thinking this was true at every level. >> no. >> i understand now. i got that. i just wondered why there would be that difference, and there's not. i understand that. well, thanks for clearing that

up, again. >> anytime. [laughter] >> you have a future at nih. [laughter] or the rand corporation, i don't know which. >> only this, mr. chairman, thank you very much to these witnesses, thank you to the earlier panel from nih. very grateful for you allowing us to have this hearing today, and i found it very useful. i appreciate the folks here in the audience and across the country who are observing this hearing. we understand how important this issue is in a human, very direct way, and we want to continue our efforts to work together to find the cure and provide hope to the american people. on a much more pedestrian matter, senator collins asked that she have a statement be made part of our record, and i would ask unanimous concept to accomplish her request. >> without objection, so ordered. and, again, i just join with my

friend and colleague, senator moran, thanking you all. again thank you for our great leadership at nih. and all of you who are here today, i know a lot of you came a great distance, and i just want you to know this is an issue that we are serious about, and we've got to find the funding for it. and we've got to make sure we have a steady stream of funding. this up and down just can't continue. i was very happy that i was able to join years ago with senator specter to double over five years the funding for nih. but since then it's gone downhill. we can't do that. we got it up on that plateau to think that's where we were going to go up from there, and it didn't work out that way. we need your presence here, but we need your presence back in your home states and back in your congressional districts talking to your members of

congress on both sides of the aisle to let them know the importance of this and the importance of the steady funding that we need for the national institutes of health. so if you'll do that, i hope that our funding level this year will reflect again the kind of increases we had last year. we'll do everything in our power to make that happen. and again, i thank all of you for your advocacy, and i encourage you to keep strong this that advocacy. -- in that advocacy. this place, this senate, this congress, however much you may read to the contrary in the newspapers and the media, it does respond to you. it responds to our constituents. it responds to the pressure. it responds to what people wallet us to do. want us to do. so if you want with this to happen, if you want us to make sure we've got this good funding stream for nih, you've got to

keep the pressure up. and if you'll do that, then i think that we will see the way clear for great strides in getting to that point where we can actually prevent, treat and cure alzheimer's. that's our goal. we're going to get there. thank you very much. [applause] housekeeping. the record will remain open until march 5th for other statements and comments from other senators. thank you all very much. >> safe travels home, everybody. safe travels home. [applause] [inaudible conversations]

>> if you missed any of seth rogen's testimony at the alzheimer's hearing, we'll show it again later today at 5:15 eastern. tomorrow a look at brain injuries and the elderly. thursday the focus is on chronic illnesses, and we'll wrap things up on friday with a discussion on patient safety. >> here's what's coming up today on c-span2. next, a congressional hearing looks at changing policies toward marijuana. and then it's today's edition of "washington journal." a little bit later it's another congressional hearing, this one on extreme weather events.

join us later tonight on c-span for a look back at the irs targeting informations. -- investigations. we'll focus on a number of hearings on the summit. we'll hear from john koskinen, among others. it starts at 8 p.m. eastern. here's a quick preview. >> this is not being forthcoming. this is being misleading again. this is a pattern of abuse, a pattern of behavior that is not giving us any confidence that this agency is being impartial. i don't believe you. this is incredible. >> i have a long career. that's the first time anybody has said they do not believe me. i'm -- >> i don't believe you. >> that's fine. we can have a disagreement. i'm willing to stand on our record. it was not buried in 27 pages. most of that 27 pages is expickets. when asked about the -- >> being forthcoming --

>> which we knew for one day -- >> being forthcoming -- >> i'm sorry. >> -- you know what, investigators? >> will you let him ask the question? >> i didn't ask him a question. >> yes, you did. >> the gentleman, the gentleman -- >> i control the time. >> i realize that disrupting a hearing sort of -- >> no, come on. >> but the gentleman from wisconsin -- >> i am not yielding time -- >> he has the time. >> regular order. >> if we are investigating criminal wrongdoing, targeting of people based on their political beliefs and the e-mails in question are lost because of a hard drive crash that is apparently unrecoverable which a lot of i.t. professionals would question and you don't tell us about it this we ask you about it, that is not being forthcoming -- >> and that's true. >> i yield back the balance of my time. >> that's not true. >> the gentleman yields back. the gentleman has yielded back his time. >> thank you. >> and that brief portion of one

of the hearings we'll focus on tonight during our look at the congressional investigation into irs targeting. that special begins at 89 p.m. eastern -- 8 p.m. eastern on our companion network, c-span. >> c-span2, providing live coverage of the u.s. senate floor proceedings and key public policy events. and every weekend booktv, now for 15 years the only television network devoted to nonfiction books and authors. c-span2, created by the cable tv industry and brought to you as a lick service by your local cable or satellite provider. watch us in hd, like us on facebook and follow us on twitter. >> the white house deputy director for national drug control policy recently faced criticism from both sides of the aisle on the issue of marijuana policy. house oversight subcommittee chair john mica called the policy schizophrenic, a reference to president obama who recently said marijuana is less dangerous than alcohol. committee democrats,