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 almost 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 a total of $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've had some successes along the way, but the harsh reality is that we still do not know how to prevent, reverse, or definitively diagnose alzheimer's disease. more research is desperately and urgently needed. this subcommittee has always adhered to a strong policy of not earmarking money for particular diseases, a good

policy. or definitively saying what diseases money has to go to. instead, we allow the peer-review process to support the most promising science. however, we were able to provide $131 million increase for the national institute on ageing in the recent fiscal year 2014 omnibus. again, with the expectation that promising science in alzheimer's disease will be supported. we have a distinguished panel of experts here today, scientists, economists, patients, family members. we also have quite an audience. let me 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 am told, from the university of virginia. these young people are spending a day here learning about budget and appropriations, and we

welcome all of you here also. on our first panel, of course, we'll hear from dr. francis collins, the distinguished director of the national institutes of health, who will discuss the current state of science and what kinds of research are most likely to benefit from our appropriations. i would note we are also very fortunate to have both dr. storey landis and dr. richard hotus of the national institute on ageing, also here to answer questions. on the second panel, we'll hear from dr. michael herd, the researcher who wrote the landmark study i mentioned earlier. and we'll be joined by two individuals personally impacted by this devastating disease. finally, former congressman dennis moore of kansas is here today as a long-time colleague and friend of his, i was saddened to learn of his alzheimer's diagnosis so soon after his retirement from the house of representatives. it's no surprise to anyone who

knows him, though, that his first instinct was to educate others and continue serving the public through advocacy and education. so i look forward to hearing from each of our distinguished experts, and before we turn to the first panel, i'll yield to senator moran. >> mr. chairman, thank you very much. i'll 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'm pleased, as you indicated, to have dennis moore testify on his experience of living with alzheimer's. i appreciate dennis as a friend, and i also appreciate his desire to take his own difficult challenges and focus them in helping other individuals and families struggling with this horrific disease. he is used to the years since

his diagnosis to advocate for those living with the disease, and in dennis' words, we need to find a cure like next week. i could not agree more. mr. chairman, every 68 seconds someone in america develops alzheimer's disease, a devastating, irreversible brain disease that slowly destroys an individual's cognitive functioning, including memory and thawing. alzheimer's currently affects more than 5.2 million people in the united states and more than 44 million worldwide according to the alzheimer's disease international. as our population ages, the number of people diagnosed with alzheimer's 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 2050. 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 ageing, alzheimer's disease becomes more prevalent and the need to confront the pending

health care crisis has become ever more urgent. as you indicated, the study by rand corporation stated the cost of dementia is projected to double over the next 30 years, surpassing health care expenses for both heart disease and cancer. alzheimer's disease has become a disease to define a generation, but if we focus our priorities on our research capacity, it does not need to continue to be an inevitable part of the ageing process. for every $27 that medicaid and medicare spends caring for individuals with alzheimer's, the federal government only spends $1 on alzheimer's research. in fiscal year 2014, the omnibus appropriation bill provided for an increase in the way that you described for the $100 million for alzheimer's research. 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 reign in our nation's health care costs.

in this committee and in the full committee, you've often heard me say i really appreciate the issue of dealing with health care and health research. health research is an opportunity for those who are the most fiscally conservative and those who are the most caring and compassionate to come together because we can save tremendous amounts of money and we can improve people's lives by doing so. it's an opportunity for all of us to work together to find a solution. one study has found that a breakthrough against alzheimer's that delays the onset of the disease by five years would mean a total savings of $447 billion by 2050. now's the time that as a nation that we fully commit to defeating one of the greatest threats to our health of americans and the financial well being of our country. 1962, president kennedy called the nation to action to reach the moon by the end of that decade. we need to commit ourselves to the goal of advancing alzheimer's research with the

same ambition and urgency. over the next decade, we must strive to achieve not only an effective 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, like next week. the gift that we all could provide every american and every american family is a special gift. it's called the gift of hope. mr. chairman, thank you very much. >> thank you, senator moran. now we welcome our first panel. dr. francis collins, the director of the national institutes of health, overseeing the work of largest biomedical research entity in the world. it spans the spectrum from basic to clinical research. dr. collins is a physician geneticist noted for his landmark discoveries of diseased genes, his leadership of the human genome projects, 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 the director of the entire national institute of health. he is an elected member of the institute of medicine, the national academy of sciences, was awarded the presidential medal o of freedom in november of 2007 and received the national medal of science in 2009 and i also want to welcome dr. richard hotus, the director of the national institute of ageing. he's held his position since 1993. this is our primary federal agency supporting and conducting alzheimer's disease research. as director, dr. hotus overseeing studies with a basic aspects of ageing. and dr. story landus, serving since 2003.

supports and conducts basic translational research on the diseased brain system. so we welcome you all here. dr. collins, again, thank you for your leadership through all these years. both first for the human genome project and now for the entire national institute of health. dr. collins, welcome and please proceed. >> thank you. good afternoon, mr. chairman and members of the subcommittee. as always, it's great honor to appear before you along with my two distinguished colleagues. we're here to discuss the latest reserng into alzheimer's disease and related dementias. before getting into the science, i would like to thank you for the recent fy-'41 omnibus appropriation for nih. this subcommittee came together in a bipartisan way to reverse the deeply troubling downward spiral of support that nih has found costing us about 25% of our purchasing power for research over the last ten

years. while difficult trade-offs did not ultimately make it possible in fy-'14 to completely reverse the devastating effects of the fy-'13 sequester, we were gratified nih was able to turn that corner. let me begin my report on the scientific challenges we face in alzheimer's by underscoring that all of the work i'm going to discuss is really about helping patients and their loved ones. that's what we are committed to and we know you are too. one of the most famous of those patients is country music star glen campbell. along with a number of you, i was thrilled to be on hand last spring when glen was honored at the alzheimer's association gala. here's a photo of him and me with an autographed guitar pick that he gave me, which is a prized possession since i'm a musician also. to see his great talents, a national treasure really, so compromised by this devastating disease is a reminder of just

how much is at stake. we've heard the sobering statistics, and they've been already cited in opening statements by senator harkin and senator moran about the wave of diseases that will break over the united states as the baby boom generation ages. already about 5 million americans have been diagnosed with alzheimer's disease and 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 its economy that this disease creates. as you've 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 $1.2 trillion annually by 2050. to put this into context, consider how much our nation is spending on medical research.

nih's budget was $29.1 billion in fy-'13, with $504 million of that devoted to alzheimer's disease research. we are thrilled that the fy-'14 omnibus includes an additional $100 million for research on diseases of ageing, including alzheimer's disease. in our effort to find ways to prevent, delay, or treat alzheimer's and other dementias, we are bringing to bear all possible technologies from genomics to imaging to big data tools. but this task is immense. there are great many things we still don't know about how the normal brain functions, let alone a brain with alzheimer's. in fact, this month's national geographic provides a glimpse at what nih funded researchers are doing to explore what's been called biology's last frontier, the human brain. and i couldn't help but notice

scientific american just on the newsstands has the brain on its cover also for the current issue. as you know, nih is leading the initiative called brain research through advancing innovative neurotechnologies. that's an acronym, b.r.a.i.n. we're grateful for the subcommittee's support for this venture in the omnibus. the brain initiative, which the president has 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 realtime. that's sure to be a tremendous value to researchers who are working on autism, schizophrenia, epilepsy, traumatic brain injury, depression, parkinson's disease, and yes, all forms of dementia, including alzheimer's. let me tell you one recent finding in brain science that's generated a lot of excitement. it involves a protein called tau. this is one of the major

culprits in alzheimer's disease. the other one is amaloid. in normal brain cells, this tau protein stabilizes structures that are called microtube yules and that are involved in internal transport. that's what you see happening here with this amazing machine inside the cell. but in alzheimer's, the tau separates from those microtube yules, causing them to fall apart. strands of this tau protein then combine to form tangles within 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 and eventually they die, causing memory loss. the effect on the brain, the brain shrinks and begins to lose function, showing you here what happens in advanced alzheimer's disease as the brain's substance

is gradually shrunken away by the loss of brain cells. now, one exciting finding recently is we've discovered this tau protein, which we used to think was just inside cells and therefore kind of inaccessible, that it's actually transferred from neuron to neuron, almost like an infection inside the brain. that may sound a little scary, but for us it means opportunities for therapy. proteins that spend their whole existence inside cells, they're hard to attack. but if we can find a way to prevent that cell-to-cell transmission, perhaps by locking tau with an antibody, we might be able to stop alzheimer's in its tracks. still, new drugs won't do a whole lot of good unless we can identify accurately those who might benefit from them. to do that, we need better ways to diagnose alzheimer's disease and to do so as early as possible. until recently, we could only conclusively diagnose alzheimer's after someone had died. this involved examining slides

of brain tissue, like you see here, for the classic signs of alzheimer's disease. amaloid plaques and tangles made up of tau. but now, thanks to recent advances in imaging technology, we can detect signs of alzheimer's inside living brains. what you see here are p.e.t. scans of two living people. on the top, an alzheimer's patient whose brain lights up with markers for both tau on the left and amyloid on the right. on the bottom, you see a normal brain. quite a difference. importantly, these scans are able to detect deposits of tau an amyloid years before the onset of symptoms. that should 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 spine fluid to see if a new therapy is working even before it has an impact on the course of memory loss. those kind of predictive measures are called biomarkers. one of our top priorities is to find and validate those kinds of biomarkers for clinical use so we'll know if treatments are working as quickly as possible. this leads me to the crucial issue of clinical trials. until a couple of years ago, we focused primarily on trying to treat people with unmistakable symptoms of advanced alzheimer's. those who had already lost many of their brain cells. the results, i'm sorry to say, have been almost entirely discouraging. but today, we are focused on earlier interventions. so many of our newest clinical trials are actually looking at presymptom attic patients who are at high risk but don't yet show symptoms. one of these is a five-year clinical trial to see if an antibody treatment aimed at amyloid can prevent cognitive decline by starting the

treatment before any symptoms appear. in a unique situation, we're testing this among members of a very large family in columbia as well as some u.s. patients, who share a dominantly inherited had genetic mu asian that that causes alzheimer's at about age 45 and places those individuals as extremely high risk. a second study, the anti-amyloid treatment in a-symptom attic alzheimer's, also just called a-4 because that's easier to say. this will test another antibody in 1,000 volunteers age 65 to 85. these individuals do not yet have any symptoms of alzheimer's but by p.e.t. scan, they're found to have sufficient amyloid in their brain to be considered at risk, like the person min th middle here. this is someone with completely normal function but there's a lot of amyloid here. is this an opportunity to intervene?

all of these studies will hinge upon validated biomarkers. as i mentioned a minute ago, which is why i'm especially excited to announce the accelerating medicines partnership, or a.m.p., earlier this month. a.m.p. is an unprecedented collaboration between nih and ten pharmaceutical firms and will accelerate identification and testing of drug targets for alzheimer's disease, diabetes, rheumatoid arthritis and lupus. about $230 million will be invested over five years with nih and industry contributing equally. we both have skin in the game. for alzheimer's disease, a.m.p. will incorporate an expanded set of biomarkers into four ongoing trials designed to delay or prevent disease and evaluate those for effectiveness. another part of the project will develop detailed maps of molecular networks in the alzheimer's brain, potentially pointing to new therapeutic targets. empowered by the $100 million fy-'14 budget increase for research on diseases of ageing,

nih will be able to make major investments in four cutting edge areas of dementia research that we would not have otherwise been able to do. genetic analysis, opto geneticings and translational centers. similarly, we will be able to funds a significant number of investigator research grants that otherwise would not have made the pay line and would have gone unsupported. so mr. chairman and members of the subcommittee, i began talking about people with alzheimer's disease. i'd like to close with a tribute to another deeply affected group and represented, i'm sure, by many in this room. the people who care for their loved ones as they slip into those deepening shadows of alzheimer's and dementia. one such caregiver is meryl comber, friend of mine, a former tv newscaster who has cared full time for her husband harvey in their home for nearly 20 years. harvey was a leading investigator at nih until he began showing signs of confusion

in his late 50s. just last week meryl shared with me these lines from a book that she's working on about her experience and titled poignantly "slow dancing with a stranger." her words, as i write these words, a faint glow of light fillings the room i share with harv harvey. he's always present, even though he is absent. the person i knew is lost but not gone. so hard breaking and so true. what harvey has suffered, what meryl has suffered is what inspires all of us to fight back against this insidious disease as vigorously and swiftly as possible. that is our commitment and there's no time to waste. on behalf of my colleagues, thank you for this opportunity. we look forwards to your questions. >> thank you very much, dr. collins, for a very learned and lucid presentation. i must say, when you were talking about that brain initiative, i was driving into work late one day.

must have been a friday or monday if i was coming late. and i heard you on the diane rooems show talking about that. once again, i say this with all respect. you're one of the unique individuals who can take very complicated and hard-to-understand scientific processes and research and put it in language that people understand. i want to thank you for that. because i thought what you said on that show just 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. again, i compliment you for that ability. we'll start a round of five-minute questions. dr. collins, maybe a simplistic question after your presentation, but i see all kinds of claims about what people can do to prevent alzheimer's. well, let's see. there's brain games for sale. there's articles telling seniors

to do a crossword puzzle every day, sodoku also. there's a website suggesting supplements. what does the research community know about these claims? what are the best things individuals can do right now to lower their risk of dementia or alzheimer's disease? >> well, you're right, that those are questions on many people's minds. nih has funded a lot of research in that area. i'm going to turn to my colleague, dr. hotus, to summarize. >> thank you for the very important question. we have to make lifestyle choices every day. there's no such thing as not making a choice. we do by our actions. there's no question that in general issues of health that exercise, diet are important in many aspects, and they correlate to risk factors for alzheimer's disease. we know that having high blood pressure or inactivity or overweight are associated with

an increased risk of alzheimer's disease. but the critical question you asked, do we know with certainty what activity, what exercise, what diet will decrease the probability developing alzheimer's disease is a question being addressed by ongoing research for which we do not currently have a definitive answer. i would emphasize again, there's important research going on in those areas. there are studies looking at the effect of exercise intervention on individuals before they develop alzheimer's, who are at early stages of alzheimer's. in years to come, we'll have the results of those studies. there's a major study called life that is looking at exercising folks and then looking at the impact on their ability to maintain mobility and also cognitive function. there are two studies currently funded by investigators at the university of kansas that are looking at either presymptom attic or early symptom attic disease to determine whether exercise actually changes the course of disease or changes these brain alterations that

we've seen. we have the ability now -- and dr. collins emphasized it -- as we never have before to look at the ability of interventions to make a difference, not just once people have developed disease and we follow for years to see if the symptoms become worse. we can look before there's any evidence of clinical disease. we can use biomarkers and determine whether exercise or cognitive exercises will affect the course of those processes. although we say research does not have a definitive answer, there are so many good reasons to be practicing the positive aspects of lifestyle that we have no hesitation in recommending those. >> thank you, dr. hodes. our former surgeon general brought up an important issue in this past sunday's washington post. he noted 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 experiments. so the community's level of distrust is natural. is there anything nih can do to inspire more participation by minorities in these research endeavors? >> yes. i read that editorial. it was indeed compelling, moving, a reminder of how important it is to focus on health disparities. that's certainly an issue for alzheimer's disease. i'll say one thing and ask dr. hodes to say a bit more about what we're doing now. 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. you can see that over and over again. this is a strong reason why we need to focus on improving and expanding our own work force. we have a number of new programs that are quite bold. this is a high personal priority

for me, to try to see if we could do a better job of recruiting and retaining and mentoring it and supporting 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 to medical 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 tris. 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. thank you very much. >> appreciate you being here. next we'll turn to dr. hurd, the author of this famous study that came out last year that i think shook us all up. >> thank you for the kind words about that study, as challenging

as i'll outline now. chairman harkin, ranking member moran thank you for the opportunity to testify about the monetary costs of dementia in the united states. my testimony will be based upon 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 costs of dementia are immeasurable. 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 co-existing health problems such as a history of stroke or heart condition, which by themselves would lead to higher costs. we wanted to find the costs attributable to dementia itself, not the health care costs of people with dementia. a second difficulty concerns informal 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 effect on our estimates. these and other challenges made it difficult to find valid and reliable data that were adequate for the needs of this research. fortunately the national institute on ageing, nia under the lloyd of dr. hodes and others had the foresight 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 pre-eminent data source for general population representative studies of ageing. it provides a wide range of data including cognition, costs and health care caregiving. it lacked the dementia status. in 1998 a multiple disciplinary team including myself proposed and then fielded a small

substudy for dementia status. in our study we used these diagnoses to estimate the dementia status of a much larger sample of 6,000 persons. according to our results in 2010 the prevalence of dementia in the population aged 71 or older was 14.7%. the annual health care spending attributable to dementia was about $29,000 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 informal care increased the total annual cost per person to between $42,000 and $56,000 where the range depends on the method of valuing informal care. we were not able to allocate costs between alzheimer'sand other dementias but we know the great majority would be due to

alzheimer's. we use census estimates of the population to estimate the annual cost of dementia in the united states. we found that actual spending attributable to desmaen was $109 billion in 2010. this cost places dementia as the most costly disease in the united states in terms of actual spending. adding in costs for informal care increased this estimate to a range of $160 billion to $250 billion per year. because the prevalence of dementia sharply increases with age the ageing of the population itself particularly when the baby boom generation reaches an advanced age will increase future costs. the costs for care purchased in the marketplace 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 costs of informal care increases the cost estimate

to the range of $380 billion to $510 billion per year in 2040. we are kpernding this research in two directions. 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 new research we find that the costs are even more ask youed when accumulated over many years because some people with dementia can be in a nursing home for five years or even longer. can you my lated costs can be financially devastating to some families. in a second extension because of the great importance of long term care and total cost dementia rand is developing a report to be release this year that aims to help providers, payers and policymakers efficiently improve long term care for dementia. in summary dementia is already very costly and will grow even more costly. clearly, medical break throughs

that would prevent or delay on set are urgently need. but even in the absence of such break through, innovations and policies that can reduce costs should be pursued. thank you, mr. chairman and ranking member. thank you for your attention and i look forward to your questions. >> thank you very much, dr. hurd. now we'll town mr. seth rogen. >> thank you for having me. thank you for the opportunity to testify today and for the opportunity for me to be called an expert at something because that's cool. i don't know if you know who i am at all. you told me you never saw "knocked up" chairman. it's a little insulting. >> i want the record to note -- >> very important, guys. >> want the record to note this is the first time i will wagger, this is the first time in any congressional hearing in history

that the words "knocked up" have been used. >> 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 has nothing to do with the legalization of marijuana. in fact, if you can believe it this concerns something that i find even more important. i started dating my wife lauren nine years ago when her mother was almost 54 years old. the first time i met her parents being the mench i am i was excited to spend time with them and make lauren to think i was the type of guy she should continue to date. lauren first admitted to herself and to me something was off with her mother. clues were unfortunately easy to spot since both of her parents had alzheimer's disease. soon after this trip at 55 years old lauren's mother was diagnosed with early on set alzheimer's. now at this point my impression

of alzheimer's was probably what i assume most people's imexpression. i thought it was something only really, really old people got and i thought the way the disease 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 saw alzheimer's displayed in movies and television last ad few years for lauren's mom. after that is when i saw the real ugly truth of the disease. after forgetting who she and her loved ones were my mother-in-law a teacher for 35 years then forgot 0 how to speak, feed herself, dress herself and go the bathroom herself by teenage of 60. lauren's father and a team of caregivers dedicated their lives to make my mother-in-law be comfortable. they would love to do more but can't. there's no way to prevent, cure or even slow the progression of alzheimer's. another thing i didn't realize

until i was personally affected is the shame and stigma associated with the disease. it was before i was born but i'm told of a time cancer had a stigma. celebrities and other public figures that were stricken would hide rather than be voices of hope. although it's turning this is currently where we are largely at with alzheimer's disease. it's because of this lack of hope and shameful stigma my wife, some friends and myself decided to actually do something to change the situation. we start hilarity for charity. it helps families struggling with alzheimer's. the situation is so dire that it caused me a lazy self-involved generally self-medicated man child to start an entire charity organization. it was through this that we felt we weren't just complaining there was nothing to be done but actively taking steps to do

something instead of being disappointed so many young people were misinformed we started to educate them. we recently started a college program that allows university students to hold their own hilarity for charity events and in the months it started 18 schools nationwide have signed up to hold events. we have college students to stop playing video games and volunteer their time is a had huge accomplishment. i came here today for a few reasons. one, i'm a"house of cards" fan. had to be here. march thond whole thing. two, is to say people need more help. i personally have seen the massive amount of financial strain this disease causes and if the american people ever decide to respect geni the

afternoon lia comedy we can't afford it. i can't imagine how people with more limited incomes deal with this. alzheimer's and related dementia is the most costly condition in the united states. it's more costly than heart disease in a country wherefore $1.29 you can get a taco made out of doritos. they are delicious but not healthy. while death from other major diseases like heart disease, hiv and strokes continue to decline, deaths from alzheimer's have increased 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 million will have the disease. third reason i'm here simply is to show people they are not alone. so few people share their personal story, so few people have something to rethe light. i know that if me and my wife saw somebody like me talking about this it would 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 that the alzheimer's kmuptd has been facing for decades it's not enough. it needs to be yelled and screamed to the point that it gets the attention and funding it needs. i dream of the day my charity is no longer naens i can go back to being the lazy man child i hope to be. i ask you to continue to take more steps from vied more funding. i want to thank the committee to share my story and voice my whole hearted support for the continuing work that purr sauce cure for alzheimer's disease. thank you very much. >> thank you, mr. rogen. that was great. thank you. although i'm sorry you had to unmask me, i'm really kevin spacey. not too many people knew that.

thank you all very much. i'll start with dr. hurd. i'm pleased to see your research was funded by the national institute of ageing. you may be aware, maybe 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 in health economics research. the house draft of last year's appropriations bill, our counter part which they released but did not pass included language that would have precluded nih from supporting any health economics research such as what dr. hurd did. so dr. hurd as an economist researcher, how important is nih's support to your work? are there other federal grants you could have applied for to get this study 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 affected, it's their parents being affected and soon enough it's them being affected. i really just saw that firsthand and really 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. >> mr. chairman thank you very much. i don't know i'll ask mr. rogen any questions. i'm a dull, boring person and i would certainly be reticent to have a conversation with you as a comedian. i was fully prepared to be shown up by you, but it really bothers me that senator harkin is even more funny -- >> that kevin spacey line was great. >> so, i don't know whether i'll ask a question or not. i'll start with dr. hurd. and this really probably is a question -- let me put this into the record and it's 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 for 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 assume that has significant cost significances. so 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 now we live longer and, therefore, it's not that we're changing we just live longer and therefore the evidence exists. i don't know if that's a question for you dr. hurd or not but before i foregenentech my question i wanted to make certain 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 and prevalence

adjusted for age. you're exactly right. one needs to be quite careful about increased dementia due to increases in ageing of the population. from changes in dementia prevalence holding age constant. and the latter would be very important finding because then 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 mated 39.5% those over age ever 90 are suffering from dementia. we assume that rate remained constant to 240. as the ageing of the population more people reaching those ages increased overall population in prevalence and increases in

cost. we studied in our data quite carefully whether we could see any change in age specific rates of dementia over time. we saw 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 england suing geftd a decline in age specific prevalence of 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. right now from our perspective we don't see a change in a specific prevalence. >> doctor, we generally have been using the word alzheimer's and you have 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 subdiagnoses 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. great majority. but typically there will be vascular dementia in addition to alzheimer's at the same time. >> should we expect an announcement, another study, the results of another study from you related to these topics? >> we're working right now, we have an ro 1 from nia to look at long term care. the costs of long term care and the role of health insurance for long term care, long term care insurance, why do we not have a

functioning long term insurance care market. it's very clear the costs are highly ask youed and this should be an insurable situation but we don't yet have well functioning market for that. and we've produced one paper on that we'll produce further papers. >> thank you very much. mr. rogen, i appreciate your work hilar the iy for charity so my comments are dull and boring but it's an expression of gratitude. 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 on the

preceding panel and i would encourage you and maybe you have comments in that regard to do everything you can to instill in people 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 dr. hodes before the panel justin little waiting room area and he was explaining to me something that he touched on here as he was talking was how the funding for the research in this area is 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 this pursuit because it's not as financially stable as many of the other diseases that are having great strides taken in, you know, conquering them. in a will do my best to encourage it but, again, ski the government to create a situation

financially where there's the means for people with ideas to do swoigt. he told me again back stage 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 one in six chance of that getting funded and they take from that man if i go focus on heart disease i'll make money and save lives but a more glamorous situation financially. alzheimer's isn't a cool disease, unfortunately and it's something that i think, you know, that was obviously one of the most distressing things i heard today even people whose natural instinct is to pursue curing this disease are discouraged from the financial landscape of this profession. >> while you earn living as a comedian, you are very effective lobbyist turning my request around. >> i'll do it.

>> you give me the means i'll give the people. >> i certainly noticed it although you will find that it's -- this request, this plea for constant increasing of funding is one that we've made for a number of reasons but including 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 will 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. >> i think that mentality trickles down to people my age and shows it's not that high of a priority on a 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 --

i was at your father's funeral. i remember his condition and the reminder of heredity. 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 that 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 opportunity to try to find things that make life better over the course of your rear manger life. and what is it that's out there that people can tell you that are health care professionals and others that can tell you what you can do? what is the alzheimer's association tell you to do to accomplish that in your life? >> basically to take the

medication that they diagnosed for me and others, i think. and also to get some exercise, which i try to do on a daily basis. my wife very much encourages me. as a smart husband i say yes, dear. >> some things we won't forget. 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 and 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 colts 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. >> dr. hurd, and maybe i need to get dr. hodes in on this too. i'm a little confused a little bit. listening to your response on this. in other words, is dementia getting more aggressive, affecting more percent of the population or is there just aff population or is there an increase in the number of people living to the age of 65? is there data in someone who is

50 or 55 compared with what it is now. so, do we have a higher percentage of our population affected? >> maybe this is for you. i don't know. we have no evidence. >> there is no evidence of the increase of the risk of dementia. as you were eluding to there was so few people reaching it in age that we don't have accurate figures for that point. but there is at present no evidence that there is an increase at a given age. >> so 55 or 60 that were

diagnosed with dementia 50 years ago is about the same? >> i think i can say there is no evidence of a change. 50 years ago we didn't have the statistics to answer your question. >> i thought you told me that it was about the same? >> i'm trying to be careful. we have no evidence that there has been a change. if you are asking us to speculate, we don't know of reasons for change. there are for example, vascular components that are affected by hyper tension. but the straight forward answer to we have statistics 50 careers a years ago and now the answer is we don't know. the studies that have been referred to, the population based studies in health and

retirement studies that began now and years ago will tell us in the future. we'll be able to answer your question 20 years from now. >> i'm retiring next year. >> doctor hodis. >> i saw the doctor in front of hurd and started asking medical questions. 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 increases or decreasing in a shorter period of time or we just don't have the evidence we have to wait 20 more years? >> you want to comment? >> in the hrs, again, we looked

at that, this is the time period of 2000 up to 2008. and maybe saw a slight suggestion in improvement in the rate of dementia. we want to pursue that further because of technical reasons. there was a study that suggested an improvement. but i would say that right now we don't know. you have to have consist ept methods in the hrs. >> i think why this is important is part of it is the cost. when you analyze what the costs are going to be. but from the cause, i hadn't thought about high blood pressure, but what is the

consequence and again, does that have a consequence on the disease we are trying ining to eradicate. as part of the priorities is having in place means to do the surveillance. preventing and delays alzheimer's disease means to have surveillance and those studies are now in place. we see whether it is on blood pressure or on more specific approaches, we can monitor the impact on the prevalence on the risk of the disease and prevention. dr. hodis thank you for attempting to answer the question. >> i have a follow up question with dr. hurt. let me find your testimony here. under study, something leaped

out at me. it was 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 with less than $15,000 were more than four times likely to have dementia as those with household income with more than $75,000. what does that tell us? >> four times? >> so these are raw statistics in the population over the age of 70. >> but why would income have any bearing on whether someone gets dementia or not? >> it has to do with the correlation with age and income. very old people have lower incomes than younger people.

so within the age of 70 and above. the poorest people are the oldest people and age is so high they correlated with dementia status. >> rich people live to be old too. >> probably live longer because they are better able -- >> yes, that is certainly the case. >> more wealthy people live longer than wealthy people. >> people who live through the age of 90 so when the 90 year olds were 70 they were poorer than today's 70 year olds. there is a relationship between income and age that brings the relationship between income and dementia into the kwan ti taytive aspect that you mentioned. but when i read that, when you say household income more than $75,000.

i would assume that is at every stage. >> $72,000, $75,000, $80,000, $90,000? >> no, that is not in that table. it is not corrected more anything. it is not corrected for. in our research we do correct for that. but in that table there is not that correction. so. >> i'm having trouble with this. um, ask mr. rogen. >> i actually get it, i think. >> you get it? >> i think i do, right? >> and kevin spacey does. >> tell me what you think. >> i think what he is saying is older people have less of an income and therefore if you are older by default you will have less of an income if you have dementia odds are you are old

which means you have less of an income which supports those statistics. >> thank you dr. rogen. >> i see in education the older population is much less educat educated. they have education less than high school. education is highly reralated t education status. >> my mistake was thinking that this was true at every level, at every age. i wondered why there would be that difference and there is not. thank you for clearing that up. >> anytime. >> you have a future at nih or the rand corporation i don't know which. did you have anything else? >> only this mr. chairman.

thank you very much to these witnesses and to the earlier panel. grateful for you allowing for us to have this hearing today. i appreciate the folks across the country who are observing this hearing. we understand how important this issue is and we want to continue our efforts who want to find the cure and provide hope to the american people. on a more pedestrian matter senator collins ask that she have a statement made part of our record and without objection it is ordered. i would join with my friend and colleague senator rand thanking you all. thank you for your great leadership and all of you who are here today. i know you came a great

distance. i want you to know. this is an issue that we are serious about. and we've got to find the funding for it. we have to make sure we have a steady stream of funding. this up and down can't continue. i was happy that i was able to join years ago the funding for nih but since then it has gone down hill. we have it up in that plateau and it didn't work out that way. so we need your presence here but we need your presence back in your home states. talking to your members of congress on both sides of the i'll to let them know the importance of this. i hope that our funding level this year will reflect the

increases last year. we'll do everything in our power to make that happen. again, i thank you for your advocacy and i encourage you to keep strong in that. this place, this senate, this congress, however much you read, responds to what people want us to do. and so, if you want this to happen. if you want us to make sure we get this good funding stream you have to keep the pressure up. you will see the way clear for great strides in getting to the

point where we can prevent, treat and cure alzheimer's. that is our goal. and we are going to get there. [ applause ] . >> house keeping, the record will remain open until march 5th for other statements and comments from other senators. safe travels home. >> federal reserve chairman cynic -- jenny allen testified before the senate banking committee this morning. testified before the senate banking committee this morning. you can join the conversation on facebook and twitter. >> is this a technique that you the campaign,ove fundraising, perhaps?

>> i don't think that is any of your business. [laughter] >> i think the glamour of reagan, though, had less to do with his hollywood roots per se, like, it was not the glamour of hollywood exactly, but it did have something to do with these skills and the grace that he acquired as an actor, i think he always hit his mark. -- fielding like those questions looked effortless, which is another aspect of glamour, so people who were likely to support him politically could see in him sort of the ideal candidate, the ideal representation of their views because he did not make them embarrassed in any way. they were not waiting for him to fail. as he got older, that became more of an issue, but especially in those early days, he had this -- which comes from the

16th century book about how to be a successful politician of the day. >> defining and using glamour, sunday night at 8:00 on c-span's "q and a." >> coming up on c-span this morning, "washington journal" live with your phone calls and tweets. at 10:00 eastern, the house returns for general speeches, then at noon, members work on a bill to require federal agencies to give monthly reports on a status of proposed regulations. and coming up in 45 minutes, congressman phil roe, republican of tm -- of tennessee about the alternatives to the affordable care act. and later, xavier becerra,

chairman of the democratic caucus, discuss the house democratic agenda. and it 9:15, nbc news correspondent terry smith talks about his documentary looking at the marijuana industry in colorado. ♪ host: good morning. up on capitol hill today, federal reserve chairman chan -- janet yellen will be appearing before the senate banking committee to talk about the u.s. economic outlook for the year. we will have coverage on c-span3 at 10:00 a.m. eastern time. in your morning papers this morning, under the threat of a national boycott, jan brewer vetoed the religious freedom bill, saying it could divide arizona in ways we could