>> a senate appropriations subcommittee looked at the status of research into alzheimer's disease. members heard from francis collins, the head of the national institute of health who said federal investment in alzheimer's research pales in comparison to how much the disease costs the country. a second panel included actor said revenue testified about his brother-in-law's struggle with the disease. this is two hours. >> today's hearing is the sixth that this subcommittee has held

since 2000 focusing on alzheimer's disease. the burden of the disease, a state of the research and the challenges faced. going back many years we have heard predictions from experts about the far-reaching consequences this disease will have on the quality of life for american families and the burden that will place on our economy in the years ahead. last april and a major study predicted that these consequences will be far greater than previously imagined. we will hear from the author of that study today on the next panel.reviously imagined. we'll hear from the author of that study today on the next panel. i won't steal his thunder, but i note this study commanded the attention of the nati, there are few americans whose life has not been tested in some way by alzheimer's disease life hasn't been touched in some way by alzheimer's disease. whether through a family member or a friend. it's the most common form of dementia among older americans and its risk increases with increasing age. for those living with the disease, its ravages get worse

over time as does the burden on their families and on society. the number of americans living with alzheimer's has doubled since 1980. the growth will 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 advaes in i inside the living brain 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 thated >> i read that editorial and it was indeed a reminder of how important is to focus on health disparities and that's certainly an issue for alzheimer's disease. i will say one thing in ask dr. hodes to say something about it. one of the greatest opportunities in encouraging clinical trials is it the researchers themselves represent the diversity of our country and we see that over and over again. this is a strong reason why we need to focus on expanding the diversity of our biomedical workforce. 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 and supporting individuals from underrepresented groups in order to populate those clinical trials with people who represent our country and therefore perhaps would be more welcoming to the groups tentatively right now are unsure about whether they want to join up. dr. hodes can tell you what we are we are doing in terms of alzheimer's trials. >> we are indeed making great efforts to correct what you point out an underrepresentation of minorities in representation in clinical trials. one in the city of chicago happens to serve an area where 90% of individuals are african-american but in all cases these outrages are intended to maximize recruitment we are working actively with the cdc and acl and partners in an exercise which overall has

intended to increase older adults with an emphasis on minorities. we have a program of centers particularly focused on minority aging research in developing methods for enhancing the right liaison and communication with minority communities to increase their level of confidence and stability. >> i appreciate it that and i hope you look at that very aggressively. the chair of our distinguished appropriations committee and a distinguished member of the subcommittee was the first person to bring to the subcommittee's attention a long time ago the disparity of women in terms of research trials. so i hope we take a lesson from that and we really become much more aggressive including these minorities in these clinical trials. i thank you very much.

senator moran. >> thank you for your testimony and we are honored to have you here. you indicated in your testimony several developments promising opportunities in this area of research of alzheimer's. let me ask you to put this in my view a chart. where are we compared to today and are the increases in knowledge are they growing at a faster rate all the time? how does this look in the progress that is being made are not being made? a i love the question. thank you senator. if you go back 10 years people working in alzheimer's disease were frustrated. the ability to understand what are the molecular pathways that have gone awry in the rain to cause this condition? we are limited and we are not

going limited and we are not good in making that kind of comprehensive assessment. our clinical trials are largely based upon hunches and we are turning out badly. we had a limited number of ideas about where to go next. in my view and i have been at nih for 20 years the last five years have been really quite a dramatic change in that environment. we have a variety of approaches things that we probably didn't expect what he now in front of us. for instance what are the hereditary factors involved in this disease? it clearly runs in families. we have gone from knowing one risk factor for the late onset type of fun -- alzheimer's disease depending on who you ask and that number is growing and in fact will be growing rapidly this coming year in part because of the fy14 appropriation. we have gone from understanding

a lot more and to be able to look at pathways in the brain that are really quite complex and point to other nodes in those pathways that are really important and might he draggable. we have gone from having a few clinical trials focused largely on it bans cases of alzheimer's to what you heard about today where now because we can make a prediction about high-risk and start the treatment earlier just like people have often said, if you try to test statins by waiting until somebody has far advanced congestive heart failure you would assume they don't work as you are too late. we want to have successful treatment for alzheimer's. start while there are still lots of brain cells and see if you can protect them. there is a sense in this community of momentum coming from imaging incorporated clinical studies in biochemistry and behavior studies, everything

coalescing here so does the right moment to really try to provide that extra push and that is why what has happened in fy14 could not come at a better time. it's momentum we hope can be sustained. as you know this kind of science is not a 100-yard -- in. we are engaged in a marathon. the trajectory is on an upward course but i guarantee it won't be a smooth and steady one. it will be herky-jerky because we will have big moments of realization seven we will have the disappointments where clinical trial looks good but it didn't work and 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 the amazing talent that we have in our u.s. and worldwide scientific workforce we are going to tackle and when this disease battle. >> i appreciate it the answer and you used the word hope and i use the word hope when it comes to medical research and what you are suggesting is there are

reasons to be hopeful. >> i totally support that statement 100%. >> let me ask about a particular set of people that we care greatly about and scientists have discovered people with down syndrome are at increased risk for developing alzheimer's disease by the age of 40 as i understand. almost everyone has data and malloy deposits in the brain yet only half of those people who have down syndrome ever developed dementia. even if they do they develop plaque so my question is nih exploring the question of why 50% habit? >> a wonderful question. 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 develop it in some do not and what are the other modifiers but also this could you great opportunity to try to use therapeutics at the earlier stage before the dementia has begun to 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 was a challenge in terms of things like informed consent. individuals who made themselves not being the best position to give consent but there is intense interest in the sun by what we did based on that workshop in the course of the next year or two there will be an fact new initiatives focused on that very special population to see what we can learn and see how we can help. >> thank you. in order have senator mikulski

shelby kirk and alexander. senator mikulski. >> thank you very much mr. chairman thank you and ranking member moran for organizing this hearing on this topic of alzheimer's. this is very special to me because my own very dear father died of the consequences of alzheimer's. now 25 years ago so i have been at this a long time. for many of us who headed either in their own families or people near and dear to us and of course there are marquee names that talk about this, mrs. reagan, justice sandra day o'connor and others but really this is an equal opportunity epidemic. it hits people at all income levels whether you are the president of the united states like president reagan or a small businessman like my father or

like the many women out here in the audience who wear the purple sash. they know this tremendous impact on family life the family budget and ultimately their own budget. 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. landis and dr. hodes. i was just said nih. i call it the national institute of hope, that national institutes of hope and i think that is what brings the men and women and family members here. my question because we want to do something in this year's appropriations and i might add every single senator appears also on the appropriations committee. we can feel proud of the fact that we put close to $30 billion

into the nih a billion more than last year. we increased the national institutes of aging why $100 million and completed money for the brain initiative so we think we are make in good progress. dr. collins and others deemed witnesses, we would like to be able to accelerate these breakthroughs. what you just testified seemed 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 the family budget in the medicaid budget and ultimatelultimatel y the impact of people being in long-term care. dr. collins i remember what senator harkin and senator spectrum did when they doubled it. do we need more money? do we need more people going into science class following all

the rubrics and the scientific method, how can we because the clock is ticking and the numbers are growing. the poignancy is there. could you share how we could help move this along? >> appreciate the question senator and it was great hosting u.s. nih on sunday. we are not limited by ideas. where not limited by scientific opportunities. we are not limited by talent. we are unfortunately limited eye 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 economies. as many of you know the way in which we put dollars into medical research baseball --

pays back more than twofold in just a single year. at the moment people who have great ideas about alzheimer's disease and again we have ideas about areas we think are exciting but we also count our our community to come up with ideas that the three of us couldn't necessarily have thought about them through the most rigorous peer review process. their chance of getting funded right now is about one in six. >> one and six. >> five out of six are going away with nothing. the community is incredibly struggling and demoralized about that. hugh and i looked at the survey on monday that just came out on monday indicating what is happening investigators in laboratories all over the country. most of our money goes to all 50 states where research is going on in more than half of those investigators say they basically had to let somebody go or they can't take on student that they want to or they're not going to start a project that they are

excited about because they don't think they have the resource to do it. we are constraining the energy and an innovation and creativity the most amazing engine for discovery that the world has seen which is american science. >> dr. called and she said people are discouraged from coming forth because they don't think there will be the money there to form their project create icy dock your hodes and landis shaking their heads. if we had stayed on 3% growth initiated a harkin spectrum where would we be now add $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 the real growth in terms of purchasing power. it if we stayed on the earth we would he adjusted it $40 million. >> not only at the national institutes of aging but issued point out this could be a variety of institutes from dr. landis. here's my question. i understand you have an idea that if you took inflation plus 5% for four years we could get to where we ought to be. >> that would have you do the math carry nih to that 40 billion-dollar number and again that's a decision that is the to the congress the administration and the american people but i must say from my perspective the best thing we can do for science would be to get on that stable predictable trajectory so we can plan more than three months at a time so we can tell you the upcoming

onto the field there is a career for you. if you have a great idea you will be able to be part of an adventure that's going to be exciting and world changing. right now people aren't sure of this up-and-down uncertainty that has done a lot of damage to to the moment 10. >> thank you dr. collins and the wonderful people. my time is up but i look forward to it. this seems to be an achievable goal if we put our minds to it. >> dr. collins i just want to share some statistics and see if you agree. alzheimer's is the only top 10 causes of america without a way to prevent it, or even slow its progression and so forth. is that basically true in

america and what about some of our european countries like germany and england france and switzerland more industrialized countries? are some of the statistics if you have some? >> yes sir they would need. the alzheimer's epidemic is not just in the u.s.. it's worldwide and it's a function of the aging of our population which is by the way good album that medical research has contributed to. 100 years ago all-timer was barely known because people didn't live long enough to get it. now we have created a wonderful possibility of longer life but with that has come this new responsibility. >> some of us that hope to be in the 90 some day there's a chance we might have symptoms or acute cases of it. >> dr. hurd on the second panel went through those.

>> tell us again how some of the translational research is going on at nih hopefully that will affect maybe a slowdown or a cure for this. >> translation is process of going from basic science discoveries to inflating those with the clinical benefit and that is a major focus on all of the parts of nih. institutes have an investment in that. i think i'll ask dr. hodes to give a quick snapshot of some of the most exciting areas of translation we're pursuing right now. >> thank you. i can really organize thoughts along the the lines of dr. coll response to the areas of hope and progress over the past five or ten years because they really do range from basic discovery through their translation. the level of basic discovery noted, for example, the number of new genetic risk factors and

protective factors we're finding. with funding that was made available this year we can expand new analysis, contrasting what goes on in a normal brain and diseased brain and these are identifying critical points that seem to be central to disease, we can test that hypothesis by tracking an intervention of a drug or specific molecule, find out in a single cell or animal model if that's correct. for translation to emphasis what dr. collins has noted we now have the capability of beginning interventions at a stage which we can track disease long before extensive cell death. we can track the effect justifiness of treatment through biomarkers. biomarkers are what we know now and as we learn about the

progress of disease. everything is about translation and in fact in the planning process now and years beyond with the benefit of this increased funding by appropriation we'll be looking at precisely the right balance of initiatives across this whole spectrum from discovery, to translation, to clinical trials. this is an ongoing effort. we'll meet periodically with the best minds in the nation and internationally to revise those plans, but translation is what is primarily in mind for this whole effort and i think progress at each of tlefls from basic science through clinical trials will support acceleration with full utilization of the resources made available to us. >> let me add one other translational thing that's exciting and that's stem cell. to take a skin biopsy or skin sample and by adding four genes convince those cells to go back in time. then having achieved that, add a

certain number of growth factors and convince those cells to become neurons. you can take somebody with alzheimer'sand study their neurons. it's a disease in a dish. you can tell there's a difference in those neurons if it came from somebody with alzheimer's versus somebody who doesn't. to understand the disease in a system where you can work closely with it and use it as a drug screen because you could then take 1,000, 100,000 drugs which of these make the alzheimer's cells make them look like normal neurons. >> one last question, my time super. in your research, do you do research into animals that live longer than others and see if there's some corresponding problems with their ageing process? if so, which could you speak to

that. >> this is the central role of the institute of ageing, a question of longevity. >> go ahead, doctor. can you? >> looking at varied species with different life spans and expectancies is an important part of the research that's ongoing and is still a mystery which is unraveling. for example, we know that examples have been given for different kinds of clams that live in the same environment. some species of clams will have a life expectancy of nor than a year two. others 500 years. the longest life expectancy of any animals. try to unz that. comparativ comparative. those with single or multiple genetic changes we can extend their life span several fold. maybe three, four, six or ten

fold. now, that, obviously, reveals something about the basic pathways that determine health and life expectancy and now the real promise and excitement currently is translating that to the equivalent pathways in humans to understand whether manipulating those pathways will improve health and life span. very informati very informative area of research. >> mr. chairman, thank you. thank you all for joining us today to discuss this situation. i am reminded that at the university of mississippi dr. arthur embarked upon a study of the heart and flowing from the research that he managed and was in charge of at the university, a textbook was written and great

strides were made in understanding and prescribing changes in life styles and medications that could have this effect or that effect on the human heart. is it time now for us to encourage and identify someone or some place where a crash course in research and emphasis on one element, this horrendous disease called alzheimer's can be undertaken maybe with the hope of marshalling the best minds we have and techniques we have for research and take one step in the future where your name might be on a textbook? what's your reaction to that? do we have the capacity to do that? what amount of funding should we urge the senate to consider

appropriating for such a crash course endeavor? >> interesting question. think back about the incredible impact that the doctor had and reverberates down through the decades what we understand about the heart. over the course of those decades we have moved more and more into a realization that for the current challenges it's bringing discipli disciplines together. certainly in alzheimer's disease the idea you can bring together people who know something about neuroscience, people who know something about clinical medicine, people who know about imaging technologies, people who are engineers, robotics experts, big data is a big part of this now. that's where a lot of the excitement is. increasingly what we need to do, the modern version is to come up with teams that are made of many brains sort of working together

and that is very much the way science has now proceeding. the brain initiative which dr. landis co-leads for us is a great example of how to achieve that. maybe you can say a word about how that is coming together that reflects a change in the dynamics. >> it's very clear that we made excellent advances in understanding brain structure. we know we have crude wiring diagrams for the brain but we don't know how information is processed along those wires, how the vision of a rose actually gets translated through many, many different way stations in the brain to recognition that this is a rose and the expectation it will smell sweet. what we really need to do to understand how the circuits work, the organization of brain, brain cells is to bring together neuroscientists, computational

people, physicists, chemists, engineers to work together develop tools that we can then apply to answer those questions about how brain circuits really function and that obviously starts with normal brain circuits but what we learn from understanding normal brain function will have significant implications for diseases like alzheimer's, other kinds of dementia, park joininson's dise and epilepsy. >> yes. first i have to agree the appreciation for the remarkable family. but in line with your suggestion of a new kind of center that will allow a translation from basic observation through pre-clinical observations the very existence of the additional appropriation this year has led

us to begin -- set aside funds for translation centers, the concept approved this morning by our advisory council, concept developed and now implemented in the context of funds available. it's intended for the sort of thing you mentioned, bring together as dr. collins mentioned individuals from multiple disciplines to look at new ways to integrate and accelerate in this area. >> thank you very much. thank you, mr. chairman, for calling this hearing. >> thank you. senator kirk. >> mr. chairman, i just wanted to highlight and praise dr. collins for the a.m.p. effort that brings together ten pharmaceutical companies. one headquartered in illinois. biogen. smith kline, johnson & johnson.

institutionally these are all shareholder sponsored entities who all are going to be very interested in bringing something to market eventually which actually means actual patients will be helped. and not 25 year -- with all these institutions coming in to play they are only interested in the clinical application of what they find. and for a lot of the people, i'm sure that's where they are most focused on. >> senator, i appreciate your raising a.m.p. because i'm personally very excited about this and put close to three years in trying to build the momentum and was thrilled that it was possible to announce this just a couple of weeks ago. it is unprecedented to have nih and academic researchers getting together around the same table with equal financial contribution, with these ten pharmaceutical companies to say this is a hard problem let's work on it together. and with agreement that all the

data is going to be publicly accessible. so we're calling this no longer a competitive part profit sees, this is pre-competitive. but the opportunities now because of the proliferation of discoveries to move those to the clinic has never been greater but overwheming to see how to do that and those ten companies came to the conclusion no one single of them could do this in the kind of time frame that's necessary. let's get together and do it as a team. and recognize that once we've done this pre-competitive part the coerce going to jump in and going to race each other to try to get to the end point of having an fda you a proved drug and we want them too. that part of competition is how we get to ultimately the treatments people are waiting for. it's an exciting model. never been tried like this. watch this closely. we put ourselves in a position

to deliver on some ambitious milestones. i think we'll get there. it will be great to mix these cultures together. the culture of the academic scientist and private-sector scientist with different kinds of ideas but agreeing as deep as their dna that what they are really at here is to try to solve problems and help patients. >> thank you. >> and i just want to make clear, this information is shared across all the companies? >> absolutely. >> the public and everybody? >> some of the companies initially like why should we join because if we sit on the outside and watch we'll still see the data, right? >> yeah. they will sit on the outside. if you're on the outside you're not actually able to steer the project, you're not able to say why don't we try that. being part of the team is going to be significant and useful and i think very exciting for the participants. i should have said alzheimer's is one of the projects that was chosen. we had to figure out which of

these various disease opportunities where the companies excited enough to put money on table and alzheimer's was one of those. alzheimer's the goal is to see what we can do about biomarkers to identify whether a therapy is working or not and study these brain networks that the doctor was talking about to identify new targets for drug treatment that we don't know about already. >> again, thank you and congratulations for pulling this group together. quite a feat. senator alexander. >> thanks, mr. chairman, thanks dr. collins and to all of you. of course we greatly admire what you've done. i think we all asked you about the same question so let me ask you again, make sure i understand it. a moonshot had a very specific goal, all the incredible human activity was organized around that specific goal.

i suppose mapping the human genome was a specific goal and all the activity was organized around that goal. you knew when you got to the moon and you knew when you finished mapping the sequence that you worked on. what is the a.m.p., the equivalent of those big crash courses as senator cochran called them or goals or is there a better goal? i think what i'm asking, i think what would be 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 it to reach the goal? in my work in public life it is always seem to me that money was not the problem but finding the old usually was the problem and

if the goal was compelling enough usually the resources would follow the goal. so tell me again what the equivalent of the moonshot of 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 the trajectory is going to be but a me see if i can address your very thoughtful question. you are right the moonshot human genome project were unique situations where you could define a precise and a precise endpoint and everybody would know whether you got there or not. you got a man on the moon okay you did it. you read out 3 million dna from the instruction book. for alzheimer's disease what would be an appropriate goal? getting a diagnosis so it's accurate. we are coming along pretty well on that one. i wouldn't say we are there but

of course the big gold is prevention and treatment so that nobody gets this disease anymore. that's far enough out into the future that i think it's hard for us with the uncertainties about how we will get there to be able to put a timetable on that. people are trying. i'm going to ask dr. hodes to say something about it. >> before you do is the goal to prevent anyone from getting alzheimer's just like we say today polio is gone in the united states? >> that would be my goal. that is very bold and very ambitious but that has to be the place to try for. i'm going to ask otis about the national plan but we also have this rain project is holding itself accountable. it's going to stretch out over a decade or so but it needs to have clear indications of whether it's succeeding or not.

ultimately can you put somebody there. maybe dr. landis could say a word about brain in terms of how we are trying to set those milestones that we can say we are getting there and perhaps you could say something about the alzheimer's plan. >> 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 1000 connections at 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 100 neurons but tens of thousands of neurons at the same time as a person or an animal to start with is performing a behavior and then to reconstruct how those circuits, those in rain cells actually directed that they gave your. if we could 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. and there are milestones. in fact those milestones are being developed and will be presented to an advisory committee to the directive. we have requests for applications out on the street now that have discrete pieces of that problem that will fund projects to answer different steps in that process. >> if you could say just a quick word about the national plan. see the national plan establishes long-term goals including the very ambitious goal by 2025 generating an effective means of treatment or prevention. what we then did was to ask what would be necessary in order to reach that success by that date and from there said a series of

specific research objectives and milestones so in 2013 in 2014 their investments in certain areas of research which will lead in 2025 to ultimate success. we don't know which of the approaches we take are going to succeed at her wits are going to fail but the milestone is designed to set out an approach that has potential. ambitious as it is we have no choice but to move towards an accelerated course. >> thank you mr. chairman. >> thank you senator alexander and i think you dr. collins and dr. landis and dr. hodes. thank you for bringing the drug companies in on this project. it's a milestone and again hopefully we will be able to continue our funding in the next fiscal year like we did in the

last fiscal year and i would be remiss if i didn't think the chairman of our whole committee for giving us the allocation with which to do that. thank you all very much and we will now turn to our second panel. >> mr. chairman if i could erase a manhattan type project landing a man on the moon and the manhattan project itself. wasn't the biggest concern the fact that there would be a discouragement or an impediment the shutdown of our government and the other sequester so that there is a lack of certainty. you have to research recruitment and retention and so on. don't you need certainty as well as resources? >> absolutely. people say the worst thing you can do to the business community is uncertainty. that is true for science in even

more so. our cycle time for projects runs about four years in order to come up with an idea and put it into practice and work hard to see if it works. when you're cycle time for support sometimes as three months and we have been there for some of these continuing resolutions and certainly when you lose 1.50 yen dollars halfway through the fiscal year due to sequester is very damaging to pursue momenta meant to be innovative and take risks. we want them out there taking risks not worrying if they are going to miss the pay line because it's so tight. if we could find that path forward madam chairwoman to that kind of stable support for medical research in the united states it would make a huge difference. >> i can't help but add here that years ago the senator hatfield came up with an idea and i joined with him on it and others did and he pointed out that when every time you buy a

drug at a drugstore or bind off the shelf or even a prescription drug some of that money goes for research. when you buy health insurance policy none of the it goes to research. think of the amount of money we spend every year on health insurance policies to treat and to take care of illnesses and none of that goes for research so senator hatfield came up with the idea, this was a long time ago of having two or 3 cents if i'm not mistaken out of every health care dollar that would come into the appropriations committee to go to nih and of course the argument was made well that would just supplant the money that we were doing so he said what you do is as long as this committee funded nih and the congress funded nih at a minimum of inflation that money

would flow on top of it and be a supplement to it. i have been preaching this for 25 years that some of this health insurance money ought to go for research and i'm sorry that the health insurance industry has always opposed it. but it seems to me 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 and we will turn to our second panel. >> now we will call her second panel dr. michael hurd dennis moore and mr. seth rogen. while they are coming to the table i will go ahead and introduce them. first dr. michael hurd a senior principle researcher at the rand corp. where he directs the rant center for the study of aging. he is also a professor at the

graduate school in santa monica california. don't your hurd paz research focuses on retirement of the social welfare systems and other topics with aging and elderly. dennis moore represented the third district of kansas in the u.s. house of representatives for 12 years. first elected in 1998 congressman moore served on the budget and financial services committees. in 2000 in the announced he would not seek re-election. prior to his time in office congressman moore served in the u.s. army reserve and assistant attorney general for the state of kansas johnson county district attorney as well as a private practice lawyer. in february of 2012 p. and his wife stephanie announced that congressman moore had been diagnosed with alzheimer's disease. mr. seth rogen a stand-up comedian, actor producer director screenwriter and voice actor originally from vancouver

british columbia again performing standup comedy moved to los angeles to pursue acting in the late 1990s and since that time mr. hodes has acted and cowritten major movies as well as voiceover work for animated films. mr. hodes raises awareness of alzheimer's disease for the nash nash -- national alzheimer's association and alzheimer's has affected his wife's family and i'm sure he will talk about that. we welcome you all here. i read your testimony last night. they are great and all of your testimonies will be made 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 gauge you in questions and answers and conversation. first we will recognize our former colleague from the house side congressman dennis moore. it's good to see an old friend

back again from the midwest. dennis thanks for being here and please proceed. >> thank you and good afternoon chairman harkin ranking member moran and members of the subcommittee. as an individual living with alzheimer's disease i thank you for the opportunity to testify before the subcommittee. alzheimer's is a devastating and ultimately fatal disease. it currently and packs 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 in june 2011. i had become concerned when i noticed i was having difficulty remembering random events and difficultly managing our household finances. since then i have learned coping skills but still recognize the issue i have with my short-term memory loss. i'm now in 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 does all-timer stiller memory and dependence and our ability to function but demands increasing amounts of care. beyond exhaustion stressed there's a 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 recent study in "the new england journal of medicine." over the next 40 years caring for people with alzheimer's from related dementias will cost 20 trillion, trillion dollars however even with this information for every 27,000-dollar medicare and medicaid spending on caring for individuals with alzheimer's the national alzheimer's the national institutes of health spends only $100 on alzheimer's research, $100 on alzheimer's research.

fortunately alzheimer's is a bipartisan issue. in 2010 congress unanimously passed the national alzheimer's project at. the act mandated the creation of the first ever national alzheimer's plan which was released in may 2012 with the goal of preventing and effectively treating alzheimer's disease by 2025. recently updated the plan includes important milestones in the timeline to facilitate achieving that goal however the goals of this magnitude goals and into changing the trajectory of the national health crisis require significant investments if we hope to realize success. recognizing this we commend congress and the leadership of view chairman harkin and leading member moran for creating a consolidated appreciation sat for 2014. this is an important down payment and step into implementing a national alzheimer's plan so they can reach the goal of effectively treating and preventing alzheimer's by 2025.

this critical funding will allow scientists to pursue innovative research that will lead to intervention and diagnostics. continuing funding will encourage a greater investment in the private sector and ultimately to it game-changing diagnostic treatment. for all of these reasons it's vital we make investments in alzheimer's disease research education outreach support activities to implement the national alzheimer's plans for fiscal year 2015. in orders take full advantage of the potential of the plan congress must see to it that the necessary resources are committed to accelerate and prioritize the government's efforts on alzheimer's. the infusion of funding for fiscal year 2014 took the next step in recognizing the correlation between investments in alzheimer's research today and a much healthier and sounder financial future for our nation. it's incumbent upon nations leaders to ensure the promise in the alzheimer's plan.

my fellow advocates and i thank you again for your support in fiscal year 2014 and urge you to stay committed to alzheimer's eshoo start discussions for fiscal year 2015. an epidemic is upon us in too many families are in situations like mine facing a fatal disease that currently has no way to prevent cure or so it's prudent prudent -- slow its progression. thank you very much. >> appreciate your being here in your efficacy. next we will turn to dr. hurd the author of the famous study that came out last year that i think really shook us all up. >> thank you for the kind words about that study. it was challenging as i will

outline now. cheering -- chairman harkin and frankie member moran i thank you for the opportunity to testify. 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 [laughter] two is to say people need more help. i've are so seen a massive amount of financial strain this disease causes and if the american people ever decide to reject driven comedy i will no

longer be able to afford it. i can't begin to imagine of people with limited incomes are dealing with this. studies show alzheimer's related dementias most costly condition in the united states and yes it's more costly than heart disease in a country where for $1.29 you can get a taco made out of doritos. they are delicious but they are not healthy. while deaths from other major diseases like heart disease hiv and strokes continue to decline alzheimer's deaths have increased 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. if disease. the thurston reason i'm here simply is to show people they are not alone. a so few people have something to relate to and i know 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 the government was first a word

alzheimer's. although a whisper is better than a the silence the alzheimer's community has been facing for decades it is still not enough. i jam of the day when my charity is no longer necessary and i can go back to being a lazy self involved and child i was meant to be. people look to their government for hope and i ask when it comes to alzheimer's disease you continue to take steps to provide more. i've like to thank the committee for the opportunity to share my story and to voice my wholehearted support the continuing work that pursues a cure for alzheimer's disease. thank you very much. [applause] >> thank you mr. rogen. i'm sorry you had to unmask me. i am really kevin spacey. [laughter] not too many people knew that.

thank you all very much. i will start with dr. hurd i'm pleased to see your research was funded by the national institute on aging. you may be aware and maybe all of you and maybe many of you were not aware that some of my colleagues in the house of representatives hold a different view of the rule of nih in health economics research. in fact the house draft in last year's approach nations bill our contra part which they released it did not pass including language that would have precluded nih from supporting any health economics research such as what dr. hurd did. dr. heard as an economist and researchers how important is nih's support to your work? are there other federal grants he could've applied for to get the study of the ground? >> it's extremely important. i would say all important to my work. i'm the holder of several investigator initiative will

borrow one's and production -- program projects. the funding comes from its long-term reach and also from its disciplinary aspect. our study involved cognitive scientist, economists, gerontologists and that kind of assembling of the team is not easy outside of the nih umbrella. the long-term reach however is extremely important and i mention the hrs. it would not have been possible without the hrs. the hrs began in 1992 and i was part of the original team assembling hrs and that sustained funding doesn't happen outside of h.r. 8 --

hrs. a similar example where we laid the example for the study is published in the new england journal really in 1998 and pursuit of her many here saw don't think the kind of study we did would be feasible outside of the nih. i don't own agency that would support that long-term study as well as a multi-disciplinary aspects. >> we did not do that on this side. i just wanted to get that out so people understand that and hopefully the house won't repeat that again this year. representative moore, as a former policymaker and a patient is there anything you personally experience that would change? is there anything we need to better educate primary care physicians on? i will ask two questions. that is number one and dennis you have spent a lot of time on this side of the dais.

if you were here what questions would you ask at nih and is there anything we didn't ask for something we didn't cover? >> i really think you have asked the appropriate questions. i just think it's important that people in this country understand that this is a disease that is affecting more and more people. i had it in my family with my dad so i wasn't terribly surprised when i was diagnosed and i understand there are genetics involved, something you wouldn't wish on anybody but it happens and i hope someday they will find a cure but right now i think as a nation we need to deal with this disease as best we can and i really really appreciate the fact that you are holding this hearing and trying to get more information so you can do the right thing. >> thank you very much dennis. mr. rogen i have got to be honest. i was reading this last night very quickly and i read through

it and i said hillary for charity? >> i forgot the t i think. >> i had to stop and go back and read it. speeds are progressive or graham. [laughter] >> tell us more about polarity for charity and why focus on young people? >> we chose to focus on young people because they are the ones who will be affected by this very soon and there seems to be almost zero acknowledgment of it in the world of these young people. it seems to be something that is not a high priority and it seems to be some thing that people again think only happens naturally when people enter their 90s and i don't think people understand that it's not their grandparents being affected but it's their parents being affected and soon enough it's them being affected. i really just saw that first-hand and really felt there was a massive hole missing when it came to 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 you were going to. >> thank you. senator moran. >> mr. chairman thank you very much. i am a tall and boring person and i would certainly be reticent to have a conversation with usa comedian. i was fully prepared to be shown up by you but it really others me that senator harkin is even more funny than me. >> that kevin spacey one was great. [laughter] >> i don't know whether i will ask a question or not and i will start with dr. hurd and this is a question and let me put this into the record and it's a question for dr. collins and his crew at nih. as i was listing to dr. hurd's

testimony it occurred to me it would be useful to understand whether the prevalence of alzheimer's is increasing or is that just a factor of us living longer? i don't know the answer to that that i assume that has a significant cost consequences. 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 and it's just that now we live longer and therefore it's not that we are physiologic -- physiologically changing. i don't know if that's a question for you are not dr. hurd but before i forgot my question i wanted to make certain that i got it in front of dr. collins. >> i can say something about that in two ways. we looked in her data to see if we saw a trend and prevalence

adjusted for age. one needs to be quite careful about increased dementia due to increases in a ching of the population from changes in dementia prevalence holding h. constant and the latter would be very important finding because that would suggest that as the population ages remakes the less prevalence than had been forecast. our forecasts are based upon constant prevalence holding h. constant so the question came up earlier about we estimate 38 .5% of those over the age of 90 are suffering from dementia. we assume that rate remained constant through 2040 so with the aging of the population people reaching those ages cause the increase in overall population increase and the increasing cost.

we saw a slight suggestion of that that we are not ready to write a paper on that until we are quite certain about that. there was a recent study in the lancet in england that suggested a decline in age-specific prevalence of dementia, quite a large defining prevalence. i think before we would want to take that and put that into a forecast we would want to have more examples from a wider range of populations. right now from ours perspective we do not see any change in age pacific islands. >> doctor we have generally been using the word alzheimer's and you have been using the word dementia. is there a a distinction to be drawn here? >> yes our study was about

dementia because that is what our data would support. we had some diagnoses of alzheimer's. my understanding is there a is somewhat of the blurring line between many forms of dementia and alzheimer's. the majority of dementia is alzheimer's and the great majority but typically there will be vascular dementia in addition to alzheimer's at the same time. >> should we expect the results of another study from you related to these topics? >> we are working right now. we have our 01 from and i h. a look at the cost of long-term care in the world of health insurance for long-term care. why do we not have functioning long-term care?

it's clear that the costs are highly skewed in the should be an insurable situation but we don't have a well-functioning market for that and we have produced one paper on that and we will produce further papers. >> thank you very much. mr. rogen i appreciate her work polarity for charity so my comments are dull and boring but it's really an expression of gratitude and i appreciate your efforts to educate and to communicate with young people. that's something i have no doubt that is missing. one of the things that i might suggest in that regard and talking to young people is we need to instill in american young men and women that desire to pursue careers, degrees education in science and research, medicine. we need the next generation of doctors that were on the proceeding panel and i would encourage you and if you have

comments in that regard to do everything it can to instill in people the desire that this is a noble calling worthy of a career. >> yeah i would love to do that but i think one of the most distressing things honestly i learned today was talking to dr. rogen before the panel in the waiting room area and he was explaining to me something that he touched on here as it 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 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 conquering them. i will do my best to encourage it but again i ask the government to create a situation

financially where there is the means for people with ideas to actually do something and backstage there are people that come to us with ideas that could literally lead to cures the disease and what we tell them is there is a one in six chance for funding. it is a more glamorous situation winan chile. alzheimer's justice and a cool disease unfortunately and it's something that was one of the most distressing things i heard today people's natural instinct would be curing this disease are discouraged from the financial landscape of this profession. >> while you earn a living as a comedian you are effective in returning my request. >> i will do it.

[laughter] you give me the means and i will give you the people. >> you will find a this plea for constant increasing of funding is one that we have made for a number of reasons but included in those reasons is the understanding that people who are making decisions about what to do in their careers need to know whether it's alzheimer's or any other disease that nih funding is going to be there and there's an opportunity for them. the uncertainty that congress and the administration can create in budgets and spending create a real challenges we try to recruit young people. >> i think that mentality trickles down to the people my age and honestly shows them that is not that high of a priority on a national level and that is what we are trying to change. >> thank you very much. let me now visit with 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 and i remember his condition and the reminder of heredity. i think my question to you is this. what is the state of knowledge, what is it that we know when you have 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 my impression would be that you would he a typical patient who learns of a diagnosis and you have pursued i assume all the opportunities to try to find things that make life better over the course of your remaining life create what is it that's out there that people can tell you our health care professionals and others that can tell you what you can do? what does the alzheimer's profession tell you to do to accomplish that in your life? >> basic way to take the

medication that they diagnosed for me and others and also to get exercise which i tried to do on a daily basis. my wife very much encourages me to do that and as her husband i say yes, dear. >> -somethings we won't forget. that's a good thing. i appreciate you, your public service and the chairman had a long list of things you did in our state and i wish you and stephanie absolutely all the very best. it's very pleasing to me to see you here not on your behalf but on behalf of all the people who sit in this audience and the thousands of americans and people around the world who have encounterencounter ed the same circumstance that you encountered. the way that you are living your life i believe gives others courage and hope and i commend you and stephanie for that tremendous addition to your life, and other role to play and you have been playing it very

well well. >> i thank you very much for those comments and i thank you for conducting this hearing and learning -- learning more about what we as a nation can do to better deal with the situation of alzheimer's because millions of americans as you on the are being affected by this. >> mr. chairman thank you. >> dr. hurd and maybe i need to get dr. rogen in on this too. i'm a little confused. listening to your response. in other words is dementia getting more aggressive, affecting more% of the population or is there just an increase in the number of people over 65 that are living longer so the instances more in another way i might say that is there any data that we have from the past about the prevalence of dementia let's say in someone

who is 50, 55? compared with what it is now? do we have a higher percentagpercentag e of our population affected by dementia? dr. hodes maybe this is for you. i don't know. punch the button. >> there is no evidence of an increase of the risk of dementia in older age. in past years there was so little awareness so relatively people reaching an age that we don't have accurate figures for that point. longitudinal studies are ongoing now but we have evidence that there is an increase in the incidence of alzheimer's at a given age. >> so the% of the population say at age 55 or 60 that was diagnosed with dementia say 50

years ago is about the same if it is now? >> there is no evidence of a change. 50 years ago we simply didn't have statistics to answer your question. >> but you said, i thought you told me that it is about the same that there hasn't been. >> i try to be careful. we have no evidence that there has been any change and i think if you're asking people to speculate we don't know of reasons for change. there are vascular components to dementia that are affected by hypertension and since hypertension is better controlled we might expect a difference but straightforward comparable diagnostic means the answer is we don't know. the studies that have been referred to the population based studies and health and retirement survey as an example

that began 10 years ago will tell us in the future will be able to answer your question when you are here 20 years from now and then we can right now. >> i'm retiring next year by the way. [laughter] >> thank you very much. dr. hodes. >> i saw the word doctor in front of the word hurd and he started asking medical questions. senator harkin asked the question i was trying to pursue better than i did and if you took 50 years away and said five or 10 is there evidence that the disease is more proud lands, the incident is changing either increasing or decreasing in a shorter period of time or again we don't have the evidence and we have to wait another 20 years? >> we don't have sufficient evidence. do you want to comment on the longitudinal study's?

>> we looked at that and this is a time period from 2000 to 2008. it was a short time period and we saw a slight suggestion of improvement in age-specific rate of dementia. we want to pursue that further because of technical reasons. as i mentioned there was studying in the lancet that said just that improvement. i would say right now that we don't know. you have to have consistent methods over long period of time. we have that at hrs but not along in one of time period to answer your question. >> part of it is the cost and when you analyze what the costs are going to be you need to know what the trend is but also from the diagnosis or the cause, are there environmental factors? i hadn't thought about high blood pressure but the increase of stress in life and higher but pressure and to set up a

consequence on the disease we are trying to eradicate? >> absolute answers part of the priorities to the national plan it means to do this sort of surveillance of the longest term success we mentioned preventing delaying alzheimer's disease will need to be reflected by monitoring these effects and to do that we have to have surveillance in those studies are now in place and it's important we maintain them. whatever interventions weather on what pressure more specific approaches to prevent or treat dementia we can monitor the impact on the prevalence of the disease and the risk of the disease to the general population. >> thank you very much and thank you for peaking my interest and thought are hodes thank you for attempting to answer the question. >> i have a follow-up question for dr. hurd. let me find her testimony here again. just a second. what did i do with that? something leapt out at me.

it was this. those who did not graduate from high school for more than twice as likely as those who graduated from college to have dementia and those with household incomes of less than $15,000 where more than four times as likely to have dementia as those with household income of 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 between age and income. very old people have much lower incomes than younger people so within the age 70 or above the

poorest people are the oldest people and ages highly correlated with dementia status. >> what you mean the poorest people are the oldest people? rich people live to be old too. they are probably living longer. >> yes, that is certainly the case. more wealthy people who live longer than poor people. people who are aged 90 live through it. not where their earnings are substantially less. when the 90-year-olds were 70 they were poorer than today 70-year-old so there is a relationship between income and age that brings the relationship between income and dementia into the quantitative aspect that you mention mentioned. >> one i read that and you say household income of less than 15,000 i would assume that's at

every stage. 70 and 72, 75, 80, 90? that's not at? >> that is not what's in the table. it's not corrected for anything for age in particular is the main aspect that it is not corrected for and in our research we do correct for that that in that particular table there is not that correction. >> i'm having trouble with this. >> ask mr. rogen. >> i actually get it i think. >> and kevin spacey does. tell me what you think. >> i think what he is saying is that all the people have less of an income and therefore if you are older by default you will have less of an income and therefore if you have dementia the odds are your old witch odds are means you don't have much of an income which supports those statistics.

[laughter] [applause] >> thank you dr. rogen. [laughter] >> it's easier to see the older population is much less educated so 90-year-olds on average have education less than high school so in that table education is highly related simply because the much older populations are less educated. >> my mistake is thinking that this was cheered at every level of age. i understand. i've got that. i just wondered why there would be that difference and there is not. thank you for clearing that up very at. >> anytime. >> you have a future at nih. or the rand corporation, i don't know which. >> thank you to these witnesses

and the earlier panel from nih. we are grateful for you allowing us to have this hearing today and i found it very useful. i appreciatappreciat e the folks here in the audience and across the country who are observing this hearing. we understand how important this issue is in a human and very direct way and we want to continue our efforts to work together to find a cure and provide hope to the american people. on a much more pedestrian matter senator collins asked that she have a statement he made part of our record and i would ask unanimous consent to accomplish her request. >> without objection so ordered and i join my friend and colleague senator moran in thanking you all and thanks for your great leadership at nih dr. cowan -- a lot of you came a great

distance and i just want you to know this is an issue that we are serious about and we have got to find the funding for it and we have got to make sure we have a steady stream of wanting. i was very happy that i was able to join years ago was senator specter to double over five years of funding for nih but since then it's gone downhill. we can do that. we got it up and that let's have to think that was where we were going to go up from there and it didn't work out that way so we need your presence here but we need your presence back in your home states and back in your congressional districts talking to your members of congress on both sides of the aisle to let them know the importance of a steady funding that we need for the national institutes of health so if you will do that i hope that our funding level this

year will reflect again the kind of increases that we had last year. we will do everything in our power to make that happen and again i thank all of you for your advocacy and i encourage you to keep strong and that advocacy. this place, this senate, this congress however much you may read to the contrary in the newspapers in and the media it does respond to you. it responds to our constituents. a response to the pressure. it responds to what people want us to do and so if you want this to happen and if you want us to make sure that we have this good funding stream for nih you have got to keep the pressure of an if you will to that then i think that we will see the way clear for great strides in getting to that point where we can actually

prevent, treat and cure alzheimer's. that is our goal and we are going to get there. thank you very much. [applause] >> housekeeping. the record will remain open until march 5 for other statements and comments from other senators. thank you all very much. safe travels home everybody. safe travels home. [applause] >> in terms of fund-raising is this a technique you hope will prove fruitful and it technique is perhaps less expensive and more efficient? >> that's none of your business.

[laughter] >> i think the glamour of reagan though had less to do with his hollywood roots per se. it wasn't the glamour of hollywood exactly but did have something to do with the skills and the grace that he is quiet as an actor that always hit his marks so he looks like he made being out there and fielding those questions look effortless which is another aspect of glamour. people who were likely to support him politically could see in him sort of the ideal representation of their views because he didn't make them embarrassed in anyway any way. they weren't waiting for him to fail. as he got older that became more of an issue but especially in those early days he had this kind of