workers up to that level over several stages so i think the white house is really looking to make this an issue. ..

alzheimer's disease is a leading cause of death in u.s. adults. up next a panel looks at the economic impact of the disease and research. actor seth rogan testified after a panel of officials. iowa senator tom harkin chairs the appropriations subcommittee on health and human services.see

>> the educated related agencien will use com these come to orde. related hearing is the fifth the subcommittee has held since 2,000 focusing on alzheimer's st disease.mitt the burden of the disease ande 0 the state of th state of the red the challenges faced by of the d caregivers.is re going back manyse years we've face heard predictions from experts about the far-reaching heard abe equencespr of this disease will have on the quality of life for american families and the burden it will place on thehave ameromy in the years ahead.for last april a study predictedcon that they would be far greatera. than anyone previously imagined. we will hear from the author on the next panel. t i dohe note this command the attention of the subcommittee. n icere were a fewde americans whe life has not been touched by amw alzheimer's disease whether a family membered or friend, the . or a common form of dementia an the risk increases withorm

increasing age. among for those living with the skri disease that ravages get worse over time as does the burden on their families and on society. s the number of american's livingo with alzheimer's has doubled of since 1980 and the growth looksd at likesof the rate as the baby. generation continues to retire in ce the future.generati the federal government involvement in alzheimer's disease research began in 19761h institutes of the national institutes of health invested a total of $3.8 million of heal research into the cause of the disease.nto t cause we now spend approximately half a billion dollars each year one. research and alzheimer's. and we have success along thesei way that the harsh reality is we still do not know how to harsh prevent, reverse definitive disease. more research is desperately an urgently needed. the subcommittee has adhered to a strict policy of notgently

earmarking money for particular diseases, particular policy or k definitively saying what diseas. or the money to the national institute on aging and the recent fiscal year 20 on this and the alzheimer's disease will be supported. we have a distinguished panel of experts today, scientists, economists, family members and we also have quite an audience. what a welcome representatives of the alzheimer's association. some of you who 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. i'm told from the university of

virginia these people are spending the day learning about the budget and appropriations and we welcome all of you here also. on the first panel of course we hear from doctor francis collins distinguished director of the national institute of health. and what kind of the research is most likely to benefit from the appropriations. i would note we are also very unfortunate to have doctor landis of the institute for near a logical disorders and stroke and also here to answer questions. the researcher that wrote the landmark grand study i mentioned earlier. this devastating disease. as a long-time colleague and friend of his i will stand to learn of his alzheimer's diagnosis after his retirement

from the house of representatives. it's no surprise to anyone whose first instinct was to educate others and continue surfing through advocacy and education. i look forward to hearing from each of the distinguished experts and before we turn to the first panel i will yield to the senator for his opening statement. and i will meet my remarks relatively brief because i would not want to detain or delay the testimony of the distinguished experts but i very much appreciate what you just said in your willingness to conduct a hearing on alzheimer's disease. in my view this could be the defining disease of the generation. i'm pleasei am pleased as you io have the former congressman dennis moore testify on his experience living with alzheimer's. i appreciate dennis as a friend and desire to take his own difficult challenges and focused them on helping other individuals and families struggling with this disease.

he is used to the years since his diagnosis to advocate for those living with the disease and in his words we need to find a cure like next week. i couldn't agree more. someone in america develops alzheimer's disease a devastating irreversible disease that slowly destroys an individual's cognitive functioning. 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 the population age ages the people diagnosed after the age of 65 will double every five years while the number of individuals 85 years and older with disease will triple by 2050 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

becomes more prevalent in the need to confront the pending health-care crisis has become ever more urgent. as you indicated the study by the corporation stated the cost is projected to double over the next 30 years or passing health-care expenses for heart disease and cancer. alzheimer's has become a disease to define a generation but if we focus our priorities on our research capacity it doesn't need to continue to be an inevitable part of the aging process. for every $27 medicaid spends caring for individual alzheimer's the federal government spends 1 dollar on alzheimer's research. the omnibus appropriations bill provided for an increase in the way that you described of $100 million for alzheimer's research and i appreciate working with you to accomplish that goal. but without a way to prevent pr, cure or treat alzheimer's it will be difficult if not

impossible to rein in the nation's healthcare cost. in this committee and in the full committee you have heard me say that i appreciate dealing with the issue of health care and health research. health research is an opportunity for those that are the most fiscally conservative and 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 a breakthrough against alzheimer's that th the delays the onset ofe disease by five years would bring a total savings of $447 billion by 2050. now the time as a nation that we fully commit to one of the greatest threats to the health of americans in the financial well-being of our country. 1962 president kennedy called the nation to action to reach the moon by the end of the

decade. we need to commit ourselves to the goal of advancing alzheimer's research with the same in the shin and urgent. over the next decade we must strive to achieve not only an effective treatment for the two or for alzheimer's. alzheimer's is the defining challenge of the generation. we need to find a cure like next week. the gift we also provide every american and every american family is a special gift. it's called the gift of hope. thank you very much. >> thank you. now we welcome the first panel. doctor francis collins the director of the national institute of health on the biomedical research entity in the world that spans the spectrum from basic to clinical research. doctor collins is a physician geneticist noted for his landmark discovery of disease

leadership of the human genome project which he started in 1993 and culminated in april of 2,003 but then continued on in that capacity until 2008 and has now come back as the director of the entire institute of health. he's an elected member of the institute of medicine, the academy of sciences awarded the presidential medal of freedom in november of 2007 and received the national medal of science in 2009 and i want to also welcomed the director of the national institute of aging who held his position as 1993. this is our primary federal agency supporting and conducting alzheimer's disease research. as the director he oversees studies of the basic called epidemiological and social aspect. the director of the institute for narrow logical disorders and stroke served as the director

since 2003 and conduct basic translational and click research on the disease brain system. we welcome you all here. thank you for your leadership of these years for the human genome project and now the entire institute of health. welcome and please proceed. >> good afternoon mr. chairman and inverse of the subcommittee. as always it is an honor to appear before you along with my two distinguished colleagues. we are here to discuss the latest research in alzheimer's use and related to a dementia that i would like to thank you for the omnibus appropriation. the subcommittee came together in a bipartisan way to reverse the deeply troubling downward spiral and the support that he and i each has found us costing

about 25% of the purchasing power over the last ten years. while difficult trade-offs did not ultimately make it possible in fy 14 to completely reverse the devastating effect of the fy 13 sequester, we are gratified that they were at least able to turn that corner. let me begin my report on the challenges and promises that we face in alzheimer's by underscoring that all of the work i'm going to discuss is about helping patients and their loved ones. that is what we are committed to and we know you are, too. one of the most famous is country music star glen campbell along with a number i was thrilled to be on hand last spring when he was honored at the alzheimer's association. here's a photograph of him. since i'm a musician also to see his great talent in national

treasure really so compromised by the devastating disease is a reminder of just how much is at stake. we've heard the sobering statistics as they've already been cited in the opening statements by senator harkin about the wave of the disease that will break over the united states as the baby boomer generation ages already about 5 million americans diagnosed with alzheimer's disease and hundreds of thousands more effective in the dementia. without the breakthroughs those numbers will continue to rise along with the terrible toll on the nation's health and its economy this disease creates. as you mentioned already the alzheimer's association estimates the nation is currently spent in more than $200 billion a year on the care of people with alzheimer's. and those costs are projected to soar to $1.2 trillion annually by 2050. to put this in the context

consider how much the nation is spending on medical research. the budget was $29.1 billion in fy 13 with 504 million tivo did to alzheimer's disease research. we are thrilled that the fy 14 omnibus includes an additional 100 million for research on the aging including alzheimer's disease but as you can see the investment pales in comparison to the cost. in our efforts to find ways to prevenprevent, delay or treat alzheimer's and other dementia we are bringing to bear all possible technology from genomics to imaging to the big data tools, but the task is an. we don't know how the normal brain from chen left alone with alzheimer's. in fact this month's national geographic provides a glimpse of what the nih funded researchers are doing to explore what's been

called biology's last frontier of the human brain and i couldn't help but notice on the newsstand has the brain on its cover for the current issue. as you know the nih is leading the initiative called a brain research in advancing the latest nero technology that is an acronym and we are grateful for the subcommittee support for this pioneering venture in the omnibus. the initiative, which the president has called it the next great american project will create tools capable of examining the activity of the billions of nerve cells that works and pathways in real-time but sure to be a tremendous value to the researchers working on autism, schizophrenia, epilepsy, genetic brain injury, depression, parkinson's disease and all forms of dementia including alzheimer's. let me tell you what a recent findings generated a lot of excitement. it involves a protein called

tau. this is one of the culprits and alzheimer's disease. to give you a better idea of how it affects the brain i would like to show you a short video and i will explain what you are looking at. in the normal brain cells it stabilizes the structures that are called microtubules and involving internal transport that's what you see happening here with this amazing she did it separate from those causing them to fall apart, strands of the protein then combine this 110 goals within that iran disabling the transport system into the story is so ultimately he and his animation. in certain parts of the brain disconnecdisconnects from each d eventually they die causing memory loss. it begins to lose function

showing you her hear what happed and advanced alzheimer's disease as the green substance is shrunken away by the loss. an exciting finding recently we discovered that this protein we used to think was just inside and therefore inaccessible, but actually transferred from the neuron almost like an infection. that may sound a little scary but for us it means opportunities. proteins that spend their whole existence and they are hard to attack but if we can find a way to prevent the transmission perhaps by blocking we might be able to stop alzheimer's and it's tracks. unless we can identify accurately those that might benefit from them. to do that we need better ways to diagnose alzheimer's is and o do so as early as possible. until recently we could only

conclusively diagnose alzheimer's by someone had died. the plaques and tangles was made up but now thanks to the recent advances in the technology we can detect signs of alzheimer's and cited the living frame. what you see here are scanned with two living people on the top and alzheimer's whose brain lights up with markers on the left and the amyloid on the right. the scans are able to detect the deposits years before. that should improve our ability to diagnose and hopefully treat alzheimer's at a much earlier stage before so many have been lost. it may be possible to use them

or other biochemical measures in blood or spinal fluid to see if a therapy is working even before it has an impact on the course of memory loss. this kind of escher's cold biomarkers and one of the top priorities is to find and validate those biomarkers for clinical use and the treatment is working as quickly as possible. this leads me to the issue of clinical trials. until a couple of years ago we focused primarily on trying to treat people with an unmistakable symptoms of advanced alzheimer's. those that lost many of their brain cells. the results are almost entirely discouraging. but today we are focused on earlier interventions. so many of the cultural ideals are looking at precinct emetic patients at high risk that don't get show symptoms. one of the these and can prevent

cognitive decline by starting the treatment before any symptoms appear and the unique situation where the testing is among the members of a large family in colombia as well as u.s. patients who share a dominantly and heritage added mutation that causes all tim alzheimer's at about age 45 and places the individuals at high risk. the treatment in the eighth and emetic alzheimer's will test another antibody and a thousand volunteers aged 65 to 85 these individuals do not yet have any symptoms of all timers but they are found to have sufficient amyloid and their brain to be considered at risk to the person in the middle. this is somebody with completely normal function but there's a lot. that's somebody that will go on to alzheimer's. this is a greater opportunity again to try the therapeutics

before there has been major damage done to the brain. all of these studies will be on the validated biomarkers as i mentioned a minute ago which is why i am accepted to announce the medicines partnership for amp earlier this month. amp is an unprecedented collaboration between the nih and the pharmaceutical firms and accelerate identification and testing of drug targets from alzheimer's disease, diabetes, rheumatoid arthritis and lupus. about $230 million will be invested over five years with the nih industry contributing. we have scanned in the game. for alzheimer's, amp will incorporate a biomarker into the oncoming tribals and designed to delay or prevent the disease. another part of the project will develop in the alzheimer's brain potentially pointing to the new therapeutic markets.

the fy 14 budget increase for research on disease of aging will be able to make major investments in cutting-edge areas that we would otherwise not have been able to pursue. genetic analysis, stem cells and translation centers. we will now be able to fund a significant number of investigative grants that otherwise wouldn't have made and would have gone unsupported. members of the committee, i began talking about people with alzheimer's disease. i would like to close with another tribute to a deeply affected group and represent it i'm sure by many in this room the people who care for their loved ones as they slip int slio the shadows of alzheimer's and dementia. one such caregiver is a friend of mine, former tv newscaster who cared full-time for her husband in their home for nearly 20 years. he was a leading investigator

until he began showing signs of confusion in his late 50s. last week he shared with me these lines from a book she's working on about her experience entitled poignantly slow down dancing with a stranger. as i write these words white shares the room she was always present although he was absent. the person i knew was lost but not gone. so heartbreaking and so true. what he has suffered, what farrell suffered we fight back against this insidious disease. that is our commitment and there is no time to waste. on behalf of my colleagues in q4 the opportunity and we look forward to your questions. >> thank you again, doctor for the presentation. when you were talking about the

brain in a shi -- it if i was dg into work late monday. it must have been a friday and i heard you on the diane lane show talking about that and once again, i see this with all respect to one of the unique individuals who can take a complicated and hard to understand the scientific processes and research and put it in a language that people understand, and 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 doesn't understand a lot of what this research is involved with, so thank you very much and i compliment you for that ability. we will start a round of five-minute questions. doctor collins this may be a simplistic question after the presentation but i see all kinds of plans about what people can do to prevent alzheimer's.

there's articles telling them to do a crossword puzzle every day. there is a website suggesting by the many of the 12 were others, too. what does the research note about these claims. what are the best things individuals can do to lower the risk of dementia or alzheimer's? stack you are right those are questions on many peoples minds and befriended a lot of research in that area. i want to turn to my colleague to summarize what we have learned. >> thank you for the question. all of us have to make lifestyle choices everyday. there is no such thing as not making a choice. we do by our actions and there is no question general issues and exercise are important in many aspects and they correlate to the risk factors for alzheimer's so we know that

having high blood pressure or inactivity or overweight associated increased risk of alzheimer's is, but the critical question you asked do we know with certainty what activity, but exercise, what diet will decrease the alzheimer's disease as a question being addressed by ongoing research for which we do not currently have a definitive answer. i would emphasize again that is important research going on in the area in the studies looking at the effect of exercise intervention and individuals before they develop alzheimer's at early stages and years to come. we will have the results of those studies. there is a major study 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 funded by investigators at the university of kansas looking at the precinct of magic disease to determine whether exercise changes the course of the disease or changes these brain

alterations that we have seen. we have the ability now and doctor collins emphasized as we never did before to look at the ability to make a difference not just once people develop the disease and then we followed for years, we can look before there's any evidence of the disease and we can use biomarkers and to determine whether exercise or cognitive exercise will affect the course of the process. we are in the midst of the studies and we should have the answers. in the meantime although we say that we are doesn't have a definitive answer there are so many good reasons to be practicing the lifestyle choices that you mentioned that we have no recommending those. >> our former surgeon general brought up an important issue in the "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 history of the tuskegee experiments, so the community level is natural. is there anything to inspire more participation by the minorities in these research endeavors? >> i read that editorial. it was indee indeed a compellina moving reminder of how important it is to focus on health disparities and that is an issue for all timers disease. i will say one thing and then ask the doctor to see a bit sayt about what we are doing now. one of the greatest opportunities and encouraging the purchase of patient visits the researchers themselves represent the diversity of the country you can see that over and over again. this is a strong reason we need to focus on improving and expanding the diversity of the biomedical research. we have a number of new programs

that are quite bold and this is a high priority for me to eat if we could do a better job of recruiting and intending and mentoring and supporting individuals from underrepresented groups in order to populate the clinical trial work force is with people who represent the country and would therefore perhaps be more welcoming to the groups that right now are unsure about whether they want to join. they are in underrepresentation of the minorities into clinical studies and particular trials. all of the research centers have reached the quarters and some of them for example in the city of chicago happens to serve an area where 90% of individuals are african-american but in all cases they are intended to maximize working actively with the cdc and the part is in an

exercise but overall his attempted to increase the recruitment of older adults andn the pickle studies and trials with a very concrete emphasis on minorities. we have a program of center is particularly focused on the aging research into developing methods for enhancing the right liaison and communication with minority communities to increase the level of comfort, confidence in the stability of the clinical research. >> i appreciate that and i hope that you will do it very aggressively. the chair of the distinguished appropriations committee and a distinguished member of the subcommittee was the first person to bring to the subcommittee attention a long time ago the disparity in terms of research and trials at nih. so i hope that we have taken a lesson from that and become more

aggressive in including these minorities in the click trials. i want to thank you very much. >> doctor collins, thank you for your testimony. we are honored to have you here. you indicated in your testimony several developments promising opportunities in this area of research in alzheimer's. let me ask you to put this in a kind of chart. where are we fight series compared to today and are they growing at a faster rate all the time? how does this look in the progress that's being made or not being made? >> i love the question. thank you senator. if you go back ten years of people looking at alzheimer's disease we were pretty frustrated. the ability to understand what are the molecular pathways to bring this condition with

limited tools and technologies we are not very good at making this kind of comprehensive assessment. our clinical trials largely based upon hunches were turning out badly. we had a limited number of ideas about where to go next and in my view and i've been there for 20 years, the last five years has been really quite a dramatic change in the environment. we learned through a variety of approaches things we probably didn't expect what now be in front of us this soon. for instance what are the hereditary factors involved in this state that runs in families? we have gone from knowing the sort of one risk factor for the onset alzheimer's disease depending on who you ask 19 or 20, and that number is growing and it will be growing rapidly this coming year in part because of the appropriation because we are expanding our ability to do

that kind of genetic analysis. we have gone from understanding the player to understanding more about how to be able to look at the pathways in the brain that are quite complex and point to the others in the pathway that are important. we've gone from having a few clinical trials focus largely on advanced cases of alzheimer's to what you heard about today because we can make a prediction about high risk started the treatment earlier just like people have often said and i will say it now if you try to test waiting until somebody had a far advanced congestive heart failure you would assume they don't work because they were too late. if we want to have a successful treatment for alzheimer's start while there are still lots of brain cells and protect them. so there is a sense in a community of momentum coming from imaging and genomics into clinical studies and biochemistry and behavioral

studies. everything sort of coalescing. so it is the right moment to try to provide that extra push and that's why what happened in fy 14 couldn't come at a better time. it is a momentum that we hope can be sustained into this kind of science is not a 100-yard. we are engaged in a marathon and the other thing about the trajectory is it is an upward course but i guarantee it won't be a smooth and steady one because we will have big romance of the realization that we learned from them we didn't expect and then we will have a disappointment where the trial took good and we have to go back to the joint board. it's going to be jumping around but it's headed upward and it is my hope is that my commitment that with your help and with the amazing talent that we have in our u.s. and worldwide scientific workforce, we are going to tackle and win this battle. >> i appreciate that answer and again you used the word hope and

what you are suggesting is there are reasons to be hopeful. >> i support that statement 100%. >> left me ask about a particular set of people we care about. scientists have discovered people with down syndrome are at an increasing risk for developing alzheimer's disease by the age of 40 as i understand almost every one with down syndrome has made deposits in their brain, yet only about half of those people who have down syndrome ever developed dementia. even if they do, they develop plaques. so my question is the nih exploring the question of why 50% have a different outcome of a different result than the other 50%? >> 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 understand the disease that has such a high risk both in terms of understanding why some develop and some do not and what are the modifiers but also this could be a great opportunity to try new therapeutics at the early stage before the dementia has begun to take its toll on the function. there was a workshop that was held specifically on this topic about alzheimer's and other domain to him down syndrome kids. there is a challenge in terms of things like the informed consent we would want to do whatever we were doing in a way that is absolutely recognizing the difference in carrying out research and individuals that made themselves not in the best position to give consent but there is an interest in this and i would predict in th the coursf the next year or two there will be new initiatives focused on that very special populations to see what we can learn and how we can help

>> senator mikulski then she'll be and alexander. >> thank you very much mr. chairman and also the ranking member for organizing this hearing on the topic of alzheimer's. it's very special to me because my own father died at the consequences of alzheimer's. now 25 years ago. so i have been at this a long time. for many of us we had it in our own families or people near and dear to us, and of course there are key names that talk about this. the justice sandra day o'connor and others. but this is an epidemic that hits people at all income levels and whether you were the president of the united states

or a businessman like my father or like the men and women in the audience could wear the purple sash they know there's a tremendous impact on family life, family budget and i think we all do need a sense of urgency about how we can come to grips with this and accelerate what we want to do. i want to welcome the essays here. doctor collins i was just at the nih. i'm so proud of the fact i called the national institute of hope. and that is what brings all of the men and women and families in is here. my question, because we have been able to do something in this year's appropriations and i might add every single senator is also a member of the appropriations committee.

and we can feel proud of the fact that close to $30 billion into the nih, a billion more than last year we increased the national institute of aging by $100 million we have included money for the brain initiative, so we think they are taking the progress. we would like to be able to accelerate the breakthroughs which you just testified so promising. but we also need a sense of urgency because we are facing an epidemic in this country and when the family budget in the medicaid budget ultimately the impact of people being in a long-term care what doctor collins i remember what senator harkin and senator specter did is it that we need more money, are people going into science,

what do we need to put the breakthroughs in the scientific method how can we because the clock is ticking and the numbers are growing. the poignancy is there. we are not at the moment limited by ideas. we are not limited by scientific opportunities. we are not limited by talent. we are unfortunately limited by resources to be able to move this enterprise forward at the pace that it could take. and it would be of course a great to see that achieved and even setting aside the pressing need for the benefits of health to also be a nice investment in our economy since many of you know the way in which we put the

dollars in the cold research pays back more than twofold in a single year. people that have great ideas that come to the nih with those and again we have some ideas of the areas that we think are exciting but we also count on the community to come up with ideas the three of us couldn't necessarily have thought about in the most rigorous process but the chance of getting funded right now is about one in six. so five out of six or going aw away. the community is struggling. you and i looked at the survey from education on monday that just came out on a day indicating what is happening in the investigating and laboratories delivered the country. remember the nih is just at bethesda. it goes out to all 50 states where the research is going on. and more than half of those investigators are saying he had

to let somebody go or they could take on a student he wanted to or they are not going to start a project they are excited about but they don't have the resources to do it. we are constraining the innovation, the creativity of the most amazing engine for discovery the world has seen which is america's science. >> what you're saying is people were discouraged from coming forth because they don't think that there is going to be the money there to fund their project. i see the doctor shaking their head. is that right we have promising ideas and people in our own country have these ideas ready to roll. the whole idea of doubling & we shared an idea that if we had a stathad astate of stayed on the 3% growth initiated by harkin specter where would we be now at $40 billion? >> if you look at the curve of what the trajectory was prior to

the doubling it was about a 3% growth rate, and that is accounting for inflation soap in terms of purchasing power if we stayed on the curve we would be at about $40 million. >> so it is $10 billion less than where we are but only at the national institute of aging, but as you pointed out this could be in a variety of other institutes from the doctor on the behavior, everything. so here's my question. i understand you have an idea that if we took inflation plus 5% for about four years we could get to where we ought to be. >> if you do the mat math that d carry nih up to that $40 billion number. if it were possible to do that. and again, that is a decision that is up to the congress, the administration, the american people. but from a perspective the best thing we could do would be to get on that kind of stable trajectory so that we can plan

more than three months at a time so we can actually tell young people who are coming into the field there is a career for you. america is going to invest. you will be able to be part of an adventure that is going to be exciting and world changing. right now people are not sure at this uncertainty that is doing quite a lot of damage to the momentum. as a mac my time is up but i look forward to this seems to be an achievable goal if we put our minds to it. >> thank you senator mikulski. senator shelby. >> doctor collins i just want to share some statistics i have and see if you agree that alzheimer's is the only cause of death among the top ten causes in america without a way to prevent, cure or slow it progressions.

is that true here in america and what about some of our european countries by germany, england, france, switzerland, more industrialized countries? some of these statistics if you have the prevalence? >> yes sir. the alzheimer's epidemic is not just the u.s.. its worldwide and it is a functioning of the population which by the way is a good problem medical research has contributed to 100 years ago alzheimer's was barely known because people didn't live long enough to get it and now we have created a wonderful possibility of longer life but with it has come the responsibility to do something. >> so some of us but hope to be in the 90 thursday good chance we might have symptoms is that correct? >> iin a second penalty study of the journal we kind of went

through those and as i recall, people in the '90s the incident or some form of dementia is a bit about 40%. >> tell us again about how some of the translations on the research that's going on in the nih hopefully will affect maybe a slowdown or cure for this. >> it is the process of going from the basic science discovery translating those into clinical benefits, and that is a major focus on all of the parts, all 27 institutes have an investment. i think that i will ask the doctor to get a quick snapshot of some of the most exciting areas that we are pursuing right now. >> i can organize thoughts along doctor collins responds to the areas of focus progress because they do ranged from basic discovery through the translation but the basic discovery noted for example the

number of the new genetic risk factors and protective factors that we are finding. in the funding that was made available this year we are going to be able to expand the new analysis that will look at not just the single speed but what goes on in a normal and diseased brain an into these are identifg the critical point into the central but we can test the hypothesis by tracking and intervention to that specific process to find out in a single animal model is that has the right effect and then translate those into clinical studies. for translation to emphasize what doctor collins has noted we now have the capability of getting intervention of the state with which we can track to the extensive damage that has occurred in the brain and we can also track the effectiveness through the markers that will be the ones we know now and the new markers that will develop as we

learn more about the product of the disease so everything is about translation and in fact in the planning and process now for 2015 with the benefit of the increased funding by appropriations we will be looking at the right balance of the initiatives across the spectrum from the translation to the clinical trials to the most promising initiatives and this is an ongoing effort we will meet periodically to best minds to revise those plans into the translation is what is primarily in line for this whole effort and i think the progress that from basic science through classical trials is going to support acceleration with full utilization of resources made available. >> let me add one other transformation based on stem cells. the ability to be able to take a biopsy or blood sample from somebody with alzheimer's disease and by adding just for

genes ended than having achieved that at a certain number of factors and convinced those to become iran's so you can take somebody with alzheimer's disease with a skin biopsy or blood cell and study their neuron's password of is a disee in a dish and already that has been done and it's clear you can tell the difference in those near -- neurons that is an exciting opportunity to be about to understand the disease in a way that you can work closely with and use it as a drug screen because you ca can then take a thousand or 100,000 drugs and say which of these make the alzheimer's cells look like the normal neurons. >> in your research, you do research into animals that live longer than others? and see if there's corresponding problems in their aging process? and if so, could you speak to

that? >> this is the role of the institute on aging on the question of longevity. >> go ahead. >> looking at the species with different lifespans and expectancies is a very important part of the research that's ongoing and is still a mystery that is unraveling. so for example, we know that examples have been given for different kinds of plans that live in the same environment. some species will have a life expectancy of no more than year or two and others are 500 the life expectancy of any other animal. try to understand that the kind of comparative genetics. we know if one takes certain species, flies and worms have been to be those that are easily manipulated with single or multiple genetic changes in those animals we can expand their lifespan severalfold.

maybe three, four, six or ten fold. that obviously reveals some in about the basic pathway that determined health and life expectancy and now the real promise and excitement currently is translating that to the equipment pathway in humans to understand whether manipulating the pathway will improve the health and lifespan so very informative area of research. >> senator shelby? >> mr. chairman, thank you for joining us today to discuss the situation. and i am reminded of that at the university of mississippi to doctor embarked upon a study of the heart, and flowing from the research that he managed and was in charge of the university a textbook was written in great

stride in understanding and prescribing changes in lifestyles and medications that could have this effect or that affect 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 cause alzheimer's can be undertaken maybe with a hope of marginal in the best mind we have integrated this techniques of research that we have and take one step into the future where your name might be on a textbook what is your reaction to that and do we have the capacity to do that with the amount of funding what should we

urge the senate to consider appropriating for such a crash course in denver. >> interesting question to think back to the incredible impact that he had and reverberates back through the decade about what we understand about the heart. over the course of those decades we have moved more and more that current challenges is bringing disciplines together that seems to be the most promising way to make progress and certainly in alzheimer's disease, the idea that you can bring people together that do something about an euro science and medicine and imaging technologies, people that study janelle max and people that are engineers, robotics expert, big data is a big part of this now. that's where it would've the excitement is, so increasingly what we need to do for the modern version is to come up with team that are made of many

brains sort of working together and that is very much in the way science is proceeding. in the brain initiatives which the doctor leads for us is a great example of how to achieve that. i will maybe say a word about how that is coming together in a way that reflects change in the dynamic. >> it's clear that we have made excellent advances in understanding the brain structure. we know that we have the crude wiring diagrams but we don't know how information is processed a long those wires and how the vision of them gets translated through many different stations in the brain to the recognition that this is into the expectation that the roads whilst most wheat. what we need to do to understand how the circuits work that is the organization of the brain cells is to bring together the

scientists, computational people, physicists, engineers to work together to develop tools we can apply to those questions about how the brain circuits really function and that obviously starts with normal brain circuits but what we learn from understanding the normal brain function will have implications for disease like alzheimer's and other kinds of demand to come a parkinson's disease, epilepsy, so we hope to build up those kind of teams the doctor spoke about to unravel the language of the brain. >> i would have to agree with the remarkable family. one of them was in the medical school and quite remarkable folks. but in line with your suggestion of a new kind of center that will allow a translation from basic observations to the preclinical stages, in fact the very existence of the additional

appropriations this year has led us to begin a set-aside of the funds for planning the grants for the translation centers and the concept was approved this morning by the advisory council and the concept developed and was now implemented in the context of a little so it is intended to do just what you were mentioning to bring together the multiple disciplines to look at new ways to integrate and hopefully accelerate progress in this area. >> thank you mr. chairman for calling this hearing. >> mr. chairman i just want to highlight and praised doctor collins for the effort that brings together the pharmaceutical companies and i will mention them and i will know it headquartered in illinois by eugenics, smith and johnson and johnson, lily and merck, pfizer are all a part.

i would say that institutionally these are all shareholder sponsored entities that are going to be interested in bringing something to market eventually which means actual patients will be held and not a 25 year pact where with all these institutions coming into play they are only in the clinical application of what they find. and for a lot of the people i'm sure that is what they are most focused on. >> i appreciate you raising amp and was thrilled to announce this a couple weeks ago. it is unprecedented to have the nih and academic researchers getting together around the same table with = agile contributions with the beast and pharmaceutical companies to say this is a harder problem with

work on it together in with an agreement that all of the data is going to be publicly accessible so we are calling this no longer a competitive of the process. but the opportunities now because of the proliferation of the discoveries about the basic science that is involved in alzheimer's and dvds and rheumatoid arthritis and loop it is overwhelming to see exactly how to do that and those ten companies kind of came to the conclusion that no single one of them could do this and the kind of timeframe that is necessary. so let's get together and do it as a team and recognize that once we have done this pre- competitive private companies are going to jump in and race each other to try to get to the end point of having the approved drug and we want them to because the competition is healthy get to the treatment people are waiting for. ..eatments 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 i think we have all else to do the same question so let me ask you again to make sure i understand it. a moonshot had a very specific goal and all the incredible

human activity organized around that specific goal. i suppose mapping the human genome was a very specific goal and is all this activity was organized around that you knew when you got to them and end you knew when you finished mapping the sequence that you worked on. is the equivalent of those big crash courses you call them or is there, is there a better goal what i'm asking and what i think everyone asked is what would be the equivalent in terms of brain research or alzheimer's? what should the goal be and then how much money should a great country put behind them to reach the goal? in my work in public life it is

always seem to me that the money was not the problem. finding the goal usually was the problem. the goal was compelling enough usually the resources would follow the goal. so tell me again what the equivalent of the moonshot or 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? >> we don't know what the trajectory is going to be but let me see if i can try to address your very thoughtful question. you are writes the moonshot as a genome project those were unique situations where you could define a very precise endpoint and everyone would know whether you got there or not. you got a man on the moon okay you did that and you read out 3 billion letters in the instruction book. for alzheimer's disease what would be an appropriate goal? there is going to be lots of

goals in there. getting diagnosis of its accurate and can be done early. we were coming along pretty well on that one. i wouldn't say we are there but of course the big goal this prevention and treatment so that nobody gets this disease anymore. that is far enough out in the future and 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 but 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? >> that would be my goal. that is very old and very ambitious but that has to be the place to try for rate great i'm going to ask hodes to say something about the alzheimer's national plan but we also have this rain project and 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, milestones. even with the moonshot you had

milestones about whether you could get there. can you go-round the moon and come back and ultimately -- maybe dr. landis could say something about how we are trying to set the specific milestone so we can say we are getting there and perhaps you can say something about the alzheimer's forum. >> yes 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 that each of them has in order to understand how the brain actually functions. so what we need to do is to be able to record not just from one neuron or 10 neurons 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 brain cells actually direct that behavior. 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 presented to the advisory committee to the director. we have her request for applications out on the street now that have discrete pieces of that problem that we will fund projects to answer. different steps in that process. >> and if you could say a quick word about the national plan because it's all about milestonemilestone s. >> the national plan establishes long-term goals including the very ambitious goal by 2025 generating an effective means of treatment or prevention. while 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 has projected if successful will lead 2025 to ultimate success. we don't know which are going to succeed and which are going to fail but the milestones are designed to set out an approach that has the potential for that. as ambitious as it is we have no choice but to move towards just got accelerated course. >> thank you mr. chairman. >> thank you senator alexander and i think you dr. collins dr. landis and dr. hodes for being here today and congratulations on bringing together the drug -- on this project. it's a milestone and hopefully we will be able to continue our

funding in the next fiscal year like you did in the last fiscal year and i would be remiss if i didn't think the chairman of the full 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 others have raised a manhattan like project to genome landing on the moon the manhattan project. wasn't one of the biggest concerns the fact that there would va discouragement or an impediment is the shutdown of our government and the other sequester so that there is a lack of certainty. you have to not only sequence the human genome but you have that to sequence what you are going to do when in terms of research recruitment retention and so on. don't you need certainty as well as resources? >> absolutely.

people say the worst thing you can do to the business community is uncertainty and that's true for science even more so. our cycle time for projects runs about four years in order to come up with an idea and putting into practice working hard and see if it works when the recycle time for support sometimes it's three months and we have been there for some of these continuing resolutions and certainly when you lose $1.5 billion have been through the fiscal year due to sequester is very damaging and for the ability for people to be innovative and take risks. we want them out there taking risks not worrying about they will miss the pay line because it's so tight. if you can 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 help but add here that years ago senator hatfield and i

join joined with him on it and others did, he pointed out every time you buy a drug at a drugstore, every time you buy an off-the-shelf drug or even a prescription drug some of that money goes for research. when you buy a health insurance policy none of the goes for research. think of the amount of money we spend every year on health insurance policies to treat and to take care of illnesses. none of the goes for research so senator hatfield came up with the idea and it was a long time ago about having two or 3 cents out of every health care dollar that would come to the appropriations committee to go to nih and of course the argument was made well that would just supplant the money that we were giving so he said no what you do as long as this committee funded nih or the congress funded nih at a minimum

of inflation than that money would flow on top of it and be a supplement to it. i have been preaching this for 25 years. some of this health insurance money ought to go to research and i'm sorry the health insurance industry has always opposed it. but it seems to me and this is the one getting some amount of money 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. >> thank you. now we will call her second panel dr. michael hurd congressman dennis bourne and mr. seth roby and while they are coming to the table i will go ahead and introduce them. first dr. michael hurd the senior principle researcher at the rand corp. redirects the

rand center for the study of aging and is also a professor at the graduate school in santa monica california. his research focuses on the economics of retirement and other topics related to aging and the elderly. we have congressman dennis moore who represented the third district of kansas in the u.s. house of representatives for 12 years read first elected in 1998 congressman moore served on the budget and financial services committees. in 2000 he announced he would not seek re-election and prior to his time in office congressman moore served in u.s. army and the u.s. army reserve assistant attorney general for the state of kansas, johnson county district attorney as well as a private practice lawyer. in february of 2012 he and his wife stephanie announced that congressman moore had been diagnosed with alzheimer's disease. mr. seth rogan a stand-up

comedian actor producer director screenwriter voice actor originally from british columbia and moved to los angeles to pursue acting the late 1990s. since that time mr. broken has acted and covert in movies and done voiceover work for animated films. mr. broken raises awareness of alzheimer's disease as a celebrity champion for the 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 and they're great. all your testimonitestimoni s will be made a part of the record in their entirety and i would ask if you would give a short five minute summation of that so we can gauge you in questions and answers and conversations. first we will recognize our former colleague from the house

side congressman dennis moore. it's good to see an old friend back from the midwest. dennis thanks for being here and please proceed. >> thank you and good afternoon chairman harkin ranking member miranda members as the committee. as an individual living with alzheimer's disease a thank you for the opportunity to testify before the subcommittee. alzheimer's is a devastating ultimately fatal disease. it currently impacts more than 5 million americans. these men and women are husbands and wives mothers and fathers, sisters and brothers republicans and democrats. i should know, i'm a former member of the u.s. house of representatives and i'm i'm what of them. i was diagnosed with alzheimer's disease almost three years ago on june 1, 2011. i've become concerned when i noticed i was having difficulty remembering random events and difficulty managing our household finances. since then i've learned coping skills to recognize the issue i

have in 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's a great need for educating the general public in funding research for a cure. not only is alzheimer's stealing her memories independence and events where ability to function but it demands increasing amounts of care beyond the exhaustion and stress the financial burden. the direct cost of alzheimer's 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 and related dementias will cost 20 trillion, trillion dollars. however even with this information for every 27,000-dollar medicare or medicaid spent while caring for individuals with 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. the act mandated the creation of first-ever national alzheimer's plan which was released in may of 2012 with the goal of preventing and treating alzheimer's disease by 2025. the plan now includes important milestones in the timeline to facilitate achieving that goal. however goals of this magnitude changing the trajectory of a national health crisis require significant investments if we hope to realize success. recognizing this we commend congress for their leadership for providing historic increase for alzheimer's in a consolidated appreciations act of 2014. this is an important down payment implementing the

national alzheimer's plan so we can reach the goal of effectively treating and preventing alzheimer's by 2025. this critical funding will allow scientists for interviews is research that will read to -- lead to treatments and diagnostic. continuing these programs will ultimately lead to a game-changing diagnostic treatment. for all of these regions -- reasons researched education outreach and support activities to implement the national alzheimer's plan for fiscal year 2015. in order to take full advantage of the potential of national alzheimer's plan congress must see to it that the necessary resources are committed to accelerate and prioritize the governments of efforts on alzheimer's. it 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

and is now incumbent upon her nation's leaders to ensure the promise of the alzheimer's plan. my fellow at the kids and i thank you for your support in fiscal year 2014 and urge you to stay committed to alzheimer's as you discuss 2015. an epidemic is upon us and to many families are in situations like mine and there's no way to prevent or cure. as a nation we cannot afford to wait until alzheimer's bankrupts us. we must make a smart investment now to realize a better healthier future for families and our country. thank you very much. >> i appreciate you being here and your advocacy. next we will turn to dr. hurd the author of the famous study that came out last year. i think it really shook us all up.

>> thank you for the kind words about that study. it was challenging as i will outline. chairman harkin and ranking member miranda thank you for the opportunity to testify about the monetary costs of alzheimer's. my research my co-authorco-author s and i did it the rant corp. published in "the new england journal of medicine." the emotional costs are in motion -- immeasurable. our most modest goal was to measure the monetary cost of dementia but even so there were a number of challenges. first most people with dementia have coexisting health problems such as a history of stroke or heart condition which by themselves would lead to higher costs. we wanted to find the cost attributable to dementia itself not the health care costs of people with dementia. a second difficulty concerns in formal care that is unpaid care

most often performed by a family member. we had to develop a method of placing a monetary value on that care knowing it could have large tax 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 aging nia under the leadership of dr. hodes and susman had the foresight to invest in a data infrastructure for health and retirement study without which this research could not have been accomplished. the h.r.s. has become the preeminent data source for general population representative studies on aging. it provides a wide range of data including cognition, health care cost an informal caregiving. however the h.r.s. lack the measure of the dementia status of its respondents. in 1998 a multiple disciplinary

team including myself proposed and then fielded a small subsidy to diagnose a sample of respondents for dementia status. in our study we use these diagnoses to estimate the status of a much larger sample around 6000 persons. according to our results in 2010 the prevalence of dementia in the population 871 or older was 14.7%. annual health care spending attributable to dementia was about $29,000 per person. a great majority of these excess cost were for nursing home stays and paid in-home care. adding in the cost of unpaid or informal care increased total annual cost per person to between $42,000.56000 for the range depends on the method of valuing informal care. we were not able to allocate costs between all timers disease and other dementia but we know

the great majority would be due to alzheimer's. we used census estimates to s. make up annual cost of dementia in the united states and we found actual spending attributable to dementia was $109 billion in 2010. this cost place is dementia as the most costly disease in the united states in terms of actual spending. adding in costs for informal care increased its estimate to a range of $160 million and $250 billion per year. because the prevalence of dementia sharply increases with age and the aging of the population itself particularly when the baby boom generation reaches an advanced age will increase future costs. the cost for care purchase the marketplace while increased in real terms from the 2010 value of $109 billion to $260 billion in 2040 and that's in real

terms. adding in the cost of the informal care increases the cost estimate to the range of 380 billion to $510 billion per year in 2040. we are extending this research in two directions. dementia is very costly on average but these costs are unequally distributed. some households than nothing while others might spend more than $100,000 per year. in new research we find the cost or even more skewed when accumulated over many years because some people at dementia can't be in a nursing home for five years or even longer. the accumulated cost can be financially devastating to some families. in the second extension because of the great importance of long-term care and the total cost of dementia rand is developing a report to be released 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 breakthroughs that would prevent or delay onset are urgently needed but even in the absence of such breakthroughs innovations and policies that can reduce costs should the pursuit. thank you mr. chairman and ranking member moran for your attention and i look forward to your questions. >> thank you very much dr. hurd and we will now turn to duck their -- mr. seth rogan. >> thank you very much for having me as to chairman, ranking member moran and members of the subcommittee. thank you for the opportunity to testify and the opportunity for me to be called an expert at something because that is cool. [laughter] i don't know if you know who i am at all and you told me you have never seen knocked up mr. chairman. it's a little insulting. [laughter] >> i want the record to note. >> this is very important guys. >> yeah the record to know this

is the first time i will wager in any congressional hearing in history that the words not to have ever been used. >> you are not going to like the rest of this then. [laughter] first i should answer the question i see many of you are asking i'm aware this has nothing to do with the legalization of marijuana. in fact if you can believe that this concerns something that i find even more important trait i started dating my wife lori nine years ago when her mother was almost 54 years old. the first time i met her parents i was excited to spend time with them and make lori think i was the type of guy she should continue dating. it was this trip the first time i met my now mother-in-law that lauren first admitted to herself and then to me that something was off with her mother. i guess the clues were unfortunately easy to spot since both of her parents have alzheimer's disease. soon after this trip at 55 years old lauren's mother was diagnosed with early onset alzheimer's.

now at this point my impression of alzheimer's was probably what i assume most people's impression is. i thought it was something only really old people got and i thought the way the disease primarily showed itself was in the form of forgotten keys, wearing mismatched shoes and being asked the question over and over. this period which is was the only way i had seen alzheimer's displayed in television lasted a few years for lauren's mom. after that however is when i saw the ugly truth of the disease. after forgetting who she and their loved ones were my mother-in-law a teacher for 35 years forgot how to speak, feed herself, dressed herself and go to the bathroom or self all by the age of 60. lauren's father and a team of caregivers dedicate their lives to letting my mother-in-law be as comfortable as she can be. they would love to do more but can't because as you have heard unlike any of the other top 10 causes of death in america there is no way to prevent, cure or

slow the progression of alzheimer's disease. another thing i didn't realize until i was personally affected with the shame and stigma associated with the disease. it was before i was born but i'm told at a time when cancer had a stigma people were ashamed by. public figures would be voices of hope with people in similar situations and although it's turning this is currently where we are largely out with alzheimer's disease it seems like great trait is because of this lack of hope that my wife and friends and myself decided to try to do something to change the situation. we started hilarity for charity. it's a fund we have for alzheimer's to help families struggling with cutting aids research. that's right the situation is so dire that it caused me a lazy self-involved generally self-medicated manchild to start an entire charity organization. it was through this that we thought we were just complaining

there was nothing to be done but actively taking steps to do something instead of being disappointed the young people are so misinformed about the reality of the disease we started to educate them. we recently started a program that allows university students to hold their own polarity for charity events and started 18 schools nationwide signed up to hold events. the fact that we got college students to stop playing video games and volunteer their time is a huge incompetent especially considering x-box one and playstation 4 came out this year and i'm sure these people know what i'm talking about. i came here today for a few reasons reasons. one i'm a huge house of cards fan. [laughter] marathon the whole thing, had to be here. two is to say people need more help. i personally seen a massive amount of financial strain this disease causes and if the american people ever decide to

reject jenna tell you driven comedy i will no longer be able to afford it very please don't. therefore i can't begin to imagine that people with more limited incomes are dealing with this. as you have heard studies show alzheimer's and unrelated dementia is the most costly condition the united states. it's more costly than heart disease in a country where four $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 stroke continue to decline death from alzheimer's have increased 70% in the last 15 years prayed over 5 million americans have alzheimer's and at this rate in 35 years as many as 16 million will have the disease. the third reason i'm here simply is to show people they are not alone. so few people share their personal stories and so few people have something to relate to. i know that if me and my wife saw someone like me talking about this it would make us feel

a little less alone. americans whisper the word alzheimer's because their government whispers the word alzheimer's and although a whisper is better than the silence the alzheimer's community has been facing for decades it's still not enough. he needs to be yelled and screamed to the point that it finally gets the attention and the funding it deserves and needs. i jama the day when my charity is no longer necessary and i can go back to being a lazy self-involved manchild i was meant to be. people look to their government for hope and i ask when it comes alzheimer's disease you continue to take steps to provide more. i would like to thank the committee or the opportunity to share my story and to voice my wholehearted support for the continuing work in the cure for alzheimer's disease. thank you very much. >> thank you mr. rogan. that was very good. although i'm sorry you had to unmask me. i am really have been spacey in disguise.

not too many people knew that. [laughter] thank you very much. i will start with dr. hurd. i'm pleased to see your research was funded at the national institute on aging. you may be aware and maybe all of you or maybe you are not aware some of my colleagues in the house of representatives hold a different view of the role of nih in health economics research. in fact the house drafted draft of last year's appropriations bill our counterpart which they release but did not pass included language that would have precluded nih from supporting any health economics research such as what dr. hurd did. dr. hurd is an economist researcher how important is nih in support to your work and are there other federal grants you could've applied for to get the study off the ground? >> it's extremely important.

i would say all important to my work. i am the holder of several investigator initiative are wrote one's and program projects as well as -- the importance of nih funding comes from its, primarily from its long-term reach and also promotes multi-disciplinary aspect. our study involved scientists and economists, gerontologists and that kind of assembling of a team is not easy outside of the nih umbrella. the long-term reach is extremely important. ia mentioned h.r.s. is the foundation and it would not have been possible without h.r.s.. h.r. is began in 1992 and i was part of the original team and assembling h.r.s. and that sustained funding over many

years does not happen outside of nih. i mentioned the 1998 study and a similar foundation for a study in the new england journey -- journal in 1998 so i don't think the kind of study would be feasible outside of the nih. i don't know an agency that would support that kind of long-term study as well as the multi-disciplinary aspects. >> we didn't do that on this side but i just want to get that out so that people understand that and hopefully the house won't repeat that again this year. representative moore as a former policymaker and the patient is there anything you personally experience that would change answer anything we need to better educate primary care physicians on number one. i will ask two questions.

that is number one and secondly you have spent a lot of time on this side of dies. dais. if you were here what questions would you ask of nih? is there anything we didn't ask for something we didn't cover? >> 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 that there was genetics involved. it's something you wouldn't wish on anybody but it happens and i hope someday they will find a cure but right now as a nation we need to deal with this disease as best we can and i really appreciate the fact you're holding this hearing and trying to get more information so you can do the right thing. >> thank you very much.

mr. rogan i have got to be honest. i was reading this last night very quickly. hillary for charity? hillary? >> i forgot the t i think. >> i had to stop and go back. >> it's a progressive program. [laughter] >> tell us about polarity for charity. >> 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. it seems to be something people again think only happens kind of naturally when people enter their 90s and i don't think people understand it's not their grandparents gang affected by their being affected and soon them being affected.

i really saw that first-hand and 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 they were going to. >> senators moran. >> mr. chairman thank you very much. i don't know if i will ask mr. rogan any questions. i would certainly be reticent to have a conversation with you as a comedian. i was fully prepared to be shown up by you but it really bothers me that senator harkin is even more funny. >> that kevin spacey line was great. [laughter] >> i don't know whether i will ask you a question or not. this probably is the question and let me put this in the

record as a question for dr. collins at nih. as i was listening to the testimony it occurred to me it would be useful for me to understand whether the prevalence of alzheimer's is increasing or is that just a factor of us living longer? i don't know the answer to that but i assume that has a significant cost consequence so are you expecting greater costs in the future as a result of longevity and then just scientifically on every search basis has alzheimer's been with us and to the degree that it is today and it's now that we live longer and therefore it's not that we are physiologically changing. it's just that we live longer and therefore the evidence exists? i don't know whether that's a question for you.are hurd but before i forgot my question i wanted to make certain i got it in front of dr. collins.

>> i can say something about that in two ways. we looked in our data to see if we saw in a trending prevalence adjusting for age so you're exactly right. one needs to be quite careful about increased dementia due to increases in aging of the population from changes in dementia prevalence holding age constant. the latter would be a very important finding because that would suggest as the population ages we may see less prevalence than had been forecast. our forecasts are based upon constant prevalence holding age constant, so the question came up earlier about over the age of 90 we estimate 38.5% of those over the age of 90 are suffering from dementia and we have assumed that rate remained constant till 2040 so it's more people reaching those ages that

caused the increase in overall population prevalence and increases in costs. we study our data quite carefully whether we could see any change in age-specific rates of dementia overtime. we saw a slight suggestion of that but we are not ready to write a paper on that until we are really quite certain about that. there was a recent study and lancet in england that suggested a decline in age-specific prevalence of dementia, quite a large decline in prevalence. i think the four we would want to take that and put that into a forecast we would want to have more examples of that from a wider range of populations. right now i think from our perspective we do not see any change in any specific prevalence. >> we generally have been using

the word alzheimer's and you have been using the word dementia. is there a distinction to be drawn here? >> our study was dementia because that is what our data would support kerry we had some diagnoses of alzheimer's but we didn't have enough observations really to distinguish those. this is somewhat outside of my area of expertise but my understanding is there is somewhat of a blurring line between many forms of dementia. the majority of dementia is alzheimer's but typically there will be vascular dimension 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 an our 01 from nih to look at long-term care and all costs of long-term care in the role of health insurance for

long-term care insurance. it's very clear that the costs are highly skewed and we don't have a well-functioning market for that. we have produced one paper on that and we will produce for their papers. >> thank you very much. mr. rogen i appreciate your work for laird he 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 communicate with young people. that's something i have no doubt is missing. one of the things that i might suggest in that regard in talking to young people is we need to instill in american young men and women and the desire to pursue careers degrees education in science and research medicine.

we need the next generation of the doctors that were on the preceding panel and i would just encourage you and maybe you have comments in that regard but to do everything you can to instill in people the desire of this noble calling worthy of a career. >> yeah i would love to do that but one of the most distressing things honestly learned today was talking to dr. hodes it on the panel in the waiting room area and he was explaining to me somebody touched on as he was talking was how the funding for the research in this area is so sporadic and inconsistent that people and i relate to it as 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 again i ask the government to create a situation financially where there is the means for the people with ideas to actually do something. there are people that come to us with ideas that could literally be the thing that cures this type of disease amount we have to tell them is there is the one in six chance of not getting funding and they probably take from that if i focus on heart disease i will make more money and save lives but it's a more glamorous -- glamorous situation financially. alzheimer's is not a cold disease unfortunately in a something was obviously one of the most distressing things i heard today even peoples whose natural instinct would he to pursue curing this disease are discouraged from the financial landscape all this profession. >> while you earn a living as a

comedian you are effective in returning my request requests. >> i will do it. you give me the means and i will give you the people. >> you will find 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 budgets and spending create a real challenges we tried to recruit young people. >> i think that mentality trickles down to people my age and honestly shows them that it's 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 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 her read the tea. 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 is you would be a typical patient who learns of the diagnosis and you have pursued i assume all the opportunities to try to find things that make life better over the course of the remaining life and what is it that is out there that people can tell you, health care professionals and others i can tell you what you can do? what does the alzheimer's

profession tell you to do to accomplish that in your life? >> basically to take the medication that they diagnosed for me and others i think it also to get some exercise which i try to do on a daily basis. my wife very much encourages me to do that and is a smart husband i say yes, dear. >> -somethings we won't forget. dennis again i appreciate your public service and the chairman had a long list of things you have done 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 encountered the same circumstance that you encountered and 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, another role to play and you are playing it very well. >> i thank you very much for those comments and i'll so thank you for conducting this hearing and learning more about this. we as a nation can do to better deal with the situation of alzheimer's because millions and millions of americans as you well know have been affected by this. thank you very much. >> mr. chairman thank you. >> dr. hurd and maybe i need to get.or hodes and on this to matt. i'm a little confused here. listening to your response on this in other words is dementia getting more aggressive affecting more the population orders or an increase in the number of people over 65 who are living longer? is there any data we have from the past about the prevalence of

dementia let's say of someone who is fit the or 55 compared with what it is now? so do we have a higher percentage 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 in the risk of dementia at a given age. as you are alluding to in past years there was so little awareness and specificity of diagnosis that we don't have accurate figures for that point. certainly longitudinal studies are ongoing 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 50 years ago is about the same as it is now? >> all i can really say is there's no evidence of the change. 50 years ago we simply didn't have the statistics to answer your question. >> but you said, i thought you told me it is about the same, that there hasn't been a change. >> i try to be careful. we have no evidence that there has been any change and i think if you ask us to speculate we don't know the reasons for change. there are for example vascular components to dementia affected by hypertension and since hypertension is better controlled the straightforward answer is comparable diagnostic means it can allow us to answer your question and the answer is we don't know.

the studies that have been referred to, the population-based studies and health and retirement survey as an example are and beginning now and began 50 years ago will tell us in the future and we will be able to answer your question when we are here 20 years from now better than we can write now. >> i am retiring next year by the way. [laughter] dr. hodes. >> i saw the word doctor and started asking medical questions. senator harkin asked the question i was trying to pursue better than i did and if you took the 50 years away and said five or 10 is there evidence that the diseases more prevalens changing either increasing or decreasing in a shorter period of time or again we don't have the evidence that i have to wait another 20 years?

>> we don't have sufficient evidence. do you want to comment on the longitudinal studies? >> in the hrs we looked at that. this is a time period from 2,002,008. it's a short time period and we maybe saw a slight suggestion of improvement in age specific dementia but we want to pursue that further because of technical reasons. as i mentioned there was the study in the lancet that suggested improvements but i would say right now that we don't know. you have to have very consistent methods over a long period of time. we have that in the hrs but not long enough time to be able to answer your question. >> i think why i think this is important is you analyze what the costs are going to be any need to know what the trend is but also from the diagnosis or the cause, are there environmental factors? i hadn't thought about hide blood pressure but the increase

of stress in life and higher blood pressure what is the consequence and those that have consequence on the disease we are trying to eradicate? >> absolutely. as a part of the parties for the national plan to do the surveillance of the lunges -- longest term success preventing and delaying alzheimer's disease will need to be reflected by monitoring these effects and we have to have surveillance. those studies are now in place and it's important we maintain them. whether it's blood pressure more specific approaches to treat dementia we can moderate the impact on the risk of the disease in the general population. >> thank you very much and dr. hurd thank you for peaking my interest and dr. hodes thank you for attempting to answer the question. >> i have a follow-up -- and for dr. hurd. let me find your testimony here

again in just a second here. something web doubted me -- 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 were more than four times likely to have dementia as those with household incomes 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 age is highly correlated with dementia studies. >> what you mean the poorest people are the oldest people? rich people live to be old too. probably live longer. >> that is certainly the case. more wealthy people live longer than poor people. it's a cohort difference. people who are aged 90 live through period where their earnings were substantially less than people who were 70 so when the 90-year-olds were 70 they were poorer than today's 70-year-old so there is a relationship between income and age that rings the relationship between income and dementia into the quantitative aspect that you mentioned. >> but when i read that and use

a household income less than 15,000 i would assume that's at every stage, 70, 72, 75, 80 and 90? >> that is not what is in the table. it is not corrected for anything for age in particular is the main aspect that it is not corrected for and of course in her research we do correct for that but in that particular table there is not that correction. >> i am having trouble with this. >> ask mr. rogen. >> i actually get it i think. i think i do, right? >> and kevin spacey. >> i think what he is saying that older 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

odds are you are old and odds are you don't have much of an income which supports those statistics. [laughter] [applause] >> thank you dr. rogen. >> it's easier to see the older population is much less educated so 9-year-olds have on average in education of less than high school so that table education is highly related to status simply because the much older population is muslim -- much less educated. >> my mistake was thinking this was true at every level, not age. i got that. i just wondered why there would be that difference and there is not. thank you for clearing that up. you have a future at nih. or the rand corp., i don't know

which. >> thank you very much to these witnesses and thank you to the earlier panel from nih. we are grateful for you allowing us to have this hearing today and i found it very useful. i appreciate the folks here in the audience it across the country who are observing this hearing. we understand how important this issue is in the 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 be made part of the record and i would ask unanimous consent to accomplish her quest. >> without objection so ordered. again i jam my friend and colleague in thanking you all. again thanks for a great leadership at nih dr. collins, dr. hodes dr. hurd and dr. land

is thank you for your great leadership and thank thank you for all of you who came a great distance. i want you to know that this is an issue that we are serious about and we have got to find the funding for it but we have got to make sure we have a steady stream of funding. it's something that just can't continue. i was happy that i was able to join years ago to double over five years the funding for nih but since then it has gone downhill. we can't do that. we got it up and that plateau thinking it would go up from there but it didn't work out that way. we need your presence here but we need your presence back in their home states and back in your congressional districts talking to your members of congress on both sides of the aisle to let them know the importance of this and the importance of the steady funding that we need from the institutes of health so if you will do that

i hope that our funding levels 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. it responds to the pressure. a response to what people want us to do and so if you want this to happen, if you want is to make sure we get this good funding stream for the nih you have to keep the pressure up and if you will do that then i think that we will see the way clear for great strides in getting to

that point where we can actually prevent, treat and cure alzheimer's. that is our goal and we are going to get there. thank you very much. [applause] .. her statements and comments