the federal government's involvement with research began in 1976 when three institutes of national institute of health invested 3.a million dollars for research into the cause of this disease. we now spend approximately half a billion dollars each year on research and alzheimer's disease. and we had success along the way but the harsh reality is we don't know how to prevent or reverse or definitively diagnose alzheimer's. more researches desperately and urgently needed. the subcommittee zero is a years a strict policy or definitively with the peer review process for the

national institute on aging promising signs of alzheimer's disease will be supported. we have a distinguished panel of experts here today and family members and also quite a and audience. i will welcome the representative of the alzheimer's association summit you came along way to be here today we thank you for your tireless worker about the need to do more for your loved ones. also we have students from the university of virginia spending the day learning about budget and appropriations. on the first panel will hear from dr. francis collins distinguished director of national institutes of health and what kinds of research are most likely to

benefit from our appropriations and we will also have dr. lee and this and also from the national institute of aging also here to answer questions on this second panel we go to the researcher who underwrote the study that i mentioned earlier and joined by two individuals impacted by this devastating disease. finally congressman is here today as a longtime colleague and friend was saddened to learn of his diagnosis soon after his retirement after the house of representatives for ago no surprises first instinct was to educate your advocacy and education for are live for to hearing from our experts before we turn to the first panel for the opening statement.

>> chairman thank you very much i will make comments brief because i do not want to delay the testimony of our distinguished experts but i appreciate what you said a and to conduct this hearing on alzheimer's aziz with to be the defining diseases of our generation. i am pleased to have former congressman more here to testify with his experience living with alzheimer's and i appreciate him as a friend and his desire to take his own challenges to focus to help other individuals struggling with this disease. since his diagnosis he would advocate those we need to find a chair next week. i could not agree more. a devastating irreversible

brain disease that destroys cognitive functioning including memory and thought. it affects more than 5. 2 million people and more than 44 million worldwide according to the alzheimer's disease international. while a number of individuals 85 and older this will triple by 2015. already it is the sixth leading cause of death and currently no care no diagnostic test, no treatment. with the baby boomer generation this becomes more prevalent with the need to confront the pending health care crisis that is ever more urgent and as you stated the cost of dementia is projected to space double surpassing health care expenses for heart disease and cancer.

alzheimer's will define a generation if we focus priorities on research capacity does not need to continue to be an inevitable part of the aging process. for every $27 expense the federal government only spends $1 on research. if this was 2014 under the appropriation bill and i appreciate working with you to accomplish the goal. and is not difficult or impossible to read in the health care cost. health research is an opportunity for those for the most fiscally conservative and caring and

compassionate because we can save tremendous amounts of money it is an opportunity to work together to find a solution. one study has found a breakthrough to delay onset by five years is a total savings of $447 billion by 2015 with the financial well-being of the country 1962 president kennedy called the nation into action by the end of the decade we need to commander cells of alzheimer's research at the same ambition and urgency. over the next decade we must try to achieve only effective treatment but a cure for alzheimer's it is the defining challenge of

our generation. we need to find a cure. next week. the gift we all could provide every american every american family is a special gift it is the gift of hope. think you very much. >> now we welcome our first panel dr. francis collins from national institutes of health overseeing the work of the largest biomedical research entity in the world to span the spectrum from basic to clinical research. dr. collins is noted for his landmark discover things -- discoveries of the human genome project starting in 1993 culminated april 2003 then continued on and then comes back as the director of the national institutes

of health the elected member of the institute of medicine and the national academy of science in got the middle of science 2009 also want to welcome the director the national institute of aging this is the primary agencies supporting and conducting research. the overseas studies of the social aspects of aging and the director serving since 2003 supports thank conducts basic translation in clinical research on the brain stem. we welcome you here. dr. collins thank you for your leadership through all

these years for the human genome project is now for the national institutes of health. you may now proceed. >> good afternoon mr. chairman and members of the subcommittee. it is a great honor to be here before you along with my colleagues. and dimension to get into the science the subcommittee came together in a bipartisan way deeply troubling down word spiral headed is costing us research over the last 10 years. well difficult trade-offs did not make it possible to completely reverse the devastating effects we're gratified nih could turn the corner. let me begin on the

scientific challenges and promises we face. lenders going all the work but i will discuss is really about patients and the loved ones. when of the most famous is glen campbell. last spring he was honored at the gala here is a photo of me and him with the autographed guitar pick that is my prize positioned to see his great talent it is a reminder how much is at stake. by senator harkin after the way the disease that will break over the united states

as it ages already 5 million americans and hundreds of thousands more affected with other types of dementia. without new scientific breakthroughs those numbers will rise as long as a toll on our health and economy as a mentioned already we're currently spending $200 billion per year in those cost to soar at $1.2 trillion by 2015. to put it into context how much we're spending on medical research looking hatter budget those of his devoted to research. we are thrilled it includes

an additional $100 million but as you can see the investment pales in comparison and to find a way to look another dimension of from genomics to imaging and big david tools but there are great many things we still don't know how the normal brain functions. in fact, this month "national geographic" provides a glimpse of what nih researchers call the last frontier, the human brain and that also notice "scientific american" also has the brain on its cover. the brain research through innovative technologies and

is anachronism bring we are happy for this support through the f y 14 omnibus. do the next great american project capable of examining the activity billions of nerve cells and networks and pathways in real times. the schizophrenia, epilepsy schizophrenia, epilepsy, a traumatic brain injury, a depression . >> than to generate a lot of excitement to give a better idea how defects blubbering i will show you the short video. with normal brain cells the protein stabilizes

structures better called microtubules with the internal transport with this amazing machine. but with alzheimer's it separates from those microtubules causing them to fall apart and strands of the protein combine to form tangles with in the neurons disabling the transport system to destroy the so ultimately. can as you see in the ultimatum -- animation. it disconnects and eventually they die causing memory loss. the effect on the brain is shrinks and begins to lose function as the substance is shrunken by the loss of brain cells. but wine exciting finding is a protein that we just used to think was an accessible

was transferred from neuron to neuron. but for us it means opportunities for therapy but if we can find no way to prevent that cell to cell transmission we could stop it in its tracks. unless we can identify accurately those who may benefit and to do that we need better ways to diagnose alzheimer's and as early as possible. until recently we could only conclusively diagnose after someone had died looking at brain tissue with a classic sign of alzheimer's diseases the plaque and the tangles malice with recent advances

we can detect signs of alzheimer's inside the living brain. what you see here the brain lights up with markers on the bottom you see a normal brain. quite a difference. to look at the deposits amyloid year before a onset of symptoms that to be a '02 help diagnose at a much earlier stage before so many brain cells have been lost in my also be possible to use these scans and blood or spinal fluid to see if the new therapy is working or as an impact on memory loss. . .biomarkers. one of our top priorities is to

find and validate those kinds of biomarkers for clinical use so we'll know if treatments are working as quickly as possible. this leads me to the crucial issue of clinical trials. until a couple of years ago we focused primarily on trying to treat people with unmistakable symptoms of advanced alzheimer's. those who had already lost many of their brain cells. the results, i'm sorry to say, have been almost entirely discouraging. but today, we are focused on earlier interventions. so many of our newest clinical trials are actually looking at presymptom attic patients who are at high risk but don't yet show sy to see if stopping the treatment anytime the symptoms disappear. we are testing this among the members of a very large family in colombia. as well as some u.s. patients who share a dominantly inherent in the genetic mutation at about

age 45 and pleases those individuals in extremely high risks. the second study the anti-amyloid treatment and alzheimer's also called a four wood test another antibody age 65 to 85. these individuals do not have any symptoms of alzheimer's but they are bound to have sufficient amyloid in their brain to be considered at risk like the person in the middle. this is someone with a completely normal function. is that there somebody that will go on to alzheimer's? is a great opportunity to try therapeutics for there's been major damage done to the brain. as i mentioned a minute ago which is why i'm excited to announce the accelerating medicine partnership earlier this month. it is in collaboration between

firms and to be accelerated treatment of drug targets for alzheimer's disease, diabetes rheumatoid arthritis and lupus. about $230 million will be invested over five years where the industry contributes equally. we both have skin in the games. they will incorporate an expanded set of biomarkers in the ongoing trials designed to delay or prevent disease and evaluate them for effect. another part will develop maps of molecular networks in the alzheimer's brain particular pointing to the new therapeutic markets. empowered by the 100 million fy 14 budget increase for the research on diseases of aging nih will be able to make investments in the cutting-edge areas of research that we would otherwise not have been able to pursue. genetic analysis and the translation centers. similarly we will be able to

fund a significant number of investigator research grants that otherwise wouldn't have made the pay line and would have gone unsupported. mr. chairman and members of the committee i began talking about people with alzheimer's disease. i would like to close with a tribute to another group and represent that i'm sure by many in this room the people who care for their loved ones as they slip into those shadows of alzheimer's and dementia. one such caregiver is a friend of mine a former tv castor who cared full-time for her husband in their home for nearly 20 years. he was a leading investigator at nih until he began showing signs of confusion in his late 50s. this last week she shared these lines from a book that she is working on about her experience and titled slow dancing with a stranger. as i write these words a glow of light fills the light even

though he's absent his lost but not gone. so heartbreaking and so true. what they suffered is what inspired all inspires all of us in the alzheimer's research to fight back against this insidious disease as swiftly as possible. that is our commitment. there is no time to waste. on behalf of my colleagues thank you for this opportunity. we look forward to your questions. >> thank you again for a very lucid presentation. when you are looking at the green initiative i was driving into work late monday it must have been friday or monday if i was coming later. [laughter] and i heard you on the diane ream show talking about that and once again i say this with all respect you are one of the unique individuals who can take

a very competed in hard to understand scientific process in the research and put it in language that people understand. and i want to thank you for that because what you said on the show just brought it home. to the average person who doesn't understand a lot of what this research is involved. so thank you very much. this may be a simplistic question after the presentation but i see all kind of plans about what people can do to present alzheimer's. there are brain games for sale articles telling seniors to do a crossword puzzle every day sudoku also. there are vitamin e. or b12 and there may be others, too.

what do they know about the claims and what individuals can do right now to lower the risk of alzheimer's and dementia disease. >> i'm going to turn to my colleague to summarize what we have learned. >> all of us have to make lifestyle choices every day. there is no such thing as not making the choice. the general issue is health, exercise, diet on many important and they correlates to the risk factors so they know that having high blood pressure or in activities or overweight are associated with increased risks of alzheimer's disease but the critical question that you asked do we know with certainty what activity, but exercise, what die it will decrease the probability as a question being addressed we

do not have a definitive answer the individuals are before they develop alzheimer's or early stages of alzheimer's and in the years to come we will have the results of those studies. there is a major study called life looking at exercising folks and then looking at the impact on their ability to maintain mobility and also cognitive functions. there are two studies currently funded by the investigators at the university of kansas are looking at the presentiment to court early symptomatic disease to determine whether exercise actually changes the course of the disease or changes these brain alterations that we have seen. we have the ability now as we never did before to look at the ability not just wants just once people develop the disease and then we follow up for years. we can look before there is any disease and we can use

biomarkers and we can determine whether exercise or cognitive exercises will affect the course of those prophecies. we are in the midst of the studies now and in the next year we should have the answers. in the meantime although we see the research didn't have a definitive answer there are so many good reasons to be practicing the positive aspects of the lifestyle choices that you mentioned mentioned a wee had no intention of recommending those. >> thank you, doctor. the former general brought up a very important issue in this past sunday's "washington post." he noted that that african-americans are two to three times more likely to develop alzheimer's disease and the non-hispanic whites, but they participate in clinical trials as far lower rates than other ethnic groups. we all know that shameful history of the tuskegee. so the level of trust rest beneath the -- distrust is natural. is there anything they can do to inspire more participation by the minorities in the east

research endeavors? >> i read that editorial and it was indeed a compelling and moving as a reminder of how important it is to focus on the healthiest pretties and that is an issue for alzheimer's disease. i will say one thing and then ask you to say another thing about what we are doing now. one of the greatest opportunity in terms of encouraging the participation in clinical trials is that the researchers themselves represent the diversity of the countries. you can see that over and over again this is a reason we need to focus on improving and expanding the diversity of our own biomedical research workforce. we have a number of programs that are quite old and this is a personal priority for me to try to see if we could do a better job of recruiting and maintaining and mentoring and supporting individuals from the underrepresented groups in order to populate the clinical trial workforces with people who represent the country and would therefore perhaps be more

welcoming to the groups that tentatively right now are unsure about whether they want to join or not. in terms of what we are giving are getting in the trial because all of the centers are engaged in that. >> we are making efforts to correct what you pointed out in the under representation of the minorities and clinical studies and clinical trials. the research centers for example in the outreach core some court some of them for example in the city of chicago have been to serve in the area where some 90% of individuals are african-american but in all cases the outreaches are intended to maximize recruitment and we are working with the cdc and the former partners in an exercise that overall is to increase the recruitment of older adults at the clinical trials with a very concrete emphasis on minorities. we have a program of centers that are particularly focused on the aging research into developing methods for enhancing the liaison and communication to

increase their level of comfort and stability of the clinical research. >> i appreciate that and i hope that you will do it very aggressively. the chair of the committee and of the subcommittee was the first person to bring this subcommittee attention a long time ago the disparity of women in terms of the research trials so i hope that you take a lesson from that and we can really become aggressive in including these minorities in these clinical trials. so i thank you very much and i will turn over to the senator. thank you for your testimony. we are honored to have you here. you indicated in your testimony several developments and promising opportunities in this area of research and alzheimer's

let me ask you to put this in my view in kind of a chart. where were we fighters ago compared to today and are the increases of knowledge are they growing at a faster rate all the time? how does this look in the progress that is being made or not being made? >> i love the question. thank you senator. i think if you go back ten years people working in the alzheimer's disease were pretty darn frustrated at the ability to understand what are the molecular pathways that have gone awry in has gone awry in the brain to cause this condition with limited tools and technologies we are not very good at making that kind of coverage and assessment. our clinical trials largely based upon the hunches were turning out badly. we had a limited number of ideas on where to go next. in my view command i've been there for 20 years, the last

five years have been really quite a dramatic change in that environment. we have learned through a variety of approaches things that we probably didn't expect would be now in front of us this soon to read for instance what are the hereditary factors involved in the disease? is clearly runs in the families. we have gone from one risk factor from the late onset type of disease to now depending on who you ask 19 or 20 and that number is growing and it will be growing rapidly because of the appropriation because we are expanding our ability to do that kind of a genetic analysis. we have gone from understanding and amyloid as the player to no understanding a lot more about the town and to be able to look at the pathways in the brain that are quite complex and at that point to other sort of moved in the pathways that are important and might be drivable.

we've gone from having a few clinical trials focused largely on advanced cases to what you heard about today where now because we can make a prediction about high risk to start the treatment earlier just like people have often said if you try to test by waiting until somebody at the far advanced congestive heart failure you would assume they don't work because you are too late. likewise if we want a successful treatment starts while there are still lots of brain cells and see if you can protect them so there is a sense in the community of the momentum and it's coming from the imaging and genomics and clinical studies and biochemistry and behavioral studies, everything sort of coalescing so it is the right moment to try to provide that extra push. that's why what's happened in fy 14 couldn't come at a better time. it's momentum that we hope can be sustained as you know this kind of science is not a 100-yard.

we are engaged in a marathon. the other church activities that you are asking about is on an upward course but it won't be smooth and steady. we will have big big minds of the realization that we have learned something we didn't expect and then we will have big disappointment for the clinical trial that looks good somehow. but it's headed upwards and it's my hope and commitment that if -- width of the amazing talent that we have in our u.s. and worldwide scientific workforce we are going to tackle and when this disease that'll. >> i appreciate that answer and again you use the word out and i always use the word hope and you are suggesting there are reasons to be hopeful. >> i support that statement 100%. >> let me ask about a particular set of people that we care very deeply about and scientists have discovered that people with down syndrome are at an increased risk for developing alzheimer's

disease. by the age of 40 as i understand almost every one with down syndrome has deposits of their brain yet only about half of those people that have down syndrome ever developed dementia. even if they do, they develop plaque and so my question is are they exploring the question of why the 50% have a different outcome from a different result than the other 50%? >> i just spoke this morning to the doctors better actor of the child health institute about this very issue. this is another opportunity perhaps to try to understand this disease in a group that has such a high risk and both in terms of understanding by some developed and some do not what are the other modifiers that this could be an opportunity to try new therapeutics at the earliest stage before the dementia has begun to actually take its toll but there was a

workshop that workshop that will focus specifically was help specifically on this topic about alzheimer's and other. there is a challenge the 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 who made themselves but best position it would depend on their parents. but there is an intense interest in this that i would predict based on that will that would shop that in the course of the next year or two, there will be intact new initiatives focus on that very special population to see what we can learn and how we can help. senator mikulski plex >> thank you very much mr. chairman and also ranking member for organizing this hearing on this topic of all timers. it's very special to me because

my own very dear father died of the consequences of alzheimer's. now 25 years ago. so i have been asked this a long time and for many of us we have had it had it in our own families or people near and dear to us and of course there are those that talk about this justice sandra day o'connor and others. but really this is an equal opportunity epidemic. it has people in all income levels by president ronald reagan or does this man like my father or the men and women in the audience that where a purple sash. they know this impact on the family life and budget and they do need a sense of urgency about how we can come to grips with

this index of a rate what we want to do. i want to welcome the witnesses. i was just there on monday and i'm so proud of the fact i call it the national institute of hope. that is what brings the men and women and family members here. my question because we have been able to do something in this year's appropriations and i might add. there are 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 making that

progress. that comes from the other esteemed witnesses. we would like to be up to accelerate the breakthroughs that you just testified seemed so promising but i feel that we also need a sense of urgency because we are facing an epidemic in this country and the impact again on the family budget and the medicaid budget is the impact of people being in the long-term care. i remember what the senator did when they doubled it. they said we need to know when people are going into science? where do we need to put this kind of fast track so that these promising breakthroughs for the scientific method how can we because the clock is ticking and the numbers are growing. the poignancy is there but you

see how we can help move this along? tonight i appreciate the question senator and senator and it was great hosting you on monday. we are not limited by ideas. we are not limited by scientific opportunities that we are not limited by talent we move forward at the pace that it could take and it would be great to see that achieved and it would actually -- even setting aside the need for the benefits to help would also be a nice investment in our economy since many of you know the way in which we put dollars in into medical research pays back more than twofold injustice single year. those that come with them again we have some ideas that we think are exciting but we also count on the community to come up with

ideas that we wouldn't have necessarily thought about and we can put them through the most rigorous process but the chance of getting funded right now is about one in six. five out of six are going away. the community is incredibly incredibly stroke of struggling and moralizing. we looked at this survey on monday that just came out on monday indicating what's happening to the investigators and laboratories all over the country. remember it is not just in bethesda. most most goes out to all 50 states where this research is going on. and more than half of those investigators say they basically had to let somebody go where they can't 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 energy, energy committee innovation, the creativity the most amazing engine for discovery the world has seen which is american science. >> what you are saying is that

people are discouraged from coming forth because they don't think there will be no money to fund their projects. i see them shaking their head. we have promising ideas into people in our own country get these ideas ready to roll. if we stayed in the 3% growth initiated by arlen specter where would we be now at $40 billion? >> if you look at the curve of what the trajectory was prior to doubling, it was about a 3% growth rate and that is accounting for inflation so in the terms of the purchasing power if we stayed on the curve we would be added out $40 billion. specs is $10 billion less than where we are not only the national institute of aging. as you pointed out this could be

a variety of other institute. so here's my question. if we took the inflation plus 5% for about four years we could get to where we are today. a >> if you do the math we back up to that 40 million-dollar number. if it were possible to do that that is the decision that is up to the congress and the administration. the best thing we can do for science would be to get on that kind of a stable trajectories are that we could play more than three months at a time so we could tell people that are coming into the field there is a career for you. america is going to invest. if you have a great idea and you will be able to be part of an adventure that's going to be exciting and world changing. right now people are not sure.

this seems to be achievable if we put our mind to it. a >> thank you senator shelby. >> i want to share the specifics and see if you agree with them. alzheimer's is the only cause of death among the top ten causes in america without a way to prevent it or slow its progression's. is that true in america and what about some of our european countries like germany and england, france, switzerland and the more industrialized countries? are some of these statistics if you have some problems?

>> yes they would be. >> the epidemic is not just of the u.s. worldwide. it's a function of the aging of the population which is a good problem that medical research has contributed to 100 years ago alzheimer's was barely known because people didn't live long enough to get it. but it has come what it has come this new responsibility to do something about alzheimer's. so there is a good chance that we might have symptoms or cases of it is that correct? >> in the second panel studied he went through those and as i recall people in their 90s of the incident of alzheimer's or some form of dementia is unfair about 30%. >> tell us of. >> tell us again about how some of the translational research is going on at nih hopefully will affect may be a slowdown of this

translating those into the clinical benefits that is a major focus of all of the parts of all of the institute that have institute that have an investment in that. >> i think i will ask you to get a snapshot of give a snapshot of the most exciting areas of the translation that we are pursuing right now. a >> doctor colin's response to the areas of the progress in the past five or ten years because they do the due range from the basic discovery the basic discovery noted for example the new genetic risk factors with funding that was made available this year we are going to be able to expand the new and analysis that will look at not just the single genes and proteins that way they interact in complex ways and it's already

identifying the critical points that seem to be central to the disease that means we can test that hypothesis by tracking the intervention such as the drug were small molecule to that specific processing to find out in a single cell if that has the right effect and then translate those into the clinical studies. to emphasize what the doctor has noted we have the capability of beginning interventions at the stage which we contract the disease long before extensive and we can track the effectiveness of the biomarkers. everything is about translation and in the planning planning undergoing the process now for 2015 beyond with a benefit of this increased funding by appropriation we would be looking at precisely the right balance of initiative in the spectrum to the clinical trials

to the most promising initiatives and this is an ongoing effort and we will meet periodically with the best minds and the nation internationally to revise those plans. the translation was particularly annoying for this whole effort and i think that progress to each of these from the basic science is going to support an acceleration with full utilization of resources that the resources that are made available to us. a >> the ability to take a biopsy from somebody with old-timers disease and by adding just four genes to convince them to go back in time and become potent than having achieved that adding a certain number of growth factors and allow them to become byron's so you can take something with alzheimer's disease and to study the iran and that's been done and you can tell the difference in those if

they came from somebody with alzheimer's versus somebody that doesn't. ..esn't. to understand the disease in a system where you can work closely with it and use it as a drug screen because you could then take 1,000, 100,000 drugs which of these make the alzheimer's cells make them look like normal neurons. >> one last question, my time super. in your research do you do research into animals that live longer than others and see if there's some corresponding problems with their ageing process? if so which could you speak to that. >> this is the central role of the institute of ageing, a question of longevity. >> go ahead, doctor. can you? >> looking at varied species

with different life spans and expectancies is an important part of the research that's ongoing and is still a mystery which is unraveling. for example, we know that examples have been given for different kinds of clams that live in the same environment. some species of clams will have a life expectancy of nor than a year two. others 500 years. the longest life expectancy of any animals. try to unz that. comeparative comparative. those with single or multiple genetic changes we can extend their life span several fold. maybe three, four, six or ten fold. now, that obviously reveals something about the basic pathways that determine health and life expectancy and now the real promise and excitement

currently is translating that to the equivalent pathways in humans to understand whether manipulating those pathways will improve health and life span. very information very informative area of research. >> mr. chairman, thank you. thank you all for joining us today to discuss this situation. i am reminded that at the university of mississippi dr. arthur embarked upon a study of the heart and flowing from the research that he managed and was in charge of at the university a textbook was written and great strides were made in understanding and prescribing changes in life styles and medications that could have this effect or that effect on the human heart. is it time now for us to

encourage and identify someone or some place where a crash course in research and emphasis on one element this horrendous disease called alzheimer's can be undertaken maybe with the hope of marshalling the best minds we have and techniques we have for research and take one step in the future where your name might be on a textbook? what's your reaction to that? do we have the capacity to do that? what amount of funding should we urge the senate to consider appropriating for such a crash course endeavor? >> interesting question. think back about the incredible impact that the doctor had and

reverberates down through the decades what we understand about the heart. over the course of those decades we have moved more and more into a realization that for the current challenges it's bringing discipline disciplines together. certainly in alzheimer's disease the idea you can bring together people who know something about neuroscience, people who know something about clinical medicine, people who know about imaging technologies people who are engineers, robotics experts, big data is a big part of this now. that's where a lot of the excitement is. increasingly what we need to do the modern version is to come up with teams that are made of many brains sort of working together and that is very much the way science has now proceeding. the brain initiative which dr. landis co-leads for us is a great example of how to achieve

that. maybe you can say a word about how that is coming together that reflects a change in the dynamics. >> it's very clear that we made excellent advances in understanding brain structure. we know we have crude wiring diagrams for the brain but we don't know how information is processed along those wires how the vision of a rose actually gets translated through many, many different way stations in the brain to recognition that this is a rose and the expectation it will smell sweet. what we really need to do to understand how the circuits work, the organization of brain brain cells is to bring together neuroscientists, computational people physicists chemists engineers to work together develop tools that we can then apply to answer those questions about how brain circuits really function and that obviously starts with normal brain

circuits but what we learn from understanding normal brain function will have significant implications for diseases like alzheimer's, other kinds of dementia park join'sinson's disease and epilepsy. >> yes. first i have to agree the appreciation for the remarkable family. but in line with your suggestion of a new kind of center that will allow a translation from basic observation through pre-clinical observations the very existence of the additional appropriation this year has led us to begin -- set aside funds for translation centers, the concept approved this morning by our advisory council, concept developed and now implemented in

the context of funds available. it's intended for the sort of thing you mentioned, bring together as dr. collins mentioned individuals from multiple disciplines to look at new ways to integrate and accelerate in this area. >> thank you very much. thank you, mr. chairman, for calling this hearing. >> thank you. senator kirk. >> mr. chairman, i just wanted to highlight and praise dr. collins for the a.m.p. effort that brings together ten pharmaceutical companies. one headquartered in illinois. biogen. smith kline, johnson & johnson. institutionally these are all shareholder sponsored entities who all are going to be very inte in ging and not 25 years of research back where all these

institutions coming into play they are only interested in the clinical application of what they find. and for a lot of the people i ever sure that is what they are most focused on. >> center, i appreciate your raising because i am personally very excited about this port is close to three years and to try to build momentum and was thrilled that it was possible to announce this just a couple of weeks ago. it is unprecedented to have nih and academic researchers getting together around the same table with equal financial contributions with and pharmaceutical companies to say this is our problem. let's work on it together, and with an agreement that all the data will be publicly accessible so we are calling this no longer competitive part of the process. the opportunities now because of the proliferation of discoveries about basic science that has evolved in alzheimer's and diabetes and rheumatoid

arthritis to try to move those to the clinic has never been greater, but it is a little overwhelming to see how exactly to do that. those companies came to the conclusion that not a single one of them could do this in the timeframe that is necessary. let's get together and do it as a team. and recognize that once we have begun this pre competitive part the companies will jump in and race each other's to try to get to the end point of having an fda-approved drug and we want them to. that is how we gets ultimately the treatment of people are waiting for. it is an exciting model. has never been tried like this. we put ourselves in a position of having to deliver on some ambitious milestones. but i think that we will get there. it will be great to mix these cultures together, the culture of the academic scientist and a private-sector scientist with different kinds of ideas but agreeing that what they're

really at here is to try to solve problems and help patients . >> of the companies public and everybody. >> absolutely. some of the companies were like, why should we join. if you are on the outside you are not actually able to steer the project and say well, why don't we try that. being part of the team is going to be significant and useful and verying for the participant i should have said to also our's is one of the projects that was chosen. we had to figure out which of these various opportunities the companies were excited enough about to put money on the table. and in alzheimer's the goal will be very much see what we can do about these biomarkers that relate to and identify whether it therapy is working or not and to study these 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. center alexander. >> thanks mr. chairman. thanks dr. collins and all of you. of course we really admire what you have done. we all ask you about the same question. let me ask you again to make sure i understand. a moon shot and has a very specific goal. all of the human activity was organized around that specific goal. i suppose mapping the human genome was a very specific goal. and all of this activity was organized around. so you knew when you got to the moon and you knew when you finished mapping the sequence that you work trump's.

the equivalent of those pagan crash courses as senator cochran called them or is there 85 is there a better goal? i think what i am asking i think everyone of us is what would be the equivalent here in terms of brain research or in terms of alzheimer's? what should google be? and then how much money should a great country put behind that to reach the goal? in mind working public life it always seemed to me that the money was not the problem. the goal defining the goal was the problem. the goal was compelling enough to usually their resources with all of wiggle so tell me again what the equivalent of the moon shot or the human genome project is here so that i am the stand clearly and then

remind me again if you know, what it would cost. >> that is the hardest part because we don't know the trajectory. let me see if i can address your thoughtful question. you're right. the moon shot human genome those were unique situations where you could define a precise and. and everyone would know whether you got there are not. a man on the month. okay. he read out 3 billion letters, okay. for alzheimer's disease what would be an appropriate goal there will be a lot. getting diagnosis so that it is accurate and can be done early before symptoms we were coming along pretty well. i would not say we are there. the big goal is prevention and treatment so that no one gives this is his remarks. that is far enough out in the future that i think it is hard for us with the uncertainties about how will get their sibila to put a timetable on that. people are trying.

i will ask the doctors said something. >> before you do is there goal to prevent anyone from getting alzheimer's, just like we say today? polio is gone. >> that would be my goal. that is very ambitious, but that has to be the place dry for. goal. that's very bold. very ambitious but that's got be the place to try for. now i'm going to ask hodes to say something about the alzheimer's plan. we also have this brain project. like genome project that will stretch out over a decade or so but it needs have clear indications of whether it's succeeding or north milestones. that's the difference. wean the moonshot you had to have milestones whether you can get there. can you go around the moon and come back. can you put somebody on the moon? maybe dr. landis can say something about brain how we're setting those milestones so we

can say if we're getting there. >> so, as i said we have maps of the connections in the human brain, but what we don't have is a way to record from the 86 billion neurons and the thousand connections that each of them has in order to understand how the brain actually functions. so what we need to do is to be able to record not just from one neuron or tenure rons or 100 neurons but hundreds, tens of thousands of neurons as a person or animal to start with ising aing a behavior and then reconstruct how those brain cells directed that behavior. if we can do that it would give us a much better understanding of this amazing computational machine that accomplishes

actions and thoughts that no computer could ever replicate. >> there are milestones. >> there are milestones. in fact those milestones are being developed and will be presented to the advisory committee, to the director. we have request for applications out on the street now that have discreet pieces of that problem that we will fund projects to answer. different steps in that process. >> maybe you can say a quick word about the national plan because it's all about milestones. >> yes. the national plan establishes and has zab lished long term goals including the very ambitious goal of 2025 generating an effective means of prevention. what we did was what would be necessary to reach that success by that date and from there set a series of specific research objectives and milestones so that in 2013 and 2014 there are investments in certain areas of research which as projected if

successful will lead in 2025 to ultimate success. we don't know which of the. approaches we take will succeed or which will fail but the design to set out and approach that has potential for that success and as ambitious it is we have no choice but the urgency to move towards that accurated course. >> thank you, mr. chairman. >> thank you dr. collins dr. landis for being here today. congratulations on bringing together the drug companies on this a.m.p. project. i think it's a milestone. and, again, hopefully we'll be able to continue our funding and next fiscal year and this fiscal year. thank you all very much. we'll now turn to our second panel. >> mr. chairman, if i could

others have raised kind of like a manhattan-like project genome, landing on the moon, the manhattan project itself. wasn't one of the biggest concerns the fact that there would be a discouragement or impediment is two things. the shut down of our government and the other sequester so that there's the lack of certainty as you have to not only sequence the human genome but you got the sequence what you're going to do when in terms of research recruitment, retention and so on. don't you need certainty as well as resources? >> absolutely. people say that the worst thing you can do to the business community is uncertainty. well that's true for science even more so. our cycle time for projects runs about four years in order to come up with an idea, put it into practice and work really hard and see if it works. when your cycle time for support sometimes is three months, and

we've been there for some of these continuing resolutions and certainly when you lose a billion and a half dollars halfway through the fiscal year as we did with sequester it's very damaging for people to pursue momentum and to be able to take risks. not worrying whether they will miss the pay line because it's so tight. if we could find our path forward, madam chair woman to that kind of stable support for medical research in the united states it would make a huge difference. >> i can't help them but add here that years ago mark hatfield, senator hatfield came up with an idea i joined with him on it and others did. he pointed out every time you buy a drug in a drugstore every time you go buy an off the shelf drug or even a prescription drug some of that money goes for research. when you buy health insurance policy none much it goes for

research. think of the amount of money we spend every year on health insurance policies to treat and to take care of illnesses, but none of it goes for research. so senator hatfield came up with the idea it was a long time ago, about having, i think it was two or three cents out of every health care dollar that would come to the appropriations committee to go to nih and, of course, the argument was made well that would just supplant the money we were doing. no. as long as this committee funded nih or the congress funded nih at a minimum of inflation, then that money would flow on top of it and be a supplement to it. i've been preaching this for 25 years. that some of this health insurance money that we spend ought to go for research and i'm

sorry the health insurance industry has always opposed it. but it seemed to me that -- i just say this, this is one way of getting some amount of money that you know every year is going to be there. with that, thank you very much dr. collins. we'll town our second panel. >> thank you. >> dr. michael herd, congressman dennis moore and mr. seth rogan. while they dome the table i'll go ahead and introduce them. first, dr. michael herd, a senior principal researcher at the rand corporation. where he directs the rand center for the study of ageing. also a professor at the party rand graduate school in santa monica, california. his research focuses on economics of retirement social security and social welfare systems and other topics related

to the ageing. congressman moore who has served in the house of representatives for 12 years. first elected in 1998 congressman moore served on the budget and financial services committees. in 2010 he announced he would not seek re-election. prior to his time in office congressman moore served in the u.s. army, u.s. army reserve, was an assistant attorney general for the state of kansas johnson county district attorney as well as private practice lawyer. in february of 2012 he and his wife announced that congressman moore had been diagnosed with alzheimer's disease. mr. seth rogan a stand up comedian, actor producer screen writer voice actor, originally from vancouver british columbia. moved to los angeles to pursue acting in the late 1990s. since that time he's acted in

and co-written movies and done voice over work for animated films. he raises awareness for alzheimer's disease as a celebrity champion for the national alzheimer's association and that alzheimer's has affected his wife's family and he'll, i'm sure talk about that. we welcome you all here. i read your testimonies last night. they are great. all your testimonies will be made a part of the record in their entirety and i would ask if you would give a short five minute summation of that so we can engage you in questions and answers and conversation. first, well recognize our former colleague from the house side, congressman dennis moore. good to see an old friend back again from the midwest. dennis thanks for being here and please proceed. >> thank you. good afternoon chairman harkin, ranking member moran. as an individual living with

alzheimer's disease i thank you for the opportunity to testify before this subcommittee. alzheimer's is a devastating progressively and ultimately fatal disease. it currently impacts more than 5 million americans. these men and women are husbands and wives, mothers and fathers, sisters and brothers republicans and democrats. i should know i'm a former member of the united states house of representatives and i'm one of them. i was diagnosed with alzheimer's disease almost three years ago on june 1, 2011. i had become concerned when i noticed i was having some difficulty remembering random events and difficulty managing our household finances. since then i've learned coping skills but still recognize the issue i have with my short term memory loss. i now an alzheimer's advocate for the alzheimer's association because i know personally how this disease affects an individual and family. there is a great need for educating the general public and funding research for a cure.

not only is it alzheimer's stealing our memories and independence and our ability to function but demands increasing amounts of care. beyond the exhaustion and stress there's the financial burden. the direct cost of alzheimer's and related dementia is greater than any other condition in the united states including heart disease and cancer according to a recent study in the "new england journal of medicine." over the next 40 years caring for people with alzheimer's will cost $20 trillion. however, even with this, information for every $27,000 medicare and medicaid spend on caring for individuals with alzheimer's the national institute of health spends only $100 on alzheimer's research. fortunately alzheimer's is a bipartisan issue. in 2010 congress unanimously passed the national alzheimer's project act. the act mandated the creation of the first-ever national

alzheimer's plan, which was released in may 2012 with a goal of preventing and effectively treating alzheimer's disease by 2025. recently updated the plan now includes important milestones and a timeline to facilitate achieving that goal. however goals of this magnitude, goals aimed at changing the trajectory of a national health crisis requires significant investments if we hope to realize success. recognizing this we commend congress through their leadership of you chairman harkin and moran for increase for alzheimer's and appropriations act in 2014. this is an important down payment and step into implementing the national alzheimer's plan so we can reach the goal of treating and preventing alzheimer's by 2025. this will allow scientists to pursue innovative research that will thread new treatment interventions and diagnose dieing

a -- diagnostic. in order to take full advantage of the potential of the national alzheimer's plan, congress muset see to it the necessary resources are prioritize to accurate the government's investment in alzheimer's. it's now incumbents upon our nation's leaders to ensure the promise of the national alzheimer's plan. my fellow alzheimer's advocates i thank you for your support in fiscal year 2014 and urge you to stay committed to alzheimer's as you start discussions for fiscal

year 2015. an epidemic is upon us and too many families are in situations like mine facing a fatal disease that currently has no way to prevent, cure or slow its progression. as a nation we cannot afford to wait until alzheimer's bankrupts us. we must make the smart investment now realize a better, healthier future for our families and our country. thank you very much. >> appreciate you being here. next we'll turn to dr. hurd, the author of this famous study that came out last year that i think shook us all up. >> thank you for the kind words about that study, as challenging as i'll outline now. chairman harkin ranking member moran thank you for the opportunity to testify about the monetary costs of dementia in the united states. my testimony will be based upon

research that co-authors and i did at the rand corporation and university of michigan and it was published last year in the "new england journal of medicine." the costs of dementia are immeasurable. our more modest goal was to measure the monetary cost of dementia but even so there were a number of challenges. first most people with dementia have co-existing health problems such as a history of stroke or heart condition, which by themselves would lead to higher costs. we wanted to find the costs attributable to dementia itself, not the health care costs of people with dementia. a second difficulty concerns informal care that is unpaid care most often performed by a family member. we had to develop a method of placing a monetary value on that care, knowing it could have large effect on our estimates. these and other challenges made it difficult to find valid and reliable data that were adequate for the needs of this research.

fortunately the national institute on ageing nia under the lloyd of dr. hodes and others had the foresight many years ago to invest in a data infrastructure, the health and retirement study without which this research could not have been accomplished. the hrs has become the pre-eminent data source for general population representative studies of ageing. it provides a wide range of data includeing cognition, costs and health care caregiving. it lacked the dementia status. in 1998 a multiple disciplinary team including myself proposed and then fielded a small substudy for dementia status. in our study we used these diagnoses to estimate the dementia status of a much larger sample of 6,000 persons.

according to our results in 2010 the prevalence of dementia in the population aged 71 or older was 14.7%. the annual health care spending attributable to dementia was about $29,000 person. the great majority of these excess costs were for nursing home stays and paid in home care, adding in the cost of unpaid or informal care increased the total annual cost per person to between $42,000 and $56,000 where the range depends on the method of valuing informal care. we were not able to allocate costs between alzheimer'sand other dementias but we know the great majority would be due to alzheimer's. we use census estimates of the population to estimate the annual cost of dementia in the united states. we found that actual spending attributable to desmaen was $109 billion in 2010.

this cost places dementia as the most costly disease in the united states in terms of actual spending. adding in costs for informal care increased this estimate to a range of $160 billion to $250 billion per year. because the prevalence of dementia sharply increases with age the ageing of the population itself particularly when the baby boom generation reaches an advanced age will increase future costs. the costs for care purchased in the marketplace will increase in real terms from the 2010 value of $109 billion to $260 billion in 2040. that's in real terms. adding in the costs of informal care increases the cost estimate to the range of $380 billion to $510 billion per year in 2040. we are kpernding this research in two directions. dementia is very costly on

average but these costs are unequally distributed. some households spend nothing while others might spend more than $100,000 per year. in new research we find that the costs are even more ask youed when accumulated over many years because some people with dementia can be in a nursing home for five years or even longer. can you my lated costs can be financially devastating to some families. in a second extension because of the great importance of long term care and total cost dementia rand is developing a report to be release this year that aims to help providers, payers and policymakers efficiently improve long term care for dementia. in summary dementia is already very costly and will grow even more costly. clearly, medical break throughs that would prevent or delay on set are urgently need. but even in the absence of such break through innovations and policies that can reduce costs should be pursued. thank you mr. chairman and

ranking member. thank you for your attention and i look forward to your questions. >> thank you very much, dr. hurd. now we'll town mr. seth rogen. >> thank you for having me. thank you for the opportunity to testify today and for the opportunity for me to be called an expert at something because that's cool. i don't know if you know who i am at all. you told me you never saw "knocked up" chairman. it's a little insulting. >> i want the record to note -- >> very important guys. >> want the record to note this is the first time i will wagger this is the first time in any congressional hearing in history that the words "knocked up" have been used. >> you're not going to like the rest of this then. [ laughter ] first i should answer the question i assume many of you are asking yes i'm aware this has nothing to do with the

legalization of marijuana. in fact if you can believe it this concerns something that i find even more important. i started dating my wife lauren nine years ago when her mother was almost 54 years old. the first time i met her parents being the mench i am i was excited to spend time with them and make lauren to think i was the type of guy she should continue to date. lauren first admitted to herself and to me something was off with her mother. clues were unfortunately easy to spot since both of her parents had alzheimer's disease. soon after this trip at 55 years old lauren's mother was diagnosed with early on set alzheimer's. now at this point my impression of alzheimer's was probably what i assume most people's imexpression. i thought it was something only really really old people got and i thought the way the disease showed itself was in the form of forgotten keys, wearing

mismatched shoes and being asked the same question over and over. this period which was the only way i saw alzheimer's displayed in movies and television last ad few years for lauren's mom. after that is when i saw the real ugly truth of the disease. after forgetting who she and her loved ones were my mother-in-law a teacher for 35 years then forgot 0 how to speak, feed herself, dress herself and go the bathroom herself by teenage of 60. lauren's father and a team of caregivers dedicated their lives to make my mother-in-law be comfortable. they would love to do more but can't. there's no way to prevent, cure or even slow the progression of alzheimer's. another thing i didn't realize until i was personally affected is the shame and stigma associated with the disease. it was before i was born but i'm told of a time cancer had a stigma. celebrities and other public figures that were stricken would

hide rather than be voices of hope. although it's turning this is currently where we are largely at with alzheimer's disease. it's because of this lack of hope and shameful stigma my wife, some friends and myself decided to actually do something to change the situation. we started hilarity for charity. it helps families struggling with alzheimer's. the situation is so dire that it caused me a lazy self-involved generally self-medicated man child to start an entire charity organization. it was through this that we felt we weren't just complaining there was nothing to be done but actively taking steps to do something instead of being disappointed so many young people were misinformed we started to educate them. we recently started a college program that allows university students to hold their own

hilarity for charity events and in the months it started 18 schools nationwide have signed up to hold events. we have college students to stop playing video games and volunteer their time is a had huge accomplishment. i came here today for a few reasons. one, i'm a"house of cards" fan. had to be here. march thond whole thing. two, is to say people need more help. i personally have seen the massive amount of financial strain this disease causes and if the american people ever decide to respect geni the afternoon lia comedy we can't afford it. i can't imagine how people with more limited incomes deal with this. alzheimer's and related dementia is the most costly condition in the united states.

it's more costly than heart disease in a country wherefore $1.29 you can get a taco made out of doritos. they are delicious but not healthy. while death from other major diseases like heart disease, hiv and strokes continue to decline, deaths from alzheimer's have increased almost 70% in the last 15 years. over 5 million americans have alzheimer's and at this rate in 35 years as many as 16 million will have the disease. third reason i'm here simply is to show people they are not alone. so few people share their personal story, so few people have something to rethe light. i know that if me and my wife saw somebody like me talking about this it would make us feel a little less alone. americans whisper the word alzheimer's because their government whispers the word alzheimer's. although a whisper is better than silence that the alzheimer's kmuptd has been facing for decades it's not enough. it needs to be yelled and

screamed to the point that it gets the attention and funding it needs. i dream of the day my charity is no longer naens i can go back to being the lazy man child i hope to be. i ask you to continue to take more steps from vied more funding. i want to thank the committee to share my story and voice my whole hearted support for the continuing work that purr sauce cure for alzheimer's disease. thank you very much. >> thank you, mr. rogen. that was great. thank you. although i'm sorry you had to unmask me i'm really kevin spacey. not too many people knew that. thank you all very much. i'll start with dr. hurd. i'm pleased to see your research was funded by the national institute of ageing. you may be aware maybe all of

you, maybe you're not aware that some of my colleagues in the house of representatives hold a different view of the role of nih in health economics research. the house draft of last year's appropriations bill, our counter part which they released but did not pass included language that would have precluded nih from supporting any health economics research such as what dr. hurd did. so dr. hurd as an economist researcher, how important is nih's support to your work? are there other federal grants you could have applied for to get this study off the ground? >> it's extremely important, i would say say all-important to my work. i'm the holder of several grants and a center grant. the importance of nih funding comes from its i would say

primarily from its long term reach and also from its multidisciplinary aspect. our study involved cognitive scientist, economist ss, gerontologists. that kind of assembling a team is not easy outside of the nih umbrella. the long term reach is extremely. hrs was the foundation for this study. it wouldn't have been possible without them. the study began in 1992. i was part of the original team. that sustained funding over many years doesn't happen outside of nih for this type of research. i mentioned the 1998 study, similar example where we are laid the foundations for the study that we published in the new england journal really in 1998 and pursued over many years. i just don't think the kind of study we did would be feasible

outside of the nih. i don't know of an agency that would support that kind of long term study as well as the multidisciplinary aspects. >> we didn't do this on this side bipartisan. i just want to get that out just so people understand that and that hopefully the house won't repeat that again this year. representative moore as a former policymaker and a patient, is there anything you personally experienced that would change? do we need -- is there anything we need to better educate primary care physicians on number one. i'll ask two questions. that's number one, dennis. secondly, you've spent a lot of time on this side of the dais. is there -- if you were here what questions would you ask of nih. is there anything that we didn't ask or something we didn't cover? >> i really think you have asked

the appropriate questions of nih. i just think it's important that people in this country understand that this is a disease that's affecting more and more people. i had it in my family with my dad. so i wasn't terribly surprised when i was diagnosed. i understand there's some genetics involved. something you wouldn't wish on anybody but it happens. i hope some day they will find a cure. right now i just think as a nation we need to deal with this disease as best we can and i really, really appreciate the fact that you're holding this hearing and trying to get more information so you can do the right thing. >> thank you very much, dennis. mr. rogen i got to be honest -- [ laughter ] -- i was reading this last night very quickly. hilary for charity? >> i forgot the t. >> i had to stop and go back. >> it's a progressive program.

>> so tell us more abouthilarity for charity. >> there's zero acknowledgement in the world of these young people. it seems to be something not of a high priority. something that people, again, think only happens kind of naturally when people enter their 90s and i don't think people understand that it's not their grandparents being affected, it's their parents being affected and soon enough it's them being affected. i really just saw that firsthand and really felt that there was a massive hole missing when it came, to you know, informing young people about the reality of this disease and it didn't seem like a high priority anywhere globally to inform young people about the disease, so we decided we should do it

because no one else seemed like they were going to. >> good for you. senator moran. >> mr. chairman thank you very much. i don't know i'll ask mr. rogen any questions. i'm a dull, boring person and i would certainly be reticent to have a conversation with you as a comedian. i was fully prepared to be shown up by you, but it really bothers me that senator harkin is even more funny -- >> that kevin spacey line was great. >> so, i don't know whether i'll ask a question or not. i'll start with dr. hurd. and this really probably is a question -- let me put this into the record and it's a question for dr. collins and his crew at nih. as i was listening to dr. hurd's testimony it occurred to me it would be useful for me to understand whether the prevalence of alzheimer's is increasing or is that just a factor of us living longer?

and i don't know the answer to that but assume that has significant cost significances. so are you expecting greater costs in the future as a result of longevity and then just scientifically on a research basis, has alzheimer's been with us to the degree that it is today, into the past, it's just that now we live longer and, therefore, it's not that we're changing we just live longer and therefore the evidence exists. i don't know if that's a question for you dr. hurd or not but before i foregenentech my question i wanted to make certain i got it in front of dr. collins. >> i can say something about that in two ways. we looked in our data to see if we saw any trend and prevalence adjusted for age. you're exactly right. one needs to be quite careful about increased dementia due to increases in ageing of the population. from changes in dementia

prevalence holding age constant. and the latter would be very important finding because then that would suggest that as the population ages we may see less prevalence than had been forecast. our forecasts are based upon constant prevalence holding age constant. so the question came up earlier about over the age of 90. we mated 39.5% those over age ever 90 are suffering from dementia. we assume that rate remained constant to 240. as the ageing of the population more people reaching those ages increased overall population in prevalence and increases in cost. we studied in our data quite carefully whether we could see any change in age specific rates of dementia over time. we saw slight suggestion of that but we're not ready to write a paper on that until we really

are quite certain about that. there was a recent study in england suing geftd a decline in age specific prevalence of dementia, quite a large decline in prevalence i think before we would want to take that and put that into a forecast we would want to have more examples of that from a wider range of populations. right now from our perspective we don't see a change in a specific prevalence. >> doctor we generally have been using the word alzheimer's and you have been using the word dementia. is there a distinction to be drawn here? >> yes. we used, our study was about dementia because that's what our data would support. we had subdiagnoses of alzheimer's but the data we didn't have enough observations

really to distinguish those. this is somewhat outside my area of expertise but my understanding is that there's somewhat of a blurring line between many forms of dementia and alzheimer's. the majority of dementia is alzheimer's. great majority. but typically there will be vascular dementia in addition to alzheimer's at the same time. >> should we expect an announcement, another study, the results of another study from you related to these topics? >> we're working right now, we have an ro 1 from nia to look at long term care. the costs of long term care and the role of health insurance for long term care, long term care insurance, why do we not have a functioning long term insurance care market. it's very clear the costs are highly ask youed and this should be an insurable situation but we don't yet have well functioning market for that. and we've produced one paper on

that we'll produce further papers. >> thank you very much. mr. rogen i appreciate your work hilar the iy for charity so my comments are dull and boring but it's an expression of gratitude. i appreciate your efforts to educate and to communicate with young people. that's something that i have no doubt that is missing. one of the things that i might suggest in that regard in talking to young people is we need to instill in american young men and women the desire to pursue careers, degrees education in science research medicine. we need the next generation of the doctors that were on the preceding panel and i would encourage you and maybe you have comments in that regard to do everything you can to instill in people desire that this is a noble calling worthy of a career. >> yeah. i would love to do that but

actually i think one of the most distressing things honestly i learned today was talking to dr. hodes before the panel justin little waiting room area and he was explaining to me something that he touched on here as he was talking was how the funding for the research in this area is so sporadic and inconsistent that people and i relate to it as just a young person who is pursuing a career, people are discouraged from entering this pursuit because it's not as financially stable as many of the other diseases that are having great strides taken in, you know conquering them. in a will do my best to encourage it but again ski the government to create a situation financially where there's the means for people with ideas to do swoigt. he told me again back stage was there's people that come to us with ideas that could literally

be the thing that cures this disease and what we have to tell them is there's one in six chance of that getting funded and they take from that man if i go focus on heart disease i'll make money and save lives but a more glamorous situation financially. alzheimer's isn't a cool disease, unfortunately and it's something that i think, you know, that was obviously one of the most distressing things i heard today even people whose natural instinct is to pursue curing this disease are discouraged from the financial landscape of this profession. >> while you earn living as a comedian, you are very effective lobbyist turning my request around. >> i'll do it. >> you give me the means i'll give the people. >> i certainly noticed it although you will find that it's -- this request, this plea for constant increasing of

funding is one that we've made for a number of reasons but including in those reasons is the understanding that people who are making decisions about what to do in their careers need to know whether it's alzheimer's or any other disease that nih funding will be there and there's an opportunity for them. the uncertainty that congress and the administration can create in budgets and spending create a real challenge as we try to recruit young people. >> i think that mentality trickles down to people my age and shows it's not that high of a priority on a national level and that's what we're trying to change. >> thank you very much. let me now visit with my colleague, my former colleague from kansas dennis thank you very much for being here. i appreciate you reminding me -- i was at your father's funeral. i remember his condition and the reminder of heredity. my question to you is this.

what is the state of knowledge, what is it that we know when you've been diagnosed with alzheimer's, what is it that they can tell you to do to make the quality of your life better to slow the process. in other words, what does -- my impression would be, you would be a typical patient who learns of a diagnosis and you've pursued, i assume all the opportunity to try to find things that make life better over the course of your rear manger life. and what is it that's out there that people can tell you that are health care professionals and others that can tell you what you can do? what is the alzheimer's association tell you to do to accomplish that in your life? >> basically to take the medication that they diagnosed for me and others, i think. and also to get some exercise, which i try to do on a daily basis. my wife very much encourages me.

as a smart husband i say yes, dear. >> some things we won't forget. it's a good thing. dennis again, i appreciate you, your public service. >> thank you. >> the chairman had a long list of things that you've done in our state, and i wish you and stephanie all the absolutely all the very best and it's very pleasing to me to see you here not on your behalf but on behalf of all the people who sit in this audience and the thousands of americans and people around the world who have encountered the same circumstance that you encounter, and the way that you're living your life i believe gives others courage and hope and i commend you and stephanie for that tremendous addition to your life. another role to play and you're playing it very well. >> i thank you very very much for those colts and i also thank you for conducting this hearing and learning more about this and what we as a nation can do to better deal with this situation

of alzheimer's because millions and millions of americans as you well know are being affected by this. thank you very much. >> you're very welcome. mr. chairman, thank you. >> dr. hurd and maybe i need to get dr. hodes in on this too. i'm a little confused a little bit. listening to your response on this. in other words is dementia getting more aggressive, affecting more percent of the population or is there just affecting more of the population or is there an increase in the number of people living to the age of 65? is there data in someone who is 50 or 55 compared with what it is now. so do we have a higher percentage of our population

affected? >> maybe this is for you. i don't know. we have no evidence. >> there is no evidence of the increase of the risk of dementia. as you were eludeing to there was so few people reaching it in age that we don't have accurate figures for that point. but there is at present no evidence that there is an increase at a given age. >> so 55 or 60 that were diagnosed with dementia 50 years ago is about the same? >> i think i can say there is no evidence of a hange. he. >> i thought you told me -- it is about the same.

trying to be careful. we have no evidence that there has been any change. and i think if you're asking people to speculate we don't know of reasons for change. now, there are, for example vascular components to dimension that are affected by hypertension. since hypertension is better control we might have expected it made a difference but with a straightforward answer statistics 50 years ago and no comparable diagnostic means the answer is we don't know. the kind -- the studies that have been referred to the population base studies and health and retirement survey as an example that are beginning now war began ten years ago will tell us in the future ten or 20 years from now we will be able to answer your question when you are your 20 years from now but that we can right now. >> and retiring next year by the way. [laughter] thank you very much.

>> dr. richard hodes, i just saw although word doctor and started asking medical questions. senator harkin has asked the question that i was trying to pursue better than i did. and it if you took the 50 years away and said five or ten is there evidence that the disease is more prevalent, the incident is changing either increasing or decreasing in a shorter amount of time or again, we just don't yet have the evidence? >> we don't have sufficient evidence overtime. now, if you want to comment on a lot students study. >> we looked at that. ..comment? >> in the hrs, again, we looked at that, this is the time period of 2000 up to 2008. and maybe saw a slight

suggestion in improvement in the rate of dementia. we want to pursue that further because of technical reasons. there was a study that suggested an improvement. but i would say that right now we don't know. you have to have consist ept methods in the hrs. >> i think why this is important is part of it is the cost. when you anlalyze what the costs are going to be. but from the cause, i >> the increase of stress in life and higher blood pressure and it that has a consequence on the disease we are trying to get rid of. >> asking the lounge longest

research we have done needs to be monitored and we need surveillance and those studies are in place so we can see the blood pressure issues or more specific issues we can treat and we can monitor the impact and risk of the disease on the general population. >> thank you for pique my interest. and thank you for attempting to answer the question. >> i have a question for dr. hurt. let me find your testimony here. something leaped out at me. it was this: those who did not graduate from high school were more than twice as likely as those who graduated from college to have dementia and those with

income households of less than $15,000 were more than four times as likely with people with $75,000 income. four times. what does that tell us? >> these are raw statistics over the population and age of 70. >> why would income have any bearing on anyone getting dementia? >> very old people have much lower incomes than younger people so within the age 70 and above the poorest people are the oldest people and ages so high and they correlated with the stating of dementia. >> rich people live to be old, too?

what do you mean? they probably live longer >> that is certainly the case. more wealthy people live longer than poor people. it is a cohort difference. people were who 90 lived through an era where the pay was way less. so the 90-year-olds are poorer than the 70-year-olds today. so there is a relationship between income and age that brings the relationship between income and dementia into the aspect you mentioned. >> when i read that. household income less than $15,000 more than four times to have dementia than $75,000. i would assume that is every stage? >> that is not what is in that table. it is not corrected for anything for age in particular is the main aspect it isn't corrected

for. in our research we correct for that but in that particular table there is not that correction. >> i am having trouble with this. ask mr. rogan. >> i get it. >> and kevin spacy does. >> tell me what you think? >> i think what he is saying is that older people have less income and therefore if you are older by default you will have less income and therefore if you have dementia odds are your are old and odds are means you don't have much income which supports those statistics. [applause] >> well thanks. >> thank you dr. [laughter] >> it is easier to say. i see where the older population is much less educated. so 90-year-olds have an

education of less than high school on average. so in that table education is highly related to dementia simly simly -- simply -- because the older population is less educated. >> okay. i understand that. i taught it was at any age. thanks for clearing that up >> any time. >> you have a future at nih or the rand corporation. >> thank you to these witnesses and the panel from nih and grateful for you allowing us to have the hearing today. i found it useful and appreciate the folks into the audience and across the country who are observing this hearing. we understand how important this

issue is in a direct way and we want to continue our efforts to work together to find a cure for provide hope to the american people. on a much more pedestrian matter senator collins asked she have a statement be made part of the record and i would ask unanimous consent. >> and i join my colleagues for thanking you and thanks were the great leadership at nih. thank you for your leadership and all of you who are here today. i know a lot of you came a great distance. i want you to know this is an issue we are serious about. we have to find the funding for. we have to make sure we have a steady stream of funding. this up and down can't continue

i was happy to join and double the funding for five years for nih but since then it went down hill. we got it up there thinking that is where we were going up. but it didn't work that way. we need your presence here and home and talking to members of congress on both sides of the aisle to let them know the importance of this and the funding we need for the national institute for health. if you do that i hope our funding level this year reflects again the kind of increases we had last year. we will do our everything in our power to make that happen. and again, i thank all of you for your advocating and i encourage you to keep strong in it.

this senate this congress however much you may read to the contrary it does respond to you and responds to voters and the pressure and responds to what people want us to do and so if you want this to happen and you want to make sure we get this good funding stream for nih you have to keep the pressure up. and if you will do that then i think that we will see the way clearer for great strides in getting to that point where we can actually prevent, treat and cure alzheimer's. that is our goal. we will get there. thank you very much. [applause] >> the record is open until

march 5th for other comments from senators and others. >> safe travels home everybody. safe travels home. [inaudible discussions] >> join us later for a look back at the irs targeting investigations. we will focus on a number of congressional hearing on the subject and hear from irs

commissioner among others. here is a quick preview. it starts at 8 p.m. eastern. >> this isn't being forthcoming. this is being misleading again. this is a pattern of abuse and a pattern of behavior that is not giving us any confidence that this agency is being impartial. i don't believe you. this is incredible. >> i have a long career and that is the first time anyone has said they didn't believe me. >> i don't believe you. >> that is fine. i am willing to stand on my record. it isn't buried in 27 pages. most of the pages were exhibits. >> being forthcoming is to say congress -- >> will you let him answer the question? >> i didn't ask him a question.

>> gentlemen from wisconsin -- >> i realize disrupting during this -- >> come on. >> the gentlemen from wisconsin -- >> i am not yielding time. >> regular order. >> if we are investigating criminal wrongdoing and targeting of people based on political abuse and the e-mails are lost because of a hard drive crash you are saying is not recoverable and you don't tell us about it until we ask. that is not being forthcoming. >> that is not true. >> the gentlemen has yielded back this time. >> and one hearing we will focus on tonight during the congressional hearing into the irs targets. starts at 8 p.m. eastern on our

companion network c-span. >> this weekend, friday night on c-span native american history. saturday is live all-day coverage from the a book fair. then is a debate on whether scottland scotland should end the partnership with europe. on c-span 2 friday at 8 p.m. in-depth with ron paul. and on saturday coverage of the book festival from the history pavilion. and sunday at p.m. eastern, afterwards with william burrows.

on american history tv on c-span 3 a nasa movie about the 1967 apollo moon landing. and then general shermans campaign skwchlt a look at the election laws and a case of bush versus gore. find the schedule at c-span's website and let us know what you know about the programs. tweet us or e-mail us with your comments. join the conversation and like us on facebook and follow us on twitter. more now on alzheimer's and the research and treatment of that disease. we looked into the subject on "washington journal" earlier this year. this segment is under 45 minutes. >> "washington journal" continues. host: we continue

>> host: looking at magazine articles here and today one is published on news week online saying alzheimer's is expensive, deadly and growing so where is the research money? joining us from new york is abigail jones a senior writer for news week who wrote this story. let's start ms. jones when who is getting alzheimer's disease is how is it growing. >> guest: those are two important questions. alzheimer's disease affects 5.2 million americans today. the majority of people that develop the disease are 65 and older and 4% develop early onset of alzheimer's disease much younger. there is not a single treatment that prevents stops, slows or