on wednesday, a senate committee examines the current research and treatment for alzheimer's disease.

senator collins: this hearing will come to order. good afternoon it is my pleasure to convene this afternoon's hearing to assess our nation's progress in combating alzheimer's since the enactment of the national alzheimer's project act which i co-authored with then senator evan bayh in 2011. i don't need to tell the people in this room what a devastating disease alzheimer's is. it exacts a tremendous personal

and economic toll on the individual, the family and our society. in addition to the human suffering it causes, alzheimer's costs the united states more than $226 billion a year including $153 billion in costs to medicare and medicaid. these costs will skyrocket as the baby boom generation ages. already our nation's most costly disease, alzheimer's is projected to cost more than $1.1 trillion in 2050 if nothing is done to change its current trajectory. alzheimer's is one of our nation's leading causes of

death. the c.d.c. lists alzheimer's as the sixth leading cause of death overall and the fifth leading cause of death for those 65 and older. other estimates put the mortality rate much higher, at number three, right behind cancer and heart disease. moreover and most frustrating, alzheimer's is the only one of our nation's deadliest diseases without an effective means of prevention, treatment or cure. it is now estimated that nearly one in two of the baby boomers reaching age 85 will develop alzheimer's. as a consequence, chances are that the members of my generation will either be spending our golden years with alzheimer's or caring for

someone who has it. in many ways, alzheimer's has become the defining disease of this generation. if we are to prevent alzheimer's from becoming the defining disease of the next generation it is imperative that we dramatically increase our investment in alzheimer's research. just take a look at this chart. at a time when the united states is spending an astonishing $226 billion a year to care for people with alzheimer's, we are spending less than 3/10 of 1% of that amount, less than $600 million a year on research and believe it or not, that is an increase that many of us have worked for.

you can barely see the expenditure level on that chart. alzheimer's is receiving funding that is clearly disproportionately low compared to its human and economic toll. look at this second chart. we currently spend $5.4 billion a year for cancer research. $3 billion a year for research on h.i.v./aids and $2 billion for cardio vascular research. all investments that have paid dividends. these investments and research for other diseases have yielded tremendous results. patients have access to new treatments. death rates for some diseases are decreasing. yet at the same time mortality due to alzheimer's is escalating dramatically. surely we can do more for

alzheimer's and other diseases of dementia given their tremendous human and economic price. fortunately, there is promising research that holds hope for alzheimer's patients and their families. the research community is poised to make important advances through clinical trials and investigating new therapeutic targets, but adequate funding is critical to advance this research. the national plan to address alzheimer's disease has set its goal to prevent alzheimer's disease by 2025. to meet that goal, the chairman to have advisory committee, dr. ron peterson, whom we will hear

from shortly, told our committee last congress that we will need to devote at least $2 billion a year to alzheimer's research. well, at first that may seem like a lot of money, but when you compare it to that $226 billion that we're spending caring for people with alzheimer's it is less than 1%. and that is the context that we need to put it in. that's why i have introduced the resolution with several of my colleagues stating that the senate will strive to double the amount of funding that our country spends on alzheimer's fiscal year 2016 and develop a plan to meet the target of $2 billion over the next five years. this afternoon or perhaps

tomorrow, the budget is on the floor today, i also will be offering an amendment to the budget which i'm pleased to say is co-sponsored by my ranking member, senator mccaskill as well as senator warner, senator toomey and senator manchin and we will also be calling on the budget to reflect that kind of investment. this is an investment that we simply must make to alleviate suffering and to prevent our healthcare programs from going bankrupt. i want to acknowledge all of the advocates who are here today from all over the country. we need your help. we need you to educate members of congress and we hope that your presence today will be a powerful statement to all of our

colleagues that they too need to help us solve this devastating disease. senator mccaskill? senator mccaskill: thank you. i want to thank the chairman for her commitment to this issue. i think it speaks volumes to the people of this room that she has scheduled this hearing so early in her tenure as the chair of this committee. that should signal to you that she is committed and i can assure her and you that i too am committed to the issues that she has eloquently outlined in her opening statement. i think that with the chairman as an advocate on your behalf, we are in a very good place. i also want to thank all of you for being here today. from all across the country. your spirit is inspiring. you have faced enormous personal challenges. years of frustration, pain sorrow, moments of hopelessness

and yet you find the strength to come here from all over the country and make your voices be heard. it is democracy at its finest hour as far as i'm concerned. i look forward to hearing the testimony today from a member of the witness panel that is from the missouri delegation here in washington today. kim stemley. i will have an opportunity to introduce her more thoroughly in a few moments but she is here as a caregiver and her experience in navigating the medical, financial and housing systems i think is probably representative of many of you in this room. i look forward to hearing her testimony and seeing what we can do specifically to help those who are helping care for those with this serious disease. at one point many people believed that alzheimer's disease was a normal part of the aging process. and that treatment options were either hopeless or unnecessary. we now know today that is just flat wrong.

if we make the investments now we can make treatment effective and we can make those treatments available to millions of americans and in fact, citizens of the world. effective treatments are necessary to alleviate the tremendous human economic and medical toll this disease poses on our nation's families. we need to do something soon because this is a crisis. the cost for alzheimer's patients is set to reach over $1 trillion in just 2050. think about that. a trillion dollars. that is not a sustainable cost for individuals, families or for federal budget. family caregivers are the unsung heroes the alzheimer's epidemic. they provide the largest portion of care for individuals with the disease. caregivers typically endure more stress as a result of their increased responsibilities. while family caregivers provide needed support for their loved

ones for as long as they can many patients require round the clock care and are moved to nursing homes. according to the c.d.c., nearly half of all nursing home residents in the united states have residents with alzheimer's disease. with a few long-term care financing options, most families depend on the medicaid program for their nursing home funds. it is estimated 28% of the medicaid budget is spent on long-term care services, much of that for alzheimer's patients. i know miss stemley can speak of some of the challenges in accessing medicare for her mom. by the way, her mom worked hard all of her life and retired with a pension. however that was not enough. this is week we're voting on the budget. i'm worried for our country and for families like miss stemley.

the budget we are currently debating has massive cuts to medicaid. nursing home care and other healthcare services for seniors and disabled would be slashed by $5.4 billion in missouri alone in the budget we are currently debating. these are middle class families that would be devastated by these cuts. i also want to echo the statements of the chairman about research. government investment in medical research has allowed our nation to be a beacon to the world for hope. for medical advancement. for being the country that is looked to and that adds to our national security because we are seen as such a leader in the world on medical research. funding the institutes of health has flattened and suffered over the previous years. i am hopeful that the amendment that i am sponsoring with the chairman will be a bipartisan agreement.

we cannot continue to shirk our responsibility in the united states to advancing medical research. there is no area that is more deserving of additional dollars in medical research than alzheimer's. all that said, those are problems facing families once they have learned of the diagnosis. yesterday the alzheimer's association released their 2015 facts and figures report that found that about half of all people with alzheimer's disease and their caregivers are not even aware of their diagnosis. that is incredibly troubling. we cannot go back to the old days when people were not informed of their diagnosis. in a misguided attempt to spare them the truth. not only are many not being alerted of their diagnosis but many believe that the mortality rate for alzheimer's patients is much higher than projected. a study found that alzheimer's is likely the third leading cause of death following behind cancer and heart disease. we need to tackle this crisis head on and provide families such as yours with as much support as we can.

i look forward to hearing the testimony from our panel of witnesses about how we can confront the looming challenges and plan for reach in treatment by 2025. thank you for your leadership chairman collins. i also want to thank all of you for being here. senator collins: thank you very much, senator mccaskill. i should correct myself, senator moran is also a co-sponsor of amendments that we'll be offering to the budget for those of you from kansas out there, i just wanted to make sure i corrected the record. >> may i be added as a -- senator collins: absolutely. i would be delighted. i'm glad that senator tillis from north carolina and senator blumenthal from connecticut have joined us. i know they care deeply about this issue. we now turn to the testimony of our panel.

i'm pleased that joining us on the panel are barbara, better known as b. smith and her husband, dan gasby. b is a well known super model who has graced the cover of fashion magazines and she is also an accomplished restaurateur, those who have eaten at union station know that. a retailer, actor and author. but nowhere are her grace, beauty and courage more evident than in her fight against early onset alzheimer's disease. dan gasby is an entrepreneur television producer and entertainment executive and has stood by his wife's side every step of the way. by sharing their story, ms. smith and her husband are helping to make a real

difference and we thank you. next we will hear from dr. richard hodes. who is the director of the national institute on aging at the national institutes of health. dr. hodes also represents n.i.h. on the h.h.s. secretary federal advisory council on alzheimer's disease, research, cure and services. he also coordinates the n.i.h. research efforts under the national plan to address alzheimer's. we will then hear from dr. ronald peterson, whom i mentioned previously. he is the director of the mayo clinic, alzheimer's disease research center. and the mayo clinic study of aging. in 2011 he was to serve as chair of the advisory committee.

kimberly stemley has already been introduced by our ranking members. she is from st. louis and will be talking about the challenges that our nation's many caregivers alzheimer's patients face every day. we welcome you as well. finally it is a great pleasure to welcome to the committee dr. heidi wierman who is with us here today. for more than 10 years she has served as a geriatric physician in portland, maine. she specialized in the challenges that both physicians and caregivers face when caring for an alzheimer's patient. again, it is truly touching to see the sea of purple gathered in the hearing room today. but it is also a stark reminder of how many individuals and families' lives are affected by alzheimer's.

so i want to thank advocates who have traveled to washington. we look forward to hearing from the testimony and we will start with b. smith. b. smith: thank you all for having us here today. i haven't been spending a lot of time down here, but i'm getting back on the saddle these days. so it's been a tough time for me because i do have early onset alzheimer's disease. and i'm here because i want to make a difference.

i'm here because i don't want anybody else to have to go through this. i'm here to ask you to make a difference, not just for the 5 million americans who have alzheimer's and their caregivers but for the future generations who'll face that. this has been something that is very new to me because i've been so healthy for such a long time that i've never had anything like this. but what i'm going to is i'm going to fight. i'm going to do exactly what i can to be best and to be better than the other person that i ever was so that there are lots and lots of people out there who are probably feeling the way that i'm feeling.

like this should never have happened to me. that type of feeling. i'm sure there are many people. but there are many problems out here also. i feel that i'm ready to work. i'm ready to do what i have to do to be the best that i can be and to help as many people as i can help. if i have to tell somebody that they shouldn't do something because, i'll do it and they will tell me i want to do it or i don't want to do it. but it is important to me, it has always been health and wellness has been something that has been a big part of my life and a part of helping young people. and so today, i'm excited to be here. i'm happy to be here and i thank you very much. i've got a lot to do in my future and i'm going to do it and i'm going to do it the best way i can.

if i can help people and they can help me, we can do it together, even that is fine. however we do it, we just have to do it. senator collins: thank you so much. mr. gasby? mr. gasby: thank you, chairman collins. i want to thank you for having me. members of committee. i love my country. i'm proud to be an american. i'm a kid from brooklyn and i never thought i would have an opportunity to try to make a difference. and this is the one time that i know that i can make a difference because i have seen what my wife has gone through. i've seen a woman who virtually could do everything, who could sing, who could dance, who could look at food and taste it and

then cook it exactly the way it could be in a cookbook who did a television show, who did 100 radio and television commercials, who basically always gave back and now has to wait for people to help her. you know, i'm reminded of a song that of all people, jay z and kanye west wrote. there is a lyric in there called "the pain ain't cheap." the pain ain't cheap for the 5 million americans who are suffering with alzheimer's disease. the pain is not cheap for the 15 million caregivers that each and every day, every waking hour have to struggle as we do, as a couple, my best friend, watching her get up, try to do things look me in the eye and say honey, i'm broken. and when you see someone that

you know knows that they can't do what their body and their mind have told them for 55 to 60 years, you realize that you have got to try to step out, step up to make a difference. i'm here to tell you that the pain is not cheap because if we don't do something now, the price we're going to pay 10 to 15 years down the road, or 2050 when it is estimated that 15 million people will have alzheimer's. as you have so accurately said the cost will be over $1 trillion. you know, the greatest resource that we have in our country is our intellectual ability. the greatest resource that we have in our country is a two-party system, a democracy at work. the greatest resource we have is what we learned from generation to generation that we pass down. when you have alzheimer's, you

have people that lose that perspective. people in their 40's now and 50's, 50's and beyond. you lose the ability to give people behind them the sense of accomplishment, the sense of understanding and the sense of hope. you know, we have a modern day social tsunami. this is what alzheimer's is. when you look it a and what my wife has gone through. when you look at what is ravaging the african-american community, i'm twice as likely to have alzheimer's than a caucasian counterpart. when you look at the fact within my community, we're getting tested and treated at a later stage. so the chances of being able to retard or handle the situation is going to be more costly than ever. you realize that we have got to

stop it right now. now, we have invested millions of dollars, billions of dollars as you said earlier in heart disease and cancer. but we pay a pittance to alzheimer's disease. we know that by using a pet span scan, we can determine that there is amyloid beta plaque in the brain. if we find that has happened, we can begin the process of taking care through diet, exercise. through that we may be able to ward off a slowdown so that we can with government funding and the intellectual capacity in this one campaign make a difference. i'm here today because i believe in america. you know, 30 years ago, if you walked warned a telephone you had it on your back. and today, when you walk around, it is in your hand.

i know that we can take the gene code and break it down. it used to take forever to figure out we had genes and now we understand the differences in different population groups. i know drug trials make a difference in drug testing and treatment and bringing positive powerful medicines to market. i know that we have within the breadth and depth of this great country people who are committed. last night i was at the alzheimer's dinner and i saw 1,000 people plus who all know that the pain from alzheimer's is not cheap. what i saw there that last night was a team. i saw a group of people from the deep south to the far west from the heartland of america to new england all looking each other in the eyes and saying you know

what? we're at the tipping point and we're going to push this thing over. so i come here today to tell you i don't believe in big government. i believe in good government and know that what's happening in this committee is going change the face of the alzheimer's community. last night, i sat at a table with 10 other people and there was a young boy there. his name was tyler. and while we were talking about all the things that were going on and we were listening to the author of the book "still alice." as i was looking at him, the only thing i could think of is here is a 12 or 13-year-old if i said to him right now what is a cassette deck, he would go huh? if i said to him what is an

8-track? he would go what? i want that young man, that young boy tyler, to when his kids are his age, he can look back and say i remember when we conquered alzheimer's and their kids are going to say what? huh? we have it within our capacity here in this country to make that difference. i want to be a part of it. not just for her, but for the future tylers in this country. thank you. senator collins: thank you both for such eloquent testimony. [applause] thank you so much. dr. hodes? dr. hodes: thank you, chairman collins, ranking member mccaskill, members of the committee. thank you for the opportunity to be here and for the support you have provided to n.i.h. and research and thanks to everyone in the room for being a part of what we are doing.

i would like to spend the next few minutes giving a few examples. the state which gives us great hope, greater than ever before that the progress we're seeing now will lead to improvements and the ability to treat, cure and prevent alzheimer's disease. if we can move to the next slide. this probably need no elaboration. it was referred to by chairman collins. it is an illustration of where we stand now in terms of the number of people affected with alzheimer's disease. to the right in the bars illustrated are the estimates of cost already showing alzheimer's disease to be the most expensive disease and condition we pace in this country with it increasing several fold as the population at risk increases. there is reason to think, to hope that we succeed in changing this trajectory.

next line. some examples in what were alluded to dan gasby alluded to imaging. not possible just a few years ago. these are scans that look at two lesions until recently were identifiable only in autopsy. this illustrates our ability now to image, you see these slides here. normal individuals with little of these deposits. the next slide shows in contrast an individual with alzheimer's disease. affected with dementia and cognitive change. you can see by the color codes and intensity, the increase in that is formed in the brain if we look at the next slide, here is another individual, cognitively normal who has accumulations of amyloid in the brain. potential before there was

irreversible damage done, a stage at which we can intervene. attempt to prevent symptoms and their progression. remember this and turn to the next slide which is another illustration of progress made. i apologize for the difficulty in reading it but it is a time course of genetic discoveries and it shows in the early 1990's we discovered those genes responsible for very rare but tragic familial form alzheimer's disease. then there was a period of about 15 years we didn't discover any new genes. remember those genes that cause alzheimer's in families and turn to the next slide. we were able to identify in these rare and tragic families by imaging, identify them years and decades before we know they

are going to have the disease. in the bottom left is the relatively normal scan of individuals in their 20's whether they have this alzheimer's causes gene or not. to the right, individual who is did not inherit the gene from their parents look relatively normal in the brain where on the bottom right, gene carriers already showing signs of the disease decades before symptoms. exercise exactly in these individuals that we are doing prevention studies by intervening with treatments before damage, loss of cognitive function occur. a new generation of hope that we can make a difference with this kind of treatment. the next slide. just to emphasize these studies are being done in great and novel partnerships with public and private sector investing to the common goals identifying new targets for alzheimer's disease, monitoring changes canned tell early whether it is successful. the next one, another important aspect even as we search for cures.

we recognize the importance of doing all that we can to take care of individuals who are now living with the disease. and those who care for them. this is an example of caregiver study reach. looking at interventions that would make life better for people with alzheimer's disease and those who care for them and the studies, it was enormously successful, it allowed people to live at home longer and protect the health and prevent against the increased risk of disease and caregivers. that is so common and being illustrated through the v.a. and in an attempt to decrease the burden of those who take on the most important job of caring for those living with alzheimer's disease. the next slide. and finally i just want to illustrate that under the national plan, which has provided a new intensified focus, we have a spectrum of commitment, illustrated here the goal of curing, preventing alzheimer's disease by 2025 and equally important goals having

to do with care and tracking progress through time. i thank you for the opportunity to give you this brief summary of some of the reasons for real excitement and optimism. and look forward to addressing any questions you may have. thank you. senator collins: thank you very much. dr. peterson, welcome back. dr. peterson: thank you, chairman. good afternoon. i would like to thank the committee for the opportunity to discuss the importance of alzheimer's disease for this country and also commend senators collins and klobucher. for introducing the resolution to double the funding for alzheimer's disease research in 2015 and achieve the goal of the annual research budget to $2 billion in the next five years. as you know, in 2010, congress unanimously passed and the president signed into law in 2011 the national alzheimer's project act requiring the

secretary of health and human services to generate the first plan for this country to address alzheimer's disease. the advisory council has just completed its recommendations for the 2015 plan in january. the primary goal of the plan as dr. hodes has just mentioned is to treat and prevent alzheimer's disease by 2025. this goal is a short 10 years away. a feature of the recommendation includes the recommendations the federal government will spend at least $2 billion a year in

research on alzheimer's disease. as chairman collins has indicated, this figure is pale in this comparison to what we spend on cancer, h.i.v./aids and cardiovascular disease. the annual death rate for alzheimer's disease is escalating. again, alzheimer's disease is an incurable disorder with no survivors. in 2013, david cameron hosted a summit on dementia. in preparation for that meeting, professor nick fox and i wrote a commentary. in 2014 the united states spent $226 billion caring for people with alzheimer's disease. if we were to spent 1% of that figure on research, we would reach the $2 billion figure recommended by the advisory council and senator collins.

last week in geneva, switzerland, the world health organization sponsored the first conference on global action against dementia. at that meeting, i presented something similar to what dr. hodes has just shown, as to what the current numbers of those with alzheimer's are in this country, what they are projected to be in 2050. then we imposed the scenario what if we delayed the onset by five years. and the other, what if we were able to slow the progression of the disease. we might have the same number of individuals but to a lesser degree. in a recent report from the alzheimer's association, it is projected that if a treatment were to be introduced by 2025 that would delay the onset of alzheimer's by five years, that treatment would reduce the number of individuals affected by the disease by 5.7 million by 2050 and save all of the payers

include medicare, medicaid and families more than $220 billion within the first five years. as recommended by the advisory council if, the government were to invest $2 billion per year, the country would recoup its investment after a treatment became available. all of the economic models converge at this point. they indicate that it would more than capture the increased investment in research in a relatively short period of time with an effective therapy. i would like to commend my colleagues at the department of health and human services for their work thus far. great strides have been accomplished in coordinating federal agencies and improving federal capabilities with respect to alzheimer's disease. however a great deal of work needs to be accomplished since

we are not close to our goal of effectively treating and preventing the disease by 2025. i can say with confidence that the research community is poised to make a significant contribution toward goal if adequate funding were available. dr. hodes and his staff have established milestones for the execution of the plan and now with the passage of the alzheimer's accountable act are working diligently to prepare a professional judgment budget to submit to congress outlining expenditures necessary to accomplish the goals set forth the national plan. we cannot wait until there is a more convenient time to increase funding for this disease. projections indicate that alzheimer's disease will bankrupt healthcare system as we know it today.

we simply cannot afford to spend the aforementioned over $1 trillion a year as is projected in 2050 to care for individuals with alzheimer's disease. the impact on individuals and families is enormous. the cost to our society is unsustainable. we appreciate the difficult constraints under which the federal government is currently operating, but our patients and families cannot wait. with 10,000 baby boomers turning 65 on a daily basis, this problem is not going to be resolved by itself. we are all poised to make a difference given the opportunity and considering there was a recent report of a new and promising drug made at an international meeting last week in nice, france, we're encouraged something is in the pipeline. ultimately it will be up to the individuals on the committee to make very difficult decisions in funding for alzheimer's disease and related disorders going forward.

we call upon congress to make bold decisions to alter the course of this decision now so that it is not a burden for next situation. the national plan to address alzheimer's disease has established a blueprint to make this possible and we need your support. i appreciate the opportunity to address the committee. thank you. senator collins: thank you doctor. ms. stemley? ms. stemley: good afternoon. on behalf of the individuals living with alzheimer's disease and other dementia, thank you for the opportunity to testify before you today. alzheimer's is a devastating progressive and ultimately fatal disease. more than 5 million americans are currently living with alzheimer's disease or another

dementia. the men and women living with alzheimer's are your friends your neighbors, some may even be your family members. they are business leaders, school teachers, store clerks and construction workers. they are both republican and democrat. and my beloved mother, dorothy stemley, is one of them. i am honored here today to share our story. and discuss issues facing people with alzheimer's and their caregivers. i find the more vocal i am about how this disease has impacted my family, the more i hear from other people who have gone through or are going through similar situations. today my mother is living in a nursing facility in missouri and i'm confident that she is receiving appropriate care and she is in the right setting.

however, getting to this point was a challenge and there are many families out there who never get the care and support they desperately need to face this terrible disease. for several years, my mother and were in denial about the changes in her behavior. i did a great job rationalizing unusual incidents and she did an even better job hiding others. all the rationalizing and denial came to an abrupt halt when i received a call from a stranger telling me my mother was in the middle of martin luther king drive in st. louis, alone and confused. she had slept all night in her car on the side of the street. my mother was along way interest home. that day marked the beginning of our journey with alzheimer's. my mother's diagnosis was the result of three different evaluations. neurologists performed a number

of blood and cognitive tests on her ultimately concluding that it was in fact alzheimer's disease. there i was an only child caring for my single mother who had alzheimer's. i knew then that the world that we would shared was no longer and at the age of 30, i was thrown into a world that was completely foreign to me. a world of alzheimer's disease and i felt completely lost. after her diagnosis, we did not receive much information from her doctors about the disease or much advice on what to do next. a friend of mine recommended looking online for help. i found alzheimer's association, which is the first time light began to shine through the darkness. i was able to learn about the disease, what the diagnosis meant for myself and my mother as well as what our next steps should be considering options for her care. i also learned how the cope with all the emotion i was feeling throughout the process.

this is important because the stress of being a caregiver was only compounded by the stress that i faced at work. my physical health started to suffer. i would wake up in the middle of the night with back spasms and my back pain was so severe that my own doctor recommended i make a lifestyle change just to maintain my own health. i did and now i exercise three times a week and i have been eating a healthier diet. however, the emotional part of it continues to be very difficult for me, and when i see my mother now, it feels like day one every single time. at the time she was diagnosed, my mother was living alone. she had exhibited other warning signs that raised concerns about her safety. for example, my mother started a fire in her condo one day. although no one was hurt, i knew then it was time to consider

other living arrangements for her. we moved her into a seniors independent living apartment which provided her with the security, hospitality and social outlets that she needed. she was able to live there on her own for another four years until her memory loss had progressed to the point where additional care and attention were needed. the next step was my own personal nightmare coming true. moving my mother to the skilled nursing facility where she currently lives today. although my mother worked for 33 years and retired with a healthy pension, the high cost of long-term care exhausted her funds. we needed the medicaid program to afford the long-term care and i am very grateful for the assistance. based on my experience, i know i'm not the only one who has had

difficulty getting help after learning about an alzheimer's diagnosis. i have experienced first hand the gaps in our healthcare system when it comes to dealing with this disease. far too many physicians are not familiar with how to properly advise patients and their caregivers after an alzheimer's diagnosis. it took a friend's advice, not my mother's healthcare provider in finding the alzheimer's association to get the basic information about what to expect next. no one should ever feel as lost as i felt back then. there is no treatment for alzheimer's disease, however there are things that can be done to improve a family's ability to cope with the disease, especially immediately following a diagnosis. this is why the hope for alzheimer's act, which was reintroduced this week is critically needed. it would ensure that families

like mine, who are facing an alzheimer's diagnosis, help guide them through their next steps. to some extent, i feel blessed. i eventually found the resources and the support i needed to manage my mother's condition and my own well-being. if hope had been around at the time of my mother's diagnosis i'm certain that i would have femme much less alone in this fight in the beginning. until a cure is found, we must work to support the family, the caregivers and people with the disease immediately following the diagnosis. we need care. we need help. which is exactly what the hope for alzheimer's act would provide. i have also had the opportunity to speak with many researchers about the current progress that has been made towards development for a cure for alzheimer's. i'm disheartened because i realize despite progress, we

still have a very long road to walk. seeing advancements in other areas as a result of strong federal investment and research makes me think of the opportunity that exists for scientists to develop a truly ground breaking treatment for this disease. one that could spare millions of families the same heart ache i feel every time i see my mother. i would say that alzheimer's disease is one of the worst out there. i am for you and all of your congressional colleagues. research is only the way we can truly create a world without alzheimer's. i thank you for the opportunity to testify today. i appreciate the support of the committee and focus on improving the lives of those affected by alzheimer's disease. if there is one thing i would ask that you take away from my testimony, it would be that

alzheimer's disease not only impacts the diagnosed person but that love them very dearly. thank you so much. senator collins: thank you very much for giving us your perspective. [applause] dr. wierman? dr. wierman: good afternoon. chairman collins, ranking member mccaskill and the distinguished members of the senate, special committee on aging. i am very appreciative of this opportunity to be here with you. i specialize in treating those with dementia and working with their caregivers. am a geriatric physician in maine with roots in oregon. clinically my work is in dementia.

i evaluate individuals and work with their family at our outpatient geriatric center. i spend time in the hospital working with older adults who are hospitalized. i work the prevent delirium which is particularly devastating. it changes the trajectory of dementia that in a negative fashion. dementia really is a looming crisis for our state and the nation. maine has the oldest median age, nearly six years older than the average median age in the united states, which means we have fewer working age individuals to help care for our older adults particularly those with dementia as their disease progresses. projections for maine are that the 65 and older population is the only population that is going to grow in the next 10 years. our total population will remain flat at about 1.3 million but we currently have about 37,000

individuals diagnosed with dementia and it is projected to increase by nearly 50% to about 53,000 in five years. dementia is an epidemic and it will have dire consequences on our economy, our health system and our family structure if we do not act now to do something. dementia stresses our state in many ways including increased burdens placed on caregivers both paid and unpaid. a lack of safe housing, needs for transportation in our rural state and a healthcare system that is already overburdened and in maine, about 2/3 of patients with dementia die in nursing homes. we have fewer young people which means fewer formal and informal caregivers to help. within our health system, we are

experiencing significant challenges already finding suitable living environments for hospitalized patients with dementia when they can no longer be cared for at home. this results in patients remaining at the wrong level of care in an acute care hospital. this puts a lot of stress on families, on the patients themselves as well as the medical community providing the care. it creates a tremendous financial burden. diagnosis and treatment of patients with dementia is not a routine parts of clinical training for most providers and staff in many care settings. it is critical that our system deal with cognitive assessment and care planning. to deal with this progressive disease. currently dementia is a chronic terminal illness. we need to prepare our healthcare system and communities to provide planning and support to patients once they are diagnosed even as we

search for that cure. i would like to take a moment to share a couple of stories. i first met mr. and mrs. keller about 10 years ago when i diagnosed mr. keller with mild cognitive impairment. sadly his disease progressed to alzheimer's dementia. he had declines and issues with walking and swallowing and had issues with eating and started to develop frequent pneumonia. i began visiting him in his home as it was nearly impossible for him to make it into the office. he had support from his wife paid caregivers and intermittently from other family. eventually we involved hospice and he was able to die in his own apartment as was his wish with the support of his wife and family. during that time period, i got to know his wife well. she was a very active woman

involved in her senior community. she suffered significant anxiety as her husband's disease progressed and required treatment of her own. after her husband passed away did not see her for a year and then she was on my schedule as new patient. she had developed memory loss. she no longer had a spouse who could help care for her. her children lived away and couldn't provide support. she continued to live fairly independently with paid caregiver support and transitioned to an assisted living environment. she fell and had a head injury and developed delirium. she has continued to decline today. she and her husband tried to provide financially for all of their needs, but their private caregivers are expensive and the money ran out. she now resides in a nursing home. her children felt very guilty they were not able to provide

the same support for their mother that allowed their father to die at home. their resources simply are not there. we need more funding and options in housing to care for individuals with dementia. i believe in this case we could have had a better outcome. i have other cases and scenarios that i can share but i am running out of time so i would like to thank you for taking the time to hear my story. i implore you to continue to support increased funding for the support of caregivers and individuals with dementia now to support alternative housing options and creative community support for individuals with dementia. ultimately most important to increase funding to identify ways and find a cure for this endeavor stating disease. senator collins: thank you very much for your testimony. ms. smith and mr. gasby, you

talked about a public service announcement that you had made. could you share with everyone here what you did to try to expand awareness and participation in clinical trials? mr. gasby: we are affiliated with the brain health registry. it goes to get people to participate in giving information so that they can be considered for drug trials. one of the main impediments to getting more funding and research, more drugs online is that we don't have enough people to participate so that they can be considered for these drug trials and particularly in minority communities.

the tuskegee experiment, things that have happened in the past myths and some realities african-americans and people who are not caucasian are not participating. what people don't realize is that to bring the drugs to market cost billions of dollars and you need to have a genetic pool so you need different people from different backgrounds. you need women. you need men. you need asians. latinos. african-americans. and this brain health registry registers folks so they can be considered for these drug trials. what we wanted to do is break down that stigma that it is ok that the government does good things and going to trial, it is not going to be the tuskegee experiment all over again. there are so many myths and

taboos that have been existing out there and we wanted to make sure by being involved we wanted to let people know we have to do this, not just for ourselves but for the future. to find the right medicines. senator collins: thank you. i want to thank you for doing that p.s.a. also. i had the opportunity to -- dan: well, one of the great things about that p.s.a. that we did is it increased the overall participation by -- you know, 6% within the minority community but also overall more people signed up because they weren't aware that they needed this diversity in the gene pool. senator collins: that's really terrific. particularly since african-americans are more likely, as you pointed out in your testimony, to get alzheimer's. i think your being out there has really helped to increase awareness and i thank you both for that. dan: thank you, senator.

senator collins: i started visiting research centers and i've talked to doctor petersen at length about the wonderful work at mayo and i spent an hour and a half at massachusetts general hospital talking to the alzheimer's researchers there, and i must say -- and i want to share with this audience and say i see great promise and great hope on the horizon. one of your charts talked about the imaging that is now possible which wasn't just a few years ago. alzheimer's could only be diagnosed definitively through a brain autopsy. now we can do imaging that shows the beta amaloid plaques, and i learned at mass general that there's an antibody that can be

given when the beta-amyloid is developed. i don't know how effective or what stage that is at, but there was so much exciting research going on just at mayo and mass general. i can't wait to go to the university of pennsylvania and to other research centers. i'm sure there's one in missouri as well. but the problem is with only $600 million, you can't possibly fund all those exciting research applications. can you give us some idea of what percentage you are able to fund of the promising projects that are out there? richard: thank you for the question. it's very much the case that

the wealth of excitement opportunities gifted to committed scientists are proposing research that's far in excess for our ability to fund it now. the answer to your question in terms of percent can be answered in a very real but in superficial way just by looking at the success rate we have or the pay line for applications so that of the applications that come in in the area of alzheimer's research, we are able to fund now in the range of 11% to 12%. it is easily said that twice that number or more are considered by peer review experts in the field as absolutely outstanding and meritorious support. in terms of the research we have proposed there's great room for more that could and should be funded if there are adequate resources. beyond that, with sufficient resources, the ability to recruit and initiate new areas that are not even in the minds yet of investigators is a

dividend that we very much look forward to. senator collins: and of course if researchers saw a bigger pot of money available that, too would produce more submissions but 11% to 12% when at least double that number are worthy of funding i think is another strong argument. senator mccaskill. senator mccaskill: thank you. i want to thank all of you. let me ask -- this disease disproportionately affects women, correct, more women and men and more african-americans than caucasians? let's talk a little bit about the reality of medicaid in this equation. we have two issues really we're talking about here. one is investing in the research. the other is making sure that care can be given. ms. stemley, we live in a state where they have refused to expand medicaid, refused to drawdown the federal dollars that are available for health care in our state and the budget that we are currently debating

cuts medicaid by another $400 billion in this country. i'm not sure that most people realize the percentage of nursing home patients that are a, suffering from alzheimer's and that are, b, needing help from medicaid. what would you have done -- i mean, i think there are stereotypes around medicaid that are terribly unfair to women like your mother. your mother worked 33 years. she had a pension. she had a plan and then she got alzheimer's. and you found yourself having to access medicaid services for her long-term care. what would you have done if those medicaid services were not available? if there had been a block grant in missouri, like the house has

done in their budget, and the money was gone because it was october, what would you have had to do? kimberly: senator mccaskill, i don't know. that thought -- first of all, i was not familiar with the medicaid process until this. and so there have been many nights through this process when understanding the cost of long-term care and the realities of what we were facing because you now face the financial fight because now you have an extraordinary price tag to this disease and then you have the emotional, the physical and then you have that fight to go through. initially just understanding the cost that we were about to go down this path, there were many nights that i was very scared because i know she does have a good pension but she doesn't have the pension and we don't have the resources to pay

$5,000-plus, $8,000, $10,000 in certain cases, a month to have a long-term care facility. i didn't know what we would do if we were going to be denied. i didn't know if she made too much, if she had -- you know all of these fears come into your mind. do i make too much, do i make too little, am i going to be denied? and it wasn't an option for us to be denied. i had to have the care. one of the very disheartening parts for this for me, and you pointed it out, is my mother's a very proud woman. and she did work for 33 years. and she worked for the federal government for 33 years and she's very proud of it and even today her mind sometimes thinks she still has to go to work for the government. and so we, you know, we play and do those sorts of things. but to know that all of those years of work are exhausted by a

disease and not transported forward through an inheritance or her grandchildren don't get to see it and there aren't things that she is leaving behind for her family but this disease is exhausting everything is heartbreaking. so i don't know what we would do. but that alone has been my fear many a nights and that's why i said, i thank god for medicaid. and at the same time, we've never needed for anything. you know, we are i guess a middle-class family. i've never been in a position to have a need and that was humbling, to be honest. but i sure am and are grateful for it because where would we be? senator mccaskill: i sure hope you and all of the advocates in the room carry that message because i think there is the stereotype is harming the medicaid program. i think there are people that are comfortable assuming that only people who need medicaid are people who haven't worked hard or people who aren't trying.

and nothing can be further from the truth. particularly when it relates to long-term care in this country. it seems to me that not funding research is dumb because it's going to cost us a lot of money and refusing to fund care is cruel, and so i hope you all will continue to advocate in every office in the capitol on those two issues. thank you, madam chair. senator collins: senator warren. senator warren: thank you, madam chair. i apologize for my delay in getting here. i was also trying to cover a banking hearing so -- but i wanted to be here. alzheimer's forces families to watch helplessly as their loved ones slip away. the high cost of care also frequently stretches families to the breaking point, as you've just testified. according to the alzheimer's association, we will spend $226 billion caring for people with alzheimer's this year. and by the year 2050, the yearly

cost will be more than $1.1 trillion. now, when the director of the national institute of mental health testified in front of the health committee during last congress, he noted that if we can prevent or even delay the onset of dementia, we can save billions of dollars. he also said that this is really a matter of choosing to invest in research now or choosing to pay up in a big way later on. clearly congress is choosing to pay up in a big way later on. congress has reduced the purchasing power of the n.i.h. by nearly 25%, and last year n.i.h. spent only $562 million on alzheimer's disease research. that's about 0.2% of what the disease cost us last year. dr. hodes, can you tell us very

briefly how the reduction in support for n.i.h. funding affected the ability of you and your colleagues to advance research on alzheimer's? richard: thank you, senator warren, for the question. it's certainly the case that progress in alzheimer's research is not being eliminated by great ideas but our ability to support it. in an earlier comment i noted even if one looks at the number of outstanding applicationes that are currently being proposed by scientists and the portion of those we can fund, it is a conservative estimate that we could fund twice as much as we do now by the outstanding meritorious ideas being proposed at a greater speed and that's really only the first iteration. undoubtedly with more resources we will be able to recruit new investigators, establish new infrastructure for new innovative approaches. that's the first order response. senator warren: what you're really saying is we're funding half or fewer of the potential

research avenues that might give us a cure for alzheimer's? richard: of the outstanding proposals that are currently being submitted to us, yes. senator warren: dr. petersen could you add to that, please? ronald: i think another ramification of that, senator warren, with the reduction in federal funding, there's also a reduction of number of new investigators going into the field and that's going to cripple us down the road. so if the young investigators see the old guys like myself struggling for funding in a research setting, they're saying, how am i going to survive? so i'm afraid we're turning off a young generation of investigators that are going to be the ones who are going to lead us forth in the future.

i see that's a real, real concern. senator warren: so high cost right now by not funding research, high cost long term. everyone i've spoken to say they support n.i.h. and they support medical research but medical research takes money and congress has doing absolutely nothing to actually get more money into the agency. the house republican budget and the senate republican budget were released last week and both say that they support medical research funding. but what the republican budget's actually do is lower the budget caps that are already crushing our research agencies, making it likely that agencies, like the n.i.h., will see cuts, not increases, under these plans. now, earlier this year i introduced the medical innovation act, a bill that would boost n.i.h. funding by about $6 billion a year. that's not enough but it's a start and we can do it without raising taxes, without gutting critical programs, without gutting vital research and without adding a dime to the deficit. i hope that my colleagues who are serious about funding the

n.i.h. will join me in this effort or bring other ideas to the table because talk is cheap. we have an opportunity to make a real difference in the fight against alzheimer's, an opportunity to save billions of dollars in unnecessary health and long-term care spending. and give families their loved ones for more precious time. we're going to miss that opportunity unless congress steps up and funds the n.i.h. thank you, madam chairman. applause] senator collins: senator scott. senator scott, welcome. senator scott: thank you senator collins, for holding this hearing and give us an opportunity to interface with so many people who are committed to the cause and those out there in purple, thank you for your investment of time and your energy on such an incredibly

important topic. i know that all of our offices have been filled with your enthusiasm and your real-life stories. i can't think of anyone here on this panel who has not been impacted personally by alzheimer's, for me alzheimer's and parkinson's and watching the challenges of your loved ones -- my grandmother passed away april 29, 2001, and just seeing the devastation, the challenges that she faced. also those who have been support systems. if you've had to -- have you been blessed with the opportunity to care for someone with alzheimer's, would you raise your hands? god bless you. and thank you. it's amazing the impact that the disease has not only on the patient but on the family and on the loved ones and it's such a powerful witness the folks that stop by my office today spent a lot of time talking about their loved ones, their commitment to

making sure that the research and the resources are available for the others who may be impacted by the disease as well. so i thank you for your energy and your enthusiasm. it keeps all of us focused on the topic. my question is for dr. hodes. thank you for your expertise and thank you for your contribution here today. it's a great opportunity for me to really spend some time talking about the success we've had at home in south carolina, the medical university of south carolina and so many folks representing st. francis hospital system that's invested

a lot of time looking for the resources to make progress. st. francis in charleston has received more than $20 million in grants researching treatments and caring for hundreds of alzheimer's patients each and every month. since 2006, the south carolina aging research network has also been doing some really great work on this issue in conjunction with other hospitals and research universities. there is still so much work to be done. i hear optimism, though, from researchers in our state who believe with the right resources they can do the most amazing things. the question i have for you, doctor, is what does progress look like over the next 10 years, from your perspective? and are we meeting the national alzheimer's project act milestones and updating them appropriately so that our researchers are working on the most critical projects? can you point to specific achievements in collaboration in discovery that has advanced the science on this issue? richard: thank you for your comments, senator scott. i think there is well-justified and enthusiasm about the potential for progress as we have more and more insight about basic molecular activities in terms of alzheimer's disease.

in terms of the planning that is now in place, an intensified product of the national plan, we on a regular basis, most recently the summit held just last month here in bethesda, in the washington area, convened regularly experts to help us update and renew the areas of highest priority and then to translating priorities into the success that is the object of the plan. in terms of some of the accomplishments that we've seen in recent years, as noted in some of my opening comments and comments for the record, we've seen progress in the ability to identify early stages of alzheimer's disease in individuals long before the appearance of symptoms, giving us opportunities that just didn't exist years ago to intervene with new treatments aimed at newly identified molecular targets and to understand if they are working or not to track biomarkers again, long before we would identify progression to the symptom attic disease.

-- symptomatic disease. i should add, much as we're pursuing this kind of research we're also committed to important work to sustain the quality of life for those affected and their caregivers. the research proposals that are coming from your state and across the country are enormously gratifying and exciting. coupled with it, i'll say from our perspective, is the enormous disappointment. in fact, pain and anguish of the great number of those meritorious applications that we're unable to support. we're making progress without question towards an ultimate goal. the amount is what we can support. senator scott: thank you. senator collins: thank you. senator whitehouse. senator whitehouse: thank you, madam chair. let me open with a question and then make a comment. the question will be for, i guess, dr. hodes and dr. petersen. i was -- i'm on the budget

committee and we have the budget on the floor so i vent been here for the whole hearing. could you be a little bit more specific about what you think the prospects are or a cure, how confident you are, how many viable paths towards a cure there are so that a nondoctor like me can get a sense of how much confidence we can have? ronald: thank you, senator whitehouse. difficult question to answer, of

course. there is enough exciting research. this is a complex disease. it's not just a single cell disease but really involves networks in the brain so there are multiple targets out there and we're somewhat encouraged by a report just last week that one of the drugs that's under investigation for alzheimer's disease to remove one of the culprits, the plaques, the amyloid plaques in the brain. one result indicated in fact there may be a path forward for this therapeutic in so far the plaquing were reduced as they measured them in patients over the year and the patients improved clinically relative to those who were on placebo. very early phase one study. they're moving with a phase three. i think it's this type of discovery that's going to lead to a hit or more than one hit in the relatively near future. to say how many, when is very difficult, but i'm encouraged that we're on the precipice of really handling this disease one way or another. senator whitehouse: dr. hodes. richard: i'd reinforce what ron has said. we don't know in this complex disease which will be the optimal targets or the combination of targets so that

our integrated approach now with input, again, from all the brilliance and minds we can converge on this question is to be taking examples which ron mentioned, some of the best candidates for treatments now and beginning the most rigorous clinical trials while recognizing it's important to maintain early discovery efforts in basic science looking for molecular and genetic targets and building those into the next candidates for intervention so that we may have short-term successes with some of the current understanding we have but we couple that with a commitment towards developing deeper and deeper into the future. senator whitehouse: well, it's inspiring to hear that but i'm struck by the same fact that my colleague, senator warren, was struck by and having just worked through the budget at the committee level, having seen the house budget, being on the floor with the republican budgets right now, you know, people can talk a good game but the fact of the matter is if you like sequester, the house budget cuts below sequester on discretionary nondefense spending by nearly

$300 billion. it's going to be devastating if a budget like that goes through and the fact that the house republicans were willing to support that is a statement that nobody in this room should ignore. about the value of the support not just for the research, but also for the support of families who got it already, as ms. stemley said so so eloquently. i heard speeches how critical our deficit is and how we have to address our deficit. we had a pair of republican senators last night on the floor saying how critical it was to invest more in national security. we hear how critical it is to invest more in medical research. but when it actually comes to the budget, well over $1 trillion goes out the back door of the tax code through tax loopholes, through favored rates for people and guess what, a lot

of that stuff got brought in by people who are using their political power to get benefits for themselves. a lot of this stuff is pretty disgraceful on the merits. and do you know how many tax loopholes either the senate republican budget or the house republican budget closed to address the deficit or close to address national security or close to address medical research? zero. so the true primary operating principle of both budgets is that every tax loophole is sacred and everything else comes second. and it's very frustrating to sit here and hear you testify in such good faith and hear such prospects for progress and know how many people this illness affects and being in an environment in which every tax loophole, no matter how disgraceful, is viewed by some of us as more important than all of those issues.

my time has expired. senator collins: before i call on the former chairman -- [applause] senator collins: before i call on the former chairman of this committee, senator nelson, with whom i worked so closely within the last congress, i do feel compelled to respond to the senator's comments. you know, alzheimer's affects people whether they're democrats, republicans independents, greens, males, females, caucasians, asians, african-americans. it affects all of us. and it touches all of us. and the worst thing we can do is to make this a partisan issue. [applause]

senator collins: and -- and i have led the fight for years and we made not nearly enough progress but we have made some incremental progress, and it has never been a partisan issue. so with all due respect to my dear friend from rhode island, i would say if we want to achieve what everyone in this room wants us to achieve and that is to get a doubling of the funding as soon as possible and then increase the funding to the $2 billion that has been recommended by the council let's work together. together. [applause]

>> and i agree with everything the chairman has said. senator mccaskill: i just want to say we do have our colleagues will work together and we're fortunate that one of them is chairman of this committee. but we do have challenges that are represented by -- and i'm not pointing out just republicans or just democrats. but there are members of congress that do not see the value in funding government agencies that do research. and, you know, what will -- what we'll find is there will be -- some of our colleagues that will work in a bipartisan way -- and i hope i think you know senator nelson is one of those. i am one of those. you are one of those. but what we have to work at and what we want -- >> don't leave me out. and i'm one of those. [laughter] senator mccaskill: you are one of those. i want the advocates to realize it's time to hold everyone's feet to the fire regardless of their party that the reality needs to match their rhetoric. that you can't engage in the rhetoric of i support

alzheimer's research and then vote to cut funding to n.i.h. that doesn't work. and it won't be my colleague, susan collins, that will be in favor of that, but there will be some and those are the people you need to focus in on no matter what party they are and i think that is the issue that some of my colleagues on other -- our side were discussing that not everyone is as reasonable as the chairman of this committee in terms of working in a bipartisan way. some just want to dismantle public funding of everything from many of the long-term care programs to in fact n.i.h. funding. so not you. others. [laughter] senator collins: senator nelson, it's great to have you here today. senator nelson: well, it's great to be back, madam chairman. thank you for the great partner that you were in leading this committee over the last couple of years. now, to those of you in the audience, you applauded to two things.

higher money spending for n.i.h. for research. and certainly that bar graph right there indicates that more is needed. over $5 billion for cancer, $3 billion for hiv/aids, $586 million for alzheimer's. you also applauded bipartisanship. well, i want to give you an assignment. now, this committee is bipartisan. that's the way it has been run the last couple years and the way it's being run now by the two leaders. but when money is being cut,

according to something called the sequester, which is nothing more than a meat cleaver across the board of the entire budget and that happens to get n.i.h. as it did three years ago when dr. francis collins, the head of n.i.h., had to cancel 700 medical research grants to research institutions around the country, including universities and medical research institutions, then that's going around the country and institutions. and that will affect the thing you are concerned. so, my assignment is, you need to have a prayer session with

members of congress who are voting to cut. let me just say that you are doing incredible work to make sure your family is taking care of and we understand the sacrifice that you approach this with. it takes courage to raise awareness. and is great to see you again. thank you for updating us. when you have conversations with your patients, can you broach

the subject? do you tell them what they have to plan? because there is a report that says that less than half the people with alzheimer's reported that they had been told about the dementia. what do you do when you advise? >> what they hear is different at different stages. it is about the diagnosis and where they are. >> in subsequent and where they're at now, addressing current issues. usually in subsequent visits it's about future planning and that involves them and their caregivers or surrogate decisionmakers assuring they have a plan in place for what they want to do, what's important to them. but also includes looking at what their financial situation is and understanding what's realistic for them to plan for in the future. i recommend a lot of consultation with other law

attorneys. and ask caregivers to be realistic about what they can offer. and i think that that's really important, giving caregivers permission, not to take it all on their shoulders. unfortunately, i do have to advise that at times our hospital system is the ultimate backup if they get into crisis. despite all of our planning, that's where people have to go in our community. and it's really unfortunate because it's really not a great place to be when you have cognitive impairment. it's very much a part of my practice to do that. i think it's really challenging for primary care physicians who take care of a broad array of patients to approach that routinely in their practices and we are working with them hopefully to begin incorporating that. i think whether you have

dementia or anything else, you've got to talk with your families. you've got to make sure that you're thinking about the what ifs, and it's hard for us to do that but we all need to be doing that, whether we have dementia or not. senator nelson: well, all of you, this is one of the larger audiences for a committee hearing in the months that we've started this new congress. and i would take your concern, your energy, your activism and we are right on the cusp and the researchers out in n.i.h. will tell you this. we're right on the cusp of finding a lot of cures for many different kinds of cancers. we know a lot more about cardiovascular, and look at all of the advances in hiv-aids. they're even talking about taking some medicines, attaching them to the h.i.v. virus as a way to attack some cancers. i mean, it just blows your mind what's going on. so what we need to do now is to focus and get the research done to be on the cusp of solving this problem in alzheimer's.

thank you, madam chairman. senator collins: thank you very much, senator nelson. i know that senator kaine is on his way. we will do a couple more questions in the hopes he can get here and, boy, what good timing. \[laughter] senator collins: while he's getting set up, i'll follow-up with a quick question for dr. wierman. i was surprised to learn from your testimony that the diagnosis and treatment of

patients with dementia is not a routine part of the clinical training for most health care providers. if you look at the trajectory of alzheimer's and other dementias and the number of people and their families that are going to be affected in the near term -- we hope we'll have a cure, a means of prevention or effective treatments for the long term -- that really -- that lack of training really surprises me. is that changing now, in your judgment? and why do you think there isn't more emphasis put on that training? heidi: there has been a lot more emphasis in the last few years as far as setting milestones for medical education all the way up through residency training. so i think we've made some headway in the medical

community. i think it's incredibly variable when people go to different programs what they get. most individuals will get training in older adults but not specifically in cognitive impairment and working with dementia and what they get is probably not enough at this time, in my experience, this -- each of us has our own individual personality and experiences and you throw a disease that affects your thinking ability on top of that and it looks very different in different individuals and so it takes a lot of experience and a lot of training to work with these individuals and their families. and you really need to do that. so there needs to be more emphasis and more time on this. and this goes from medical providers. it goes from your front line staff, whether they're office assistants and people answering the phone and scheduling appointments in medical communities. and then we need to be working within our -- outside the medical communities with education and training for

identification. we've done a lot in the banking community about looking for exploitation and that sort of thing. we need to continue that much like at one time we were training hairdressers to look for -- and talk with their clients about evidence for physical and emotional abuse. we need to be doing similar things with other people in our community to help us identify individuals who are having issues so that we can -- we can work with them. senator collins: thank you. senator kaine. senator kaine: thank you, madam chairwoman. thank you for filibustering a bit until i got here. this was deeply important to me. i was in an armed services hearing. and particularly i want to thank mr. gasby and ms. smith, thank you guys so much for doing the work that you are doing to really educate and demonstrate the challenges of early onset alzheimer's. it's such a difficult thing. and obviously in the midst of a

difficult thing to try to help others is really laudable. i really want to express my appreciation to you for that. this is an issue i'm dealing with in my own family. it's new and it's hard to figure out and the challenge for family members and caregivers and it's just -- it's a hard thing. i -- can i just begin by expressing my gratitude to you for you willing to be courageous and hopefully educate others about this? dan: thank you very much senator kaine. you know, we're here because when -- we've been fortunate, we've been blessed with some of the great fruits of this great country of ours. and when you look around and you start to get involved and give back and you see people struggling and you see single head of households who don't have anyone, any resources and they're dependent totally upon the system and you see how they're falling through the cracks, you realize that if you're going to stand for something it's got to be more than just yourself.

and coming from a -- from brooklyn, from humble beginnings and having had a chance to meet one of the greatest human beings i've ever met, my wife, the nicest person -- see, she taught me how to give and what philanthropy is all about. i know what we have to do and it's not about us. it's about those folks behind us. it's about those folks who, you know, at night when you can't sleep because you know there's a person in another room that is going through holy hell and you've got to get up and go to work or you got to go and help change them or you got to go quiet them down or you just have to be able to just hold them you understand that if you're going to stand for anything, stand for people who need the help the most. and the caregivers need it and we got to make it -- we got to

make a difference. i'm blessed i have a great partner, but i also am blessed that because of the opportunities we've been afforded to to try to give back. thank you. senator kaine: we don't necessarily choose what happens to us, but we do choose what we do with it. you guys have made a really good the chair: and all who are here trying to -- you guys who have made a really good choice, and all who -- dan: you don't play the hand you're dealt with, you play to win. senator kaine: amen to that. i want to talk to the people from the research community. talk to me about early onset alzheimer's and from what the research is telling you, you know, how is it different or is it not really different, it just occurs earlier in life?

is it the same medical condition as later onset or is it different in significant ways that we understand, if you could? ronald: thank you, senator kaine, for that question and comment. early onset disease is really divided into various stages and really is defined by the age of onset but we learned in recent years it's probably the same underlying disease process. now, having said that, a person who's affected with alzheimer's disease say in his or her 50's versus somebody in their 80's may have different contributions to the clinical picture. so they look the same, they're forgetful, they develop problems with thinking and activities of daily living but in the older person there is the amyloid, the plaques but also some other pathology, vascular disease. in the young you are onset person, it's more likely to be a pure form of the disease with the amyloid protein.

i think both of them are comparable. treatments that will work for early onset and older onset. and a more genetic contribution for the younger onset. just like other diseases. basically the biology of the diseases are quite comparable, late onset and early onset. senator kaine: in other answers to that question? how about the caregiver side? because we have folks representing organizations that do a lot of work with caregivers. i'm certain that you've already testified a good bit about recommendations you might have for us. just the sheer numbers of caregivers in my state and i'm sure in all of our states it's just kind of staggering. what are the kinds of things we ought to be considering from a policy level to make -- to make the caregiving task -- while not an easy one but to make it lighten the load a little bit? kimberly: thank you, senator kaine.

so i'm here on behalf of caregivers but i'm one of 15 million. and there are many caregivers in this room that have different stories. many of these stories this week i've heard a lot of stories this week. and they're all different. we share very similar things though. we share the same sorrow. we share the same pain. we also share the same hope and we share the same vision that this is going to end in our lifetime and that we're going to fight until we see this end. one of the things that we are here and that we're collectively coming together as 1/5 and that's asking -- you asking what do we need now and what we need now at this point is for the hope act to be passed and we need it to be passed in this congress and we need it because it's going to improve caregiving -- care planning services for individuals like myself, for

families, for those who are living with dementia, that once they receive that diagnosis they walk out of their doctor's offices, one, receiving the diagnosis and then, two, knowing what the next steps are, that that alzheimer's disease diagnosis will be in their medical records and it will follow them and it will go with them wherever their lives may take them. whether they begin to develop diabetes or anything else, they'll know that this doctor will know, hey, this patient has alzheimer's. and there are some additional intricate needs that i need to provide to get the best care. we need this bill passed in this congress. we need it now for -- my situation is a little different because i'm five, six years down the road now. caregiving -- care planning services didn't happen for me exactly the way i probably would have wanted it to. had the hope act been in place for me.

but it can help a lot of other people. it can help millions of people. and we need that help to make this load easier because it's hard and we need help to carry this burden because we're carrying it the best we can but we're just asking for help. senator kaine: thank you very much. and thank you, madam chair. senator collins: thank you senator. senator tell is is on his way back. so that means i get to ask another question. and my question is both for dr. petersen and dr. wierman. dr. wierman, you said you look at delirium as well. and i'm wondering if there is research that delirium in older people after surgery, where a general anesthetic has been

involved, which i have seen cases -- which can be a trigger. i see dr. hodes nodding. so maybe i'll start with him. is there a link? can that be a trigger of alzheimer's? is there a -- is there a link between the delirium that you sometimes see in people after an operation that involves a general anesthetic and dementias? richard: there's good data to a couple of points. the first, whether delirium can be succeeded or followed by decrease in cognitive function and progression of the dementia, the answer appears to be yes. so also for general anesthesia even if there's not delirium so often after general anesthetic there can be a short-term

decline in cognitive function. the failure to recover quickly is also predictive of long-term decline. so both of these to the brain as a result of deep general anesthesia or delirium do seem to be capable of accelerating the functional decline. senator collins: dr. petersen. ronald: we call cognitive reserve, that is if the brain is injured, how much resilience does it have to respond? and sometimes with people who are developing a dementia, one kind or another, and then undergo general anesthesia, they may have a lower threshold for becoming delirious in that context. so it may contribute to the downward decline but it also may just be a stress test on a system that is starting to gradually fail and consequently be a harbinger in the future.

senator collins: i've been talking about this for a couple of years from anesthesiologists from maine med where they should be doing more with older patients to be careful about what kind of anesthetics they use, only use a general one if it's really necessary, can you illuminate on this as well? heidi: i think this gets to why we are here, to get more research. clinically, i certainly see people who seem to be functioning quite well before a surgery and then are not doing so well after. and i think as we have more research now where we can identify there are changes happening before its evidence in day-to-day life, my suspicion is that it's those people we have see the decline after. it's like a stress test that you

fail as kind of how i thought of it as well. i think we just don't know. i think that definitely in an older population doing more assessment prior to major surgeries, if it's a plan to process so you can at least understand what the risks are going into it, so that people could incorporate that into their decisionmaking i think is really important. but as outlined, i think we need more research into what anesthesia is best and how it further risks folks so we don't put them down this path that we can't stop. senator collins: dr. petersen and dr. hodes. ronald: if this is an important issue that the alzheimer's association has established a

professional interest group that's looking at this very issue, they meet at the international conference every summer so this is a hot topic with regard to brain resilience and cognitive function and its role in the development of dementia. so it's a good question. senator collins: that's really interesting. i was not aware of that. dr. hodes. richard: an extremely good and important question. research directed at this includes approaches to using e.e.g. measurements of brain function during anesthesia with an attempt to monitor the level of anesthetic with an eye towards brain activity and anesthesia and to look at the effect of that kind of monitoring on cognitive outcomes. that could make a difference. senator collins: interesting. thank you. senator tillis, we're delighted you made the effort to come back. senator tillis: if i'm out of breath or seem i'm out of breath i am. i had a conflicting committee summit. i want to thank the chair and the ranking member for their leadership. this is a very important issue to me personally because i've

been a caregiver. so i just want to let you know that we not only need to focus on the research -- excuse me -- the research but we also need to make sure that we have the right funding, madam chair, -- excuse me -- to make sure that caregivers, they have the resources and the education that they need to do the best job for caregiving because my personal experience, i was a grandson of a grandmother who got alzheimer's at a relatively early age. and i wasn't quite sure what i needed to do to help my grandmother, but i was pretty certain that my mother and her two sisters were not doing it the right way. and other family members. so that's why i went back and took some college courses to actually better prepare me to help my mother and my two aunts who were the primary caregivers

to be a better caregiver. so i certainly -- i'm not going to ask you questions because i know you've been questioned to death and i'll read the record. but i just wanted to communicate, first, how important it is for something like this. this -- another area where i have a lot of passion is around alzheimer's -- not alzheimer's -- around autism. this is a classic example where i think the head and the heart meet. because with the investment of resources we do the right fiscal thing but we do tremendous transformational impacts for those who are afflicted with alzheimer's. so we need to invest and we need to invest in the right research. we need to identify some of the most promising research, some that i read earlier this week about some other potential promisings treatments and make

sure we're putting this in the front burner because over the state of north carolina, i'll see the population of 65 and over go up about 30%, those suffering from alzheimer's, in a state that's growing increasingly large aging population. so we need to make sure that we educate our members here in the house and the senate on the compelling fiscal reasons to do something that produces a transformational outcome. and i want to thank you all for being here. i want to thank all the folks in purple. my daughter would love this because it's her favorite color. but i want to thank you all for being here and advocating you and i really encourage you to reach out and explain the transformational opportunity for us to make this a priority. thank you, madam chair. senator collins: thank you very much, senator. and well said. we were talking earlier that when we're spending $226 billion as a society on a disease that's going to bankrupt our medicare and medicaid programs that if the suffering of families doesn't move you, the economics of it ought to move congress to do the investments that are necessary.

the focus on caregivers is appropriate. i want to thank the witnesses said -- the witnesses. you have each brought so much to the debate and the discussion and have given us a comprehensive look at the disease. as a chair of the task force, i work with my colleagues to make sure we are keeping a focus on the disease and educating our colleagues to increase funding. we cannot do it without your help. i have an amendment i will ask your help on to help get the senate on record for increasing the funding level that nih gets.

i hope that you do your office visits and urge your senators to support the amendment. it will come up this afternoon or tomorrow. you may not have time. text messages work. i want to thank all of you for traveling all over the country to come to washington to tell your personal story and to advance the fight. it is my hope the color will help those who survived alzheimer's.

we are going to keep the hearing record open until friday april 3. again, my sincere thanks to this wonderful panel. everybody who participated in the searing, including mine and senator claire mccaskill.

>> discussion on ways to improve the elections. supreme court arguments and

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