bringing context and opinions and the united states is to see for the reason, to look into -- frame the story sometimes different from the sensationalism that sometimes happened with certain channels and go deep into why people, such person like this guy, who was a reporter, why would he become a killer, a criminal, why the things happen that way. i don't really know what they did in that respect, but i would think that it needs to be in the way al jazeera to do it, it would go dig deep into the issue and look into all the possibilities and the reasons and bring experts to talk about it and say this is the way we do it >> mustafa souag is the director general of the al jazeera media network. i appreciate you coming by the "washington journal" to talk about the network. >> thank you very much, john. >> and that's going to do it for our show today. >> today, president obama travels to new orleans to meet with residents who have rebuilt their lives following hurricane katrina ten years ago.

he will also deliver remarks. live coverage on c-span gets under way at 5 p.m. eastern, followed by your phone calls. the c-span city store visits literary and historic sites across the nation, to hear from local historians, authors and civic leaders, every other weekend on c-span2's book tv and american history tv on c-span3. and this month, with congress on its summer recircumstance the cities tour is on c-span each day at 6 p.m. eastern. today, we are in key west, florida, and aboard a u.s. ship that sunk german u-boats in world war ii. that's at 6 p.m., eastern time. up next, medical researchers testify on capitol hill about developing a cure for alzheimer's disease. the effectiveness of current treatment and the need for more

funding to study it. former model, actress and restauranteur, bee smith, who has been diagnosed with early onset alzheimer's also appeared before the senate aging committee. [ gavel bangs ]

>> 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 combatting alzheimer's disease 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 telln9=ñ the pe 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 cost to medicare and medicaid. these cuts 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 ae's is also one of nation's leading causes of death. the cdc lists alzheimer's as the sixth leading cause of death overall and 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 a cure. it is now estimated that nearly one in two of the baby boomers reaching able 85 will develop alzheimer's. as a wednesday, 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 3-10ths of 1% of that amount. less than $600 million a year on research. and believe it or not, that's an increase that many of us have worked for. you can barely see the expenditure level on that chart. alzheimer's receives funding that is clearly disproportionately low compared to its human and economic toll.

look at the second chart, we currently spend $5.4 billion a year for cancer research, $3 billion a year for research on hiv/aids and $2 billion for cardiovascular research, all investments that have paid dividends. these investments in 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 dimension, 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 as its primary goal to prevent and effectively treat alzheimer's disease by 2025. to meet that goal, the chairman of the advisory committee on alzheimer's research, care and services, 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 blush, that may seem like a lot of money, but when you compare it to that $226

billion that we are spending caring for people with alzheimer's, it's less than 1%. and that's the context that we need to put it in. and that's why i have introduced a 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 in 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 health care programs from going bankrupt. i want to acknowledge all of the advocates 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. >> thank you. i want to thank the chairman for her commitment to this issue. i think it speaks volumes to the people in this room, that the chairman has scheduled this hearing so early in her tenure

as the chair of this committee. that should be a signal to you that she is committed and i can assure her and you that i, too, am committed to the issues she has eloquently outlined in her opening statement. i -- 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 stunly. 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 believe that alzheimer's disis a normal part of the aging process and that treatment options were either hopeless or unnecessary. we now know today that's just flat wrong. if we make the investments now, we can, in fact, 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 that 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 1 trillion -- over $1 trillion in just 2050. just think about that. $1 trillion. that is not a sustainable cost for individuals, families or our federal budget. family caregivers are the unsung heroes of the alzheimer's epidemic. they provide the largest portion of care for individuals with the disease. caregivers typically experience more stress, anxiety and lost productivity 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 in the later stages of the disease require 'round-the-clock care and are moved to nursing homes. according to the cdc, nearly half of all nursing home residents in the united states have residents with alzheimer's disease and with a few long-term care financing options, many families, in fact, probably most

families, depend on the medicade program for their nursing home funds. it is estimated that 28% of the medicaid budget is spent on long-term care services. much of that for alzheimer's patients. i know that ms. stinly can speak of some of the challenges of accessing medicare and help for her mom. by the way, her mom worked hard all her life and retired with a pension. but that was not enough to cover the high cost of nursing home care. it is important that we are talking about these issues this week because this is a week we are vote october budget. i'm worried for our country and for families like ms. stinly's because the budget we are currently debating does massive cuts to medicaid. nursing home care and other health care services for seniors and disabled would be slashed by 5.4 billion in missouri alone under 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 seep as such a leader in the world on medical research. funding the national institutes of health has flattened and suffered over the previous years. i am hopeful that the amendment that i am co-sponsoring with the chairman will be a moment of bipartisan agreement, that we cannot continue to shirk our responsibility in the united states to advancing medical researching. there is no area that is more deserving of additional dollars for 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 release third 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 diagnoses. that is incredibly trouble. we cannot go back to the old days when people were not properly inform old of their diagnosis in a misguided attempt to spare them the truth. not only are many individuals not being alert of their diagnoses but many believe the mortality rate for alzheimer's patients is much higher than projected a study done by researchers aft rush university medical center found that alzheimer's is like lit third leading cause of death in the u.s. following closely behind cancer and heart disease. we need to tack this will 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 researching treatment by 2025. thank you again for your leadership, chairman collins. i also want to thank all of you for being here today. thank you. >> thank you very much, senator mccaskill. i should correct myself, senator

moran is also a co-sponsor of the amendment that we will be offering to the budget for those of you from kansas out there. i just wanted to make sure i corrected the record. madam chair, may i be added as a co-sponsor? >> absolutely. i would be delighted. i want to also say that i'm so glad that senator till slice from north carolina. senator blumenthal from connecticut. and senator donnelly from indiana have joined us today. i know they care deeply about this issue. we now turn to the testimony of our panel. i'm pleased that joining us today on the witness panel are barbara, better nope as bee, smith and her husband, dan gatsby. bee is a well-known supermodel who has graved the cover of fashion magazines. she is also an accomplished

restaurante restauranteur, for those of us who have eaten at her restaurant at union station know that, retailer, actor and author. but nowhere are her grace, beauty and courage more evidence 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 hodus, the director of the national institute on aging at the national institutes of health. dr. hodus also represents nih on the hhs secretary's federal

advisory council on alzheimer's disease research, cure and services. he also coordinates the nih 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 research center and the mayo clinic study of ageing. in 2011, he was appointed to serve as chair of the advisory committee. kimberly stinly has already been introduced by our ranking member. she is from st. louis and will be talking about the challenges that our nation's many caregivers of alzheimer's patients face every day. we welcome you as well. and finally it is a great

pleasure to welcome to the committee dr. heidi wireman, who is with us here today. for more than ten years, she has served as geriatric physician at maine medical center in portland, maine, and she specializes in the challenges that both physicians and caregivers face when caring for an alzheimer's patient. again, it's truly touching to see the sea of purple gathered in the hearing room today, but it's also a stark reminder of how many individuals and families' lives are affected by alzheimer's. so i want to thank the advocates who have traveled to washington. we look forward to hearing from the testimony and we will start with bee smith. >> go ahead.

oka >> okay. okay. thank you all for having us here today. um, i have -- i haven't been spending a lot of time down here, but, um, i'm getting back on the saddle these days. so, um, 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 though a difference. i'm here because i don't want anybody else to have to go through this. i'm here to ask to you make a difference, not just for the 5 million americans who have alzheimer's and their caregivers, but for the future generations who will face that.

um, this has been -- this has -- this has been something that's very new to me because i have been so healthy for such a long time, that i've never had anything like this. but what i'm going to do is i'm gonna fight. i'm gonna do exactly what i can to be the best and to be better than the other person that i really even was so that -- there are lots and lots of people thought who are probably feeling the way i'm feeling, like this should never have happened to me, that type of feeling. i'm sure that there are many people. but there are many problems out here also. so, i -- i feel that i'm ready to -- 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 that i can help. and 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's important to me -- it's 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 gonna do it and i'm gonna do it the best way i can and if i can help people and they can help me and we can do it together, even that's fine. but however we do it, we just have to do it. >> thank you so much. mr. gasby. >> thank you, chairman collins.

i want to thank you for having me. ranking member mckulski, to the members of the committee, you know, 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've 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 and help -- wait for people to help her. you know, i'm reminded of a song that, of all people, jay-z and

kanye west wrote, and it's -- and there's a letter knick there, called "the pain ain't cheap." and the pain airport cheap for the 5 million americans who are suffering with alzheimer's disease. the pain's 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 has told them for 55, 60 years, you realize that you've got to try to step out, step up and make a difference. i'm here to tell you that the pain is not cheap because if we don't doing? now, the price we are gonna pay

10, 15 years down the road, by 2050, when it's estimated that 15 million people will have alzheimer's. as you have so accurately said, the cost will be over $1 trillion. you mow, the greatest resource that we have in our country is our intellectual ability. the greatest resource that we have in our country is our two-party system, democrat say that works much the greatest resource bev is what we learned from generation to generation that we pass down. well, when you have alzheimer's, what you have is people lose that perspective, people in their 40s now, 50s, 60s 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. and we wihen you look at it yo, look what the my wife has gone through, what is ravaging the african-american community, i'm twice as likely to have alzheimer's as my caucasian counterpart. you look at the fact that within that community, my community, we are getting tested and treated and found 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've got to stop it right now. now, we've invested millions of dollars, billions of dollars, as you said earlier, in heart disease, in cancer, but we pay a pittance to alzheimer's disease. and we know that by using the pet scan, we can determine that there's amyloid beta plaque in

the brain and if we find out that that has happened, we can begin the process of taking tear care of ourselves through diet, exercise, through holistic practices and through that, we may be able to ward off a slowdown, so we can allow the government funding and intellectual capacity we have in this country to developed means and the methods to make a difference. i'm here today because i believe in america. you know, 30 years ago, if you walked around with a telephone, you had it on your back. and today, when you walk around, it's in your hand. i know that we can take the gene code and break it down. that used to take forever to even figure out we had genes and now we understand the differences in different population groups. i know that drug trials make a difference in different populations that will help the efficacy of drugs, test and

treatment and bringing positive, powerful new medicines to market. i know that we have within the breadth and depth of this great country the people who are committed. last night, i was at the alzheimer's dinner and i saw 1,000 people-plus who all know the pain from alzheimer's is not cheap, but what i saw there 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 are 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 i know that what's happening in this committee is going to change the face of the alzheimer

community. last night, i sat at a table with ten 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 lisa genova who work the book "still alice," i was looking at him and all i was thinking, here is a 12 10r 3-year-old, if i said to him right now, what's a cassette deck, woe go "huh?" if i said to him what is an 8-tracks woe go "what?" i want that young man that young boy, tyler, to when his kids with his age, he can look back and say i remember when we conquered alzheimer's and their kids are gonna say, what, huh? we have it within our capacity here in this country to make that difference. and i want to be a part of it,

not just for her, but for the future tylers in this country. thank you. >> thank you both for such eloquent testimony. [ applause ] thank you so much. dr. hodus. >> thank you, chairman collins and ranking member mccaskill and members of the committee. let me begin by thanking you for the opportunity to be here and for the support that you, congress, the administration, have provided to nih and the research and to thaefren near this room for the opportunity to be a part of what we are doing. i would like to spend the next few minutes just giving some of the examples of the state of research in alzheimer's disease, the state which gives us great hope, hope greater than ever before the progress we are seeing now will lead to improvements and ultimately the ability to treat, cure and prevent alzheimer's disease. if we can move to the next slide this probably needs no

elaboration. this is as referred to by chairman collins, but an illustration of where we stand now in terms of the number of people affected with alzheimer's disease, 5.1, 5.2 million and projection for its increase, two to three-fold in the next decade it is we don't change that course. a tonight right in the bars illustrated are the estimates of costs, already showing alzheimer's disease to be the most expensive disease and condition we face in this country with projections of it again increasing severalfold as the population at risk increases. but there's reason to think, to hope and there's an imperative that we succeed in changing this trang joke other. the next slide. some examples of what was alluded to, dan gasby referred to imaging as an indication of the ways in which we gain insight into what's going on with alzheimer's disease not possible just a few years ago. these are scapes that look at amyloid a beta and tow, two of the lesions that were saw 1906,

recently only identify in autopsy. this is our ability to image. you see the slide show here, cognitively normal individuals with little of these deposits. the next slide shows in can contrast an swrid alzheimer's disease affected by cognitive dementia and change. you can see the increase in plaques and tangles that form in those brains much the situation is more complex and challenging than that. we look at the next slide, the next individual, cogtively normal who has accumulations of amyloid and tau in the brain and gaping insights only now into our ability to recognize these as potentially very early stages of disease before symptoms, potentially before there is irreversible damage done, we can begin to intervene and attempt to prevent progression and progression of symptoms. another illusion strays of the progress made, apologize for the difficulty in reading it, but it

is a time course of genetic discoveries and ♪ ♪ early 1990s work he discovered those genes responsible for very rare but familial forms of alzheimer's disease and about 15 year, we didn't discover any new genes until the modern technologies of sequential gave us a proliferation of the jeeps we understand. remember those genes that caused alzheimer's in families and turn to the next slide, able to identify in these rare and tragic families, such as the one illustrated in this study, a family in the south american country of colombia by imaging, identifying individuals years and decades before we know they are going to have the disease, changes which occur in the brain. the bottom left is the relatively normal scan of individuals in their 20s, whetherth they have this alzheimer's causing gene or not. the right, the individuals who did not inher rent the gene from their pants look relatively normal in the brainz whereas the bottom right, those individuals with jeep carriers already showing signs of disease decades before symptoms and exactly in these individuals we are now

beginning to do studies, prevention study buys intervening with treatments before damage and loss of cognitive function owes kur with a new generation of hope we can make a difference with this kind of treatment. the next slide. just to emphasize that these studies are being done in great and novel partnerships with public and private sector investing to the common goals of identifying new targets for alzheimer's disease and studies to attempt treatment and top companies where we can monitor the changes in biomarket, and tell early in the course of these studies whether there was success or no success in the interventions much the next slide. turn to an important aspect, as we search for cures and early insights into moll electrical diagnoses, we recognize the importance of doing all we can to take care of individuals living with this disease and care for them, an example of a caregiver study reach, study designed to look at interventions that would make life better for people with alzheimer's disease and those that care for them and the study, as any other clinical

trial judged by success, enormously successful and enable people to live at home longer, protect the health and prevent against the increased risk of disease in caregivers so common and now being disseminated here through theville a and administration on aging nationwide in an effort decrease the burden of those who take on the most important job of caring for those living with alzheimer's disease. the next slide. finally, just want to illustrate that under the aegis of the national plan, which has provided a new and intensified focus for disease, we have a spectrum of commitment, illustrated here. the goal of curing, preventing alzheimer's disease by 2025 along with equally important goals having to do with care, enhancing public awareness and tracking progress through time. i thank you for an opportunity to give you this brief summary of some of the reasons for real excitement and optimism and look forward to addressing any questions that you may have. thank you. >> thank you very much. dr. peterson, welcome back.

thank you, chairman. good afternoon, chairman collins, ranking member mccaskill and distinguished members of the senate special committee on aging. i'd like to thank the committee for the opportunity to discuss the importance of alzheimer's disease for this country and also commend senators collin was and klobuchar for introducing the resolution to doesn't funding for alzheimer's disease research in 2016 and to achieve the goal of increasing the annual research budget to 2 billion in 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 just mentioned, is to

effectively treat and prevent alzheimer's disease by 2025. this goal is but a short ten years away. an essential feature of the recommendation submitted to the secretary and to congress includes the recommendation that the federal government spend at least $2 billion a year in research on alzheimer's disease. as chairman collin was has indicated, this fig your -- pales in comparison to what we spend on cancer, hiv/aids and yard yo vascular disease, yet in those diseases, there have been significant progress made about regard to redog the number of deaths per year, yet the annual death rate for alzheimer's disease is escalating. again, alzheimer's disease is an incurable disorder with no survivors. in 2013, the united kingdom prime minister, david cameron, used the final event of the g-8 presidency to host a summit on dementia. in preparation for that meeting,

professor nick fox of university college london and i wrote a commentary for the journal, "the lancet," shutting that member countries consider spending 1% of their annual care budget on research. in 2014, the united states spent $226 billion caring for people with alzheimer's disease. if we were to spend 1% of that figure on research, woe 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 ministerial conference on global action against dementia. at that meeting, i presented some figures similar to what dr. hodes has just sheep as to what the current numbers of individuals with alzheimers adisease are in this country what they are projected to be by 2050. then we superimposed the

scenario of what if we delayed the onset of the disease by five years, how would those numbers be impacted? another scenario is what if we were able to slow the progression of the disease? we might have the same number of individual bus more people with a lesser degree of impairment or preferably, doing both of those. 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 i don't set of alzheimer's disease by five years, that treatment would reduce the number of individuals affected by the disease by 5.7 million by 2050. and save all pairs, including 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 this

investment within the first three years after a treatment became available. all of the economic models converge on this point. they indicate that the savings to the federal government would more than capture the increased investment in research in a relatively short period of time with an effective therapy. i would like to come mend my colleagues at the department of health and human services for their work toward enacting the national alzheimer's map thus far. great strides 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 sway confidence that the research community is poised to make a significant contribution toward the goal of if adequate funding were available. as outlined by dr. hodes of the

national institute on aging he and his staff have established milestones for the execution of the plan and now with the passable of the alzheimer's accountability act, are working diligently to prepare a professional judgment budget to submit to congress outlining expenditures necessary to accomplish the goals set forth in the national plan. we cannot wait until there is a more convene yent time for this disease. alzheimer's disease will bankrupt the health care system as we know it today, projections show. we simply cannot afford to spend ate forementioned 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 society is unstable. we appreciate the difficult constraints under which the

federal government is currently operating, but our parents 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 were encouraged that something's in the pipeline. ultimately, it be up to the individuals, such as those on this committee, to make very difficult decisions regarding funding for alzheimer's disease and related disorders going forward. we call upon congress to make bold decision to alter the course of this disease now that it is not a burden to the next generation and providing them with an intractable situation. the national plan to address alzheimer's disease has established a blueprint that would make this possible and we need your support.

i appreciate the opportunity to address the committee. thank you. >> thank you, doctor. ms. stinly. >> good afternoon, chairman collins, ranking member mccaskill, and members of the committee. on behalf of the 15.7 million caregivers for individuals living with alzheimer's disease and other dim men has ementias, 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 clerk and construction workers. they are both republican and democrat.

and my beloved mothers dorothy stem stemley is one of them. i am honored here today to share our story and discuss issues facing people about 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 again through or are going through similar situations. today, my mother is living in a skilled 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

i were in denial about rationalizing her behavior w all the rationalizing and denial came to an abrupt halt the morning i received a call from a stranger telling me my mother was in the mild of martin luther king jr. drive in st. louis, alone and confused. she had slept all night in her car on the side of the street. my mother was a long way from home and that began our journey of alzheimer's. my mother's diagnosis was the result of three different situation. doctors performed tests on her, ultimately cop clugd it was, in fact, alzheimer's disease, so there i was, an only child, caring for my single mother, who had alzheimer's. i knew then the world we had 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 didn't receive much information from her doctors about the disease or much advice on what to do next. a friend of my recommended looking online for help. i found the 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 both myself and my mother and the next step should be considering options for her care. i also learned how to cope with all the emotions i was feeling throughout the whole process. this is important because the stress of being a caregiver was only koch pounded by the stress i faced at work. my physical health started to suffer. i would wake up 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 they won 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 he we her safety. for example, my mother started a fire in her condo one day and although no one was hurt, i knew then it was time to consider other living arrange.sfor her. we moved her into a seniors independent living apartment, which provided her with the security, hospitality and social outlet that she needed. she was able to live there on her own for another four years until her memory loss 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 -- we needed the medicade 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 diagnose situations i have experienced first happened the gaps in our health care 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 a alzheimer's diagnosis. it took a friend's vicioadvice, the health care provide finding the alzheimer's association about what to even get or no one should ever feel as lost as i felt back then. there is no treatment for alzheimer's disease. however there are many 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. the hope act will ensure that families like mine who are facing an alzheimer's diagnosis are providing with care planning services to help guide them through their next steps. to some extent i feel blessed. i eventually found the resources and support i needed to manage my mother's condition and my own well-being.

if hope had been around at the time i'm certain i would have felt much less alone in the fight at the beginning. until a cure is around we must work to support the family, the care givers 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've also had the opportunity to speak with many researchers about the current progress that has been made towards the development of a cure for alzheimer's. i'm disheartened because i realize that despite progress we still have a very long road to walk. seeing in advancements in other areas as a result of strong federal investments 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 save families the

heartache i feel every time i see my mother. alzheimer's disease is one of the worst out there. i implore you to work to find additional funding for alzheimer's research. research is the only 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 its focus on improving the lives of those affected by alzheimer's. if there is one thing i would ask that you would take away from my testimony it would be that alzheimer's disease not only impacts the diagnosed person but those that love them very dearly. thank you so much. >> thank you very much for giving us your perspective. [ applause ] thank you. 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. for who share my experiences treating and working with individuals with dementia and working with their caregivers. i am a geriatrician in maine with roots in oregon and my work is focused on dementia. i evaluate individuals and work with their families at our outpatient center. i also spend time in the hospital working with programs. i work to prevent delirium, which is particularly devastating for individuals who have dementia and experience that it changes the trajectory of their dementia in a very

negative fashion. dementia really is a looming crisis for our state and the nation. maine has the oldest median age. nearly 6 years older than the average median age in the united states. which means we have fewer working aged individuals to help care for our older adults and particularly those with dementia as their disease progresses. projections from 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 structures if we do not act now to do something.

dementia stresses our state in many ways, including increased burden 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. in maine about 2/3 of patients with dementia die in nursing homes. we have fewer younger people which means fewer formal and informal caregivers to help. within our health system we are having trouble finding suitable places for care. this results in patients remaining at the wrong level of care in an acute care hospital when what they need is an environment to care for them with their chronic and progressive dementia. 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 part of clinical training for most providers and staff in many care settings. it is really critical our primary care system become prepared to deal with cognitive assessment and care planning to provide the resources the individual and families needs to deal with this progressive disease. currently dementia is a chronic terminal illness. and 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 have utilized pseudonyms for these stories. i first met mr. and mrs. keller about 10 years ago when i diagnosed him with mild cognitive impairment. sadly his disease progressed to alzheimer's dementia.

and over the next several years he had a gradual decline and developed issues with walking and swallowing. eventually he began having more issues with eating and started to development frequent pneumonias. 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, from paid caregivers and intermittently from other family. eventually we involved hospice and he was able to die in his own home as was his wish. during that 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 i did not see her for a year. and then one day she appeared in my schedule as the new patient. she had developed memory loss. she no longer had a spouse who

could help care for her. her children lived away. they were around in the summer and could not provide support. mrs. keller continued to live independently with paid caregiver support and eventually to assisted living level of environment. her transition did not go well. she fell, had a head injury. developed delirium and has continued to decline today. she and her husband had tried to plan 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 that they were not able to provide the same support for their mother that allowed their father to die at home but the resources are simply not there. we need more flexibility and funding for caregiver support and alternative options for housing to care for individuals with dementia. and i believe in this case we could have had a better outcome. i have other cases and scenarios

that i can share but i see i'm 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 the individuals with dementia now to support alternative housing options and creative community supports for individuals with dementia. ultimately of utmost importance is identifying ways for prevention and cure of this devastating disease. thank you. >> thank you very much for your moving testimony. ms. smith and mr. gasby, when we were talking informally before the hearing you talked about the 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.

>> yes, senator. we are affiliated with the brain health registry. and what the brain health registry does is it goes to get people to participate in giving information so that they could be considered for drug trials. one of the main impediments to getting more funding, more 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. there's been a -- with the tuskegee experiment, with things that have happened in the past, myths and some realities, african americans and people who are not caucasian are not participating. what most people don't realize is that to bring a drug to market costs billions of dollars.

and you need to have a genetic pool, a diverse pool. and so you need different people from different backgrounds. you need women, you need men. you know, asian, you need latinos. you need african americans. and this brain health registries registers folks so they can be considered for these drug trials. and what we wanted to do was we wanted to break down that stigma, that it's okay. you know that government does do good things and going to trials it is not going to be the tuskegee experiment all over again. there are so many myths and so many 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. >> thank you. i want to thank you for doing that psa also. i've had the opportunity --

>> one of the great things about that psa that we did was that 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 they needed this diversity in the gene pool. >> that's really terrific. particularly since african americans are more likely, as you pointed out in your testimony, to get at health centers. i think your being out there has really helped to increase awareness. and i thank you both for that. >> thank you, senator. >> dr. hodes, i've started visiting research centers. and i've talked to dr. petersen at length about the wonderful work at mayo. and just two weeks ago 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 -- that 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 amyloid plaques and the tangles and the tau. and i learned at mass general that there is actually an antibody that can be given when the beta amyloid is developed. and 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 university of pennsylvania and to other research centers.

i'm sure there is one in missouri as well. but the problem is, with only $600 million, you can't possibly fund all of 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? >> thank you for the question. it is very much the case that the wealth of excitement opportunities gifted and committed scientists are proposing research far in excess of our ability to fund it now. the answer to your question in terms of percent can be answered in a very real but in a sense superficial way just by looking at the success rate we have for the pay line for applications. so that of the applications that come in in alzheimer's research

we are able to fund now in the range of 11% or 12%. it is easily said that twice that number or more are considered by peer review experts in the field as absolutely outstanding emeritorious support. so even at that level of the research we've already proposed there is great room for more that could be and should be funded if there are adequate resources. beyond that the ability to initiate and recruit new areas not even yet the minds is a dividend we very much look forward to. >> 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. >> thank you. i want to thank all of you.

it is true this disease also disproportionately affects women, correct? more women than 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 draw down the federal dollars available for healthcare in our state. and the budget 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 b, needing help from medicaid. what would you have done -- and

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 is done in their budget -- and the money was gone because it was october, what would you have had to do? >> senator mccaskill, i don't know. that thought -- first of all i was not familiar with the medicaid process until we were thrown into this world. and so there have been many nights through this process when

understanding the costs of long-term care and the realities of what we were facing. because you are now facing 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 costs 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 could 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 to be denied.

i had to have the care. one of the very disheartening parts for this from me. and you pointed it out. is my mother is 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. and so i've never been in a position to have a need. and that was humbling, to be honest. but i am sure am and are grateful for it because where would we be? >> well i sure hope you and all of the advocates in the room carry that message. because i think there is the -- the stereotype is harming the medicaid program. i think there are people comfortable assuming that the only people who need medicaid are people who haven't worked hard, are people who aren't trying. >> no. >> and nothing could be further from the truth. particularly when it relates to the long-term care in this country. it seems to me that not funding research is dumb. because it is going to cost us a lot of money.

and refusing to fund care is cruel. and so i hope that you all will continue to advocate in every office in the capital on those issues. thank you. >> senator warren. >> thank you madam chair. and i apologize for delay in trying to get here. i was also trying to cover a banking hearing. 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'll spend 226 billion dollars 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 help committee during the last congress he noted if we can prevent or even delay the onset of dementia we could save billions of dollars.

he also said 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 nih by nearly 25%. and last year, nih spent only $562 million on alzheimer's disease research. that is about 2/10 of 1% of what the disease cost us last year. dr. hodes, can you tell us very briefly how the reduction in support for nih funding affects you and your colleagues to advance research on alzheimer's? >> thank you for question. it is the case that the progress is not being limited by great

idea os for scientists of capable of carrying out the research but our ability to support it. and as an earlier comment i noted, even if one looks at the number of outstanding applications currently being proposed by scientists and the proportion of those that we can fund, it is a conservative estimate that we could fund twice as much as we do now simply by the ideas being proposed and being moved forward at a greater speed. and that is the first iteration. undoubtedly with more resources we would be able to recruit new investigators and establish new infrastructure for more innovative approaches. >> so what you are really saying is we're funding half or fewer of the potential research avenues that might give us a the cure of alzheimer's. >> of the outstanding proposals that are currently being submitted to us, yes. >> thank you. and dr. petersen could you just add to that please. >> i think another ramification

of that senator warren is the fact that with the reduction of federal funding there is also reduction of number of new investigators going into the field and that is going to cripple us down the road. if the young investigators see the old guys like myself struggling for funding in research settings, they are saying how am i going to survive? so i'm afraid we're turning off a young generation of investigators. that is a real concern. >> so high cost right now by not funding alzheimer's research. high lost long-term. every member of congress i've spoken with says they support nih and more medical research. but medical research takes money and congress has done absolutely nothing to get more money into the agency. the house republican budget and the senate republican budget were released last week and both say they support medical research funding but what the republican budgets actually do

is lower the budget caps that are already crushing our research agencies. making it likely that the agencies like the nih would see cuts, not increases, under those plans. now earlier this year i introduced the medical innovation act. a bill that would boost nih funding by about 6 billion dollars a year. that is not enough. but it is 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 nih 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 to give families their loved ones for more precious time. we're going to miss that opportunity unless congress steps up and funds the nih. thank you madam chairman. [ applause ] >> senator scott. >> thank you. >> senator scott, welcome. >> thank you chairwoman collins. thank you for holding this hearing and giving us all an opportunity to interface with so many people that are committed to the cause and for all those folks out there with purple on today, thank you for your investment of your time and your energy on such an incredibly important topic. i know all of your 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. and for me at least alzheimer's and parkinson's in watching the challenges of our loved ones. my grandmother passed away in 2001 and just seeing the devastation and challenges we faced. but also those who have been support systems. if you have 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 is such a powerful witness that the focus that stopped 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.

that 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. as the great opportunity for me to really spend time talking about the success that we've had at home in south carolina, the medical university of south carolina. and so many folks representing st. francis hospital system that has invested a lot of time to make progress. in particular 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 for your perspective? and are we meeting the nationalize alzheimer's project act milestones and updating them appropriately so our researchers are working on the critical projects. >> thank you for the comment senator scott. i think there is well justified and enthusiasm as potential for progress. as we have a convergence on more and more insight into basic molecular cellular mechanisms behind alzheimer's disease. in terms of the planning that is now in place as an intensified product of the national plan, we on a regular basis, most recently with a summit held just last month here in bethesda in the washington area convened regularly experts to help us update and renew areas of the

highest priority and establishing milestones what we need to accomplish year by year and that is the objective of the plan. in terms of accomplishments we've seen in recent years as noted in opening comments and comments for the record. we've seen progress in the ability to identified early stages of alzheimer's 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 you newly identified targets and understand whether they're working or not by tracking bio markers. this is just an example. i should add we're also committed to important work to sustain the quality of life for those affected and their care ga givers. the research proposals are

gratifying and exciting.their c givers. the research proposals are gratifying and exciting. coupled with it is the pain and anguish of the number that we're unable to support. so we're making progress without question towards an ultimate goal. the peace of that log is beipro limited by the amount of research that we can support. >> thank you very much. senator whitehouse. >> thank you very much. let me open with a question and then make a comment. i'm on the bun tdget committee i haven't been able to be here for the whole hearing. could you be more sesk about what y specific about how confidence you are how many viable paths toward a cure there are so that a nondoctor like me can get a chance of how much

confidence we can have? >> thank you. an excellent question. difficult one to answer definitively, of course. but i think that there is enough exciting research out there right now perhaps on new targets. this is a complex disease. it's not just a single cell d disea disease. but really involves networks in the brain. so there are multiple targets and we're somewhat encouraged by a report just last week that one of the drugs that is under investigation to remove one of the culprits, the plaques in the brain in early phase one results indicated that in fact there may be a path forward with this particular therapeutic insofar as the plaques were reduced as they measured them in patients over a year and the patients improved clinically relative to those who are on placebo. very early phase one study. they're moving with phase three.

but i think it's this type of sgo discovery that will lead to a hit or more than one hit in the relatively near future. to say how many or when is difficult. but i'm encouraged that we're on the way to handling this disease one way or another. >> and i reinforce what ron has said. we don't know yet exactly which will be the optimal targets or the combination of targets so that our integrated approach now with input again from all the brilliant minds that we converge is to take examples of some of the best candidates for treatment now and beginning the most rigorous clinical trials while also recognizing it's important to maintain early efforts in basic science looking for molecular and genetic targets and building those into the next candidates so that we may have short term successes

with some of the current understanding we have, but with couple that with a commitment toward developing deeper and deeper insights. >> 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 that if you liked 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 house republicans were willing to support that is a statement that nobody in this room should

ignore about the value of the support. for the just for the researches but also for the support of families who have it already as miss stemley said as to he wiso quept quently. i've heard speeches about how we have to address our deficit. we had a pair of republican senators last night saying how critical it was to invest more in national security, how critical it is to invest more in medical research. but when it actually comes to the budget, well over a trillion dollars 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 use being their political power to get benefits for themselves. being their political power to get benefits for themselves.being their political power to get benefits for themselves.eing their political power to get benefits for themselves.ing ther political power to get benefits for themselves. a lot 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 on address the deficit? or closed to address national security or closed to address medical research? zero. so the true primary operating principal 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 you testify in such good faith and hear such prospect to progress and know how many this affects and be in an environment in which every tax loophole is truviewed by so of us as more important than some of those issues. my time has expired. >> before i call on the former chairman -- [ applause ] >> -- before i call on the former chairman of this committee senator nelson with whom i worked so closely in the

last congress, i do feel compelled to respond to the senator's comments. alzheimer's affects people whether they're democrats, republicans, independents, greens, males, females, caucasian, asian, 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 ] i have led the fight for more funding for alzheimer's for years. and we've 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 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 with everything the chairman has said. i just want to say that we do have our colleagues that we'll work with together. and we are 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 we'll find is some of our colleagues that will work in a bipartisan way and i think know center nelson is one of those. i am and you are. but what -- >> don't leave me out. >> and you're one of those. i want the advocates to realize that it's time to hold everyone's pete to tfeet to the. that the reality needs to match the rhetoric. you can't engage in the rhetoric that i support alzheimer's research and then vote to cut fund to go nih. and it won't be 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 hear what party they are. and i think that is the issue that some of my colleagues on 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 nih funding. not you. but others. >> senator nelson, great to have you here today. >> well, it's great to be back, madame chairman. and 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. you applauded higher money spending for nih for rye seares.

and certainly that graf indicph indicates that more is needed. you also applauded bipartisanship. well, i want to give you an assignment. this committee is bipartisan. that's the way it's been run the last couple of years and the way it's being run you nnow by the leaders. but when money is being cut according to something called a sequester which is nothing horn a maets cleavhie meat cleaver a of the entire budget and that happens to get nihhorn a meat cleaver across the board of the entire budget and that

happens to get nih as it did three years ago gowhen dr. frans collins, head of nih, had to cancel 700 medical research grants to research institutions around the country including universities and medical research institutions, then that's going to affect the very thing that you're so concerned. and so my assignment is that you need to have a prayer session with the members of congress who are voting to cut nih. now, let me say to mrs. stemley and mr. gasby, you're doing incredible work to make sure that your family is taken care of. and we understand the sacrifice

with which you've approached it. and ms. smith, it takes courage to raise awareness of the disease. so thank you for being here and high hiding that. and dr. hodes and dr. petersen, great to see both of you again. thank you for coming back to updating us and for your continuing work. and dr. weirman, when you have conversations with your patients, can you broach the subject, do you tell them what they will have to plan? because here's a record in the "washington post" that says that less than half the people with alzheimer's reported that they had been told about their dementia. so what do you to when you

advise your patients? >> when you advise your patients? >>when you advise your patients? >>. >> early on it's about the tying knows sis and what treatments are available and where they're at now addressing current issues. in subsequent visits it's about future planning and that involves them and caregivers assuring they have a plan in place for what they want do, what is important to them. but also includes looking at what their financial situation is and understanding what is 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 position that that is really important giving caregivers permission not to take it all on their shoulders.

unfortunately, i do have to advise at times that 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're 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. it's hard for us to do that, but we all need to be doing that whether we have dementia or not p. >> well, all of you, this is one of the larger audiences for a committee hearingnotp.

>> well, all of you, this is one of the larger audiences for a committee hearingnot. >> well, all of you, this is one of the larger audiences for a committee hearing in the month that goes we've started this new congress. and i would take your concern and share it. we are right on the cusp and the researchers out in nih 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 cardiovascul cardiovascular. and look at all of the advances in hiv/aids. they're even talking about taking some medicine, attaching them to the hiv virus as a way to attack some cancers. i mean, it just blows your mind

what's going on. so what we need do now is to focus and get the research done to be on the cusp of solving this problem in alzheimer's. thank you, madame chairman. >> thank you very much, senator nelson. 3o5á %mñway.senator cain is on so we will do a couple more questions in the hopes that he can get here. and what good timing. i'll just follow up with a quick question. and that is, 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 poeople and their families who will be affected in the near term, we hope we'll have a cure or 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? >> 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 individuals go to different programs what they get. most individuals will get training in older adults but not specifically in

impairment and working with dementia and what they get probably isn't enough. each of us has our own individual personalities and experiences and 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 family. 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 theappointments. and then we need to work outside the medical community in our larger communities with education and training for identification. and 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 f for and talk to their clients looking for evidence with physical and emotional business and other things in the community to help us identify individuals so we can work with them. >> thank you. senator kaine. >> thank you for filibustering a bit until i got there. this was deeply important to me and i was in it an armed services hearing. and particularly i wanted to thank mr. gasby and ms. smith. thank you 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 islaudable. so i want to express my appreciation to you for that. this is an issue i'm dealing with in my own family and it's new and hard to figure out.

and the challenge for family members and caregivers, it's a hard thing. so can i just begin by xresing my graduate to you for being courageous and hopefully educate others for this. >> thank you very much, senator. you know, we're hear because we've been foreign ttunate and d with some of the fruits of this great country of ours. and when 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 brooklyn, from humble beginnings, and having had a chance it meet one of the

greatest human beings i've ever met, my wife, the nicest person, to see -- she toaught me how to give. 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 at night when you can't sleep because you know there is a person in another room that is going through holy hell. and you've got to get up and go to work. or you've got to go and help change them. or you've got to go quiet them down. or you just have to be able to 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 have to make a difference. so i'm blessed that i have a great partner. but i also am blessed that because of the opportunities we've been afforded to try to give back. so thank you. >> we don't necessarily choose what happens to us, but we do choose what we do with it.

and you've made a really good choice. and all who are here trying to be a beacon of hope in a situation that can seem hopeless but for which there is reason to have hope. >> i've learned one thing, you play the hand you're dealt with, but you lay i play to win p. >> amen. i want to ask those in the research community, talk to me about what the research is telling you. how is it different or is it not really different, 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? >> thank you, senator, for that question and comment. early onset disease is really divided into various stapgs. it really is defined by the age

of onset. but we've learned that it's probably the same underlying disease process. having said that a person affected with alzheimer's disease say in his or her 50s versus the 80s may have different contributions to the clinical patient. at the look the same, they have forgetful problems, but in the older person, the plaques and tangle and other pathologies. in the younger onset person, it's more likely to be a purer form of the disease with the amyloid protein. but i think both are comparable treatments that are likely to be effective for younger onset work for orlando and advice veervice. when they occur earlier in life,

they tend to be more genetically loaded but basically they're quite comparable. >> any other answers to that question? how about the caregiver side because we have folks here 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 shear numberses of caregivers in my state and i'm sure in all of our states is staggering. what are the kinds of things we ought to be considering from a policy level to make the ca caregiving task -- light be ten load a little bit. >> thank you, senator. so i'm here on of behalf caregivers because 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 he said th oig in our lifetime and we are fight until we see it end. we're collectively coming together asking -- you're asking what do we need now. and what we need is for the hope act to be passed. we need to be passed in this congress. and we need if becaut because i improve careplanning services for individuals like myself, for families living with decide mention i can't, that once they receive that diagnosis, they walk on the of their doctor's offices receiving the diagnosis and thenthey receive that diagn they walk on the of their doctor's offices receiving the diagnosis and then knowing what the next steps are, that that alzheimer's disease diagnosis

will be in tir medical records and it will follow them. and it will go with them wherever their lives may take them, whether they begin to then develop diabetes or anything else, they will know that this doctor will know, hey, this patient has alzheimer's. and so there are additional intricate needs that i need to provide for this individual to give the best possible care that i can. and so we need will athis act t passed in this congress. we need it now for, you know, my situation is a little different because i'm five a six, years down the road now. care planning services didn't happen for me the way i would want to, but it can help a lot of people fp. we need the help to carry the burden because we're carrying it the best that we can, but we're

just asking for help. >> great. thank you very much. [ applause ] >> thank you, senator. senator tillis is on his way back. so that means i get to ask another question. my question is for both dr. petersen and dr. weirman. you mentioned that you look at delirium, as well. and i'm wondering if there is research that shows that delirium in older people after surgery where a general anesthetic has been involved, which i have seen cases of, can be a trigger. i see dr. hodes nodding also. is there a link, can that be a

trigger of alzheimer's? is there a link between the delirium that you sometimes see in older people after an operation that iolves a general anesthetic and dementias? >> between pointgood point s. and the first is that delirium succeeded comignitive function d the answer appears to be yet. so often for general apanesthes apanesthesia. so there can be a short term decline. most people recover fine, but the failure to recover relatively quickly is also predictive of long term decline. so both of these insults, whatever exactly that means, to the brain as a result of deep general anesthesia or delirium do seem to be capable of

accelerating the functional decline. >> dr. petersen. >> i agree with dr. hodes. it also pertains to the issue o reserve. if the brain is injured, how much does it have to respond. and sometimes with people 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 may just be a stress test on a system that is starting to gradually fail and consequently be a hash inger of the -- the harbinger of the future. >> dr. weirman in your response also, because i've been discussing this issue for a couple of years with

anesthesiologists from maine med where you work and whether they should be doing more with older patients to be careful with what kind of anesthetic they use and only use a general one if it is necessary. can you illuminate us as to that as well. >> i think it leads to why we are here. we need for research to advise. i see people functioning well before a surgery and not doing so well after. and if there are changes happening before it is evident in day-to-day life, my suspicion is those people that we see that have the decline after and it is like a stress test that you fail. as kind of how i have 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 is a planned process, so you can at least understand what the risks are going into it. so that people could incorporate that into their decision-making i think is really important. but as outlined i think we need more research into which anesthesia is best so we can do the right thing for them and not put them down this path that we can't stop. >> dr. peterson and dr. hodes. >> if i may, this is a sufficiently important issue that alzheimer's association has established a professional interest group looking at this 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. >> that is interesting. i was not aware of that. dr. hodes. >> and again, an extremely important question.

and research directed at this actively now includes approaches of using e.g. measurement of brain function during anesthesia to monitor the level of anesthetic with an eye toward brain activity and anesthesia and the look of that on cognitive outcome. so that is one area why we can develop rather quick answers. >> interesting. thank you. senator tillis, we are delighted you made the effort to come back. >> if i am out of breath, i am. i was running back. i apologize. i had a conflicted summit. i want to thank the chair and the ranking member for their leadership. this is very important to me personally because i've been a care-giver. 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 the care-givers are -- that they have the resources and the education that they need to do the best job for care giving 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, about you was pretty certain that my mother and her two sisters were not doing it the right way. and other family members. so that is why i went back and took some college courses to better prepare me to help my mother and two aunts who were the primary care-givers to be a better care-giver. so i certainly -- i'm not going to ask you questions because i know you've been questioned and i'll read the record. bup i just wanted to communicate first how important it is for something like this. this is another area why i have another passion is around

alzheimer's -- orb not alzheimer's but autism. i think this is where the head and the heart meet. with the investment of resources we do the right fiscal thing and tremendous impact for those inflicted with alzheimer's. so we need to invest and in the right research and identify some of the most promising research, some that i read this week about other potential promising treatment and make sure we are putting those on the front burner because in a state like north carolina, where over the next ten years i'm going to see the population of 65 and over go up about 30%. those suffering from alzheimer's in a state 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 and i want to thank all of the folks in purple. my daughter would love this because it is her favorite

color. and thank you for being here and advocating and i encourage you to speak out and explain the transformational opportunity we have to make this a priority. thank you madam chair. >> thank you very much, senator. and well said. we were talking earlier when we are spending $226 billion as a society on a disease that will bankrupt our medicare and medicaid programs, that if the suffering of families doesn't move you, the economics of it are to move congress to do the investments that are necessary. and your focus on care-givers is absolutely appropriate too. i want to thank our witnesses today for their extraordinary testimony. each of you has brought so much to the debate and discussion today. and i think you've given us a very comprehensive look at a

devastating disease. i want to show you, as the co-chair of the alzheimer's task force in the senate, that i'll continue to work with my colleagues like senator tillis and mccaskill to make sure that we are keeping a focus on the disease, that we're educating our colleagues and that we're increasing the funding. we can't do it without your help. as i said, i have an amendment that i'm going to ask your help on, on the budget, to have essentially get the senate on record for increasing the funding level that nih gets for alzheimer's research. and i hope as you do your office visits that you will urge senior senators to support that amendment. it is either going to come up this afternoon or tomorrow. you may not have time if it is this afternoon.

but text messages work too. and i want to thank all of you for traveling from all over the country to come to washington to tell your personal stories and to help advance the fight against alzheimer's. as we've said today, the color purple represents the alzheimer's movement. it is my hope that some day soon the color purple will also represent those who survive alzheimer's. [ applause ] we're going to keep the hearing open, the hearing record open until friday, april 3rd. there may be additional testimony or questions for the record. but again, my sincere thanks to this wonderful panel and to