Transcripts For CSPAN3 Alzheimers Disease Research 20240622

He will also deliver remarks. Live coverage on cspan gets under way at 5 p. M. Eastern, followed by your phone calls. The cspan city store visits literary and Historic Sites across the nation, to hear from local historians, authors and civic leaders, every other weekend on cspan2s book tv and American History tv on cspan3. And this month, with congress on its summer recircumstance the cities tour is on cspan each day at 6 p. M. Eastern. Today, we are in key west, florida, and aboard a u. S. Ship that sunk german uboats in world war ii. Thats at 6 p. M. , eastern time. Up next, medical researchers testify on capitol hill about developing a cure for alzheimers 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 alzheimers also appeared before the senate aging committee. [ gavel bangs ] this hearing will come to order. Good afternoon. It is my pleasure to convene this afternoons hearing to assess our nations progress in combatting alzheimers disease since the enactment of the national alzheimers project act, which i coauthored with thensenator evan bayh in 2011. I dont need to telln9 n the pe in this room what a devastating disease alzheimers 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, alzheimers 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 nations most costly disease, alzheimers is projected to cost more than 1. 1 trillion in 2050 if nothing is done to change its current trajectory. Alzheimers aes is also one of nations leading causes of death. The cdc lists alzheimers 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, alzheimers is the only one of our nations 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 alzheimers. As a wednesday, chances are that the members of my generation will either be spending our golden years with alzheimers or caring for someone who has it. In many ways, alzheimers has become the defining disease of this generation. If we are to prevent alzheimers from becoming the defining disease of the next generation, it is imperative that we dramatically increase our investment in Alzheimers 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 alzheimers, we are spending less than 310ths of 1 of that amount. Less than 600 million a year on research. And believe it or not, thats an increase that many of us have worked for. You can barely see the expenditure level on that chart. Alzheimers 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 alzheimers is escalating dramatically. Surely, we can do more for alzheimers and other diseases of dimension, given their tremendous human and economic price. Fortunately, there is Promising Research that holds hope for alzheimers 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 alzheimers disease has as its primary goal to prevent and effectively treat alzheimers disease by 2025. To meet that goal, the chairman of the Advisory Committee on Alzheimers 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 Alzheimers 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 alzheimers, its less than 1 . And thats the context that we need to put it in. And thats 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 alzheimers 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 im pleased to say is cosponsored 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 im 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 alzheimers disis a normal part of the aging process and that Treatment Options were either hopeless or unnecessary. We now know today thats 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 nations families. We need to do something soon, because this is a crisis. The cost for alzheimers 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 alzheimers 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 roundtheclock 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 alzheimers disease and with a few longterm 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 longterm care services. Much of that for alzheimers 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. Im worried for our country and for families like ms. Stinlys 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 middleclass 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 cosponsoring 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 alzheimers. All that said, those are problems facing families once they have learned of the diagnosis. Yesterday, the Alzheimers Association release third 2015 facts and figures report that found that about half of all people with alzheimers 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 alzheimers patients is much higher than projected a study done by researchers aft Rush University Medical Center found that alzheimers 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 cosponsor 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 cosponsor . Absolutely. I would be delighted. I want to also say that im 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. Im pleased that joining us today on the Witness Panel are barbara, better nope as bee, smith and her husband, dan gatsby. Bee is a wellknown 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 alzheimers disease. Dan gasby is an entrepreneur, Television Producer and entertainment executive and has stood by his wifes 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 secretarys federal Advisory Council on Alzheimers Disease Research, cure and services. He also coordinates the nih Research Efforts under the National Plan to address alzheimers. We will then hear from dr. Ronald peterson, whom i mentioned previously. He is the director of the mayo clinic, Alzheimers 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 nations many caregivers of alzheimers 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 alzheimers patient. Again, its truly touching to see the sea of purple gathered in the hearing room today, but its also a stark reminder of how many individuals and families lives are affected by alzheimers. 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 havent been spending a lot of time down here, but, um, im getting back on the saddle these days. So, um, its been a tough time for me because i do have early onset alzheimers disease. And im here because i want to make though a difference. Im here because i dont want anybody else to have to go through this. Im here to ask to you make a difference, not just for the 5 million americans who have alzheimers and their caregivers, but for the future generations who will face that. Um, this has been this has this has been something thats very new to me because i have been so healthy for such a long time, that ive never had anything like this. But what im going to do is im gonna fight. Im 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 im feeling, like this should never have happened to me, that type of feeling. Im sure that there are many people. But there are many problems out here also. So, i i feel that im ready to to work. Im 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 shouldnt do something because, ill do it and they will tell me i want to do it or i dont want to do it. But its important to me its 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, im excited to be here. Im happy to be here. And i thank you very much. Ive got a lot to do in my future and im gonna do it and im 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 thats 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. Im proud to be an american. Im 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 ive seen what my wife has gone through. Ive 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, im reminded of a song that, of all people, jayz and kanye west wrote, and its and theres a letter knick there, called the pain aint cheap. And the pain airport cheap for the 5 million americans who are suffering with alzheimers disease. The pains 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, im broke