Hours. Subcommittee will come to order. I apologize for the dee lay we have a series of votes and very one later too. I do want to get right to it. I want to thank you for being here. We open todays hearings there are 47 Million People in the world living with alzheimers. And other forms of de meng men shah. More than the entire population of spain according to a report by the alzheimers disease international. The number of victims who have alzheimers is projected to or likely to double every 20 years so we are in a race like few other diseases because it is proliferating so fast throughout the globe. And according to dr. Marie menard, who we will hear from, the number is estimated to grow to 115 million by 2050 as populations around the world age, although there is early onset as l but predominantly it is one of the byproducts of all of us ages and there seems to be a higher proclivity the older one gets. Its been estimated that once someone reaches 85, the chance of some form of dementia is one out of two. Its a very serious problem. The total cost of addressing this is 818 billion. But as early as next year it is estimated that this cost will rise to at least 1 trillion. Thats per year. It will go up from there. As we all know, alzheimers is a cruel disease robbing its victims of their memories and their identities. Robbing their family and friends of the person they know and love. It is excruciatingly painful for someone who lose themselves gradually. I have spoken myself to many individuals, especially those who are early onset who have young families and are dealing with the agony that they know it is progressing. There is no cure. There are drugs, five of them so far and others that are in the pipeline that treat symptoms, but theres no actual cure. And so it is very tough. It takes a very heroic person to cope and manage with that. We also know that the families have to deal with a very painful ordeal as well. The caregivers, the loved ones, the family and the friends. In 1999 along with congressman now senator marquis i cofounded the Correctional Task force on alzheimers which i still cochair today to bring this disease to the forefront of the congressional agenda. To advance support for federal research and to increase awareness. The task force worked in partnership with the Alzheimers Association to unanimously pass the national alzheimers project act which established a variety of experts to work with the secretary of hhs to assess and address Alzheimers Research, institutional services, and home and Community Based care with the goal to identify a cure or disease modifying therapy for dementia by 2025. Today there are over 170 members of the house and senate in the task force. This year we work very hard in a bipartisan way to get an increase of some 414 million to the Alzheimers Research funding at nih. Under hhs appropriations chairman extraordinary leadership the fiscal year 2018 was enacted and passed in september of this year including the 400 million increase for Alzheimers Disease Research at the National Institutes of health. This would bring total funding to 1. 8 billion, currently funded at 1 poipt 4 billion,. And nih spending is almost tripled since fiscal year 2015 when 589 million was allocated for such research. Shockingly the majority of people with alzheimers or other forms of dementia have not received a diagnose diagnose diagnosis. Never up able to access the care and treatment of symptoms that they so desperately need. This is true in the developed world, but its even truer in the developing world. Michael points out in his testimony today that detection and diagnosis are a stubborn problem everywhere. Research shows that most people currently living with dementia have not received a formal diagnosis he will testify, and high Income Countries, 20 to 50 of dementia cases are recognized and documented in primary care. This treatment gap is great ner low and middle Income Countries without a diagnosis there cant be treatment, care, or organized support or the opportunity to volunteer for clinical research. Even when alzheimers or other forms of dementia are diagnosed, care is too often fragmented, uncoordinated and unresponsive to the needs of People Living with this. Condition. The response introduced the Health Outcome planning education or hope for alzheimers act of 2015 to provide Medicare Coverage for Care Planning session for patients newly diagnosed with alzheimers disease. For family caregivers or legal representatives. In recognition of this the legislation garnered 310 bipartisan cosponsors. Ultimately medicare adopted an amended version of the hope of actually an improvement for final rule for calendar year 2017s physician fee scheduled. It robs the victims not only of their memories, but also their awareness, but also their lives. In the american journal of Public Health, Research Survey years of life lost between the number of deaths between 1995 and 2015, annual deaths due to alzheimers complications in the u. S. Rose from 20,607 in 1995 to 110,568 in 2015. During that period alzheimers rose from the 14th leading cause of death among ailments in this country in 1995 to number six in 2015. For the record, this is my fourth hearing ive chaired on alzheimers disease. On june 23rd in 2011 we held a hearing on the global strategy to combat the Devastating Health and Economic Impacts of alzheimers. On november 21st we held a hearing on the g 8 dementia summit and beyond. In 2014 on the actual summit report from the g 8 and now in todays hearing of course. Todays hearing is intended to examine the existing potential options for prevention and treatment of this often this always devastating disease. And the statistic cited earlier likely will be more worse in developing countries if they have accurate records of victims and of deaths. As our hearing testimony will demonstrate, there is hope for alzheimers patients, their families and friends. There is a surge for research. For example, Research Team from columbia universitys Medical Center in 2013 said they had traced alzheimers to the early developmental stages. A discovery that they believe could lead to more effective treatments. In science translational medicine two years ago, australian researchers planed a none invasive Ultrasound Technology that clears the brain of neuro toxic plaques, structures that are responsible for cognitive function. By 2016 scientists at the university of zurich said they were amazed to find that their patients treated with the highest dose of april antibiotic drug witness today will tell us more about these and other advances that again the United States is walking point in the world. In this and we had two tremendous witnesses and experts who are doing their best and their staffs to make sure that we get their sooner rather than later. I would also point out for the record this congress ive joined my colleagues in introducing the bold act which would establish centers of excellence and it is designed to really take this to the next to have congressional support for this effort in a robust way. Ive also reintroduced a law passed last year in the house t. Deals with the wandering issue. We know that when alzheimers or autism individuals have the bracelet, theyre found usually within 30 minutes. When they dont and they go wandering, it can be catastrophic if not a cause of death from drowning and a whole host of other reasons if they are not rescued from that wandering. Next week i will reintroduce the global rain health act to increase research on prevention and treatment of autism. And alzheimers and other forms of dementia. This legislation which i first introduced in 2015 would encourage the building of treatment capacity for these Brain Disorders among caregivers in developing countries and support and increase International Cooperation and implementation of strategies on prevention and treatment. Id like to now yield to the doctor for any opening comments. Thank you, mr. Chairman. Thank you for having this hearing. It obviously is incredibly important. Anytime you can say neuro toxic plaques in congress, thats a good day. As a physician. So im trained in internal medicine and taking care of many alzheimers patients. The urgency of addressing this issue and looking for ways to mitigate the disease but ultimately looking for ways to reverse and cure disease are obviously our ultimate goals. I think we often focus here domestically on what we need to do to help address this issue. But i work pretty closely with our Alzheimers Association and i think the Alzheimers Association has done a wonderful job elevating the level of dialogue but also elevating the dialogue on, you know, why this is a global epidemic. Often when we think about Global Health were thinking about the Communicable Diseases that are out there, but there really is, as there are more developed nations, weve got to spend more time thinking about the impact of nonCommunicable Diseases like alzheimers disease. As we start to think about those Public Health approaches, from my Public Health background, theres a number of things that are the lifestyle modification, the things you can do to slow down and mitigate disease. A second step is building the Public Health infrastructure in the Global Community to help both families and patients manage and navigate that disease. Again, i do think we are going to see this coming tidal wave as people live longer in the Global Community, the lack of infrastructure and the lack of readiness to, you know, manage this tidal wave of folks with dementia and with alzheimers disease and other nonCommunicable Diseases for that matter. And then long term this is a global challenge. I look forward to hearing from the witnesses, you know, we can quantify the direct costs of alzheimers, but then also the indirect costs of alzheimers in terms of, you know, both the patient as well as the impact on families and caregivers. And then ultimately part of the reason why i am such a strong advocate for making the investments in the nih and making investments in research is the return on that investment, if we are able to find a cure or even better therapies to mitigate disease and slow down disease is going to be, you know, pretty significant. If we dont, we will be spending blss billions upon billions of dollars on the back end. This isnt just a u. S. Challenge. This is a global challenge. Mr. Chairman, i think this is incredibly timely topic. I look forward to hearing from the panelists. So thank you. I yield back. Thank you, doctor. Id like to yield for any comments you might have. Thank you for conducting this very important hearing. Many of the things this committee does deals with diseases and things people are suffering from that we dont suffer from in this country. When i came to congress, at 58 years old i had my very first baby. The mother describes her as my very last baby, by the way. But so all of a sudden Maternal Health and infant health, prenatal care became so important to me because it was personal to me. And i always say that on yellow Rose Katherine was, she hit the birth lottery. She was born on may 19th of 2015 on the same day tens of thousands of other children were born. Except she was born on Staten Island in new york city and has every one of her vaccinations, every one of her well visits, and children born that same day who didnt hit that birth lottery, didnt have the same advantages she did. So thats a lot of things that this committee has done thats been personal to me. I am also the only son of an alzheimers patient. My mother died the year before i was elected after suffering for four years. I was blessed. I had her until she was 89 years old. And her mother died when she was nine, so i always say i had my mother for 50 more years than she had her own mother. But i watched this woman become someone i didnt know. A woman who was always calm who became violent. A woman who would sit and just stare even when you were speaking to her because she could no longer communicator understand what you were saying. I learned a lot about the disease. Not as much as my friend dr. Bera, but about the proteins that grow on peoples brains and advancements in medicine that is finding ways to slow that growth down and maybe stop it and maybe at some point that can remove the proteins from peoples brains that may cure the disease is our hope. I know that we gave the National Institute of health in the 21st century cures act billions of dollars to help the advancement of some treatments and cures for things like alzheimers. I just wanted to tell my personal story just so i could tell you how much i appreciate you being here and how important this is in a Global Health environment but how personally its touched me. I thank you for being here. Thank you very much. Let me introduce our distinguished witnesses. And thank them for their leadership. Beginning with dr. Bernard who serves as Deputy Director of the National Institute on aging at the National Institute of health. Dr. Bernard serves as the principle adviser to the nia director working closely with the director in overseeing approximately 2 billion in aging Research Conducted annual lie by the institute. She chairs two department of health and human services, healthy people, 2020 objectives, older adults and dementia, including alzheimers disease. I will then hear from dr. Roger glass who id point out is also from new jersey. Originally from summerville new jersey. He serves as the Society Director at the National Institutes of health. Dr. Glass has maintained field studies in india, bangladesh, brazil. Mexico, china and elsewhere. Has received numerous awards. And the charles dr. Charles award of the for infectious diseases. For his work on developing vaccines in the world. Two experts and two very much welcomed witnesses to our subcommittee. Good afternoon, chairman smith, representative bera, representative donovan. Im happy and honored to represent the National Institute on aging, one of the 27 institutes and centers of the nih. We lead Alzheimers Disease Research. I bring my experience as an academic geriatrician. I can empathize with the prevalence on this illness and the impact it had on families. When i saw patients on a daily basis, it was heartbreaking to see the impact it had on those patients and on their family members and to recognize that i didnt have much that i could bring to the care of those individuals at that time. Its encouraging to be at nih at this point and to see the blossoming of more and more information thats developed with Global Partners, that will hopefully get us to the point that we will have a prevention or cure for this illness. We have, in fact, over the decade, supported a number of International Studies that have led us to a greater understanding of the illness. I will spend what time is allocated to me to briefly highlight three of those. First, were making significant advances in our understanding of the course of alzheimers disease from our health and retirement study. This is a 20yearold national sampling of older adults in the United States. People 50 years of age and older who have followed through to their death. And it has allowed us to see the natural course of aging as well as the natural course of the development of alzheimers. This study has had a new component added thats an international component. The har month nized assessment prot toll toe cal colonel or the h cap. We have the hope that if we can get researchers across the global to harmonize the way they go about cognitive assessments, we will be able to better know the course of the illness and to sort out the genetic social environmental influences that impact alzheimers disease. Were supporting the deployment of hcap and hrs and health and retirement studies as well as a smaller scale study in south africa. This will provide us some unprecedented scientific opportunity. A second important need is for means to make the diagnosis of alzheimers earlier than the current standard which is when a person has cognitive and functional problems. There are many promising new findings, particularly as a results of something called the alzheimers disease. Neweral imaging disease. Adney is a worldwide collaboration. It has led to the identification of biomarkers, proteins and images of the brain that allow us to measure on the set and progression of this disease. A decade ago the only way that you could definitively say that someone likely had alzheimers disease was by autopsy. But now we can see in a living brain the deposition of plaque in an individual and follow its course before they have clinical symptoms. As we make progress of validating this and other biomarkers, we hope to translate this into useful clinical tools. Third, and i supportive investigators have been conducting treatment trials that have a global reach. One such study which has received quite a bit of attention is the disease trial involving the Worlds Largest group of alzheimers disease. Approximately 300 family members in the country of colombia who share a mutation that guarantee by middle age theyll have alzheimers system. It focuses on whether a drug can prevept or delay the cognizant decline. Were very grateful to this family and all participants in alzheimers disease and related trials. They are true heroes who have allowed us to learn and continue to learn about this disease. Finally id say that my patients would tell me every day they did not want to grow older if they did not have their cognitive capacity because they did want want to become a burden to their families. With, we Global Partners are working to develop answers to their concerns. The global rise of alzheimers prevalence, the situation is urgent as you have well articulated and were using every possible approach to diminish the impact of this disease as rapidly as possible. Thank you for allowing me to testify and i look forward to your questions. Thank you for your testimony and your insights. Dr. Glass. Thank you. Good afternoon, chairman smith. Acting Ranking Member bera and distinguished member donovan. I too had a father with alzheimers and i sympathize and went through the same experience. Im roger glass. Im the director of the fog ar Tee International center at the National Institute of health. Im honored to join my colleague in discussing how were confronting the burden of alzheimers disease. Diseases like alzheimers know no borders. People suffer from this disease and will benefit from treatments and cures. We need to find the brightest minds everywhere to assist in this endeavor as well as to identify populations with unique environmental or genetic risks because the High Quality Research that we do doesnt happen only in the United States. It happens elsewhere. In order to take advantage of these international situations, we need the best trained scientists with high ethical standards, with good Data Management capabilities, with laboratories capable of conducting the research thats absolutely essential. Fogarty facilitates building these Research Partnerships leading to capacity, billing capacity for researchers internationally to create the next generation of scientists who will address the alzheimers condition. These scientists who will address these problems in the future are just being trained today. As dr. Bernard mentioned in her remarks, nia is supporting the study and n colombia of an extended family with a genetic mutation for familial alzheimers. This family is center stage for much of our research on alzheimers. Cures and preventions. This Partnership Began in the early 1990s when an american investigator then at harvard met a colombian physician, dr. Lopero. He had a patient with alzheimers and found that the patients father and grandfather had alzheimers. Because of his curiosity as a young physician, not a researcher, he searched out and developed a cohort of 5,000 people with this genetic problem. It was from this conversation six years later of these american and colombian investigators that they began a decade long collaboration to look and see what they could learn about the epidemiology and genetics of alzheimers. That has proved incredibly fruitful. Beyond our wildest expectations in the 1990s these doctors received a grant to work together. By 2004 and 07 the National Institute of aging and fogarty were both engaged in this research. This researched not only following up, but training people in Laboratory Methods n building capacity so that we could actually conduct Quality Research under the best ethical standards in the field. At the same time, it also engendered collaborations between communities that were invested. These were not patients in colombia. These were Community Participants in research. A big difference. Preparing to conduct for scientists to conduct highimpact research is critical to the fogarty agenda. And what began as a partnership between these two scientists, individual scientists, is now the cutting edge of whats become 100 million clinical trial. The first in the world for early prevention of the progression of alzheimers disease. Its a unique study that couldnt be done anywhere else, and this cohort has really an incredible finding and discovery. Its an essential part of the Research Team as is the laboratory in colombia. Colombia is not unique in this. While the topic of todays discussion is alzheimers disease, the Fogarty Center has also been involved in many other neurologic problems. Such as the search and research on cerebral malaria, neurological hiv, hydrocephalous, chronic psychotic disorders in tanzania and stroke outcomes. Just to name a few. Fogarty takes science where the problems are. And where the opportunities are for the most rapidly accelerating advances in research. And we also are concerned and developing true partnerships for research and advancing capacitybuilding. Like dr. Lopera, a unique investigator in a unique setting, with a unique population of this familial alzheimers disease, thats leading us to hopefully more rapid cures. From this partnership and with nih support, were already advancing discovery research. Were already working in basic research in colombia in collaboration with the u. S. The group in colombia are now an integral part, an essential part, of the u. S. Research endeavor on alzheimers. And the results of this endeavor, both for the u. S. Population and for the population in colombia and around the world, will all benefit from this activity. Fogarty is essential for building these International Collaborations and we work very closely with nia and other institutes at nih to do this Important International collaboration. Thank you very much. Dr. Glass, thank you very much for your testimony and leadership, as well. Let me just ask the question with regards to imaging. Which you mentioned a moment ago, doctor. What kind of brain imaging are we talking about . C. A. T. Scan, mri . Obviously that is not available in most developing world settings. Right. And since there is such a large numbers of people never get a diagnosis, about 50 or less in the United States, how quickly is this technology being advanced so more people will get, you know, a definitive earlier on so some of these drugs that, again, only deal with symptoms can be applied to mitigate those symptoms . So what i was describing is opportunities with imaging and looking at proteins are meant to be in the Research Setting currently. But they are being refined and were beginning to look at things in the blood, in the peripheral blood, changes in smell. Things like the development of depression symptoms years before a person actually has dementia as things that will help us to be more precise in making that diagnosis clinically. So it all comes together to help us. We dont quite have something that can be translated directly from the research lab that is anything better than we currently have in terms of looking for symptoms right now. And just let me ask you. You mentioned dr. Glass, about the uganda situation with hydro self allic foundation. We had doctors develop a shunt intervention to help people who have water on the brain. And its amazingly effective. And not much by way of having to redo it. You mentioned risk factors. Obviously, genetics is a risk factor. We all know that. And one of the studies you mentioned thats a big focus. But when you talk about environmental risk factors, we know that in the area of autism, environment does play a very serious role. And nih has chronicled that in its reports. Im wondering if other areas of investigation are being pursued, including toxic chemicals of various kinds. Lyme disease. I chair of the lyme disease caucus, as well. And its a huge problem in my district. In my state. And in our region. Grossly underreported. And there have been studies that found that people with lyme that dementia was one of the consequences. And im wondering if thats being looked at. So if you could speak to the environmental side of it, if you would. Lets all start off and say that from the environmental perspective, yes, we have a number of studies that are looking at various environmental toxins that may be contributing to problems with the development of alzheimers. Thats particularly assisted by projects that are looking at people in the longterm and looking at what has happened to them. Were also looking at education, looking at diet. Looking at geographic location. All of those may contribute. I quite honestly do not know specifically about lyme disease. We could look back and get back to you on that. But a variety of things environmentally and socially seem to be associated with differences in the frequency with which various groups have alzheimers disease. Dr. Glass . I dont know of other risk factors for alzheimers. Although hispanics have an increased risk and an earlier presentation. But for other neurologic disease, we know a lot about infections like malaria and hiv, and other meningitis. Heavy metals and exposures. We know about foods in africa, for instance, like manioc which has a cyanide and leads to poisoning and alcohol and fetal alcohol. So there are other toxins. But for alzheimers, dont have those yet. And we could look and provide that information. I appreciate that. For the record. The International Response has become increasingly aggressive and robust. In 2012, w. H. O. Released a document, dementia, Public Health priority. And i and greg simkins and others on our subcommittee met with margaret chen, w. H. O. Director general. And she had a real heart for this, as do so many others at the w. H. O. In 2013, the g8, now g7 committed to more research funding. And thats canada, france, germany, italy, japan, russia, United Kingdom and, of course, the United States. And im wondering if you could tell us that, plus the newest 2017 w. H. O. Action plan. Paho has a plan. People seem to be coming up with action plans, and thats all great. But how well are they being implemented. Are other countries, for example, like we are. We are tripling our nih funding. Its a bipartisan effort. I mentioned tom cole has done a wonderful job. Hes got a heart for this. The Alzheimers Association never lets up in pushing this and having a great impact. You know, in my own state, Christine Hopkins is the alzheimers ambassador. We all have one. She is constantly in contact with me, and i think that is a great way of advocating on behalf of patients and caregivers. Katie maclin is the director in our area, and i was just at a march for alzheimers in bradley beach. There was over 1,000 people. So the Alzheimers Association are here, and will be submitting testimony, as well. You know, really pushing for the private sector to come up with money. Augmenting, of course, and leveraged by the Public Sector money. Is japan, is germany, the uk, the other g8, the affluent countries, coming up with resources so synergistically well see a great surge in research . So i could certainly say that we track whats happening internationally in something that was developed jointly with Alzheimers Association, something called the international Alzheimers Disease Research portfolio. That allows us to see across the globe whats going on. It currently has more than 8,000 projects. Representing 30 funding agencies. 11 different countries. We also work through the department in being responsive to what the World Health Organization is doing to work across the globe in alzheimers projects. And we are aware that various countries have developed plans as we have. So i would probably defer to my colleague, dr. Glass, for further elaboration. Most important risk factor for alzheimers is age. And we see aging in the population around the world, which is why this has become such a tremendous problem as we look forward. And i think its because of that aging that many groups including the japanese and the english, have invested in this heavily. I think as new diagnostic methods become available, so you can actually make a proper diagnosis, the importance of alzheimers globally will be observed in each of the countries that does the surveys. And so its with the improvement of diagnostics that dont require a dead brain that well be able to understand the prevalence and increasing incidents over time. Just two final questions. Is there a best estimate if things dont change, where we will be by 2025 and 2050 . I gave one estimate, and theres highs and lows, of course. They were all guest estimates. Do you think we will reach the goal of a diseasemodifying therapy by 2025, which is the w. H. O. Push, which is our push, that we all got behind and pushed a couple years ago. Do you think well get there. Is there enough Critical Mass in resources to get us there . I would certainly say were very grateful for the Additional Resources that have been provided. And again, as a clinician, im really excited. Because theres been the opportunity to invest broadly. Basic research that will help us to better understand whats happening mechanismcally with this illness. Explosion of recognition of genes related to it. We went from only knowing four genes a decade ago to more than 24. Lots of clinical studies. 100 or so. With results coming out in the next many years that will help us to understand which direction we need to go. Enhancement of populationbased studies that will help to answer questions you were asking about toxic exposures and social factors, et cetera. So i think that theres great momentum going on. And well have to see. I would concur. We have more tools to research alzheimers today than we have ever had. When my dad passed away, we have imaging techniques which are extraordinary. Genetics, genetic entrees to the disease. Animal models that allow us to test out new drugs. And so were in a position better today than ever before to accelerate the advance. The fact that we have so many monoclonals in Clinical Trials and drugs being tested. Could any of them delay the progression of the disease, they will have a huge impact on the cost of care. So i think in the short run, we have Clinical Trials that are ongoing now. Also, the trial in colombia. If its successful, we will all benefit. If it fails, it will tell us that were barking up the wrong tree. And we need to find other targets that would be more susceptible to for new drugs. So either way, i think were on a role that we never had before, and the opportunities are clearly before us. As i mentioned in my opening, ill be reintroducing the Global Health care act brain health bill next week. It deals with three diseases. Autism, alzheimers and hydro self allic condition, referencing what you mentioned about uganda, dr. Glass. It concerns me that usaid and ive had conversations with mark green, new administrator. Its important we do infectious diseases, clinical diseases, by brain health has been left to cdc and diplomacy area, not to the assistance at the country level. So my hope is we will be able to get this bill passed and begin moving in the direction of funding those kinds of initiatives, as well. Dr. Burr. Thank you, mr. Chairman. Dr. Bernard, you talked about longitudinally following older americans. And so forth. As youre building this database and looking at that database and now adding in folks from around the world, as well as in that database, what kind of patterns are has it been around long enough and what types of patterns potentially are emerging . Thank you for asking that question. What were seeing is in the United States, at least, that the incidence of alzheimers disease may be decreasing in certain segments of the population. Whether thats because of better education, better Blood Pressure control, better nutrition, we dont know. But were seeing other sorts of things, like were being able to determine that if you make it to age 70, without cognitive impairment, that you still have as a man almost one out of four chance of developing alzheimers. As a woman, one out of three chance of developing alzheimers disease. And were seeing when we compare across countries that there seems to be a socioeconomic status relationship. The higher the socioeconomic status, the longer one puts off the likelihood of developing an alzheimers type dementia. So there is clearly a social component to this. And we are looking forward to further disentangling that. Do you see a pattern with level of Educational Attainment. So lower rates of alzheimers disease in folks with higher Educational Attainment . It appears that the that there is such a correlation. That the rate of the development of the disease, the age at which one develops the disease, is the rate is lower, the age at which you develop is older. So there seems to perhaps be some sort of protective or beneficial effect of education. So when i used to practice medicine, i would tell my patients to do crossword puzzles every day. It wasnt just something that i was telling them to do in terms of exercising your brain and going to distant memories. Yeah. We have a number of studies where were trying to really disentangle exactly what makes the difference. Whether its doing crossword puzzles or the brain games are out there, et cetera. We dont have definitive evidence thats truly impactful. We do have one study, something called the act study, that demonstrated that if you trained people in a particular component of cognition, that that was beneficial for that component. Like speed of processing of information or memory or things like that. But its not clear that it truly can put off dementia. In fact, we had the agency of health, research and quality and the National Academy of science, engineering and medicine to look at that very carefully for us recently. And their assessment was that we are not yet at the point that we can say definitively those things will be recommended to patients will make a difference. But it certainly cant be harmful. And particularly if theyre enjoying those sorts of things. I do the same sort of thing, as well. Dr. Glass, do you want to add anything in addition . Again, as we do when we do medical research, were creating this huge database, and were looking for patterns. In terms of risk stratification now, as, you know, we try to come up with better diagnostic tools, what are some of the, you know outside of Family History of alzheimers, where are some risk factors that we ought to be thinking about, and educating the public on . And certainly educating our physicians on, as well, at our work force . So certainly, it appears that people who are likely to develop an alzheimers type dementia are the people who live for a longer period of time. The people who may not have as high a level of education. People who have had problems with high Blood Pressure and diabetes and thats the reason some of the populations that are considered to be underrepresented populations in the United States may have a higher prevalence, as dr. Glass alluded to. There may be some role for past significant head trauma. Things of that sort. But, you know were not we still havent quite seen definitively those patterns emerge out of the database. There are risk factors that we have seen, whether they are modifiable risk factors is the question. Okay. Let me just add, congressman barrett, dr. Barrett, even within the colombia cohort, which comes from a single founder, there are genetic mutations that have been introduced over the last 200 years. So that the age of onset, the speed of progression, are all i had osink sees, differences, that we can understand by linking the genetics with the phenotype and with the progression. So we can actually learn a lot about the genetics and by plotting those individuals. So i think theres when we deal with the melting pot of the United States, with genes that have been mixed from all over, much more difficult to do. And i think that well learn a lot more from this cohort and perhaps from others, which have these familial modifications. Dr. Bernard, with a Family History of alzheimers disease, what is the risk of developing alzheimers disease . Can we say definitively . What we can say is that if you have an 4 gene or two versions of the april e 4 gene, you have a high risk. We cant say there is a 100 likelihood but a high risk of developing alzheimers disease. If you have a protein mutation, those are associated with early onset alzheimers disease. They tend to be autosomaldominant meaning likely youre going to develop alzheimers disease associated with that. And then just to simply a Family History, yes. I mean, if you have family members who have had an alzheimers type dementia, you may be at greater risk as well. Whether its related to one of those other genes that we have discovered of late, or a combination of the genes or environmental factors or social factors, its not totally clear at this point. In terms of risk stratification, so patient presents with the Family History of alzheimers disease, how readily available are the genetic testing and, you know, again, just to try to think about risk stratifying . So i think that there are private entities that are available that can do the genetic testing. We certainly have a system alzheimers Disease Centers that are set up to bring people in to participate in research programs. And some of these centers are focusing on people who have genetic risk. And i again would put a plug in for people to be involved in such things. We need lots of different people. A diversity of people involved in these studies to really understand what how it is going to present in different groups. And do we know, are there any prospective studies going on right now where youre taking folks with a confirmed diagnosis of alzheimers type dementia, taking their family members and prospectively following those family members, looking for patterns . Are those studies ongoing . So we have a number of studies that are looking at people who by a bio markers they have the chains in the brain. They may have a genetic abnormality, but are not yet symptomatic. And were looking at various interventions to try to make a difference in their outcome. So to that degree, yes. And at this stage, with what we do know, theres nothing that prevents us from educating our health care workforce. If someone has that Family History of alzheimers disease, you know, they ought to look at those other mitigating factors. Manage their diabetes better, look at other lifestyle changes, look at alcohol consumption. And, again, other mitigating factors that may not prevent them from developing alzheimers, but may slow down the evolution of the disease. Look at maintaining brain activity through, you know, whether its, you know, brain games or crossword puzzles or maintaining physical well being. Those are all reasonable interventions that we can do that probably have a cost benefit. But also, you know is that an accurate statement . I think thats a fair statement. That National Academies and the agency of health and research and quality study that i reference, they said we do not yet have definite evidence, but there is encouraging if inconclusive evidence that controlling Blood Pressure and hyper tenses, physical activity can make a difference. And inconclusive, but possibility for cognitive engagement. So, yes, i would hope that my colleagues, your colleagues, would do all of the things that you had mentioned, as well as encourage those patients to think about getting involved in a clinical study. Right. I would ask 100 more questions, but i will yield back. Thank you. Now that dr. Barra has made dr. Glass and myself feel real comfortable about asking about Family History of having two patients who have history of alzheimers. Thank you, dock, this entire process is an ed cag force me. I want to ask about were talking about studies and being able to diagnose. And doctor, i remember when they say you needed an autopsy to actually do a diagnosis. I remember that. Are we advancing also in how were treating patients now with alzheimers, as were waiting for the studies to conclude and how advanced have we gone . I cant believe what you said in your testimony about i think identifying four genes ten years ago or so. Now we could identify 24. Thats an incredible advancement for the person on the panel who is not a physician. So has our treatment gotten better as your studies have advanced and developed . So we unfortunately do not have a true treatment. We have drugs that can slow down symptoms for a period of time. But it really doesnt change the course of the illness. So at the same time that we are vigorously looking for that prevention or cure, were also supporting research thats looking at being more effective at caring for the individual with alzheimers disease and for their caregiver. In fact, on the nih campus just last month, there was a summit on alzheimers care giving with some 500plus researchers, advocates, People Living with dementia. And it was really edifying to hear them reviewing whats there, and noting that we have a lot of interventions that are effective and can be generalized. There are opportunities for further enhancements there. Some 450 recommendations came from that study. So we are sifting through that and seeing what we can do to further enhance things. But i would like to think that we are further down the road in terms of paying attention to issues of caring for individuals of alzheimers and for their caregivers. Theres still room for further improvement. Anything to add, doctor . Im sorry. Not really. It would be nice that we had a cure. There are certainly cultural differences in giving care. And keeping people at home versus in institutions. Definitions that people use. Weve supported research on caregivers in the spanish language, because the way you make a clinical a clinical diagnosis based on history is linked to the terms that are used for dementia. And for accepting it as a disease. And i think thats an area where were learning. But not breakthroughs as such. Just in the caregiving. Quality of caregiving. I certainly understand that. My mother suffered for four years, as i said. A woman from trinidad and a woman from ghana treated my mother like she was their own mother for four years. These people became part of our family. We still have thanksgiving with these two women. My mother passed two years ago. And the toll it takes on people it was almost like my mother had this innocence about her. She didnt understand what was going on with her body and mind. It was the people around her who were suffering. So the emphasis and dr. Barra said it, too. The recognition and focus on some of the caregivers of alzheimers patients i think is just as important as caring for the patient. When you are successful and we do develop a treatment or a cure, another one of my fears is that as we i spoke earlier about Global Health with Maternal Health and child health. Or even prenatal health, is that were not getting those things that we actually do have now here for our children to some of those developing countries. Those folks who are dont have the resources we have. And i suspect we probably have the same problem after your success in finding treatments and cures for alzheimers of getting whatever is developed to folks in less developed areas of our world. And do you see that as something that i know its first finding the treatment and cure. But once we do, getting it to folks outside of our own country, i suspect the folks in our country, for the most part, anyhow, will this will be more readily available to them than places in other parts of our world. So as we see with immunizations for children or prenatal care for a mom, my fear is that after youre successful, we might have the same problem getting the resources to the folks who need them outside of our own country. Yet you see that as an issue . I mean, two comments. I thought it was very thoughtful about your mother. And i think part of the issue in caregiving is how do we train caregivers to give the quality of care that your mother got from these two women. My mother was my father was in exactly the same situation. And that quality of care and how we train people to provide this is essential. Some of this we can learn through global collaborations. On the other part of your question, can the interventions that we develop in the United States be carried abroad, we have a whole agenda at fogarty on implementation science. Taking what we have learned and implementing it in developing countries. We have learned, for instance, how to prevent mothertochild transmission of hiv. But in many countries, this has not reached all the pregnancies in mothers. And if you miss a pregnancy, youll have a child born with hiv who will need treatment for life. So in the area of implementation strategies, thats really become a priority for our research of taking what we have learned and implementing and in developing countries. I think chairman smith, one other thought since you mentioned dr. Wharf, one of the values of Global Health research from his research is that he developed methods to treat hydrocephalous without needing to revise shunts every few years in children in developing countries. Because you cant take them in for repeat surgery. So through two procedures that hes adapted, there were mixed together. One is to open the outflow of cerebral spinal fluid. The other to cauterize the coat ride plexus. That produce cfs, the spinal fluid. He could decrease the flow, increase the outflow, decrease the input. And so he could do a single operation without the revision. That operation is now being used in the United States to treat our children with hydrocephalous. So its through that Research Done in uganda by an outstanding american neurosurgeon, seeing the need in that country to bring that Technology Home to our own children. Its another benefit of i would say reverse technology transfer. Learning from the developing world these kinds of lessons. It will make American Children survive better with hydrocephalous, as well. Since everyone mentioned a doctor and you are the only two doctors i know besides dr. Barra, tony fauci is a friend and i remember him saying at one of our conferences that if we find if you find if youre successful in finding a cure for alzheimers, the amount of money that we gave nih in the 21st century cures act, it will pay for itself. The amount of money we spend on treating this disease. I thank you both for your work. Besides being here today, i thank you both for your work. The people who will benefit once youre successful. Thank you all. Thank you, dan. Let me just conclude and ask you, if you could, the 2017 w. H. O. Action plan. On november 13th, we know the bill and Melinda Gates foundation, now its 100 million for Alzheimers Research. The u. N. Itself has established a global dementia observatory to co late and disseminate to support evidencebased planning and strengthen policies as well as health and social care systems. Emmanuel macron marked the International Day for violence against women. His one hour remarks were provided courtesy of france 24. Youre watching france 24. We will cross live to the palace here in paris where president Emmanuel Macron is speaking. Lets listen in. Translator the equality of men and women must lead to a fight against violence against women. I would like to thank you for your commitment because that is at
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