Transcripts For CSPAN3 Politics And Public Policy Today 20240622

Along with the director what our options might be as we proceed forward. This is something i would recommend all of the members that they become educated in on a periodic basis. Because this is not the end of Technology Advances and therefore this is not the last challenge were going to be faced with from a technology standpoint. Senator langford. Thank you mr. Chairman and you are right, this is not the last one this is the latest Technology Battle were dealing with. George comey thank you for your work and pass on to the folks that work some very long hours leading up to july the 4th our appreciation for what they did for the nation and the citizens of my state and people around the country. We do appreciate their work very much and you have a terrific team. The challenge we face on this is not only on the Technology Side and dealing with terrorism, it is the benefit gained from this. I would say the folks at opm would be glad that touk about to talk about encryption if they would have kept their date you in a encrypted location whether it be retailers around the country or banks or government agency, we are benefiting from encryption and the technology invented. The hard part is the other side of it. And we have to have a balance in the conversation because we absolutely need encrypted technology because we are very skpoesed and finding out the ways that our information is exposed and we need that technology to advance on one side as we deal with Cyber Security and basic Law Enforcement and real threats for physical security we have to have a different capability and that is the complicating factor of this. With that, in that conversation talk to me about Legal Frameworks. If someone goes on social media and they have child pornography this is a criminal issue. If someone goes on to social media and says here is a group of people to kill and we would like you to kill them and here is some ideas to do that talk to me about the Legal Framework between the to because there is a step before this that is the recruiting and the group of individuals recruiting is looking for people that believe like we do which is not the problem but will also act out and kill people. Help me understand the frameworks there. Well if someone is on social media, talking about the possibility or offering any kind of criminal activity, which includes terrorism because it is a criminal act as well right. That is predicate for an fbi investigation. Using lawful tools and judicial orders to find out what is going on there and who are these people. And im talking the step before that then and that is what im talking about now. The social media site. What does that trigger at that point or do you begin the investigation, you begin the process obviously of trying to track this down. Because they are encouraging a criminal act on american soil but then you have extra communication that is happening now in the encrypted level. Is that what im picking up . Yes. They are broadcasting the poison through twitter. They are 21,000 followers now in english and theyll have twitter following communications so tweets back and forth and then direct messaging through twitter all of which with lawful process, we can get access to and evaluate. And if it looks like someone and this is how isil operates. If the person appears to be serious, theyll say move to this mobile messaging app which is encrypted end to end and that is when we lose them. And we have as i said earlier, we have no ability if we intercept that mobile messaging app data traveling back and forth, we can intercept the data but it is gobbledy goop. And so the platforms, they see no issue, once it is an illegal activity happening on their platform. Is their response to say you cant do that on this platform or their response is were open for anything whether it is prostitution, child porn or terrorism, you can use it. Oh, im sorry, i misunderstood the question. They are being quite good about it and it is getting increasingly good. Twitter does not want people engaging in soliciting criminal activity of any sort on their social media platform. But they are being particularly aggressive at shutting down and trying to stop isilrelated sites. And i think it led isil to threaten to kill the ceo and helped them to understand the problem in a better way. They are being quite good about that. Okay. And then you have alluded twice now that the u. K. And france are a little bit ahead on this and you discussed this. Can you give us greater detail on what they are discussing. When you say they are a little bit ahead on us i think it is rare for europe to be ahead of us on anything so help me understand what you mean by that. I dont want to swell the brits heads. They have passed legislation called drippa, i dont remember what it stands for, that requires data prevention retention and providers must comply with lawful orders for data moving on their network and so they are ahead of us in that theyve passed a legislative package that addresses in part what were talking about here. Where they are not ahead of us they have to figure out how will that work when all of the providers are in the United States. And so how will they enforce the legislation if they want data from someone who is located in california and all of the infrastructure is in california, how will they make that a reality. Okay. Thank you. I yield back. Senator risch. Thank you, senator. Director comey those of us on the Committee Meet regularly with heads of state and people like you from other countries. Interestingly the top question to us and the top concern to us is similar from what we get from the American Press and the American People and that is that this whole thing is that this whole thing has gotten to the point where the most serious problem are the lone wolf people who are either inspired or directed from out of their country to do something. And of course the most recent and horrific example is what happened in tunisia just last week. And without obviously we are in an open session i understand that. But i would like to give you the opportunity to talk to the American People and tell them how what a concern this is for you how this fits in your priorities and what you are doing about this in matters that are unclassified. Could you do that for me, please. Sure. Thank you, senator. Isil is reaching into the United States, to all 50 states, trying to motivate troubled souls, and increasingly kids to either come to their caliphate or kill where you are. And social media this investment buzzing in your pocket all day long it works. It works to sell shoes it works to sell cars and works to motivate troubled souls to do bad things. We are now reaping the results of a year long effort by isil to invest in the social media push which is why you see so many arrests by the fbi and these are the disruptions of stopping people from shooting innocent people or behead them. This is going on all over the place. We are working very, very hard on it. I want the American People to know about it because it is an important thing but we need their help. In almost every case someone saw something. Someone saw Something Weird that didnt seem right. We have folks to tell us. Human nature is hair on the back of your neck saying i must have misunderstood. If everyone is having a bad day. But when someone has hair stand up on the back of their neck saying that guy doesnt seem right, and tell somebody so we can check it out. We need to help. Because this spans all 50 states, we have state and local Law Enforcement helping us the good folks of america, if you see something out of place, just Say Something and well check it out. You can tell any Police Officer or deputy in the United States since 9 11 and weve gotten our act together and that information will get within minutes to the right people. Director comey thank you for that and appreciate what you and your organization does. And we all know that youve got to be right every day, 100 of the time and they only have to be right once and youre doing a good job and keep up the good work. Thank you, senator. Director, were going to take just a few more questions and just make this note for members. Weve got a series of five stacks votes starting at 4 30. I want to try to sort of wrap a lot of things that you talked about because people have asked individual pieces of this question on going dark. Is your greatest concern finding the balance between what we Ask Phone Companies or Service Providers or manufacturers to do to their products or their system and where the break point is before they become a Foreign Company versus a Domestic Company where i would take from what your folks said to you when you get to the point youve chased them out of the country, youve just made the problem much worse versus better. Can you help us dissect that . Yes. The reason this is the hardest problem ive seen in my career in government is we have important Public Safety issues that weve talked about that i think everybody agrees are implicated by the universal strong encryption and then we have innovation which is unbelievably important and the engine of our amazing country and we have security, as a number of senators have said, i care a lot about Cyber Security. I love strong encryption. So how do we take all of those things we care about, innovation and jobs security on the internet and security for ordinary people from crime and terrorism, how do we do we optimize them all. And as i said, some smart people say if you do anything it will destroy the internet or chase the business overseas. And so i do think we have to engage on the technical solution with smart people and think about is there an International Aspect to this and again im making this up but ought not the civilized rule of countries agree to something that makes sense. And some people say if we do this for you, we have to do it for china. If china wants you to do for them what i want you to do which is require to go to an independent judge, and show probable cause and get a written order and be subject to the constraint and over sight that would be great for the chinese people. I dont think they would like that. And im less worried about china. But im worried about the point of chasing business to other parts of the western world which is why i think we have to be thoughtful about it. We certainly get that part and well follow that up with some tech Company Questions at a hearing. Now before i turn to the vice chairman, i want to give you one opportunity, if there is something you want to share with the American People, that you havent already talked about as it related to the bureau, i want you to give you the opportunity to do that about your folks at the bureau and what the bureau does and why the American People should care whether you are successful. Well, as i said earlier we work for the American People. I hope folks know people who work in the bureau. We are ordinary people. We use the tools you gave us. And im here not to scare the American People but to say to the owners of the fbi, i have a problem and i need help fixing it so i can continue to do my job. But make no mistake about it the folks who work at it, well stay it at every single day and around the clock and we think it is irresponsible not to tell the shareholders, the people from the fbi, the challenges we are facing so we can figure out if we can address it. But my folks, on tv sometimes we look great and sometimes not, and in movies sometimes not and the director is doing exciting things that i would rip an achilles doing but we are ordinary people who have chosen not to make a good living but to make a different kind of life. We love this work. We love working for you and we are simply here to tell you sort of give you a status report on how is it going with the tools youve given us. Vice chair. Thank you, mr. Chairman. This committee passed out the intelligence authorization bill i think on june 24th. And in that bill we put a provision which would require Technology Companies to inform the appropriate authority when they obtain knowledge of terrorist activity. Now this is modelled after an existing law which requires Technology Companies to notify authorities about cases of child pornography. But if doesnt require companies to monitor any user subscriber or customer. It is really the beginning of saying, look mr. And mrs. American technology, you have a responsibility too. What do you think of that . It is an interesting idea. Ive heard about it. My folks have told me about it. I havent read it or studied it and i frankly cant give you an intelligent answer. It is an interesting answer. I do find in practice they are good about telling us what they see. So that is i hate to give you a nonanswer. We do that for child pornography. Dont you think we should do it for probable terrorist acts . Maybe. But i havent heard i would want to hear out the other side oh, dear. I want to make sure im not missing something. Again, i havent read it. Im dumb enough when i know something, this is something i havent read to give you an intelligent answer. Okay. Mr. Comey one last question. If the United States were to require our companies doing business here to ensure government access to encrypted communications, would you expect that foreign governments would create the same require. Ment for Companies Operating there. I think they might. Or might try to. And i will tell you that in my view, that would clearly be the outcome. I think that would make american individuals and businesses more vulnerable to surveillance by foreign governments. And i want to leave you with one last thought. Ive been on this committee for 14 years so i kind of get a sense where something is headed. Ain think mr. Director where this is headed is towards proposals for some kind of stockpile of Encryption Keys. I dont think we have it flushed out where centers want to go. But i get the sense that is where this is going. There should be a stockpile of Encryption Keys for government to access. I want you to know im willing to work with you on ideas here. But i think this proposal is a bigtime loser. It is a loser on security grounds for the reasons that i mentioned, it is a retreat on privacy, and i think it will do great damage to our cuttingedge Digital Companies that have jobs that pay good wages. So i hope were not going to go there. I just want you to know my sense, having listened to a couple of hours of this and listening to this mornings testimony where i think this is headed and i think it is the wrong way to proceed. Thank you, mr. Chairman. Senator martin heinrich. Director comey, youve said this before but i want to say it again. Thank you to all of your personnel, not just in recent weeks but efforts that go unsung year in and year out. I want to thank you for the amount of humility youve shown today. I think it is helpful at wrapping our heads around how we should proceed on this. Because i think that the most dangerous thing is to jump to a solution that turns out to be the wrong solution. I have some ideas that i wont share in open session, that ill share with you and share with my colleagues here about places we should be investing right now to address some of these concerns. And ill just reiterate, i think we would be making a a mistake if we immediately jump forward and say we passed a law tomorrow that prohibited strong end to end encryption with temporary expiring keys. And effectively, what we did, under that scenario, or at least what i would fear, is that a terrorist or a criminal would simply download an app from pakistan or somewhere else that would allow them to get around this scenario and it would put our americans data at risk while protecting theirs effectively. So i think we need to think through all of that to make sure that at the end of day were were getting at the people causing the problem and were not building in weakness into the protection of our own countrys data, be it the government or individuals who expect their financial data, their healthcare data all of the things that we use online now to remain private. So with that once again i would ask you to share any final thoughts and thank you for realizing that there are going to be a lot of questions and realizing that were not going to have all of the answers immediately and we shouldnt jump to answers before we completely understand the problem. Thank you, senator. I agree that something has to be approached carefully. I think it is the hardest problem ive seen in government. The stakes are very, very high on all sides of this. I think we care about the same thing. Whether from industry or government. And i think that is one of the great things about this country. We do hard stuff. When we talk about it together and figure it out together, especially when the whole effort is around shared values. Ill leave you with one last thought, weve heard about the amazing innovations of Silicon Valley and i tend to agree that on the business front, incredible stuff comes out of there all of the time. As we seek a solution to some of these things we should not forget the incredible innovations that come out of our National Laboratories and some of the solutions may make even better sense in this scenario. So thank you once again, director. Thank you senator heinrich. I would think less of you if you didnt get the plug in there on the lab before you left. And i wont speak for the vice chair, but if anything ive been a little frustrated. Frustrated that nobody in the administration, no agency is coming up and saying here is what we think we need. I mean, weve been talking about going dark for some time. And i think you deserve a tremendous amount of credit for your restraint. Dont know that we know the answer yet, therefore were not laying proposals on the table and not up saying here is a solution we think might work. Well come when we have a solution we know will work. We know we can do. So i commend you for that. I havent heard anybody talk about thousands of keys until today. Im sure there are some that sit at home and night and are concerned that maybe that is the choice well make, if it were that easy, i think we would have a solution proposed to us and considering legislation and diane and he would be hashing it out with the members the fact is we know that wont meet the test of getting legislation one, through congress, and two possibly signed in law. And i think were just as challenged as you are, director, as to the solution. We want to be part of the solution. We want to work with you. I think it is safe to say were probably going to have some hearings, maybe open and maybe closed. Ceos of tech companies, the privacy groups and try to reach out to some experts. Not with the belief were going to come up with a solution that you havent come up but that well be knowledgeable enough as we go down that road together to write legislation that both sides are confident of where were going and were fairly confident that it is going to be beneficial to the end goal, which is defending the American People. So let me just add one note. When i left prior to the fourth, after doing this now for 15 years, since 2000, i was convinced that we were going to have an incident before i came back this monday. It didnt happen. And i am convinced it did not happen because the bureau and the Intelligence Community worked like it is designed to work and you asked your folks all around the country to go on a different schedule and they did and they were on that tempo for weeks may still be there. An the fact is and the fact is we were able to thwart a lot of things early and maybe postpone things that might have happened. Your folks deserve a tremendous amount of credit. And the entire Intelligence Community does. We know this is not going away with the fourth of july. Ramadan stays vibrant for a few more weeks. There is another National Holiday and there will be a target and well pick up on some things. But we also have to recognize the fact that weve got some areas that were going to be making decisions without the information weve had in the past because of the communication tools that these folks are using. We want to be able to address this as quickly as we can so that we can return to as robust of information sharing between intelligence and Law Enforcement so that your folks feel confident they can do what they are asked to do versus just hoping that were putting on a good enough face on saturday that were scaring the enemy or the opponent that well. But you deserve a tremendous amount of credit for the last three or four weeks the bureau has defended the American People, and for that please give our regards to all at the bureau. With that, director thank you for being here. Sorry you had to pull a doubleheader today but you are a strong guy and hopefully your achilles is still there. This hearing is adjourned. [ hearing adjourned ] the republican president ial candidates are in manchester New Hampshire, for the first president ial forum. On monday at 7 00 p. M. Eastern, the road to the white house is providing live coverage of the two hour forum on cspan, cspan radio and cspan. Org. The New Hampshire leader and the early caucus and primary states are sponsoring this forum for the republican candidates to answer questions from voters. And following the live forum, you can provide your input by joining the callin program by adding commenting on facebook and twitter. Road to the white house 2016 on cspan cspan radio and cspan. Org. Earlier today the Senate Approved a longterm highway bill with three years ever funding for roads bridges and railways and sent the measure on to the house where it is unlikely to pass. The house did not pass it before it left for recess. The 6534 vote set the stages in fall over how to address longterm infrastructure needs while trying to avoid a government shut down on october 1st. White House Press Secretary josh earnest talked about this during todays briefing. All right. Good afternoon, everybody. Nice to see you all. If youll indulge me i have a statement at the top before we go to your questions. You have often heard me stand at this podium and express some frustration about the tendency of House Republicans to wait until the last minute before doing something. We had these conversations when we were talking about the funding for the department of homeland security, when we talked about the need to confirm the president s nominee for attorney general or making sure our intelligence professionals have the tools they need to keep us safe. Time and again republicans have waited until the very last minute and in some cases even past the last minute before acting. Well the good news is that last night they finally agreed to do something ahead of schedule. Unfortunately the thing they decided to do is to start their august recess. Now setting aside that the socalled august recess is poorly named. It starts at the end of july and lasts until september. District work period. House republicans have skipped down and started vacation even though they have a lot of work to do. First they left town without authorizing the import export bank. This is work they failed to do before the last vacation. And it is the fir time in history that the authorization for the bank lapsed. Even though it enjoyed jong bipartisan suppose strong bipartisan support. Thousands of strong and medium sized businesses will spend the rest of the summer with a disadvantage as they try to do business overseas. Second House Republicans kicked the can down the road again on the transportation bill. The repeated shortterm extension theyve used dozens of times makes it hard for local officials to coordinate the planning and funding for large and multiyear Infrastructure Projects when they are only funded for one or two or three months at a time. That means that our economy and our workers are missing out. Finally, despite having been in session since january republicans in congress will return in september without a path ford on a stalled budget process even though the deadline to keep the government open is a mere three weeks away. That is right. Republican readers who wrote an op ed vowing to get Congress Moving again and vowing never to shut down the government again will be a few weeks away from doing it for a second time in two years. Republican leaders steadfastly refuse to sit down and work with the democrats and the president to who laid out a proposal and ready for Common Ground on the issues and most importantly make sure we are focused on investing in our economy and national security. So i do hope that republicans will do more tan just rest and relax during the 39day vacation because when they do finally show up again in september, there wont be a lot of patience or a lot of sympathy for the claim they dont have time to do their job. Next, a forum focusing on alzheimers disease. Panelists explore the form of dementia and how it impacks impacts the elderly and the costs associated with care. Susan colin and senator dick durbin urged a better role for the government in treatment research. Good morning, everyone. I am margaret low smith, im the president of atlantic live, the Live Events Division of the atlantic and im delighted to welcome you here for alzheimers the cost of caring caring. Were here to talk about something that steals language and memory and someone we once knew. One in three people over the age of 65 dies of dementia so we know the impact is massive, impacting family and friends too. How many people in this room have a parent or have had a parent or loved one with alzheimers . I see very few hands not up. And i think it is not surprising that i have my own story too. My late father was a theoretical physicist and he led a life of the mind and in the end had profound dementia and we watched his mind betray him. I remember he was trying to get into a assisted living facility and he had to take a test and the test was can you name three animals and he could only come up with the name of insects. It was ant spider fly. It was a painful moment for all of us. In the end he could barely feed himself and barely talk. So we all know it is costly emotionally and financially. Some estimates say that alzheimers cost americans more than 200 billion a year. That is 200 billion. So this morning were going to hear from people in the front lines of the disease, from researchers working to find new treatments to Family Members figuring out how to care for relatives and from two senators trying to coordinate the National Response to alzheimers. A few notes before we get rolling. Were on twitter at atlantic under score live. Join the conversation using the hashtag atlantic underscore alz. And were streaming at atlantic. Com live. Were taking your questions after most of the sessions. And importantly, i want to thank our underwriter who made this mornings conversation possible. The Alzheimers Association. And now were going to hear a little bit about the associations work from the president and ceo harry johns and here to lead the conference is the coanchor the pbs news hour judy woodruff. Judy, the floor is yours. Thank you. Thank you, margaret. Im delighted to be here for this important conversation and really pleased to be able to have this discussion with harry johns. Weve just been chatting about this. I want to say that i too i was listening to margaret. I have a personal connection. A close cousin whose wife has been diagnosed for a couple of years and ive seen perhaps as all of you have, perhaps the physical and the emotional and the personal toll this can take. And i want to launch right in with you harry johns and ask about the role of the Alzheimers Association. How does the association fit into this big alzheimers picture . We practically every day pick up the newspaper or look online and there another article or maybe another Promising Development out there about alzheimers. How does your Organization Fit into all of this . Well Alzheimers Association is the leading nonprofit entity in the world in Alzheimers Research, care and support. Here in the United States, we provide care and support to individuals 24 hours a day. 365 days a year because as youve indicated the devastation to the families as well as the individual is so great. They need that kind of support each and every day. And then were dedicated to ultimately ending the disease so well no longer have to provide that kind of support to people. So Thomas Reuters has recognized us as the highest impact resource organization. And on profit world around the globe. And third only behind the federal government and the chinese government. So we work hard to Fund Research but we also work hard with people here in this city, inside of the beltway to do the Public Policy that will ultimately allow the change in the course of the disease. There are 5 Million People in america with this disease and 15 million caregivers, 47 Million People worldwide. The scale of the impact of the disease is just staggering. You just heard 226 billion a year in cost for care alone and that is going to go up to 1. 1 trillion 1. 1 trillion by the middle of the century, just over a generation, if we cant change the course. How does the you said you talked about the research that the association sponsors. How does that work . Do you employ the scientist . What is your relationship with the scientists, the money you raise, how does it get to them for their work . We fund globally. So we have a group of researchers around the world 6,000 of them, that help us identify the very best projects. They the scientists are not on our staff but we have access to the very best scientists around the world. I think you know, right now the reason were here is were running the Largest Research meeting in the world. We move it around to locations around the world. So we have researchers here from everywhere who are working everyday on this problem. So we not only directly fund as well as try to move Public Policy to increase funding that is so badly needed but we also convene to glan collaboration around gain collaboration around the world on the latest that is happening so we dont lose what is the advance of that communication. This meeting used to occur every two years and weve moved it annual because that exchange among the scientists is so valuable and so productive. Is research the only thing that the association is focused on . No. In terms of care and support, in every Community Around the United States, we have chapters who make a difference in peoples lives every day because of the very kind of thing that youve experienced yourself. My own mother had this disease. So ive seen it up close. And my wifes mother just died with the disease within the last several weeks actually. So i too have seen it up close. Im sorry. I appreciate that. So again 15 million caregivers right now who need the help. And all of that is set to triple by the middle of the century again if we dont change the course. So those people need the help every day. How do you know at any given time and i want to ask you about the fundraising and the support that you have to get from this government and other governments. But how do you know which research to focus on . There have to be so many promising, smart young scientists out there that say i have an idea and how do you decide . The first thing that is absolutely true i dont. I dont know. Im not a scientist. But again we have access to the very best scientists around the world. At this meeting we have about 4500 people, most of them scientists, and again many of those people work with us on an ongoing basis. When we get applications for projects or applications for funding, we have thousands of people around the world who help us choose those projects, along with what is a medical and Scientific Advisory council made up of people at the top of their field. So we can look at a project on any kind of vertical basis and have experts from around the world to take a look at that to see what they think is the most promising. We have for years and years at the association funded what is the cuttingedge of research when others wont. When others havent been able to. What is an example of that . Well we funded Technology Early on about a decade ago, that identified the plaque youve heard about the plaques and tangles of alzheimers, the hallmarks of the disease and we funded research when no one else would back at that time period that has now changed the field of Alzheimers Research. That identification of the plaque has led us to know now that those plaques accumulate as much as 20 years in advance of the symptoms occurring. So the thinking in the field today, very different than it was just a few years ago is that we must intervene in advance of the symptoms. And if we can do that we can potentially slow or even stop the progression. If we could slow the progression by five years, we could cut the impact in half. Both the human devastation and the cost that are so devastating already. But my understanding is you are still i dont mean you personally but the field is still a distance away from being able to do that . We are a distance away potentially from ultimately realizing the ambition of the Alzheimers Association. Our vision is a World Without alzheimers. Were a distance from that. But again im not a scientist. But the way i read the situation is we are within a reasonable period a few years of seeing what would be the initial treatments. We have treatments today that dont actually change the underlying course of the disease. But i believe were a few years from seeing the initial treatments but it will take years to develop what will be the sufficient treatments. Not unlike hypertension or aids it will more likely be a cocktail. The disease is heterogenerous so it is not one drug or Silver Bullet to fix this. So you are talking in the nearer term slowing the onset and slowing the progression. If, in fact we can see a drug that has clinical effect, then the potential there are a number of prevention trials now underway. Im proud to say the association was an early funder of those to get those started and they wouldnt be possible without the technology i mentioned. So those prevention trials have the potential to do exactly what were discussing, which is to slow or stop progression. So when you make the argument as you do to members of congress to those who have the ability to determine how much support youre going to get from the government, which has to be the biggest source of support. Absolutely. What is the argument you make . There are so many other important causes out there that effect peoples wellbeing and yes, alzheimers effects people but how do you make that argument. I worked in cancer for many years and im proud to say we worked hard. And twothirds of Cancer Patients are cured. And at the cancer institute. So cancer funding is high for many years and weve seen the results. We funded hiv aids for years and weve seen the results chronic disease today. Heart disease and mortality down. All of the diseases have mortality rate down as a result of in vestments made in the past. In alzheimers disease, we have what is a triple threat. There is really nothing else like it in terms of the impact that has so little done about it at the federal level. It is huge prevalence and growing. It has huge costs and growing. And it is the only one of all of the leading causes of death in america that has no way to stop it prevent it or even slow it down. So the investments today until just recently it was about 400 million being invested in Alzheimers Research even though it is costing 226 billion annually going up to 1. 1 trillion with a t. So members of congress and i have to give credit to the leaders in Congress Chairman cole and his committee in the house and chairman blunt and Ranking Member murray and that committee in the senate and those leaders in the congress that have stepped up for 350 Million Investment in the appropriations, yet to be approved. Still not approved. We need to see that signed in law. Those are big advancements if we can see them. But we believe that the Alzheimers Association convened a Science Group and that group believed we need to reach 2 billion. 2 billion annually. Yes. And right now were only up to 600 million. So the underfunding of Alzheimers Research has a direct impact on what is the failure of the change in the course of the disease unlike what weve seen in cancer, hiv aids Heart Disease. There is a clear correlation between making the Research Investments and seeing the mortality rates go down. Is there an alternative if you dont get the federal government funding that you need . Is there anything in the private sector to rival what the government the federal government potentially has the ability to do . Well the Alzheimers Association again funds directly. Were about to initiate a Research Effort on our own to raise our level of funding of this to a higher plain. From private givers. From private givers. But it is impossible in any disease to not have the strong investment of the federal government. Because there is a an enterprise if you will, a nonprofit organizations, like ours the federal government, and the private sector. It takes all three sectors to make it work. If you look at the gains that have been made in cancer, Heart Disease, aids again, all of those situations require all three sectors to make it happen. But im thinking im thinking of you sitting down in the office of a member of congress or the office of a senator, what are you saying to them . Because they must know. Theyve seen the statistics and they know the number. And they are being asked by cancer, heart you name it hiv to support us. And not to mention the enormous array of other good causes out there. Well youve rightly anticipated what has occurred. I have been in that situation. You are correct. You know it has taken some time for people to understand thoroughly what is the impact here. But what we see today you know, one of the things that has happened that is important to this either the Alzheimers Association also has made a huge effort at getting the American Public to realize the impact of the disease. If you take a look at what is happened again in cancer or aids or any other cause, the first has to be a discussion in the American Public about the issue. When i came to the organization, there was not discussion about alzheimers. It was pretty much taboo. So weve raised that discussion. Im proud to saz the Alzheimers Association really pushed the discussion thanks to help from you and your colleagues talking about things in the media. Weve worked for media very hard. We fund advertising about this issue, to get the word out. Years ago cancer wasnt discussed. Once the discussion came to the public attention once it was important to the public things changed. Funding for research changed at the private level at the public level, when Research Funding changed, cancer changed. And we have a lot to do in cancer. Twothirds of the people being cured is way beyond where we are in alzheimers. Every person who gets an alzheimers diagnosis will die with it or of it today. And many people dont realize that it is a leading cause of death. Many people dont realize that alzheimers is itself a cause of death. But sixth leading cause of death based upon cdc statistics and beyond that, again, years ago in cancer, way underreported, and still true in alzheimers today. We just did a survey that showed that 45 of the people who have a diagnosis know they have it. The docs dont tell them. It is unimaginable is that right that many dont know. That many dont know. Half arent diagnosed to start with and half that are diagnosed arent told. That echoes what happened in cancer. So again the public discussion is a huge part of driving the answer to your question about having members of Congress Step up on this. And ive seen members of congress now in the past couple of years, last few years really step up on this and see what needs to be done. On both sides of the aisle, a bipartisan effort. And i will say too that another part of that is leadership from the top. You know there are about 20, give or take, president ial candidates right now 21, as of today. There you go. So each one of those candidates has an opportunity to be the first president to embrace this issue. It has not yet truly been done so any one of those people, all of them as far as im concerned, i would hope they would all embrace the issue because there is leadership opportunity here both in the congress and for the president instead of the sixth leading cause of death. It is more likely higher. The most recent Study Released indicates that instead its probably about 500,000 people a year who die at least as a result of this disease. How important, then . I know there are still people who believe who are ashamed embarrassed to talk about a Family Member with alzheimers. Its still very delicate. How do you change that . Because it sounds like thats an important part of the story. It is. We continue to try to raise the discussion to reduce stigma, and i believe weve come a long way, just sunday here at our conference, we hosted a session of people who have a really rare form of the disease. The genetic form of the disease which is absolute. If they have the gene mutation, they will get the disease and thats only 1 of all incidents and all prevalence but to see those people together, to come to that meeting together and to talk about that and to be public about it is the kind of thing that can truly change the discussion and the stigma. I give them great credit and anyone who has a diagnosis and anyone who has a diagnosis and their caregivers who step up to talk about this have the single greatest effect on answering the issue youve raised. Im being given time cues, and i cant read it to save my life. Its over there in the dark. Is it finished . All right. Any last thought you want to leave everybody with . I appreciate anyone who is helping us advance this. It takes a huge team, fort to do so, and i particularly thing the leaders in congress who are stepping up on this even if those appropriations go through. Weve still got to get it much higher, and if we make those investments, the science is promising enough that we can change the course of this disease just as weve changed the course of others. It can happen. It can be done, we just have to invest to see it through. Thank you very much. Thank you. I appreciate it. Thank you. [ applause ] thank you, judy and thank you, harry, for that excellent beginning. As we just heard from harry johns of the top ten diseases that take the most american lives, alzheimers is the only one without a viable treatment of any kind. So finding one will take enormous scientific and Financial Resources from multiple spheres. So with the budget stretching to keep up with the cost of care and the cost of research, where should the money be going . Here to address this vital dressing is dr. Richard mose a distinguished fellow at eli lilly and theyre joined by atlantic contributing editor, Mary Louise Kelly mary louise, take it away. Thank you. Good morning, everybody. So were going to be throwing a lot of facts and figures at you all this morning and im going to focus our next session on one that we just heard in the last conversation, and its this, that alzheimers is the sixth leading cause of death for americans. Of the top ten it is the only one with no way to prevent it, no way to slow it down no way to stop it from developing in the first place. So were joined by a great panel to talk about this and lori ryan and richard mose and i would like to throw this question to both of you. The big, wideopen question, lori, maybe start with you. Why has alzheimers proven so tough to crack . Alzheimers is a very complex disease and thats one of the things that weve discovered over the last decade is that theres multiple different risks that get you to alzheimers at the end of the day and your risk might be different than mine. Mine might be cardiovascular and yours might be genetic so trying to untangle all of that has proven very difficult and its likely that were going to need treatments that are probably going to be different for different individuals and a little more of the Precision Medicine is what youve heard from cancer and things like that and ultimately trying to identify what the risk factors are and in trying to actually attack those for different people. But that would also be true, obviously, of cancer although you dont fully understand but there are many drugs on the market. Cancer started before if you think about the war on cancer, it started in the 1970s. So alzheimers the program that the nia fund started in the mid80s been so were a bit behind in terms of where we had the Research Effort. The Scientific Community. So the real focus has come a little bit later than it started with cancer, i think. This is something that eli lilly have been focused on since the 70s. Yes. Its important to understand that until relatively recently many people didnt think of alzheimers as a disease. Alzheimers original patient was a lady that had a very young onset and of course, when it happens in the 50s or 40s people clearly identified it as a disease, but for a lot of people including in the medical community and probably until the late 70s or 80s thought this was an inevitable process of normal ageing and there was no way to intervene there, but beginning in the 70s and the 80s we begin to understand that it has a specific pathology and there is a biochemical abnormality that goes on and there are certain high risk groups that have genetic abnormalities and that opened up an opportunity for a company like lilly to develop a pharmacology that would intervene and slow that process which in some people is clearly abnormal. So weve been late to the game, but now we have the tools and the scientific basis that accompanies Companies Like lilly to think that we could have a medical impact on this disease that would be real and meaningful for patients. We were talking in the period in the 70s and 80s when finally research and attention started flowing in. Drug after drug after drug looked promising in the early stages and failed in Clinical Trials and in some cases was shown to accelerate alzheimers. Is the basic issue i mean, we know we have some insight into what causes alzheimers. Its plaques that form in the brain and choke off neurons and they also attack harmful functions and thats what were constantly grappling here. I think in the case that i was responsible which we thought was promising and was found to actually make patients worse that was the results of those studies have been published and a couple of things about that. One is what we now believe was the drug was having effects which we didnt understand when we introduced it in the patient and those were causing adverse events and its important to understand when we go into a new area that as lori mention side highly complex. We have to learn as we go along and each new effort to develop an intervention that goes into patients that has a specific effect effect. If it doesnt work that closes that avenue off and directs our efforts toward Something Else and over time we get better and i think what were seeing now is were beginning to see a few compounds that have fairly specific effects that seem to be positive, and im sure that will ultimately lead to better efforts to go in that pathway and find complimentary things, so i dont think we should view failures really, as failures of the scientific process. The process is working. Its moving us in the right direction, but well have dead ends along the way that well have to work through. I totally agree. Absolutely. We learn from the trials and theyre not failed trials if we can understand why things didnt work and yet pathology is and things that we didnt know before. Absolutely. We have to test the drugs and this is the way it has to be and it has to be a systematic process and thats the way science works and everybody would like things to happen very, very fast and unfortunately, we have to do Due Diligence in the drugs. Bring us up to speed on what the landscape looks like now because we are hearing what may be the glimmers of promise that we are maybe turning a corner. Give us a sense on what are the most promising things in development right now . At the nih, we fund both basic science and we allow the basic work that goes into the discovery process and we do fund some trials and things and we partner a lot with Companies Like lily that we are cofunding some of the trials and trying to leverage our resources and there is a large landscape at the nih that we look at so the lily drugs are certainly one piece and theyre very exciting, i think, now because we realize that we do have to go earlier as you heard harry say in the other segment that you have to go earlier and other changes occur in a decade or more. Part of whats going on with these drugs now is that theyre going into presymptomatic and people that have high levels in the brain or genetic risk who do not have dementia currently and if you intervene can we slow the process . That is very exciting to be able to go earlier, until we had the pet scans, we were not able to see these changes occurring early. So now we have ways to actually identify it earlier so its been very helpful and these trials that are being looking at presymptomatic disease are important and will be materieling us if we can have an effect. Flush this out a little bit for us. I think the abetarelated compounds are the most advanced and they come from a lot of work that was support by the nih and private funders that identified the biochemical pathways that lead to the amyloid plaques and so the pharmacology around that largely comes from the pharmaceutical industry and its building upon those advances and those are kind of the leading edge. Along with that, we developed these tools that helped us identify people as harry mentioned way before they developed symptoms. 10 15 years. Its like if you get ath ro sclerotic plaques and a long time before you get dementia. That looks like we need to move those Clinical Trials earlier. So were learning on the diagnostic side and the therapeutic side and beyond that we have other aspects of the pathology of alzheimers disease which are far well understood and that includes the tangles that grow within neurons. There is apoe which is one of the risk factors and no pharmacology around that, and i assume that over time well develop other approaches to this disease that will improve it. Let me stop you for a minute on this idea of testing people. Any of the three of us could be 10 or 15 years of being symptomatic of alzheimers. Specifically, what kind of tests are we talking that youre working on . I was reading a headline this morning. Saliva tests may look promising in terms of starting to identify genetic markers . I think as we were mentioning, the pet scan has been a turning point which we can image amyloid in the brain. Yes, were looking for things that are less invasive and thats much more difficult and we can see amyloid build up in the brain early on and we can scan people and because we have highlevel amyloid is at risk and youre not necessarily going to get alzheimers. Those are the individuals that are going into the a4 trial. Older adults and high levels of amyloid that are cognitively normal and they dont have dementia. Can you get in there for someone who has the drug like lily does and see if we can slow that into dementia. The idea that these tests could somewhere down the road become a part of an annual physical . Do you test everybody . Is that the goal . Think there is a lot of discussion. The best test, the one that convinces people the most is as lori mentioned, the brain scan that detects amyloid. What we used to only be able to do after the person died and see the pathology of the disease. The trouble with that is its sort of invasive and pretty expensive and im not sure anybody would want to do that and there are a lot of efforts ongoing to find less invasive and less expensive ways of identifying people who might be candidates so that you dont overuse those sorts of skins and there is a lot of work of that sort going on with blood tests or cognitive screens that would be helpful. Yes. Do as you look at the spectrum drugs and possibility of research out there is it correct to say were not likely to come up with some miracle drug Silver Bullet with this that alzheimers as you mention side a complicated disease, slowing it will involve all kinds of different therapies that may be different from patient to patient. Amyloid as richard mention side one of the main players and there are other adjunctive pieces and we know, for example, ill touch on lifestyle interventions that dont cure and prevent alzheimers, but they can certainly help you and delay when you might get a disease. Having a healthy diet and healthy life. Thats what we can sort of do for people now and look at these other potential disease targets and theres not pharmacology now in terms of drugs but people are looking at these novel targets and looking at ways we can intervene and theyll be unique characteristics with different risk profiles for different individuals and that means youll get maybe a different set of drugs or recommendations, interventions for you that i might not get. As you look at the landscape and youre trying to figure out the nih and who to partner with and where to prioritize funding dollars. How do you distinguish in terms of prioritizing a drug that will prevents alzheimers or slow it . The way the nih funds is we have a strict process and application comes in for funding and they get reviewed by peers and the Research Community and based on how they score, nih can make funding decisions and we have the benefit of having the input from the Research Community to help make those decisions and see where things look the most promising and we utilize that information and obviously, a lot of what nih does is basic research and we do the translational moving from the basic sky tones identifying new targets to get us into early stage, maybe Clinical Development and clinical intervention and we do run the whole gamut but a lot of where the bulk of the money goes and other people use like the pharmaceutical companies to take it further. To look at where the future might go. This is a complex disease and i dont think well have one treatment that will satisfy all, but as we move toward treatments that would slow the underlying pathology of the disease. Once those would be introduced in combination with lifestyle things that may also have a key role to play just like in diabetes you have the drugs and you also have to keep your lifestyle in check et cetera. What we would see from a Public Health point of view is down the road. I dont think well see the disease disappear, at least not in my lifetime, but what we would hope to see is the risk for people at a given age for actually developing dementia and the accompanying disability will start to go down. The way we see rates of heart attack and stroke have gone down with the better cholesterol and Blood Pressure and so forth. And foreign minister im hearing you correctly, it sounds as though one of the things thats really changed in the last few years is rec be onning mission of the importance of Early Detection and early treatment. We are seeing glimmers of promise and maybe there is some that when we hold this conference two years from now well be able to say there is a drug that helps prevent it. Is there an early detention thats been the pivotal change . This has been incredibly important. We always talked about the mantra of Early Detection, but the work of say the diane study which are these people who have the genetically determined form of the disease where with those people we know now with absolute certainty that the pathology begins 15 or more years before they actually develop symptoms and weve been able to map out that trajectory in the courageous families where the disease is determined by a single gene mutation and it turns out that thats probably the case in the more garden variety disease and that just provides absolute certainty based on data that that is where we need to go. Has it been a challenge finding enough people to sign up for the trials . People who are relatively young and not showing these symptoms . Yeah. Its harder because we have to screen a lot of people to identify people who are at risk, but youd be surprised. People are very worried about alzheimers disease and people are very fearful of it and you can understand why. Its not that you end up something that will cause death, but causes great disability and burden for the participant the person and also the Family Members. So people are worried and people are very anxious to actually participate. Weve been very encouraged by that and its just that the screening process has been intense for these prevention trials and making sure we do have people that have that level of risk. Its challenging, but heartening that people are interested in volunteering and we cant do it without the volunteers. Absolutely not without the volunteers in the families and theyre critical. When you talk to people as weve seen with many people in this room, as youve watched a relative go through the disease. Its a great motivator to not want that to happen to your children or whatever. Right. That is what really gets peoples interest and you see in families where theyve had two or three cases in the same family oftentimes theres fear with the family as to what will happen down the road and its a great motivator to get people interested in the Clinical Trial and to support what the nia is doing. One thing i want to touch on briefly is that alzheimers occurs in a greater rate in women than in men, a greater rate in the africanamerican population than white. How does is that helpful as you are not helpful obviously in terms of people getting it, but helpful as you try to identify what is going to stop this to be able to study those different populations that it manifests itself differently . Its critical to understand the different groups and the populations and things we dont. We know one of the reasons for women is women live longer and theres research to suggest that theyre not necessarily the only factor thats going on with women and with people, africanamericans and hispanics and some are related to Health Disparities and whether or not your cardiovascular disease has been taken care of. So its critically important to understand whats happening with diverse populations, as well. It is critical to understanding the disease, for sure. Weve been talking about priorities. Talk to me about the priorities. Are we getting the funding right in terms of finding a cure, and there is a flip side from the federal governments point of view . At the nih our total focus is on research and our mission is Public Health and finding ways to intervene or basic science and doing Clinical Trials and theyll advance Public Health. We come at it from a different perspective and different aspects of the federal government have other challenges so for us it is a Research Mission and we have to realize that but equally care is also extremely important and people mentioned Family Members. My father has alzheimers disease and hes 92 now and hes still doing pretty well, so its a challenge. I have it on a personal level and im also his primary caregiver and i can certainly see the challenges of caring. Both aspects are critically important and it is a challenge where to strike the balance but luckily, we have a lot of good people in policy that are trying to figure that out. Look, since i work in a forprofit company, we try to identify areas where there is a high unmet medical need where you can imagine that theres going to be a medicine that we can produce there so our focus is on the medicines and the diagnostic tools to go with them, and were well aware from the Clinical Trials and if there are arents appropriate incentives for them to make the diagnosis and the care giving systems in place for families to take care of these patient the medicines will never be used so all of that has to go together. I would love to open it up to questions now, if you put your hand up i think we have a mike in the back. Anybody with a question of where the research is going and in terms of different tests and early phases . Yes, maam and right here in the front and wait one second while we bring the microphone to you. Thank you for coming here today and my question has to do with the misdiagnosis offal ziemers in patients. Can you comment on that that sometimes many brain strokes wipe out any tissues and then doctors just characterizing this as alzheimers and im just trying to could how we can better understand that diagnosis. Dementia which is progressive over time and alzheimers time which is dementia in the context of a particular kind of biological abnormality. Now good clinicians and probably dont have as many as we need and they can usually get it right, and there are a lot of times when the clinical picture is not very clear and you can make two kinds of errors and one is we dont want to make an error where we diagnose someone as being democrated and its normal forgetfulness and thats a bad thing. And you dont want to misdiagnose someone as alzheimers disease where they have other conditions and multiple strokes and i think the new diagnostic tools that are being developed like the pet scans that are forcing us to make advances there. And its still an area of some concern. We heard from harry johns articulately some of the work thats being done and here in town and around the world in this disease and this is an ideas forum, i would like your thoughts on whats the biggest shortage right now. Ideas or funding . Well ill try to take that. I think weve moved into an era where we have a lot of good ideas. I work for a company that we have to make a profit. We have shareholders and we wont go into an area where we think the possibility of producing a medicine and we have, in my company we have plenty of people working on diabetes and cancer and Heart Disease. They all think they have great ideas and theyd like to take the money and have it spent there, but we tend to win some of those arguments and we kept the company in the business for 27 years. Im not a fan of just throwing money at things where it cant be well spent, but i think if you looked into the nias portfolio or the portfolio of grants that the Alzheimers Association has and there is a lot of productive science that is currently not funded. I want to follow up on that. You mentioned a couple of times you worked at a forprofit company. How much is the first drug that works thats shown to prevent alzheimers or at least slow its progression. How is that worth . I actually have i actually dont work in that part of the business. I dont know which. You dont want to do share prices. I think we have to assume something, otherwise, we spent a lot of time and i might have to look for another job. If you look at other therapeutic areas that have blossomed once the path is worn. If you look for example say at depression, once that path was found that you could treat depression, lots of Companies Develop them and eventually theyre almost now developed and if you looked at Heart Disease and once they found out that cholesterol was a big risk factor and lots of drugs raise hdl, et cetera and most of those are generic and theyre looking for the next thing to up the game and thats the way i think its going to go. I think there has to be to Keep Companies involved there has to be some reward and in other words, we have to be willing to pay for new thing, but thats how we get generics in the end is you get new things and they live to their end and you have to develop something new. Another question. Youve got one in the back . If well come to you next. My question relates to the research being done and we talked about Clinical Trials and most of them are focused on testing drugs and im wondering when you talk about lifestyle day and other things why dont we see more studies that are focused in changes and lifestyle particularly with children of people with alzheimers and others who are trying to look at how not to get it and it seems like theyre testing different types of drugs. I can take that and obviously for lifestyle interventions theyre not profitable for a company and you cant patent that, but the nih does support and we have a number of trials and theyre listed in clinicaltrials. Gov and the nias has an alzheimers information web page. You can find it and we are supporting a number of trials and we look at both diet ear interventions and cognitive training as well as exercise. So we are absolutely very interested in that and we dont think thats necessarily going to be the thing thats going to stop or slow progression and its something that well need to add to whatever were doing with drugs or individuals. As richard said, lifestyle is extremely important for cardiovascular risk, diet and exercise. Is there any research that shows how much of a different specific toal intriemers . No. Theres a lot of work thats been done with animals that suggest that. There are a lot of observational studies that people who live a healthy lifestyle, and it seems that their age onset is much later and theres the observational studies which is why we have to do the Clinical Trials and they actually are under way. And looking for volunteers, i might add. Step on up. I think we had a question right there. This lady in the gray suit if we can get a microphone here. Thank you. You mentioned cardiovascular disease a couple of times. Is there a relationship between the disease and alzheimers . Yeah, well its not quite clear and there are vascular changes in the brain that can cause small strokes that can contribute to dementia and the brain like any organ can have multiple kinds of pathology so we often see people who have some cerebral vascular damage and alzheimers disease as well but i think lori may know this better than i. The connection between the two is not very well established, but you also see things like amyloid deposit and around vessels and we really dont understand that aspect of the disease nearly as well as we should. Theres data that says there is a risk factor with dementia and as well as there are people trying to understand that there is an amyloid pathology and dieb eat eatyies is a risk and they may allow you to live longer without having a dementia and those are lifestyle factors that we can do something about. You cant do anything about your genetics but you can make sure youre eating a healthy diet and thats easier said than done and im not exercising nearly as much as i should, that i know. There are risk factors for sure and were not saying that if you exercise you wont get dementia but you will extend your healthy period as you age. Another question. Yes, maam right here. Bob moreno, Alzheimers Association and Alzheimers Impact Movement and thank you for the dialogue and forgive me, i might be putting you on the spot. The discussion seems to have turned it a path over the past couple of years, emphasizing so much on the early end of things intervening early and getting therapeutics to folks before theyre symptomattic and is there still a pathway . Are there still therapeutics being looked at for those who are already afflicted and something to offer families who are already dealing with this which clearly is an elusive target and been a difficult target. And ill start because obviously, i think youre right and i dont want people to think were not interested in individuals who will have the disease and will be getting it because that will continue and so we and we have funding and companies that are intervening at later stages when someone has either mild Cognitive Impairment which is the stage before you get fullblown dementia or dementia and there are treatments and theyre looking at the behavioral symptoms and the disease like agitation and psychosis and the neuropsychiatric symptoms and even some, were looking at basically regeneration and is there a way to actually have, you know cells regrow. So there are a lot of things going on that are still looking at late stages and its important and if we can get something to prevent that will be terrific and its going to help a lot of people and well still help people who get disease and the research is ongoing across the whole disease continuum. Absolutely. Thank you for asking that. Thats very important. As scientists continue to refine drugs that will hopefully prevent it. And our greatgrandchildren will never know anybody with alzheimers. Someone who is five years six years, after the diagnoseis of alzheimers. Are you looking at a different category of pharmaceuticals. You can talk about the way these drugs were first tested. I think loris point is quite right. Even if we can slow the progression of the disease and actually prevent its occurrence and just given the demographics, theyll need treatment and there is work ongoing to try to augment or refine or make better the inhibitors that are not part of the treatment and other transmitter approaches and i think its further down the line, and i do think there is a possibility that if we could slow the degenerative process, the brain still has a capacity for regeneration, and people do regenerate and we grow new synapses. Thats how we know the synapses grow and if they could be restored we can imagine down the road and we could get some recovery in patients where the disease has taken hold and if you stop the bad part and augment the good part you could get some recovery and we know this is an important avenue to pursue as well as the prevention. Yes, maam. I had the opportunity to attend the alzheimers set nih in february. I wonder coming out of that, what steps you see important to take in terms of diversifying the participants in trials given the effect on particular population sectors of the disease. Thats an excellent question and Companies Struggle with that, as well and how do we reach out and make sure we have a diverse population that people are included in trial and there are efforts under way to enhance recruitment efforts and to enhance outreach efforts and ill mention the us against alzheimers that Georges Group has, they have africanamerican network against alzheimers and theyre trying to reach out to make sure that we are including everyone in the trials and not leaving anyone out. So its very important. Just to give you an industry perspective, when we develop a new medicine we usually develop it for use around the world. We would generally not develop a medicine for anyone in the u. S. And many other countries have a requirement that in the latephase Clinical Trials we include people from those countries in our trials, japan china, european union, a couple of south american count ryes and we out of necessity have to go to those countries, but in the u. S. To get a Patient Population in your trials that is representative of the patients as a whole is an ongoing struggle as lori mentioned and its not unique to cancer trials and cardiovascular trials and its a constant struggle and were always looking for help from groups like us against alzheimers and nia and the Alzheimers Association to help broaden the Recruitment Network into Clinical Trials. Right before we came onstage we were talking about the meetings and gatherings in washington this week focused on alzheimers and richard you mentioned you were surprised at the number of people attending from japan and big numbers of people from the Scientific Community and others. Yes. Well, you know the aging of the population that we see in the u. S. Is actually even amplified and particularly some of the asian countries. Japan, korea, et cetera. So we know this from our own Clinical Trials there is a great desire to have new treatments from alzheimers disease in virtually all of the countries around the world. I was just impressed as i walked through the poster sessions at aaic how many of the posters were researchers from korea thailand china, japan, et cetera, who were coming here to washington to share their knowledge and their perspective on the disease. Its a global disease, for sure. Its not affecting western countries. I want to throw one more question in here which is in terms of having a National Plan and harnessing all of the different groups working on this from the Research Community to big pharma to universities government et cetera. Three years ago, the Obama Administration released a National Plan to address alzheimers and the goal was struck me as exceedingly ambitious. By 2025 so in ten years to be able to prevent and effectively treat alzheimers disease. Does that strike you both as realistic . Ten years . The way we look at it its an aspirational goal. We absolutely want to be there by 2025, and i think the entire Research Community and its an aspirational goal, the goal by 2017. Okay. Let me just say, it has to be realistic as well as aspirational and yes, we know thats a short time line as one of the summit participants said in Drug Discovery and thats day after tomorrow and so we understand that its really going to require a push and i do think theres a lot of momentum as we heard harry talk about from both the policymakers and the appropriators that this is important and that we need to put the dollars for the research and we do have to have the funding to do the research and everyone gets it and we need to get there by 2025 and were striving to get there. The Time Development is longer than we would like it to be and its just part of nature you know . Its about 15 to 20 years from where a compound is first synthesized because it has to go through lots of steps but i think there are things in the pipeline now that are being tested that they wont cure the disease, but if they slow the progression for a few people thats essentially a cure. If you take somebody who is 70 years old and would have normally gotten the disease and you can push it out ten years. Thats almost a cure for many of those folks, and i think what we need to recognize is that this goal essentially is a call to action about how robust does this whole Research Enterprise have to be in order to have that steady flow of new medicines and its got to be higher than it is now. Right. Theres a lot know but its not enough to keep the steady flow. 2025 wont be the end and well still be pushing to get more treatments and thats where we want to have at least something thats going to have an effect to the underlying disease. Lori ryan, richard mose, thank you both. Thank you. [ applause ] thank you richard lori, you can stay right there. Were not going to let you go. As we keep underscoring, 5 million adults have alzheimers and 15 million are shoulder issing the burden of care and looking after the persons basic hygiene and transporting them and paying medical bills and making sure they dont wander away and get lost and funding longterm stays and all of the while watching a loved ones mind deteriorate. Its a heavy responsibility and one Dwayne Johnson has been undertaking for his 92yearold mother for more than ten years with the help of Family Members friends and neighbors and Tiffany Stanley wrote about her managing her aunts care and theyre here to talk to mary louise. Take it away. Thank you. Welcome to you both i dont know how much you were able to hear backstage and we just spent the last half hour talking about the search for a cure to alzheimers. The race for cutting edge pills, technology, early detectors and trying to figure out how you prevent someone from getting the disease and well pivot now that youve joined us to talking about i describe it as the flip side of the coin and there is the race for the cure and then there is the figuring out how you help care for people who are suffering from this disease now and how you help care for the people who are caring for the people suffering with this disease. Thank you so much. Tiffany, you have both dealt with this in your own families and i would love about some of your own stories and you wrote about this as a journalist and i wanted to use something you wrote to frame our conversation. You write and im quoting lost too often in the discussion about a cure has been a more basic, more immediate, in many ways more important question how can we better care for those who suffer from the disease, and you go on and dementia comes with staggering economic consequences and its not the drugs or medical interventions that have the biggest price tag. Its the care that dementia patients. Tiffany, if i may, lets use that as a leaping off point and the big story that you did for the national journal, you were living through this with your family. You were learning very quickly how alzheimers is covered state by state. Medicaid can help and medicare often doesnt and can you give us a sense of the landscape in terms of the care options and how much help people are getting with those. Yeah. I think when i became a caregiver it was a bit of a crash course in what to do. My dad had been taking care of my aunt for seven years and when he became too ill with the stress that comes with care giving i took over. You were 29. I was 29. Caregiver for both of them. Which is a common experience and one parent is the caregiver and the other suddenly cant do it anymore. So i was shocked that medicare and medicaid dont cover longterm care costs in the way that a lot of americans believe, and there was a poll that i quoted and 40 of americans over 40 dont realize longterm care isnt covered by medicare and we found ourselves in that middle where my aunt didnt have enough money to pay for assisted living or skilled care and she wasnt technically sick enough to qualify for skilled care so she needed nurses at home or she needed assisted living and she had more care than we could provide at home and we couldnt afford the quality care that we wanted and there werent a lot of public support. You described in the article when your aunt jackie reached age 65 you breathed a receive thinking thank god medicare would kick in and you sat there in a hospital with her and had a social worker explaining theres nothing medically wrong with her. Hang on. I think the social worker has probably given the speech tons of times and she has early onset alzheimers and the first six years were really tough financially, but now shes covered and the social worker said, you know, she needs whats called custodial care and she needs help with bathing and a sitter and she doesnt need ivs and what an rn could provide and she took me through this is what this covers and this is what this covers and im thinking were getting discharged in three days, and i have no idea what im going to do with her. Dwayne, this is something you are living with and dealing with every day. We mentioned your mother is 92. She suffers from alzheimers. Tell us her name and a little bit about her. Her name is flora hughes, i moved her, and i got a call from a trusted friend who said she needs help and i packed her up and moved her up to my place. You had another bedroom. Yes. Shes been suffering from alzheimers for ten years. What is a typical day like caring for her . What does she need . She needs minimal supervision. Its hard to tell as we were discussing earlier. We know about the different stages and how much care needs to be given. She seems like shes in stage one. I need to make sure her hygiene is taken care of and other than that she can pretty much get around pretty good. How does that work with your own work . You work a night shift. Yes. Is that because of your mother . Yes. Ill be there during the day and she also has pch services and the personal care assistance and they make sure she gets her medication and take her out every now and then. In terms of what kind of help or guidance youve gotten from various Health Agencies and the provider, tell us what the process is since youve gone through it. Early on, i thought i had to go through everything myself and my mom did qualify for d. C. Medicaid and medicaid as well which pays for the assistant to come in or she gives me a lot more time. You must have a network that helps you, too. Family, friends and church. My community. You and, for you, youve described a dramatic moment. You were trying to work full time and you lived here and your aunt was in South Carolina . Yes. Tell us about that moment when you realized shell be released from the hospital in three days and i have no idea what to do. I had an extended support network on my mothers side, and on my fathers side it was just my aunt and my dad, and i thought well this is it. This is me and i have to juggle am i going to quit my job . Am i going to move back home and something ive worked so hard to get to d. C. , to work as a journalist and you think all of that will disappear if im trying to be a fulltime caregiver. Who will pay for her needs if if i do quit my job. Its something that caregivers struggle with and if youre in the prime of life in your 40s and 50s trying to decide how to continue your career and set aside assets in your own retirement while trying to care for someone. When we were in the hospital i thought i need to get her somewhere safe, and ill figure out the money situation later but youre in survival mode and sometimes when we didnt have a big plan. I kept telling my dad we need to decide at some point, she might get too sick to keep her at home and she might get too sick for you to come back and forth from work to check on her. He was hospitalized and she was hospitalized at the same time that we have to make that decision. Youve made the decision a difficult one to put her in an assisted living facility which cost her several thousand a month if youre looking at a nursing home and a 10 watt medical care and youre just heading up in terms of cost from there. Definitely. I think one of the things i found, at least that it was hard to find quality care. The assisted living facility is a stopgap between skilled care and the first facility we based it on the price and we thought theyre saying that they have a lot of patients with dementia and we really found that she wasnt safe there and they didnt provide the level of care and it was a much more stressful situation that people talk about the roller board generation where i was in d. C. So i get a call in the middle of the night and i said my cousin or my mom or my aunt, can you go over and see if shes okay . Do i need to come home . Flying back and forth takes a toll even though youre not doing the physical labor like my dad had done before. Dwayne, tell us in terms of that youve watched your mother for ten years and helped her through this disease where are you getting information from in terms of what resources you have . In terms of knowing that there is a helper that can come in every day and keep an eye on her and make sure she takes her medicine. Have you had someone helping you coordinate. I imagine you dont have much time trying to care for her in the day and work the night shift. Thats all of the information i could by going to social services and asking what was available. Just walking into the office and saying i need help. And then i joined a support group and talking to people who had gone through the process and had cared for their loved ones through the end of their life and thats how i learned how to maneuver and get things she needed. Is there something specific that would have been useful to know ten years ago when you started this process that you now know that you didnt then. Yeah. The help is available. I thought i had to do it all myself and realized i couldnt has become too much but to start the ball rolling with Social Security with my neighbors, joining a support group, and ive learned a lot, thats a fulltime job, just keeping up. The line had me cheering for you. What i needed most in all of this as a caregiver was pretty simple. It was access to a network to help navigate the system. I dont care if its a doctor, nurse or social worker, but so im not having to take all of this on myself. I think of it in terms of what dwayne was saying and i wish my dad had known sooner to know that he really didnt have to do it by himself and that you know when you are put in that survival mode when youre trying to make the decision and you dont have time to go around the different agencies and you want a point person to say this is where you need to go. This is who you need to call and here is the person that can help with your benefits and i think too often i would hope that primary care physicians and nurses can be that stopgap, but there is a gap with their knowledge about alzheimers and resources and theyre busy and they dont have time and the primary care appointment to walk you through things. So i wish i would have been more of an advocate to find the resources. You didnt know a lot of things that were important to know. Your aunt was a vietnam war vet and had that been paid all along, that would have gone toward paying for assisted living and eventual medical care. As you both lived through this this seems like something thats not easy to address, but its a whole lot cheaper than cuttingedge pharmaceutical research in terms of where federal money is directed. Are there specific thing, you know, you talk about just having a point person would have been useful. How about for you . What would have been useful . And what will still be useful as you try to balance having your own life and having the mom that you love. I liked it more proactive. I havent asked the right question. Your mom does have dementia, heres where you need to go and what you need to do. . From your point earlier its more information without having to fight so hard. You get one Clearing House or doctors and social workers even at the hospital. I feptlt like the social worker knew but they didnt have the time to help me find the placement and it was a bit of a rush process. Questions forrom our audience. I can tell during the show of hands that during the introduction, this is something a lot of us are dealing with or have dealt with in our own families. Any questions on the caregivers perspective where the challenges are things that might be useful. Mike, coming to you right over here. Andrew carl im a professor at George Mason University where i specialize in what i call nano technology. Its exactly what it sounds like its technology for your grandma, but what were hearing is the same thing. People dont know its out there. This is important. I developed a gps shoe, the dr. Scholls thing that can locate your mom anywhere where there is gps or cellular reception and we know theres technologies that can help, and were years away from a cure. We need to know about the things that are out there in the meantime. So if we can put somebody in somebodys shoe and locate them, 60 of them wind up getting lost and the number one fear is fear of the person wandering and getting lost. Theyre spending up to as much as a Million Dollars a month on search and rescues so everybody is losing here. So i want caregivers in this audience to know that in the interim you could be looking at technologies and not just a gps shoe, stove alert, indoor sensors, robotic Medication Managers and these kinds of things and there might be questions, but i want to put it out there that these are the kinds of stuff that we need to be talking about and the next 15 years and the next 20 years and technology is one of the answers. Thank you. Great point about how a very Simple Technology like a tracker in your shoe and i can use that for my toddler as well. Multiple applications. Another question. Yes, maam. Wait one minute. We want to make sure everyone can hear your question. Its just an idea. Im just curious if there is a caregiver. Org or. Com or something website where experiences can be, you know put there with whoever the manager is or the blogger thats on there can, you know, have a list of how to proceed. When i went through cancer and certainly trying to navigate the process was just crazy by myself myself, and being a strongminded person and i manage in the end finding the navigator and it just seems so key and something i experienced with my father and if there was a way to centralize the results and by state and locality and somehow by points of call and or something. Maybe it hasnt been organized yet, but maybe it can be. Thank you. I dont know if either of you want to respond to that. I was struck by something you said. I think it rings true to so many of us and sometimes half the battlefield is knowing which questions to ask. Theres somebody out there who has the answers and when youre in the thick of it and youre juggling so many balls and trying to figure out which question to ask to get help can be a challenge in and of itself. Thats why a support group was so helpful and in talking to people who have been through the process and sharing experiences and what theyve been through. That really helped a lot. Lets see, we have a few right here. I work with homecare. Com, and i found it striking that you know, we kick off with harry talking about the business of alzheimers and we shift to the scientists who are kind of talking about whats going on in the skient inching community, but then when we talk about tools and things that are available for caregivers we have the end users up here but no one up here talking about what tools are available. Were training 2,000 caregivers just in the mid atlantic on providing Home Care Service and a third of our families are working with alzheimers and were looking for tools so that we can better train our caregivers in training with dementia and alzheimers. Alzheimers and dementia has some great things out there and theres really no place. We have staff that just search around the internet looking for the latest tools be it how to interact with people with dementia, how to create familiar and comfortable surroundings for them and all those kind of things. Im interested now or later in learning about those tools because im trying toy get them out to these people and its not as available as Everything Else out there. Specific,s in terms of tools for caregivers and educating them. Thank you. Yes, good morning. Sandra charles. As i was listening to the discussion here, several things sort of surged in my mind just by what each person mentioned. One person is talking about giving care in the home. The other person is talking about having to utilize whats out there in the longterm Care Community and some of the caregivers that we probably need to focus on as well are those who work in these facilities to see how theyre paid and how theyre trained and what level of respect there is for the jobs that they do, because if we dont, its hard to recruit people in those situations and to give the quality of care that we both expect and require at the rate at which theyre paid so thats a whole new segment that needs to be addressed and then the whole idea of a sistered living is not a very wellregulated its not regulated, really. There are regulations for steel care and not particularly for those. From the point of view, both of education awareness and funding has been mentioned for the disease as well and theres a lot to be done in those areas and you wouldnt be so surprised that medicare doesnt take care of longterm care and medicaid has been used for it, but it was not really what it was intended for. Thank you. I know thats something that you observed firsthand as you watched your aunt in assisted living and they dont have the training necessarily to deal with someone who has progressed far along with this disease. I definitely felt that the nurses and the aides that we were working with were amazing in so many ways and they were also overworked and made barely more than minimum wage, and i think it says something about our society about our most vulnerable, when you children in did i care and adults in assisted living when we pay their caregivers so little. I felt it was the Corporate Structure that had issues in not getting training and charging so much because that clearly wasnt going to the staff. So that was definitely a justice issue there that i felt very strongly about at the same time wanting her to be safe and wanting her to have adequate care. Do you feel like your mother is safe when youre not there at home . Yes, i do. But on the other hand, by keeping my mom home and having what they call a personal care assistant coming into the home each and every time one would come in, id ask them have you dealt with someone with alzheimers and dementia. A lot would say yeah but really they didnt. How do you teach a person to redirect, if my mother gets a little age at a timed about something, how do you calm them down . Theres a way to communicate with people with dementia. Tell her my moms personality, tell her something about her. Treat her as a person. As a person yeah. How do you train that . You just have to be around people. The Resources Available on caring. Com Alzheimers Organization. They have little bits and pieces about how to do it. We have time for one more question. Yes, sir. Good morning, im chris broier im the local chapter president of the local Alzheimers Association. We think we do a lot of good work in trying to reach tout people with churches and support groups and doctors offices. We pay for advertise sog that people will find us on alz. Org. But it sounds like were not doing enough or were missing it a little bit in having people find us. We are not hiding but we think that maybe we could do a better job. If you could recommend ways that we could be more helpful in being found. I thought that the Alzheimers Organization was a good source. During late night google pamgs. Its interesting to be here and navigate another state system. Things are different by state. Having to work with the resources in South Carolina. But i also felt that there wasnt one clearinghouse for these are all the Public Benefits that you are yoore entitled to. Veterans benefits medicaid but those are so state and county specific sometimes so it was hard to find that information. Ill recommend that also maybe you could reach out through the different especially in this Region Office of the aging. The county has one. And district of columbia. Maybe you can link up with them so more people would know. Tiffany stanley and duane hughes, thank you very much for sharing your experiences with us. Appreciate it. Thank you. Thank you mary louise manage tiffany, and thank you, duane. In answer to some of the questions that emerged im sitting with one of the leaders of the Alzheimers Association. And in fact, they have a 24hour hotline that is both available to people by phone, by email and whatever state youre in i think ive got this right, hooks to resources in that state or that community. So worth noting that. We keep talking about the millions of people affected whether the people with the disease, their caregivers, the hundreds of billions of dollars of cost the emotional impact is incalculable. So clearly the strain on the system is just going to get worse. Its by all accounts probably one of the foremost policy making challenges out there. So next up im really pleased we have two senators working on that challenge. Both believe a coordinated National Approach is essential. Susan collins, she chairs the Congressional Task force on alzheimers. Shell be with us in a moment. First, i want to welcome illinois democrat senator dick durbin. Hes leading the search at the National Institutes of health. Hes here to talk about what the federal government can do and joining him is the atlantics washington editor at large steve clemens. Thank you. Hi, everybody. Shake your hands like this wake up. You all look really foolish, but were going to have some fun here. I know its been a long intense and dense morning, so great to be with you. Were with one of the great political leaders in this town. Were going to be joined by one of the other great political leaders. Not political leaders policy leader, people who are thinking deeply about challenges the countrys facing and its a real honor here to be with dick durbin. Dick, i just wanted to start out, we were just talking about animal house. How many of you have seen animal house, this is the guy. So now youre graduated beyond it, youre living alone. Has anyone bought the rights to you living alone . Not yet. How is it going . No sex and violence. Well, let me just say its a different experience to be in an apartment. I think it could be fun. A story there. An atlantic cover story. Another thing in this broad subject of investment and health science, investment in making the nation a healthier place, is you more than anyone sort of took an interesting angle that i havent heard many others take which is that the lack the deficit of investment in spending actually has strategic consequences for the United States. And id like you to take us down that path. It goes back to early experience in the house when i was serving in the appropriations committee, a fellow named john porter congressman from a suburban district in illinois joined up with tom harkin and Arlen Specter set out to double the budget for the National Institutes of health. And they did it. I thought that was an extraordinary feat. I met with dr. Collins at nih, which i think is one of the best, and said, i cant promise you ill double it. What can i do . He said 5 real growth a year for ten years and ill light up the scoreboard. And let me tell you what happens if i dont. If i cant make this investment in research, if we continue to fall behind as we have in the last ten years when it comes to research at nih, i wont be able to recruit young researchers. Theyre dropping off. Theyve lost faith in the federal commitment to Biomedical Research and secondly he said, were finding that many countries around the world are going to seize the leadership, the european union, china, others, not that theres anything wrong with scientific advancement coming from other countries. We should be sharing this information. But just from a selfish point of view Biomedical Research in this country is a dramatic innovator and a dramatic force for Economic Growth not to mention what it obviously does in sparing human suffering. So i introduced the american cures act and the notion behind it very simple. 5 a year growth real growth for ten years, nih, cdc, va, department of defense. Theres another piece of this story i might as well add. I had breakfast with secretary moniz at the department of energy, and i told him this. And he said, so where do you think the folks at nih and others get the technology that they need for diagnosis . Department of energy. Turns out its obvious and right. So my companion bill the innovations act, tries to see 5 real growth in areas like the department of science, the agency for science in the department of energy. So thats what the motivation was. You mentioned china and thing of other large sort of states you see around the world that increasingly the area of r d and High Technology is considered a strategic industry, a extrastrategic investment, theyre able to amalgamate a great deal of funding and how were walking away from it. I understand the bill youre before, but i know you have confidence in your bill but i worry i remember when i worked for jeff bingham and we just seemed to be derelict in our responsibility. Turns out that if you stick with it, this is one of those amazing political issues. Ive gone to some extraordinarily conservative republican colleagues in the house and senate and said to them, test it. Go into the most conservative audience you can in your district or state and say, lets talk for a few moments about Biomedical Research and watch what happens. All the politics disappear because every single one of us knows how vulnerable we are. And our vulnerability of our family leads us to want to try to find that new drug, that new surgery, that new approach thats going to spare suffering and save lives. Theres a dollar sign at the end of this, too, but before you reach the dollar sign, its a very human element. What im finding is more and more from the conservative side of the Republican Party are joining me. Who is my cochair of the committee in the senate, lindsey graham. We have a lot of differences politically, but we come together on this. Youre going to have a guest here in Susan Collins who is one of the most exceptional senators ive ever served with. She is passionately committed to this. What we have to do any luck with ted cruz . Well, i havent given up. Havent given up. Hope springs eternal. But i really approached roy blunt, okay certifiable conservative missourian and so forth and just kept adding. Lamar alexander. Look what happened when he did his mark jum on appropriations bill. He gave a bump of 2 million to nih, which is more than 5 . Its 5 plus inflation. Pretty darn good, better than the house, but better than the president. And he did it at the expense of a lot of other good things in the bill. Dont get me wrong. Im not happy with the way he approached it, but he was sensitized by the researchers in zlous at barnes jost childrens, Washington University to the need for medical research. And i believe this crosses the spectrum. We have to reach the point where we tak