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 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. To help navigate the system. I dont care if its a doctor or nurse or social worker just someone where im not trying to take this all on myself. I wish my dad had known sooner or i wish i had done the research sooner to know that he really didnt have to do it by himself. 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 felt 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 from 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, 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. 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 think about children in day care or adults in assisted living when you pay their caregivers so little and its the Corporate Structure that had issues in not giving training and charging so much because clearly that wasnt going to the staff. 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 youre 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 strategic 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 take the research and innovation and say this is a special consideration of the United States and the future. Its not going to be subject to the same budget control rules as the other expenditures. Last night steve corn aky showed an interview about how you and he were gym buddies and turned marco rubio around on immigration and used the gym as a Hunting Ground to turn people over. Who are some of your targets that you might like to was Chuck Schumer lying . I go to the senate gym daily. He said that republicans go early and democrats go late. Yes. I tend to be thats why i try to be there first at 5 30. I go there every day for no obvious reason. A way to relieve stress. The first one there is an Orthopedic Surgeon from wyoming. We talk about these issues. And theres an opportunity there. Your guard is down when youre sweating and puffing and all the rest of this stuff. To talk about some of these issues. I have solved some big problems in the gym with my colleagues. I caught them at a vulnerable moment, you know. I think approaching this issue on a human side makes a big, big difference. Trying to get just beyond the dollars and cents and talk to people about, for instance, this organization, harry johns is here from chicago and he and i have met many times to talk about this issue, too. This is reaching into so many families across america, the alzheimers challenge. And we see whats coming. The bow wave of not only cost to the government but cost to the families and what theyre going through dealing with alzheimers and people are suffering from alzheimers. I think theres Fertile Ground here for a political coalition. Sounds great. One of the Susan Collins will be joining us midway through. She has targeted 2025 as a target date that she thinks an alzheimers treatment should be targeted calling this a Vital National issue and moving around. And you have a different approach sort of looking at prevention and treatment and more realistically by 2050. When you look legislatively and you talk to scientists, we had an incredible woman this morning. Stacey raised 217 million in the largest biomedical first round ever. When you see that amount of money coming into the private sector, alzheimers related research and Neurodegenerative Research and you look at the technology. And are we being too modest with the 2025 target . Do you think ten years out we might be able to achieve more. It was nixons war on cancer that we see a 1 decline in cancer mortality on an annual basis. Politicians like to set target dates. It gives us some way to measure how were doing. I think the honest answer is we just dont know. The honest answer. Did you see the Fortune Magazine cover story on alzheimers . I spent a lot of time in airports looking at magazines. It jumped right off the rack. It was a cover story about biojen and what they are doing and its promising two different drugs, two different approaches. But what we know is when it comes to lily, Argon National laboratory in chicago, lily virtually has a fulltime office there using the advanced photon source, trying to figure out how to match up the drug with the protein in the brain and make it work. Im a liberal arts lawyer. You can lose me in a second when you get into this conversation. But i do get it that there are certain things that we have, diagnostic tools also ncats. I cant remember what it stands for. Computing translational science operation. Theyre using that to do millions of tests that used to be unimaginable. So what im saying the pace of change and the pace of discovery is almost impossible to predict, but to set targets and hold politicians to the targets, that makes sense. Thats why i picked ten years. 5 real growth for ten years. And i dont know if thats the right number or what, but if were incentivized to move toward those targets were not going to fall off and forget our responsibility. I have heard you speak on so many different topics. Youre always passionate and have found the soft point of where legislation might make a difference whether its trade policy or technology investment. I got an email from ed markey at wired magazine. And this is going to be a little out of left field. But i cant help it. It has nothing to do with what were talking about today. Why demonstrates how a car is hacked, theres a former nsa hacker and somebody with wired magazine was driving his car at 70 Miles Per Hour and it was hacked. This is a sensational text where ed markey and Richard Blumenthal are throwing in a bill today on the auto safety act. It made me think that in your world to sustain interest in any one topic must be so hard. We have a lot of folks here today not only in this room but in washington coming to sort of elevate the broader discussion on whats going on with Alzheimers Research in this area. But tomorrow its hacking a car. The next day its another thing. Im interested from a legislative or inside, what advice or counsel do you have for people who have been struggling for decades with such a dramatic problem on how to sustain interest. Because it seems to me a very difficult challenge given the number of things hitting the legislative docket. Theres a fellow named jeff valenti, wellknown man who worked for Lyndon Baines johnson, became ahead of the Motion Picture association. They once asked him about speeches. He says, theres six words, which i always put in a speech, which i think make a difference. And those six words are let me tell you a story. And when it comes to my world of politics, i have to get beyond the numbers and the statistics and tell you a story about a person affected by something. I found that to be the most dramatic way to bring issues home to people so they understand. How many stories do we have in this room . Thousands. What you need to do is make sure that your member of congress or some trusted staffer hears those stories and understands what it means to a family, what they have been through. When we debated obamacare and i stood on the street in front of my office in springfield, illinois, with the Tea Party People raging away. They finally said stop telling stories because i this had them. Every time they were going to dismiss this as big government, i said, let me tell you who couldnt get insurance in rochester. Stop telling stories. The point im getting to is no matter what the issue and this one especially because how poignant and touching and personal it is. The story of medical research has so many different chapters. Make sure that member of congress understands them. I worked for year, still have, on the dreamers, trying to help those undocumented kids brought to the United States who grew up here. It was partisan, but i can recall sitting down with Kay Bailey Hutchison trying to work out an agreement on something. And she turned to her staffer and said, will that help maria if we do it this way . It was a story she heard and remembered and brought to the negotiating table. So never stop telling the stories. Youre a member of the Bipartisan Task force on alzheimers disease. How many members are there . I can tell you i dont know the exact number, but it is in excess of 40. Not bad. When we had the budget resolution on the floor and i took all the medical research amendments and all the democrats and republicans and said lets put it in one amendment, put everything in one amendment. Susan went along with it. She had the alzheimers amendment, a specific one. And we had 42 or 43 who had cosponsored amendments when it came to medical research. Now were all together, democrats and republicans. Thats the way this works. And thats the way you build the coalition to the capacity. What is structurally going on . When you look at other chronic diseases, heart disease, alzheimers has got the largest footprint out there in the country of affected americans and the costs are the highest. As i understand. Theyre among the highest of all these. But the level of Research Dollars that the federal government spends is really a pathetic sort of a third or less of what you see going into sort of similar rates of things. Im just interested structurally what do you think is happening in the alzheimers field thats made it difficult to step those numbers up . Thats a good question. I really would address it to dr. Collins. Ive asked it of nih as long as ive been in the house and senate. How do you pick your Research Issues and Research Projects . And were near a cure. Its a deadly disease. It affects children. Things like that. And by and large, it sounds like all of the above when you get right down to it. I dont know. I dont know how to measure. You know, the amp program, youre probably familiar with the amp program. Alzheimers was identified as one of the medical diseases that they are going after in this new partnership between pharma and nih. Thats a good sign. And this directed investment specific research may turn out to be more productive than a lot of other things. I wouldnt dismiss it by dollar amount. When i talk about the advanced photon source being so important to lily in developing a new i believe thats their drug. I think ive got that right. The advanced photon source is so important to them, who would have guessed that was Biomedical Research when we were developing it 10, 20, 30 years ago . But it is. So there are many tangential things that come into the whole quest to find the answer. When you think you talk about conservatives and going in to talk about biomedical, and i would imagine that would be very compelling. My family is from oklahoma and kansas. You went in there and had that discussion and there would be support. Who is the opposition that needs to be taken down . The opposition is not specific. Taken down . The opposition the not specific. Let me give you an example. My bill, the american cures act, 5 real growth over a tenyear period of time costs 150 billion. Its likely well spend in the neighborhood of 20 trillion on our federal budgets during that period. 150 billion, wow, big sum of money. 20 trillion gets smaller when you put it in comparison. I started thinking about how are we going to pay for it, durbin . Great to have these ideas. How are you going to pay for it . Well for the longest time, i have had this smoking. This thing against tobacco. I knew that. Ive got notes. The fact that you dont face smoking on airplanes is a bill i passed in the house. Round of applause. So i said lets get real. A dollar a pack and its going to go to medical research. That goes to half of what i just described to you. The 5 real growth. Im not going to name names but a conservative republican senator who by his i dont want to give it away. By his religious preference hates tobacco. So i said heres the thing, medical research up 5 . Im with you, im with you. A dollar on tobacco. No way. Why . No taxes. I dont go for taxes. Is that a Grover Norquist column . Its people that signed this pledge. Even on tobacco. On tobacco. I said but your state and other states are doing this already. Republicanled legislatures and governors. No, i took the pledge. So it isnt as if people are lewdites or opposed to science and progress. They sign themselves up for restrictions on their power as a senator in congress to appeal to certain constituencies. Im never going to sign those pledges. I think you need to have the flexibility to make the right decision for americas future. Do you think theres attention from your perspective because weve been talking about research. Theres also about living and one of the things i want to talk to Susan Collins about is living with this, caretakers. Im interested in what the Affordable Care act and what is the social contract as you feel it between our government and Civil Society and those People Living with this disease . Because were talking about research that may not help many of those with this. Does that come up in discussion . Again, im going to tell you a story. But each of us comes to this with our life experience. If youve ever been a new father of a sick child and didnt have Health Insurance, youll never forget it as long as you live. I was one. I was a student at georgetown law just a few blocks from here. Brandnew wife and baby and no Health Insurance. My daughter had a problem. I said i leave the law school classes, pick up my wife and baby and head over to childrens and sit in the room for people who had no Health Insurance. And wait to see who walked through the door. I had a number. And i was hoping whoever came through the door was a competent medical professional that could save my daughters life. Youll never forget that as long as you live. Thats why i think Health Insurance and that peace of mind is a basic right that we should establish in america. It shouldnt be a question of whether youre lucky or rich. This ought to be who we are as a nation. It ought to define us as a nation. So we get into this conversation about the role of government, thats where i come from. It comes from a life experience. Affordable care act, most important domestic vote i ever cast. 16 million americans now have it comes from a life experience. Affordable care act, most important domestic vote i ever cast. 16 million americans now have access to Health Insurance. The number of uninsured is down by 30 . The rate of growth in Health Care Costs is still at an incline, but its flattening just enough to give 13 more years of solvency to the medicare system. We can see this is working. Its transforming the delivery of medical services. There are 16 million, or 10 or 11 million fathers not sitting in those rooms without Health Insurance praying that the right doctor walks through the door. I want to go to the audience and ask a question before senator collins gets here. I want to ask you one unfair question. Not the first. If you were in the seat that president obama has, how would you deal with this political environment differently than he has . What would you do that hes not . What needles would you move that hes not . How would you deal with that task of making the nation healthier . Well, i think he will be remembered for this Affordable Care act, having survived two constitutional challenges in the Supreme Court. And weve soldiered on through some impossible challenges. How about the rollout . And all the things we went through there . I believe this is going to be ranked number one or two in terms of his legacy. We still have a year and a half to go. In terms of his legacy. How could we have done it differently . Good question. I really encouraged him to take the american cures act and make it part of his president ial platform and budget. He hasnt quite done that, but he is moving in more and more medical research. Precision medicine, for example. Which really tries to take the human genome project and these diseases and tailor make what individuals need. He, i think, is a great communicator. A great messenger. And i would hope that hed spend more time on this medical research issue. Interesting. Good answer. Wait, who is it . Senator collins, come on in, come join our living room here. Come on in. Senator Susan Collins. [ applause ] hey, susan. Susan, thank you for joining us. We thought wed just kind of mix it up a little bit. Were going to get rid of him soon. I like the blue dress. He said such nice things about you. But let me take a couple of quick questions for senator durbin before he needs to run off. Do we have a microphone . Can we toss it over fast . How are you . Fine, thanks. Were going to have fun, i promise. My name is laura abernethy. Im on both sides of helping the Alzheimers Association raise money through my national sorority, but im also a caregiver to my father who is 88 and has alzheimers. My challenge is we are raising money, and i think its wonderful for research because i dont want any other family to go through what were going through with my father. But at the same time, i want to be able that my father lives a life of dignity because up until this point he was a very active gentleman, very happy, very charismatic. Where does the money come from, and how do we get the different Nursing Homes and care facilities and inhome care to meet the requirements to continue to treat people with dignity . Because i feel that, as weve been talking to some of the other caregivers before, that thats one of the things. Theres no standard. Its a very high turnover rate. Ive been fortunate and have found an amazing place for my father that i hope others can find, but then i hear Horror Stories about what is out there. When you talked about the Affordable Care act and health care and how we all deserve it, i also think people who have served in the war, as my father had, and supported his family since he was 14, he still has a level of care. Thank you. So and were going to also discuss this with senator collins because shes been investing so much in this area. But dick . Im going to hand it off to her, not because i cant answer it, but she can answer it better. Susan has introduced a piece of legislation which gets right to the heart of your question. Thank you, dick. First, let me thank you for hosting this forum and also say that theres no better advocate in the United States senate than dick durbin for Biomedical Research. And its been a great pleasure to work with you, dick, on this issue that both of us care so much about. Just a week ago senator baldwin and i introduced a National Caregivers act. And the reason that we did so is exactly to answer some of the concerns that youve just raised. We are spending 225 billion on caring for people with alzheimers. The majority of that is uncompensated care that exhausted Family Members are giving. Frequently, an elderly spouse. And we dont have a strategy for trying to ensure that caregivers have the support that they need. Whether its respite care, home health care, whether its support groups, and thats what our bill is aimed at. It is modeled on the National Alzheimers Plan act, which i authored with former senator evan bayh. And that has produced a National Strategy for alzheimers thats brought together all the federal agencies. And its most important recommendation has to do with the appropriate level of funding for Biomedical Research. Let me get this gentleman right here. Stewart rosenthal with the beacon newspapers. Senator, i commend your legislation to bring more money to federal research, and i think there will be a breakthrough from it in the next few years. My question is you were asking how to pay for it. Why is it when the government develops these kinds of basic Research Things that the Drug Companies to pay very little in terms of license fees and they give no break to medicare on the cost of the drugs that are ultimately provided to the taxpayer that funded it in the first place. Why cant congress do something about that . Great question. Theres no reason why pharma shouldnt pay more. The investment theyre making in the amp program is modest, modest in terms of real dollars. We hope that even that modest investment will lead to some breakthrough here on alzheimers. But i think there are places to turn that are not unreasonable. Certainly pharma is large. Its important. But its revenues and resources suggest that it can be part of the solution here when it comes to medical research. People will ultimately benefit from this research but pharma will benefit first. They will develop these new products, and when i read this Fortune Magazine piece, i sent a copy out to francis collins. I said it never mentions nih once in the entire article. Did you have anything to do with anything thats going on with biogen and lily . He sent me the memo with ten different elements of what basic research at nih led to these developing these new experimental drugs. So theres a linkage there. I think engaging pharma in funding some of this research. We had a presession this morning with stacy winninger who is the person who raised 217 million for this first Round Company denali working on Neurodegenerative Research. What interested me about the amount of money, which was very large, is onethird of the entire budget of the 666 million they put in. But in that, when you talk to her about this funding gap between those in the lab who develop Innovative Research and getting to market, those that invest earlier usually wiped out in the way equity is diluted. So theres a structural bridge thats not being met by most. So to just say that pharma should do that doesnt necessarily figure out the incentive problem. Im not saying do it alone. That they would be an element in this would be important and make sense from their Business Model. But i really view this whole research question, not just Biomedical Research but related research, to be the kind of commitment America Needs to make in this 21st century. Look at our competition. They get it. What china is doing now in research. China. They see this coming. They want to be dominant. If 20th century is the American Century they want the 21st to be the chinese century. We better wake up to this reality. Im not opposed to finding the cure for alzheimers in china and using it in the United States, dont get me wrong, but we have established here a strategic industry. A strategic industry that produces so much. What we do in mapping the human genome project has been paid back to us 150 times over for every dollar spent in doing that. It will continue to. So its an economic driver, not just morally. Susan, if you want to comment. Yes. I just want to encourage us to look at this in a broader way. Alzheimers is our nations costliest disease. It is going to bankrupt medicare and medicaid if we do not invest in the research. The Alzheimers Association has said if we could delay the onset by even five years, it pays for the increase in research. So i think this is one of these issues where were looking at it far too narrowly because if you look at alzheimers as our costliest disease, if you look at the return on investment, if you look at the tsunami of cases that were going to be facing just because of the changing demographics of our country, we cant afford not to make this investment. [ applause ] oh, yes, youre waiting for senator durbin . Oh, okay. Senator durbin, thank you for coming. Big round for senator durbin. Thank you so much. [ applause ] susan, come join me here. Great to see you, dick. Remember our deal about the rights on your living alone. I think theres a story there. We were just talking about him moving from animal house into his own place. And there had to be something in there about his sort of daily routine. We were talking about Steve Kornacki doing an interview with Chuck Schumer, and he talked schumer talked a little bit about his going to the gym with dick and they would target republicans at the gym to sort of seduce over to whatever sort of legislative game they have. Do you work that way yourself . I have a far more direct approach. I just bring people facts and then badger them until they agree with me. I spent much of last night actually reading about the volume of things that you have done not only Alzheimers Research but in aging, aging in place. You know, i was just reading tweets of yours on diabetes and the whole broad arena of how to think about designing homes differently for the aging. You must know more about this subject than any of your colleagues. Its just im convinced thats the case. Would you say thats the case . No, i wouldnt be that presumptuous. But youve invested heavily. I have. Whats driven that . Well, first of all, i have the privilege of chairing the aging committee. So its my responsibility. But somebody called you that i mean, you wanted that job. Absolutely. I represent the state with the oldest median age in the country. So if you had the youngest median age, you wouldnt do this Committee Assignment . No, i would still do it. But thats an added incentive. But what about you is driving you in this direction . But also, i meet constituents every day including members of my own family who are struggling with the issues that one of your questioners brought up. Maine is a lowincome state. We have a lot of rural elderly whose families have moved away. And we need to figure out a way to make sure that their needs are met. The statistics on alzheimers are really a call to action for all of us. What we are learning from the experts is by age 85 and many of us are going to live to at least 85 nearly one out of two of us will develop alzheimers or some other kind of dementia. And the other ones going to be taking care of that person. So to me thats a real call to action. Are people hearing you . Finally, due to great advocacy and to some of the stigma, which ive never understood, thats been connected with alzheimers. Whats with the stigma thing . I dont know. I dont understand it. I grew up in an era where people didnt say that they had cancer. It would be whispered that she had the big c. I didnt understand that either. And with alzheimers theres been for some reason this desire to keep it hidden within families. And i think thats really changed, and thats what has helped us make progress. And as dick may have already said, we made tremendous progress in the appropriations bill this year. Weve only been funding alzheimers at the highest level has been about 600 million. This is for a disease that costs our society as a whole 226 billion. 153 billion is out of medicare and medicaid, and yet we were only investing 600 million. This year we got a 60 increase in the Senate Version of the appropriations bill to bring us up to 950 million. We should be at 2 billion. Thats what the experts tell us. That would still be less than 1 of what were spending, but thats huge progress to have a 60 increase. You know, dick durbin was just sharing with us because i was asking, are we at a different Inflection Point in technology and history what we can do . And he was pretty modest. Because i was sort of looking at his target for dealing and treating with alzheimers in 2050 and yours of 2025. You got your colleagues to basically pass something saying this is a Vital National priority, and you cant wait on a Vital National priority. Lets move up the date. It occurs to me you served in the senate for 18 years. When i think back 18 years ago, we didnt have gadgets like this. Right. We didnt have all the embedded sensors, the wearables. All of the Data Management that we seem to be having today. Do you feel in your long service to the country that all this stuff you sit inside the center of the wizard of oz. Do you see in the crystal ball something very different in the next six to ten years . I do. Tell us why. Give us some what are your benchmarks . Because i have talked to so many researchers. I spent a fascinating two hours at mass general one day with their top Alzheimers Research. And they are making real progress. And it takes money. It takes money. No matter where you look, whether its jackson labs in bar harbor, maine, or mass general or the university of pennsylvania, all across the United States there finally is a focus on alzheimers in a way that leaves me very optimistic that were either going to find more effective treatments. That will probably come first. But ultimately either a means of prevention or a cure. Its the only one of the top ten most deadly diseases for which we dont have any and, right, and the trajectory is frightening. And heres what makes me optimistic. When hiv aids came on the scene, we really invested and focused like a laser, and look at the breakthroughs that we have made in treatment of people with hiv aids. Its just amazing. And it happened, if you think about it, really pretty quickly, but it was because there was this concentrated effort, a National Strategy and the investment. We still spend 3 billion a year on hiv aids compared to the meager 600 million soon i hope to be 950 million for alzheimers. So to me, that shows the effectiveness of a concentrated effort. We had a wonderful conversation this morning with a woman i just mentioned who raised all this money for a Biomedical Company called denali. And she said that she was sort of sick of mice. What shes trying to say in mice we can show that we have cured mice of alzheimers, but the translatability of that to what were dealing with is so limited, and theres so many problems. And she made two really interesting points. One was that this stigma issue or something out there is still limiting those people willing to step forward to have sort of genetic markers done and get into the population pool that they would need. She said hundreds of thousands of people is what they would ideally need over a period of time to map this better. The second is we have a ridiculously low tolerance for risk in the alzheimers area. If youre having a heart valve procedure or youre having other procedures in which the risks are high, people take them. But in alzheimers there seems to be a barrier to that. Have you thought a little bit about that dimension of both risk and population pools . I have. One of the hearings that we held on alzheimers we had bea smith, the restaurateur model, come testify. And she sadly has early onset alzheimers. And one of the wonderful things that she has done is a Public Service announcement reaching out to africanamericans in particular because they are not participating in Clinical Trials. And she is encouraging their participation in Clinical Trials. Ive had members of my own family participate in a very unsuccessful Clinical Trial for alzheimers. But we need people to think not only about themselves but the next generation. Yesterday i met with two constituents who were struggling with early onset alzheimers, which is the saddest kinds of alzheimers. And there are genes that have now been identified for early onset. And so that you can get tested for it. And they talked about the dilemma of their 29yearold daughter who is about to get married. And she cant decide whether to get tested or not. She cant decide whether she wants to have children or not. Because she feels if she doesnt get tested, she shouldnt have children. Thats a horrible dilemma for someone to be in. Right. And i think it causes people, when there isnt an effective treatment or a cure, to be hesitant about getting tested for genetic markers. Because they think, well, if nothing can be done, do i really want to know . And i think that the more that we can get people to participate in testing and Clinical Trials, the more well know and the sooner well get to our goal. Counseling might be a part of that. Absolutely. And i think also, though, helping people understand the benefit for the next generation. I was thinking about the senate. One of the things that you think about. Pete domenici stepped forward on Brain Research and has had difficulties. Former senator domenici is someone i had the privilege to know well in the 1990s. But when i think back and you go back and look at a number of the senators who have passed, a number of them likely had alzheimers or some form but not reported. Correct. That people hid it. They didnt talk about it. It wasnt disclosed, but i know of some cases. The senate is like a family after a certain period of time. Right . Whether you like sometimes unwanted family. But theyre family nonetheless. But you think more of the stories there ought to be an effort for people to come out with their stories . Would that be a healthy thing to help other people around the country do some of the things youre talking about . It would be, and ill tell you a person that i so greatly admire is Maria Shriver who has been very vocal about her fathers fight with alzheimers. I remember when she testified, it was so poignant because she said that he remembered every word of the hail mary, the prayer that we catholics say and yet couldnt remember her name. And when i heard that, it was so heartbreaking. But having people like bea smith, like maria, come forward and tell their personal stories or their familys stories is very important. But its very hard because sometimes those Family Members still want it not to be known. So part of our job is to do more forums like this and to encourage people, particularly celebrities, to tell their stories. We had Glen Campbell come and testify before us. Oh, right. And that was wonderful. And he played some of his music for me before going on with his daughters help. And music had stayed with him. Ive seen that with members of my family struggling with alzheimers that music seems to still stay with them. I dont know if alzheimers was part of it, but you had richard gere up there playing an elder man who was homeless as well. So theres an element of homelessness, being lost, not being connected thats part of this well. So working through those celebrities helps you broaden the story. Let me ask you a couple of unfair questions. To be honest, there are probably some democrats who are not big on science and got ds or fs in science, but there seem to be a lot more in your party. [ laughter ] you know. Thats not right. I accept that. My point is so science, though, the solvency of science, the investment in science, the belief that science can deliver something there seems to be a point of contention with some of your colleagues. One, is that true . And two, is there a way to bring over i mean, dick durbin was talking about going and taking the most conservative members of the caucus, i know he wanted to say antiscience, but he didnt. But taking them, go talk about Biomedical Research with your constituents, and youll see them come alive and he said thats happened. So im interested in this debate about science and health and investment and whether that is a challenge for you with your colleagues in your caucus. Well, the best answer i can give you is the republicans are in control of the senate, and for the First Time Ever weve had a 60 increase in alzheimers funding. Very good answer. So who is i mean, you make such a compelling case about the footprint of this problem. About its really a National Security issue for the nation at least on the domestic front. Dick durbin talks about it being an area of strategic necessity. Whats the problem in bringing more colleagues on more quickly . What is the barrier . What are they distracted by . Well, there are a lot of serious diseases in this country, and it took awhile to get a focus on cancer research, which we spend 5. 4 billion on a year. And its paid dividends. I think we need to look at the successful investments in cancer research, in hiv aids, in cardiovascular disease. Theres not an awareness of the prevalence of alzheimers. Now thats partially because people used to die earlier and also, remember when it was people would say, well, shes just gotten senile. Do you remember that term . And people didnt realize that alzheimers was a disease. They thought it was just something that happened as people got older. So thats why i commend all the advocacy groups, the Alzheimers Association and the many alzheimers u. S. Against alzheimers, alzheimers cures and all these groups. Because raising Public Awareness is absolutely critical to getting the kind of support that we need. And that has been there for other diseases that have organized powerful advocacy groups that are willing to speak out. And thats what we need to do. But its changing. Ive been the chair of the alzheimers task force in the senate for years. Senator clinton was my first cochair. Ive always made it bipartisan. Well, its been quite awhile since shes been in the senate. And so back then it was really difficult to get people interested. Now i have people clamoring to be the cochair. Now senator warner is a cochair, senator toomey is a cochair. Senator markey is a cochair. Thats a real difference. And that matters in terms of our ability to bring bipartisan efforts here. So you mentioned hillary clinton. We are entering a political season. And just about everyone you know is running for president. Yes. Do you think theres a chance i dont know donald trump. I want to put that on the record. But in it, do you think theres a responsible way to elevate Something Like Alzheimers Research yes. In the president ial. We seem to be talking about a lot of silly stuff. But is there a chance to bring some of the Serious Health issues into broader discussion . Yes. And how would you recommend doing it . Let me give you a great example. Jeb bush called me and asked for my support. I am endorsing jeb bush, but i took the opportunity to talk to him about alzheimers disease. I just want to say thats a for those of you tweeting, thats a tweetable moment. Probably the most tweetable moment. Jeb bush is out there. I would link to him. I would ask jeb bush to comment. And heres the good thing. Just a few weeks later, he talked publically about alzheimers disease, about his motherinlaws battle with alzheimers and the need for more investment. So see . It works. But in all seriousness, regardless of who youre supporting for president , ask them, what is their position on alzheimers. Encourage them to make it part of their platform, their agenda, and push them to speak publically about it. Thats what we need. And it worked in my case. Thats great. Let me go to the audience in just a moment. But the other thing that you have spent a lot of your time thinking about, which hasnt really entered our National Discussion as much is aging in place. Yes. Im really interested in how you think about that. What do you think we as a country need to get right in that arena . What are the doable things that we should try to check off the box . Because its beginning to percolate but not widely discussed. Well, im going to give my parents credit on this. When they built their house, twostory house in 1957, they were smart enough to put a master bedroom and bathroom on the first floor. And im one of six children. And they closed off the top floor. They left one as a guest bedroom when we come visit, but i cannot imagine how they had the foresight back in 1957 to think about their ability to climb stairs. And when my father had his two knees replaced, one one year, one the next, it wasnt an issue for them. I happen to have broken my ankle last december, and the house i live in, thank goodness, has one of those automatic chairs that goes up a back staircase. Just happened to have one . Yes. When i bought it. Little would i have guessed that i was going to be the one to use it. But it was going to the university of maine which has a whole program to help people age in place. And they went out to assisted living houses, places and interviewed seniors. They interviewed 50 seniors and said, what do you need . And it wasnt just stairs, by any stretch. It was sensors. It was all sorts of indicators where they could be connected to their loved ones. Now, i will tell you there were privacy issues here that had to be dealt with, but were a long ways from the old ive fallen and i cant get up medical alert button. And its from that that i realized you could redesign Living Spaces and renovate Living Spaces so that there would be a sensor if you didnt close the refrigerator door or if you left the stove on or just better pathways through your house if youre losing your vision through macular degeneration. So its a really exciting area. And lets face it, most of us want to stay in the comfort, security and privacy of our own homes. And weve got to do a better job using technology to make that possible. There are also huge cost benefits of being able to live in your own home. So we had a hearing on this issue, too. And we had someone come in who compared the cost of institutionalized care in a nursing home versus redesigning and putting sensors that would allow better connection to an adult child. I cant imagine. I was talking to Amy Klobuchar about you and theres no one that knows i cant imagine anything telling you no if they ask you to work on a bill. Let me open the floor to our guest. Right up here in front. Well get you a microphone. Just throw it. No. Im with next avenue. Yesterday i had a nice conversation with dr. David satcher, the former surgeon general. He was a member of the alzheimers study group which came out in 2009 with a report that was supposed to be a wakeup call. A call about all the statistics thats you mentioned, that dr. Johns mentioned, that all the people have mentioned. And i asked him the question that steve just asked you, which was, if all this is true and were facing the tsunami of cases and we have a fraction of the Research Money thats going to this case why is that . What is the problem . And he doesnt know the answer, but one theory he has and id love to get your opinion is unlike hiv aids which more or less affected younger people his theory is that one reason for the slow response is that this disease unfortunately affects older people, and he also made the point that many of those older people who were obviously afflicted with the disease dont vote. To what degree it doesnt explain everything but to what degree do you think it explains some of whats going on in terms of the slow response to the need for funding for alzheimers . Can i piggyback on that . With the self awareness thats were all going to have at some point about our own health frame, our genetic makeup im thinking of having my genes sequenced. Its about 1,000 bucks. Is the question of whether thats changes the stakeholding. If you know 15 to 30 years before, does it change that . Go ahead susan. First i have to tell a story about dr. Satcher whom i got to know when i first came to the senate and he was surgeon general. It turned out that he had done an institutes of medicine study with my uncle who practiced in maine for many years. And who has since died of alzheimers. And so i think the world of dr. Satcher. I dont agree with him in this case because any of you who have had a Family Member with alzheimers know that it affects the entire family. It does not just affect the victim. It affects the grandchild whose name is no longer remembered. It affects the spouse who is trying to deal with a husband and wife who is for the first time yelling at home and wont bathe. It affects everybody. Having seen this very close, up front and personal, i dont think its because its a disease of the elderly. I think it was because for years it was hidden or people died earlier, or it was well, sees senile. And we didnt understand that it was a disease. Even though that work has been done for years. But think of the difference. And dr. Johns would tell you. The difference in the last five years on Public Awareness is remarkable. When the Alzheimers Association brings those purple clad advocates to town i always have a hearing that day because it fills up the entire hearing room and its important visually for people to know it. Im sorry. You answered my question by saying that were all in. So let me take one last question. Y right over here. I along with so many other people in this room want to thank you, senator collins, for everything you are doing. You are just an amazing advocate. I also want to ask you, and knock it up a notch, harry johns this morning talked about president ial candidates. Steve brought it up again. But im wondering if in the words of pinkerton who is a wonderful journalist he says that we need to declare war. Worldwide war on alzheimers. And im wondering if you have worked with any foreign leaders or your other counterparts in trying to address this in a much more global way. Excellent question, and the answer is yes. Great britain had an international conference. Last year i was invited to it and to speak at it. I desperately wanted to go. But the Senate Schedule plus my Campaign Schedule precluded me from doing so. But george bradenberg has brought in people to meet with me internationally because we do need an interNational Approach. And we need to pool resources and research. And one issue i feel strongly about is that if you get federal funding for Alzheimers Research, you should be required to share your results. Is that the case today . Not always. I dont pretend to be an expert on this, but im told that some of it is deemed proprietary if its in conjunction with a Pharmaceutical Company which it often is. And, of course, theres the new amp Initiative Also where theres a modest its pretty modest investments from both sides. And that one is going to be published, as i recall. But it seems to me that ought to be a minimum. But i agree we need an interNational Approach. This problem is only going to grow worse across the world. And there are countries like in western europe and japan where the population is aging that should be particularly interested in a collaborative approach. I would just say in closing, this last point about the sharing of data of research, as long as the privacy issues are worked out. In the atlantics, many health forums, its the single thing that comes up. Whether its hospital to hospital. We did a thing up in cambridge. Several cancer researchers from harvard, top saying we dont share in the way we should. And the absence of protocols and sort of commitment to share very broadly is the biggest inhibitor. Everybody says its Getting Better but its not where it should be. I really appreciate that last comment. Susan, thank you for joining us. Thanks. Awesome senator of maine thank you. Good to see you. [ applause ] senator, thank you steve. This has been a remarkable morning. We shared poignant stories and a gratifying amount of humor on such a serious subject as we talked about the critical topic of the economic and emotional cost of caring. Are about you leave today, i have one request. In your email from me you have a survey about today. Wed love your feedback on your experience. Theres also a hard copy in the room. I want to thank steve and mary louise for moderating the conversations. I want to thank all our speakers. I want to thank dr. Johns and the Alzheimers Association for supporting this conversation. Youve been a wonderful audience. Youve been engaged. Thank you so much. Give yourself a round of applause, and have a wonderful, wonderful day. With congress on its summer recess this month were featuring our cspan cities tour which visits literary and Historic Sites across the nation. To hear from local historians, authors and civic leaders. Today we travel to ft. Lauderdale. Watch that at 6 00 p. M. Eastern on cspan. And tonight at 8 00, the leaders of canadas four major parties participate in a live televised debate. Its the first and only so far scheduled debate. Prime minister Stephen Harper of the conservative party, new Democratic Party leader thomas pmolcare trustin trudeau and elizabeth may. Earlier this week Prime Minister harper called for the election to be held on october 19th. The debate posted by macleans magazine will be at 8 00 p. M. This weekend on cspan networks politics books and american history. Saturday night at 8 00 eastern on cspan, congressional profiles with four freshman members. Brendan boyle Louisiana Republican ralph abraham, michigan democrat Brenda Lawrence and new Jersey Republican thom mcarthur. Sunday night at 9 00 with elections in november, well show you the debate among the four National Party leaders in canada. Charles murray argues through the use of technology we can rein in the power of the federal government. And sunday evening at 7 00 sues susan souther talks about the people from nagasaki japan, from the moment it was bombed until today. This weekend on cspan3 we commemorate the 70th anniversary of the bombings of hiroshima and nagasaki. It starts saturday morning at 10 00 with an interview with Clifton Truman daniel. And later the hiroshima nagasaki bomb exhibit with peter kuznik. Sunday morning at 10 00, our coverage continues with the 2000 documentary on the making of the atomic bomb and later interviews with two bomb survivors. Get our complete schedule at cspan. Org. This month cspan radio takes you to the movies. Hear the Supreme Court oral argument from four cases that played a part in the movies. The watergate case and the drama the loving story about the landmark civil rights case invalidating the laws prohibiting interracial marriage. Hear the Supreme Court oral argument from four cases that played a part in popular movies saturdays in august at 6 00 p. M. On cspan radio. Listen to cspan radio at 90. 1 fm in the d. C. Area online at cspan. Org or download our cspan radio app. Labor secretary tomas perez recently testified before a Senate Subcommittee on a proposed rule aimed at eliminating conflicts of interest. The Obama Administration maintains the rules would discourage bending exclusive conflict of interest rules while financial industry representatives say the change would increase costs for future retirees. A second panel of witnesses included critics of the proposed rule. Welcome to our visitors, and welcome our secretary of labor. Secretary perez, and our other members who will testify in a little bit and glad to have my Ranking Member franken here. He keeps me straight all the time. If not straight, at least he keeps me laughing. You keep me laughing too. Is that the proper thing to say. That sounds good. No, were good friends, we are. And you are the cosponsor of my very first bill. Which you mentioned on television, which i appreciate. Youre very welcome. That was the second comment i didnt like very much, but well talk about that later. Were not going to rehash personal history here. Were going right to the hearing right. Only good friends talk like this. Let me welcome you and ill start with an Opening Statement and turn it over to senator franken. A comfortable retirement is part of the american dream. Unfortunately, the fine print in Department Regulations which seek to define fiduciary would deny millions of americans a chance to plan for one. It would, in my opinion, is a solution is search of a problem. By way of example, in terms of that one word being defined by pages of regulation, that is the regulation and the comments of the department of labor on the fiduciary rule change, just to give you some idea of how much paperwork it took to explain it. Is that a gift for me . Im going to let you take that home. You can take it home and read it tonight, or do whatever else you would like to do with it. The regulation intentions are commendable to ensure that low and middle income families receive the same quality of advice about their investments as wealthy people do. Under the proposal people who give Investment Advice must act in the best interest of the investors or forfeit their fees. Under the new rule, providers of Retirement Savings vehicles such as i. R. A. S and 401 k s must enter into a contract. The regulations that gov tern would severely limit the product vam for available for retirement accounts. The rule also requires disclosure of more information than is reasonable or often even times provided possible to provide. Advisers must estimate the cost level of fees investor to pay or multiple years because fees often fluctuate as do rates in a return, such estimates are wrong. They are considered misleading and banned by securities and exchange commission. I might insert here my private life of 33 years i dealt with regulation z in terms of disclosure of real estate and mortgage information and annual percentage rates and rates of return at any one time can by its very nature be wrong due to changes in market and you can penalize someone through no fault of their own. It would restrict i. R. A. Investors it defies all logic. Theres a one size fits all open approach which would prevent investors from diverseifying in ways to protect from down side risk. It would be reduced to a mere handful for most americans. This seems entirely counterintuitive to our Public Policy goals of increasing Retirement Plan participation for citizens of our country. They must have a contract to receive recommendations about which to put in their investment accounts. The millions of existing i. R. A. S and 401 k s would be blocked from getting ongoing advice because those contracts werent in place when the accounts were created. Millions will receive letters from a Brokerage Firm telling them theyll not be able to get personalized assistance. Theyd be forced to leave the business because they couldnt be properly licensed. Having a personal representative matters. Threequarters of nonretired consumers contribute to an i. R. A. Plan or Retirement Plan while fewer than half who dont have advisers save for retirement. Many working families will not be able to get the advice they need to feel comfortable about the decisions that are made. Losing losing personal assistance could be for Retirement Savings could be reduced by 40 the amount of savings saved by low and moderate income people. As i told secretary perez on the phone, im interested in seeing people that get quality advice and the people that give that advice are responsible for that advice. The matter is not the goal. The goal is how you get to the goal and how you define it. That many pages of regulation and that much explanation of an entire goal is too much and too restrictive on the access to free advice these people need to get. Ill turn it over to senator franken from minnesota. Thank you. This is my first hearing as Ranking Member of the employment and Workplace Safety subcommittee, and i look forward to working with my friend chairman isakson and members of the committee on the Important Role the subcommittee plays with jurisdiction over a variety of employment issues including workforce education and training, the health and safety of americas workforce, wage and hour laws and workplace flexibility. In todays hearing were discussing a very important issue, protecting americas workers Retirement Savings and in particular a review of the department of labors proposed rule to fix conflict of interest and retirement advice americans receive when managing their retirement nest eggs. We have read the headline time and time again that americans are not saving enough for retirement. Ive heard it many times from hard working minnesotans about how hard they are working just to keep up and provide for their families, let alone save for retirement. Saving for retirement is hard, and investing can be intimidating for those without any experience leaving many to rely on advisers to help guide them through Retirement Planning. Now most advisers and brokers put the interest of their clients first, and ive heard from a number of them who have sent me letters recently in support of the department of labors proposed rule, including charlie im going to mispronounce his name, but Something Like bolgnino. I think it means meat sauce in some language. But he is a side by side Financial Planning in plymouth, minnesota, and the best meat sauce comes from the western suburbs of minneapolis. Charles buck of buck Financial Advisers in woodbury, minnesota, another minnesota financial advise who has gotten a hold of me in support of this rule. Well also hear from scott puritz later today. He is a managing director of rebalance i. R. A. , and he will be testifying. Mr. Puritz offers his client custom investment portfolios for i. R. A. S and offers one on one consultation all while embracing the fiduciary standard and charges some of the lowest fees in the industry. But there are also those who charge much higher fees and sometimes lower returns for the retirees, and when that happens it is hard for working americans who are planning for retirement, and they pay the price. These hardworking people shouldnt work have to worry about the fact that some advisers dont have their best interest in mind. I think we can all agree to that. The department of labors proposed conflict of interest rule seeks to address this issue. Many groups of supportive of dols rule but there are those who believe the rule will result in unintended consequences. That is what this hearing is about, and that is why it is so important. This is a process. And well hear from a range of perspectives today to help us understand the benefits and shortcomings of the proposed rule. Thats why i was a little taken aback by the title of todays hearing which is restricting advice and education dols unworkable investment proposal for American Families and retirees. If i was naming it, i would have named it dols fiduciary proposal, what a great rule, but i dont think that would have helped much. Right . No, of course not. See, youre in agreement. I think the departments intent with proposed rule is very clear, to help american investors keep more of their hardearned money for retirement but as the saying goes, the devil is in the details. And at 400plus pages, gift wrapped beautifully, there are many details in this rule and i look forward to hearing from secretary perez to better understand how this proposed rule will work and from other witnesses on how we can make this rule even better. Thank you, mr. Chairman. Thank you, senator franken. Well turn to secretary perez, the department of labor. Secretary perez . Thank you, mr. Chairman. If you could hold your remarks to five minutes. Ill do my best. Thank you chairman, Ranking Member franken members of the committee. Its an honor to be here with you. I want to start by talking about a real person. Behind every proposed regulation is a real person. Merlyn did everything right. He and his wife raised four kids in suburban chicago and built a solid middle class life. They saved their money. They built up an impressive portfolio with vanguard and when he was stricken with alzheimers and could no longer manage their finances elaine made an aponte apontement at a local retail bank. The investment broker told her to liquidate the vanguard portfolio and sold them a complex variable annuity to the tune of 650,000. He was Something Like 75 or 78 years old at the time of the sale of this variable annuity. Elaine trusted this advice. The annual fee on that variable annuity, the annual fee was 26,000. And if they needed to access the money, a 7 surrender charge would cost them more than 45,000. In the end, the brokers conflicted advice cost a hardworking family more than 50,000. This story is tragic but not unique. Its also not illegal because someone concluded the advice was suitable. Conservative estimates by the council of economic advisers placed the cost of confluctsed advice at more than 17 billion arisa over four decades old. In my parents generation you retired, you got a pension a pen and a party. The pension was a defined pension benefit. Today behave an 11 trillion market of defined contributions 401 k s and i. R. A. S 11 trillion. Times have changed. Consumers now have to make critical decisions about how to invest these funds that they have so hard earned. And, you know what three of the most important decisions that people now make are medical, legal and financial. When you go to a doctor or a lawyer, they have a medical and legal obligation to put your best interest first. The labor departments conflict of interest rulemaking is about making sure that the same set of rules apply to when you are getting help in retirement. Most people assume actually, that the standards already exists. That is, indeed the case for many advisers like the one my wife and i use, who is a fiduciary, but the majority who operate in this space are under no such commitment. Although in many cases their markets actually suggests they are. Its important to make one thing clear. Senator franken alluded to this, while will are undeniably bad apples, this is not about bad people doing bad things. The majority of folks in this space are trying to do the right thing every day. The nub of the problem is good people who are operating within a structurally flawed system. A market that sees personal financial interests of the adviser and the firm all too frequently misaligned from the best interest of the customer. The result is what we saw happen to the tolfels. Our goal making is straightforward to align the best interest of the customer with those of the adviser and the firm. This has been the product of a significant amount of outreach to a wide array of stake holders. I appreciate the support weve gotten from so many in the industry. People like brian moynihan, the ceo of bank of america who says we believe doing the best interest for our customers is absolutely the right thing to do. Jack vogel founder of vanguard very strong supporter of this rule. Well hear from a witness shortly who plays in this space every day as a fiduciary working with small investors who tells you when you put your customers interests first its great your fo your customers and its great for business in addition. And a transcript from the house shows there is an interesting thing happening right now. The conversation is shifting from whether to have a bestinterest standard to ensuring that a best interest standard can be effectively implemented. Im heartened by that shift and we welcome any and all suggestions on how to improve le proposed rule to ensure it can be effectively implemented. Weve heard and understand concerns that have been raised about issues such as point of sale disclosure, date of retention and mechanics of implementing the best interest standard. And as far as we dont lose sight of our north star we are very flexible on the question of how to get this work done. This is about providing guardrails not straitjackets. Its important as we go through this rulemaking that a substantial subset of the advisers already operate under a fiduciary model. They serve a wide array of customers including small investors and they do it well. We know it can be done because it is already being done by so many businesses. A number of folks have raised concerns that the proposed rule will shut out the small saver from Investment Advice. Entities such as the Consumer Federation of america entities such as aarp they take a backseat to no one in their concern about small investors and they strongly support this rule. And weve consulted with several profitable firms whose Business Model is all about working with the little guy. And there was an Investment Firm in palo alto called well front and they cite their success as quote, living proof that not only is it possible to provide fiduciary service at low cost to small investors nationwide but the market greatly rewards this effort. And when i talk to firms like this and tell them about the argument on the other side that our rulemaking will make it impossible to serve the small saver, the most frequent advice i get is give them my phone number, give them my email, because you know what, ill take their business any day of the week. I know that the industry can adapt to serve this 11 trillion market. And im confident that we can work with them. Weve reached out in addition to small savers to Small Businesses, who want to ensure that their employees have access to Retirement Plans so that they can recruit the best and the brightest. Our proposed rule has a number of safeguards and safety valves so that they can access Retirement Plan options for their employees. As kerry conklin, Small Business owner from new jersey told us,my all for this proposal. I dont have a big firm with our own inhouse Financial Team that can advise me. I want the Financial Advisers i work with to be required to represent my interests. And so thats precisely what were trying to do. Build a big table invite everyone up. I believe one of the most important things you can do when youre doing rulemaking is build a big table, listen and have a healthy dose of humility. So that has been our approach. Humility humility, good faith, an open mind and keen ear. We know our destination and enforceable best interest standard. Its in the line of ronald reagan. Trust but verify. Your marketing material says you look out for your customers best interest. This standard is memorializing what is in the marketing materials. Were open to different routes to getting to that enforceable best interest standard. And we look forward to continuing to hear from as many voices as possible. Weve extended the comment period. Were convening three days of public hearing next month and then well reopen comment after we publish the transcript of those hearings. We look forward to the engagement. And we have gotten so much good feedback from so many businesses who have come in with a get to yes attitude. They have challenges they have confess, they have concerns but they have a get to yes attitude because they recognize like jack bogle said, when you put your customers first its great for your customers and indeed great for your business. This is about middle class security. One of the pillars of middle class security is retirement security. I look forward to working with this committee and with all the stakeholders to continue the process of producing a rule that will work for american savers and will work for American Business and will work for all stakeholders. So, mr. Chairman, thank you for your time. Thank you, secretary perez. We appreciate your attendance and service to the country. What if your rule was implemented as its currently contained in this stack of papers here what would have happened differently in to marilyn and his wife with the 160,000 they cashed in at vanguard and bought a variable annuity . What would your firm do with the 26,000 annual fee or the 7 early withdrawal fee or anything else you might have determined what was wrong . The person advising them would have to look out for their best interest. Excuse me. Thats the point i want to get to. I understand what they went to is a bank, is that correct . Yes. Would the bank be considered to meet the fiduciary standard you require . They went to a broker dealer, not a bank. The broker dealer has a suitability obligation which is which creates part of the challenges that we have in this situation. So the broker dealer under the proposed rule would have an obligation to look out for the best interest of the consumer. The challenge we see in the 17 billion annual cost of conflicted advice is borne out of the fact that there are multiple products that can be suitable. And that broker dealer is totally within his or her bounds to then take four or five suitable products and steer the customer to the product that generates more fees for him or her at the expense of the customer. We think that isnt right. And we think it should be changed. In your vision, how would they be able to remedy the situation with the broker dealer . What would have been the broker dealers obligation to the ladies and gentlemen who bought the variable annuity . 4 to put the customers best interest first. How do you do that . I mean what if he said, well that was the best interest of the customer . What penalty is there . What do you do to the broker dealer or the person offering advice to penalize them for offering what you consider bad advice . You would file a claim for excessive fees to recover the losses incurred as a result of conflicted advice. So it basically creates a cause of action for an individual who feels like theyve been aggrieved to file for a remedy, is that right . Right. And it has a provision in an individual claim like this that the particular bank could have an arbitration clause so they could require that if there is any claim that arises out of the service we provide, it would be resolved through arbitration. Thats one of the proposals in the rule thats in the red so the adviser would do that or the individual would no. The institution that is working with this individual could, as part of the agreement, working with that individual, would be able to include an arbitration clause. So in other words, if we have a problem, you cant go and file a claim in state or federal court you have to go through arbitration. I understand. And that is a proposal that is taken from we spoke to a lot of other agencies that are involved in this issue, s. E. C. And other regulators and that is basically parallel to the procedures that are