National institute on aging promising signs of alzheimers disease will be supported. We have a distinguished panel of experts here today and family members and also quite a and audience. I will welcome the representative of the Alzheimers Association summit you came along way to be here today we thank you for your tireless worker about the need to do more for your loved ones. Also we have students from the university of virginia spending the day learning about budget and appropriations. On the first panel will hear from dr. Francis collins distinguished director of National Institutes of health and what kinds of research are most likely to benefit from our appropriations and we will also have dr. Lee and this and also from the National Institute of aging also here to answer questions on this second panel we go to the researcher who underwrote the study that i mentioned earlier and joined by two individuals impacted by this devastating disease. Finally congressman is here today as a longtime colleague and friend was saddened to learn of his diagnosis soon after his retirement after the house of representatives for ago no surprises first instinct was to educate your advocacy and education for are live for to hearing from our experts before we turn to the first panel for the opening statement. Chairman thank you very much i will make comments brief because i do not want to delay the testimony of our distinguished experts but i appreciate what you said a and to conduct this hearing on alzheimers aziz with to be the defining diseases of our generation. I am pleased to have former congressman more here to testify with his experience living with alzheimers and i appreciate him as a friend and his desire to take his own challenges to focus to help other individuals struggling with this disease. Since his diagnosis he would advocate those we need to find a chair next week. I could not agree more. A devastating irreversible brain disease that destroys cognitive functioning including memory and thought. It affects more than 5. 2 Million People and more than 44 Million Worldwide according to the alzheimers disease international. While a number of individuals 85 and older this will triple by 2015. Already it is the sixth leading cause of death and currently no care no diagnostic test, no treatment. With the baby boomer generation this becomes more prevalent with the need to confront the pending Health Care Crisis that is ever more urgent and as you stated the cost of dementia is projected to space double surpassing Health Care Expenses for Heart Disease and cancer. Alzheimers will define a generation if we focus priorities on Research Capacity does not need to continue to be an inevitable part of the aging process. For every 27 expense the federal government only spends 1 on research. If this was 2014 under the appropriation bill and i appreciate working with you to accomplish the goal. And is not difficult or impossible to read in the health care cost. Health research is an opportunity for those for the most fiscally conservative and caring and compassionate because we can save tremendous amounts of money it is an opportunity to Work Together to find a solution. One study has found a breakthrough to delay onset by five years is a total savings of 447 billion by 2015 with the Financial Wellbeing of the country 1962 president kennedy called the nation into action by the end of the decade we need to commander cells of Alzheimers Research at the same ambition and urgency. Over the next decade we must try to achieve only effective treatment but a cure for alzheimers it is the defining challenge of our generation. We need to find a cure. Next week. The gift we all could provide every american every American Family is a special gift it is the gift of hope. Think you very much. Now we welcome our first panel dr. Francis collins from National Institutes of health overseeing the work of the largest Biomedical Research entity in the world to span the spectrum from basic to Clinical Research. Dr. Collins is noted for his landmark discover things discoveries of the human genome project starting in 1993 culminated april 2003 then continued on and then comes back as the director of the National Institutes of health the elected member of the institute of medicine and the National Academy of science in got the middle of science 2009 also want to welcome the director the National Institute of aging this is the primary agencies supporting and conducting research. The overseas studies of the social aspects of aging and the director serving since 2003 supports thank conducts basic translation in Clinical Research on the brain stem. We welcome you here. Dr. Collins thank you for your leadership through all these years for the human genome project is now for the National Institutes of health. You may now proceed. Good afternoon mr. Chairman and members of the subcommittee. It is a great honor to be here before you along with my colleagues. And dimension to get into the science the subcommittee came together in a bipartisan way deeply troubling down word spiral headed is costing us research over the last 10 years. Well difficult tradeoffs did not make it possible to completely reverse the devastating effects were gratified nih could turn the corner. Let me begin on the scientific challenges and promises we face. Lenders going all the work but i will discuss is really about patients and the loved ones. When of the most famous is glen campbell. Last spring he was honored at the gala here is a photo of me and him with the autographed guitar pick that is my prize positioned to see his great talent it is a reminder how much is at stake. By senator harkin after the way the disease that will break over the United States as it ages already 5 million americans and hundreds of thousands more affected with other types of dementia. Without new scientific breakthroughs those numbers will rise as long as a toll on our health and economy as a mentioned already were currently spending 200 billion per year in those cost to soar at 1. 2 trillion by 2015. To put it into context how much were spending on medical research looking hatter budget those of his devoted to research. We are thrilled it includes an additional 100 million but as you can see the investment pales in comparison and to find a way to look another dimension of from genomics to imaging and big david tools but there are great many things we still dont know how the normal brain functions. In fact, this Month National geographic provides a glimpse of what nih researchers call the last frontier, the human brain and that also notice Scientific American also has the brain on its cover. The Brain Research through Innovative Technologies and is anachronism bring we are happy for this support through the f y 14 omnibus. Do the next Great American project capable of examining the activity billions of nerve cells and networks and pathways in real times. The schizophrenia, epilepsy schizophrenia, epilepsy, a traumatic brain injury, a depression. Than to generate a lot of excitement to give a better idea how defects blubbering i will show you the short video. With normal brain cells the protein stabilizes structures better called microtubules with the internal transport with this amazing machine. But with alzheimers it separates from those microtubules causing them to fall apart and strands of the protein combine to form tangles with in the neurons disabling the transport system to destroy the so ultimately. Can as you see in the ultimatum animation. It disconnects and eventually they die causing memory loss. The effect on the brain is shrinks and begins to lose function as the substance is shrunken by the loss of brain cells. But wine exciting finding is a protein that we just used to think was an accessible was transferred from neuron to neuron. But for us it means opportunities for therapy but if we can find no way to prevent that cell to cell transmission we could stop it in its tracks. Unless we can identify accurately those who may benefit and to do that we need better ways to diagnose alzheimers and as early as possible. Until recently we could only conclusively diagnose after someone had died looking at brain tissue with a classic sign of alzheimers diseases the plaque and the tangles malice with recent advances we can detect signs of alzheimers inside the living brain. What you see here the brain lights up with markers on the bottom you see a normal brain. Quite a difference. To look at the deposits amyloid year before a onset of symptoms that to be a 02 help diagnose at a much earlier stage before so many brain cells have been lost in my also be possible to use these scans and blood or spinal fluid to see if the new therapy is working or as an impact on memory loss. Biomarkers. One of our Top Priorities is to find and validate those kinds of biomarkers for clinical use so well know if treatments are working as quickly as possible. This leads me to the crucial issue of Clinical Trials. Until a couple of years ago we focused primarily on trying to treat people with unmistakable symptoms of advanced alzheimers. Those who had already lost many of their brain cells. The results, im sorry to say, have been almost entirely discouraging. But today, we are focused on earlier interventions. So many of our newest Clinical Trials are actually looking at presymptom attic patients who are at high risk but dont yet show sy to see if stopping the treatment anytime the symptoms disappear. We are testing this among the members of a very large family in colombia. As well as some u. S. Patients who share a dominantly inherent in the genetic mutation at about age 45 and pleases those individuals in extremely high risks. The second study the antiamyloid treatment and alzheimers also called a four wood test another antibody age 65 to 85. These individuals do not have any symptoms of alzheimers but they are bound to have sufficient amyloid in their brain to be considered at risk like the person in the middle. This is someone with a completely normal function. Is that there somebody that will go on to alzheimers . Is a great opportunity to try therapeutics for theres been major damage done to the brain. As i mentioned a minute ago which is why im excited to announce the accelerating Medicine Partnership earlier this month. It is in collaboration between firms and to be accelerated treatment of drug targets for alzheimers disease, diabetes Rheumatoid Arthritis and lupus. About 230 million will be invested over five years where the industry contributes equally. We both have skin in the games. They will incorporate an expanded set of biomarkers in the ongoing trials designed to delay or prevent disease and evaluate them for effect. Another part will develop maps of Molecular Networks in the alzheimers brain particular pointing to the new therapeutic markets. Empowered by the 100 million fy 14 budget increase for the research on diseases of aging nih will be able to make investments in the cuttingedge areas of research that we would otherwise not have been able to pursue. Genetic analysis and the translation centers. Similarly we will be able to fund a significant number of Investigator Research grants that otherwise wouldnt have made the pay line and would have gone unsupported. Mr. Chairman and members of the committee i began talking about people with alzheimers disease. I would like to close with a tribute to another group and represent that im sure by many in this room the people who care for their loved ones as they slip into those shadows of alzheimers and dementia. One such caregiver is a friend of mine a former tv castor who cared fulltime for her husband in their home for nearly 20 years. He was a leading investigator at nih until he began showing signs of confusion in his late 50s. This last week she shared these lines from a book that she is working on about her experience and titled slow dancing with a stranger. As i write these words a glow of light fills the light even though hes absent his lost but not gone. So heartbreaking and so true. What they suffered is what inspired all inspires all of us in the Alzheimers Research to fight back against this insidious disease as swiftly as possible. That is our commitment. There is no time to waste. On behalf of my colleagues thank you for this opportunity. We look forward to your questions. Thank you again for a very lucid presentation. When you are looking at the Green Initiative i was driving into work late monday it must have been friday or monday if i was coming later. [laughter] and i heard you on the diane ream show talking about that and once again i say this with all respect you are one of the unique individuals who can take a very competed in hard to understand scientific process in the research and put it in language that people understand. And i want to thank you for that because what you said on the show just brought it home. To the average person who doesnt understand a lot of what this research is involved. So thank you very much. This may be a simplistic question after the presentation but i see all kind of plans about what people can do to present alzheimers. There are brain games for sale articles telling seniors to do a crossword puzzle every day sudoku also. There are vitamin e. Or b12 and there may be others, too. What do they know about the claims and what individuals can do right now to lower the risk of alzheimers and dementia disease. Im going to turn to my colleague to summarize what we have learned. All of us have to make lifestyle choices every day. There is no such thing as not making the choice. The general issue is health, exercise, diet on many important and they correlates to the risk factors so they know that having high Blood Pressure or in activities or overweight are associated with increased risks of alzheimers disease but the critical question that you asked do we know with certainty what activity, but exercise, what die it will decrease the probability as a question being addressed we do not have a definitive answer the individuals are before they develop alzheimers or early stages of alzheimers and in the years to come we will have the results of those studies. There is a major study called life looking at exercising folks and then looking at the impact on their ability to maintain mobility and also cognitive functions. There are two studies currently funded by the investigators at the university of kansas are looking at the presentiment to court early symptomatic disease to determine whether exercise actually changes the course of the disease or changes these brain alterations that we have seen. We have the ability now as we never did before to look at the ability not just wants just once people develop the disease and then we follow up for years. We can look before there is any disease and we can use biomarkers and we can determine whether exercise or cognitive exercises will affect the course of those prophecies. We are in the midst of the studies now and in the next year we should have the answers. In the meantime although we see the research didnt have a definitive answer there are so many good reasons to be practicing the positive aspects of the lifestyle choices that you mentioned mentioned a wee had no intention of recommending those. Thank you, doctor. The former general brought up a very important issue in this past sundays washington post. He noted that that africanamericans are two to three times more likely to develop alzheimers disease and the nonhispanic whites, but they participate in Clinical Trials as far lower rates than other ethnic groups. We all know that shameful history of the tuskegee. So the level of trust rest beneath the distrust is natural. Is there anything they can do to inspire more participation by the minorities in the east Research Endeavors . I read that editorial and it was indeed a compelling and moving as a reminder of how important it is to focus on the healthiest pretties and that is an issue for alzheimers disease. I will say one thing and then ask you to say another thing about what we are doing now. One of the greatest opportunity in terms of encouraging the participation in Clinical Trials is that the researchers themselves represent the diversity of the countries. You can see that over and over again this is a reason we need to focus on improving and expanding the diversity of our own Biomedical Research workforce. We have a number of programs that are quite old and this is a personal priority for me to try to see if we could do a better job of recruiting and maintaining and mentoring and supporting individuals from the underrepresented groups in order to populate the Clinical Trial workforces with people who represent the country and would therefore perhaps be more welcoming to the groups that tentatively right now are unsure about whether they want to join or not. In terms of what we are giving are getting in the trial because all of the centers are engaged in that. We are making efforts to correct what you pointed out in the under representation of the minorities and clinical studies and Clinical Trials. The Research Centers for example in the outreach core some court some of them for example in the city of chicago have been to serve in the a