pro-police and not move off the wrong direction. >> mona? >> this topic of what goes on between police and black young men is part of a much bigger picture with what has gone wrong with many aspects of our society. by no means limited to african-americans or minorities. ..

as a married father, great role model, to make that a part of his message to all americans the importance of family. one need to aim it at any group, just say this is important for social cohesion. it is important for outcomes and a lot more important than mrs. obama speak out the lights in the campaign. if you want to improve life for case, give them a mother and a father and this president did not choose to do that. >> follow up on that. if you look at barack obama who is so admired in the african-american community and other communities as well, you could argue he has a unique ability to make the case. the next president is a

republican, scott walker. fatherhood is important. >> that is why it's such a tragedy that obama chose not to do it. he's occasionally delivered the message. but usually to an audience of young black teenagers rather than the whole country and making it a really key message of his presidency. >> is it possible to talk about this intelligently and sensitively in the sensitively in a way that may resonate? >> as long as it's not done as a school to a particular community, then yes. by the way that's the way to talk about it because it does affect every single group in america. the move away from thinking about marriage as the essential first step towards family formation is well advanced and it is now only the college educated in our society who

continue to follow the pattern. everybody else can middle income to the poor and high school dropouts at the very most has lost its normative value. >> i don't want to wear out her welcome. i have one last question for charlie. you've often talked about the idea of conservative areas and come conservative areas them but the idea that there are ways in which the right can leverage the last to make its case. that sounds a little funny to my years. can you elaborate a little bit. >> in addition to the technological points we were discussing, and the basic assumption of the right is local communities and families and private institutions and states should make the majority of the decisions and only those things that have to be done by federal government need to be done by federal government and should be. we are at the stage now in which the left have started to use

this date to get its own way and is aware some of the gains can be taken away from it. i want to caveat this by saying progressives do not believe in a particularly meaningful concept of federalism. they use it to advance their agenda and what they want to try to nationalize it. but the gains made on the left in the marijuana debate, it is somewhat ironic to hear people in colorado and washington who are progressives complain the federal government. at a moments notice take away the referenda and i have heard very few conservatives. you don't have to believe marijuana should be legal to make this point. i've heard very few conservatives go in and say that is what we're talking about. i complained frequently about how he argued against mandates. a good argument and what its

mandate to this development. i don't think that you have to pay for calm -- contraception is a winning argument. when we do go too far towards the latter when it comes to the question of mandates, we could say i'm in favor of guns but i don't want to mandate those on you. the same thing is true of federalism. let's point out to them that this is exactly what you're talking about on the things we care about. that's why i think there's an opportunity here especially given they haven't got much traction at the federal level. >> you take a more traditional traditional -- >> absolutely. >> how many of you guys who take the deal? >> i think on that point that

it's okay for people in different parts of the country to live differently from one another. that's not have an little laboratories that can nationalize. it's fine if people want to live differently in a more diverse, the more different in terms of religious liberty, gun-control charts, but what we need to use back. i would take back now but those two states but all tasty. >> thank you very much. [applause]

>> senate energy and natural resources committee holds a hearing today on wildfire management and communities prone to wildfires. the agricultural department's fire chief will be among those testifying. the >> dr. francis collins about another hearing on capitol hill to capitol hill to go up to the nih budget request for 2016.

he was joined by the other directors or the institution they testified about precision medicine and the progress being made in other areas of biomedical research. this was before senate appropriations subcommittee. it is an hour and 50 minutes. >> the appropriations subcommittee on related agencies will come to order. certainly where pleased to see dr. francis collins and the institute of directors from nih with us. glad to have you here to talk about the budget. we look forward to the testimony and the opportunity to talk with each person on the panel about these issues is that throughout history and the practice of medicine has been largely react to it. today we have to wait until the onset of most diseases before we are able to treat them or begin the process of curing them.

science doesn't fully understand the genetic and environmental factors that cause major disease such as cancer diabetes, alzheimer's disease. because of that, treatments are often imprecise, unpredictable and unfortunately often not effective. this budget that you will have proposed really proposes a revolutionary concept of precision medicine, an initiative that would really address each individual in a precise enough a precise and often different way instead of one-size-fits-all approach, the precision management initiative would allow physicians to individualized treatment on patients based on their unique genetic makeup by having access to each individual's genetic makeup. now the position has the potential we hope not to use or to use specific and targeted

drugs. as the chairman of the subcommittee, i will certainly support this project. i hope we can prioritize and intend to prioritize funding for nih is one of the things the committee does even an eight year where finding challenges are greater than they sometimes are. we have challenges at home, work government, have the funding challenges. part of the challenge is to decide how to prioritize how we spend our money and certainly anticipating this committee will be as supportive as they possibly can that not only the precision medicine initiative but also the ongoing work of nih and the promise it holds for the future. i look forward to working with you, dr. collins, with the ranking member and members of this committee as we pursue the ideas you will bring to the table today and the potential of what can be done in nih largely

and specifically at each of the institute is well represented here today. we are lucky to have the chairman of the full committee with a ranking member of the full committee will be here as well and it's a great opportunity for me to get to work with senator murray. if you have some opening statement will have that before we go to dr. collins. >> thank you very much, chairman blunt. thank you, dr. collins for being here. i look forward to this discussion today. all of us today can agree there's more we need to do to keep families and communities healthy and continue investing in priorities that strengthen our economy from the middle out. financial institute of health is vitally important to this effort. the nih supports basic research that make medical advances possible. it gives hope to those living with chronic and life-threatening disease and helps drive economic growth and

competitiveness. with all been touched in one way or another by the research nih has supported from its pioneering use of gene therapies to treat cancer, to development of antiviral and repeat to treat hiv or effort to reduce incidence of diabetes in preterm birth. biomedical research is an important investment to ensure our government works for all of our families. the investments we make as well as an education and other programs in this bill support indirectly will help insure america's workforce in the years ahead will be able to create and take on the job at the 21st century. that is why like a chairman blunt referenced and deeply troubled by the aversion of nih purchasing power for the last decade and i'm equally concerned about the similar erosion that has occurred in many other categories that the budget that are essential to promoting a strong and growing middle class whether it is funding for rebuilding roads and bridges for

pell grants or child care block grant is making sure we are investing responsibly in our national priorities like research in infrastructure and education remains one of my highest priorities. of course last month the senate debated and passed a budget resolution and unfortunately the budget proposal in the one passed by the house fell short of the funding levels we need to ensure stable and increasing support for nih and other priorities. i'm proud as you remember back in 2013 democrats and republicans were able to reach a budget agreement to rollback sequestration for fiscal year 24 team in 2015. rather than going back to the days of uncertainty and shortsighted counterproductive cuts, we've got to build on the bipartisan agreement and replace the automatic spending cuts for 2016 and beyond. the president's budget would do just that by fully replacing

sequestration of defense and nondefense discretionary spending. that approach makes it possible to provide a billion dollars increase in funding to support nih efforts and increasing understanding of the human brain and addressing the growing threat of antibiotic resistant bacteria or advancing work on developing universal flu vaccine are finding treatments and cures for diseases that cause suffering to help ensure. the budget supports a bold new initiative to exploit the recent advances in genomics, molecular biology and data management to support the shift from one-size-fits-all medicine to one tailored to specific individuals. precision medicine holds great promise for further dancing the treatment of cancer and ultimately the full spectrum of disease. i'm proud my home state of washington is home to several institutions that have been pioneers in the field. that includes fred hutchinson cancer research center university of washington using

technology, today to tackle breast cancer, eye disease and alzheimer's disease. dr. collins is a chronic researcher at network back home believe these approaches will transform the field of medicine and a year of something you agree with. but there is much opportunity funding constraints have made it harder than ever for new researchers to land their first grant. the private sector funds. the asic biomedical research leading researchers dependent on a stretch funding of nih funding. is pleased to see dr. collins budget is sensitive to the problem and focuses on local leveraging nih research phase to promote junior scientists. this is just one of the challenges the nih faces in what many failed as a remarkable time for medical research. i really hopeful democrats and republicans can come together this time and build on the bipartisan foundation that was

set in the last congress so we can make the investments we need to seize on these opportunities that are so important for our families and economy. thank you, mr. chairman. >> thank you on the senator murray. dr. collins, we are eager to hear from you. >> good morning, chairman blunt ranking member murray, chairman cochran. it's an honor to appear before the days and to apply in ways that enhance human health, link to my could reduce illness and disability. as a federal research agency we are acutely aware to achieve their mission in a service effect of inefficient storage of resources provided by the american people. when we do this is focusing on prioritization of nih resources. this involves developing portfolio analysis identifying compelling opportunities fostering creative trends in

collaboration and enhancing the use of the common fund. we are also forging novel interagency partnerships like the nih darpa fda project to build human biochips for testing drug toxicity like the one i'm holding as well as innovative public-private effort like the accelerating medicines partnership seeking to identify new targets for alzheimer's disease, type-2 diabetes anatomy and disorders. to help set priorities, we are developing an overarching nih strategic plan to be linked with individual institute and center plans for missile set the stage for the future of biomedical research. we're also working to optimize the peer review process to enhance the diversity, fairness, breaker reproducibility of science. finally, we remain firmly committed to strengthening and sustaining the biomedical work hours incentivizing early stage of investigators and revitalizing physician scientist

training. with these goals in mind we are confident we will support the best science while advancing our core mission and inspiring public trust. we take this stewardship responsibility with great seriousness. let me assure you the future of biomedical research has never been brighter thanks in large part to nih strong support of basic science of the foundation for discoveries that have long made america the world leader in biomedicine. one exciting example is the brain initiative. the bold multiagency effort is enabling development of innovative technologies such as what you see here on the screen to produce a dynamic picture of how individual brain cells interact in time and space. this initiative will give us the tools for major advances in brain diseases alzheimer's and autism to schizophrenia, epilepsy and dramatic brain injury. scientific advances are accelerating progress towards a new era of precision medicine.

historically,.tours have been forced to base most of the treatment recommendations on the expected response of the average patient. recent advances including the plummeting cost of dna sequencing now make it possible for us to apply a more precise approach that takes into account individual differences in genes and environment for my style. with this in mind we at nih are thrilled to take a lead role in the multiagency initiative. in the near term this initiative will focus on cancer. such research will include efforts to understand why cancer develop drug resistance comics for noninvasive ways of tracking therapeutic response and test new treatments aimed at the genetic profiles of a wide range of cancers. but the longer-term goal nih will launch an unprecedented national research cohort of 1 billion or more volunteers to play an active role in how their genetic and environmental information is used to develop

new strategies for disease management and prevention. there's no better time than now to embark on the enterprise and that the precise personal approach into virtually all areas of health and disease. in closing my opening remarks but may share a story that highlights the promise of precision medicine and puts a human face on it. seven years ago at the age of 12 you on a simon received a devastating diagnosis, a rare and often fatal type of pediatric liver cancer called freiberger malley or hepatocellular carcinoma. this disease is poorly understood and there was no effective treatments. élan i was fortunate to have been diagnosed early enough for surgery to remove most of her liver should be cancer. the story doesn't end there. for years after her surgery elana began interning in her father's lab at rockefeller

university reaching out through social media this determined woman found 15 other individuals with the same cancer. there are tumors including hers could be subjected to complete dna sequencing. the results are nothing short of remarkable. elana identified a genetic mutation that seemed to be driving the cancer in all the cases, every single one providing a designer drug now under active development. since then, elana has published her findings in the journal science, participated in the white house science fair entered harvard and introduced the president at the white house launch of the precision medicine initiative. this is the kind of scientific success we want to see replicated over and over. with your help, the time is now to accelerate the pace of such breakthroughs. thank you, mr. chairman. my colleagues i would like to briefly introduce and i welcome your questions to my left.

dr. fauci at the institute of infectious disease. dr. gary givens, director of the heart, lung and blood institute. thomas and so, director of the institute of mental health. dr. doug loewy appointed acting director of the national cancer institute and that are drawn lorsch at the institute of general medical sciences. thank you. >> thank you dr. collins. we'll start with five-minute rounds and probably have as many rounds as we can vote at the great opportunity to talk to you in about what you're doing on precision medicine. obviously a long path into the future where precision medicine might well defined most medicine at some future point. what would you see maybe five and 10 year short-term markers to look at to see whether we are getting where we all would like

to get as we move towards this precision medicine initiative? >> i very much appreciate the question and something we're all quite excited about and we concluded yesterday a two-day public workshop trained to map out that kind of issue. what kind of uses could a cohort of a million individuals be put to if that was present five years from now. as an example, we really don't at the present time have the ability to take full advantage of open fund about individual differences in drug response and see how those work in the real world. the fda has on the label now more than 100 drugs, information that they know in their genetic information about the patient would be useful in this situation in order to choose the right dose and make sure it's the right drug for the patient. in practice that is not happening. the logistics aren't there. imagine you have a million

people whose complete genomes have been determined with their full participation in permission and are available with the click of a mouse so when a decision is made about writing a prescription it is possible for the health care provider to immediately know whether the dose needs to be adjusted or whether that is the wrong drug for that person. we could rigorously test with his aimed about the additional information in terms of outcomes than a large-scale study of the sort which is currently not possible would make that happen. to be an example. i want to turn to my colleagues asked him him only because the other part is the early focus on cancer which i think will reap rewards may be sooner than the process of getting this million cohort under way. >> thank you, dr. collins and thank you for your comment and your strong support for nih. we really are at an inflection point where it comes to cancer

treatment. as a result of the genomic revolution, we now understand and much more at detail than ever before they cancer instead of being one disease even breast cancer for example is many different diseases and the opportunity for targeted treatment that we hope will be better, smarter and have fewer side effects really is at hand. we already have several clear examples of targeted fda approved drugs that are able to do just that. with the new precision medicine initiative, we are able at a much larger scale to be able to conduct clinical trials that involved both adults and children that instead of being focused principally on the oregon side with the cancer develops instead is focused on the abnormalities in the cancer

and the targeted drugs treat those specific abnormalities. i have gone into this in more detail in my written comments, but i just wanted to highlight some of the key elements. >> dr. collins, the million person cohort, how would you intend to assemble bad and put that information together to start with. >> that is a topic of intense conversation right now. we've put together a working group of experts who met this week and will meet again each month between now and august in the next meeting in senator alexander stayed in nashville will look at this question of the ideal cohort you want to achieve as far as demographics. we believe we can accomplish some of this by taking advantage of cohorts that have been put together by various health care delivery systems for the veterans administration and be

able to do this more cheaply than if you had to start from scratch. undoubtedly, there will be gaps in terms of the representation. i want to be sure this has power to tell us things about health disparity and figure out how to fill those gaps. at august the group makes strong recommendations and will then be ready starting in fy 16 should course is not far away to initiate the process of putting the cohort together. >> thank you. senator murray. >> the million person cohort is intriguing but has to be done right. how do you ensure represent all elements of the u.s. population? women, minorities. >> we very much want to have that kind of ability to sample across the population obviously women and men obviously racial and ethnic groups across socioeconomic status across age and with a million you had the

opportunity even in some of those subsets to have a lot of people involved. that is the point of having that power. exactly how we do this is what we charge this group with wrestling with. i think we might want to oversample certain minority groups to be sure we have enough representation to be able to have powerful observations made possible about health disparities and certainly we will want to be sure that we've involved women and at least 50% of the population that gets study. one more thing i should say. we think of the participants in this particulaparticula r study not just as subjects or patients. they are partners. they will be at the table as we designed the study and are already at the table. that is going to be critical for defining the nature. we are asking people to be volunteers. we asked them to share information. look at outlets as well.

but we want them to feel this is an important national program being part of it is something to be proud of. >> and how long will this take ?-que?-que stion-mark a >> to assemble the cohort is not an overnight expert. we would guess this will take at least three or four years to get the entire cohort put together. we would hope to begin to learn things even before we've reached a large number. >> i want to ask you a specific question. your budget noted recently to studies have come out good one in the united states and one in germany discussing the rates of dementia are falling. that is intriguing and dead end is accurate it's very encouraging. but his nih doing to confirm whether the trends are real or not? >> senator we observed those papers as well with great interest. it was surprising. there's a reason to be skeptical about whether one can be competition which much of the

data is based upon death certificates and as we know, death certificates done after the record the cause of death in individuals with dementia. amazing ammonia or heart failure when in fact the primary problem was alzheimer's disease. the national institute on aging does have two different studies underway to try to see whether it's a rigorous epidemiological analysis, whether there is evidence to point to that decrease in incidence or whether some of this is a diagnosis issue. it is possible because there's a vascular contribution to alzheimer's disease and perhaps we do better at managing things in that category, cardiovascular disease, that might have resulted in a diminution or delay the onset. we need to know the answer to that. i appreciate you raising it. it's a hot topic in discussion right now. >> if it's true and related to

vascular admin on sunday,, that would be outstanding. i wanted to ask you since 2009 nih has been monitoring disparities between application success rate for experienced investigators versus earlier stage investigators. i mention this in my opening remark. as you know the latter experiences significantly lower success rate compared to her experience and investigators. while securing initial research grant has always been challenging, i'm very concerned much more so for scientists and physicians have just completed training command at driving promising talent from the field. can you tell us what you are doing to level the playing field in terms of experience -- less experienced investigators? >> i appreciate the question because this is something that troubles all of us. the director of the general

medical scientists were training support is to answer the question. >> we are concerned about this as well. looking at different ways to address it. in addition to targeting investigators come at critical stages renewal because if you get the system and they aren't able the new application that is a significant vulnerability. we are looking at this stage as well. is the new funding mechanism pilot which is a single rate per investigator. we think you'll be more efficient in terms of getting taxpayers more for their money and more flexible and stable for investigators and we will be just and their future bowling outing of investigative version of the pilot program. >> i think this is so important. we want to inspire people to comment if they think there's no chance only are the same knowledge as we have an aging cohort. >> there is no magic that will

really fall will really follow this as long as the budget continues to decrease because that is the fact in everything and we do everything we can to protect the investigators that there's only things we can do. >> thank you. thank you, mr. chairman. >> chairman cochran. >> mr. chairman, thank you. dr. collins icu and think back to her trip about mississippi where you've reviewed the results of local researchers of an idea program. that indicated to you at that time that there were opportunities for publishing breakthroughs in medical research among economically challenged citizens. i wonder whether the nih grant success program and process has resulted in funding that has led to great reason research for

cardiovascular diseases which seemed to target african-americans in greater numbers than percentage of population than others. what is your latest information you can provide the committee about the need for continued funding for the program? >> thank you, senator. the idea program is when we are proud of that is an opportunity for funds to be made available through several different kinds of programs. the in the cobre to states that do not have a strong tradition in terms of research intensive universities but don't have remarkable talent within their state borders. i will ask dr. lorsch who oversees the idea program because it's in his institute to say a bit of a word how the program is going. we are quite excited about it. >> thank you very much. it's one of my favorite is to

talk about. i appreciate the opportunity. the idea aims that cutting-ecutting-e dge medical research is conducted in all 50 states in the nation and the easiest way to see the program is to see what i have medical research would look like if it were not in conduct that across the nation. if you're in 25 states and if you think about every dimension of research, whether it's the questions asked approaches used to address the research questions are very importantly our ability to attract young talent into the system. something senator murray addressed as well. those things to be diminished dramatically cutting edge research were not going on throughout the nation that is why we are committed to the program is an essential an essential part of our portfolio. >> to follow up the actual request, is it your intention to make a formal request for additional funding for what is

this data is of the administration's position? >> so the idea program and the president's budget proposal for fy 16 is the same as for 15 and the reason for that if there was an exceptional increase for the idea going from 13 to 14 and we are now trying to normalize those kinds of trajectories for all parts of it. you should not take that in many ways a diminution of enthusiasm for the idea program. senator, you also asked about cardiovascular disease and what the effect has been on minorities. i can't help but say the place i often go look for the information is something you and i visited in mississippi and that's the jackson heart study. i might ask dr. givens to say a word about the status of the particulars daddy. >> thank you dr. collins and senator. as you are aware, we've made

tremendous progress in been in the curve in reducing coronary disease in this country by 70% over the last 50 years but there's still pockets of communities who have not employed the first of those advantages including african-americans in the southeast and the jackson heart study has emerged this is a national treasure and providing us with an opportunity to further understand the drivers of these disproportionate burden of disease in african-americans. one example i will give you quickly as we would recognize a great prevalence of end-stage kidney failure amongst african-americans have a fivefold more than the rest of the population often driven by high blood pressure which is prevalent. thanks to the jackson heart study advances we are making in genomics we are now discovering in funding research that is discovering the genetic basis of the predisposition identifying

genes such as the a1 gene and sickle cell trait, something previously thought to be relatively benign as important contributors to these health disparities. moreover, these pathways give us insights into how we might prevent this disease and then the curve, a key driver of end-stage renal disease in expenditures for health care in this country. they should be quite proud of this national resource in jackson, mississippi. >> thank you, mr. chairman. >> thank you senator mikulski. >> dr. collins and olympia, we are so glad to see you once again. we have talked among ourselves under the leadership of senator blunt. we would like for the subcommittee to be able to visit nih so they can talk more firsthand to see the great work

being done by the people who work there. and of course you know if you're a senator from maryland ,-com,-com ma nih hopkins and university of maryland. we are glad to see you. like dr. fauci, two new friends. then they give way to my appropriations question. the president has put in has requested $1 billion increase. i want to know what that means and is bad enough? i understand that nih has lost 20% of its purchasing power since the doubling ended in 2003 due to inflation. i am concerned that though you have more than a management capability to set rarities, you have to end up taking winners and losers. winners and losers in the united states of america. you can't dial up nih because there is a world crisis.

we turned to dr. fauci and your leadership during the ebola crisis from aids other issues and so on. you can dial up the national institute about allergies. we all share that. all around this table. but the resources you have i'm kind earned. i'm concerned only go for precision medicine, which i support, i worry about zip code medicine. the disparity in baltimore this morning between the neighborhood in which i live called roland park and a neighborhood called harlem park where they filmed the wire about two miles from our disturbances are occurring it's a 22 year life expectancy even controlling violence. 88-92. that church lady is going to make it 68-72.

i could go on about it. we've got a lot of issues here. dr. jordan, superintendent of education touch me that the 85,000 kids that went on fine on monday. 300 created disturbances unacceptable. we talked about how damaged our children are. what do you need in the school system? mental health, mental health mental health. my kids are addicted or their caregivers to date date. what is a billion dollars going to get you to help with america with what we need to do. i don't want to pick winners in the race between the 26 institutes. what is that you truly need to do the job you need to serve america while we do ours? >> seminar, thank you. very sobering indeed stories you shared about what is happening in baltimore and all of our hearts are deeply troubled and wish for the best for that fine

city. we've seen over the course of the last 12 years a significant diminution in nih ability to do research across the board and are most important research of somebody doing the work are clearly at the moment. if you thought of the reason for nausea unit graph, the yellow line but the purchasing power is for biomedical research going back to 1993 and there is the deadline between 98 in 2003. since that time the sequester added an additional severe blow to her ability to get our work done, taking a billion and a half dollars away in the middle of a fiscal year from a trip not nearly fully recovered yet to billion dollars in the president's budget would go a long way for putting us back in the stable of portraiture to read what waited a long time to be to achieve that. that would allow us to get 1200

additional grants in fy 16 compared to the previous year and that would be welcome indeed. would allow us to do things like the precision medicine initiative which as i said earlier we would want to have focus but cannot health disparities with the ability to not only get answers to causes that come up with implementation plans for intervention. >> the billion would help. but when adjusted no-caps do? >> certainly if you look at the diagram, you can see we are down more than $10 billion over where we would've expected to be if we stayed on the dotted green line the tree for nih going back to 1970. will take quite a bit to make it the ground. the other thing i may show you is the consequence of that for people trying to get research funded by nih. that is the success rate it as an investigator who sent their grades into s. is facing. going back a couple of decades

that has traditionally been in the range of 25% to 35% but more recently influenced by inflation and is a mistake team is 17% which is very unhealthy and caused a great deal. >> i don't understand percentages. what is the number? >> one out of six would be funded at this time. >> how many deer turned away? >> that would be five out of six. >> is the 200 2000? what does that mean? >> i see where you're going. the number of grants number of grains refund is about 9000. that means we are turning away about 55000. i don't think i can tell a the difference between a grant that made the cut and got funded and one that missed it because in that zone they are all terrific. we are leaving a lot of great science, maybe half of it on the table, which we have not done in past years. >> that is a stunning number.

my time is up. we have made our point. we need at least a 5% increase to stay in place and begin to catch a period >> thank you senator mikulski. >> i yield to the next republican or democrat. >> thank you, senator moran. mr. chairman -- [inaudible] i can't find my glasses. [laughter] >> before he finds his classes. >> i think we're just in a parable. >> i was trying to think of how to do that. i want my 30 seconds back. when we get to one minute i want to switch to a redtape talk at -- topic. i went to the precision announcement that the president

made that demonstrate support. senator murray and i are incorporating the president's proposal into one of top priorities of the health committee which is our innovation effort with which we are working with you about. how important what a properly functioning public contact medical records system be two-year effort to develop a cohort of 1 million individuals so that you can sequence the genomes. >> senator, we are counting on being able to utilize the records to make this possible recognizing that the present time there is a lot of work yet to be done in terms of having thus become interoperable. the faster we get that going from and that going come and easier applebee's to do. i would assume you mentioned clicking the mouse if you're a doctor prescribing a menacing,

you want to find whatever the genetic information is if it isn't operating while. is that right? >> exactly. doctors are a bit frustrated about it. >> your institutions vanderbilt, has been in the league and looking at ways to make the system optimize which is one of the reasons we bring our next workshop. >> they do a terrific job within vanderbilt. we are going to work on that and the administration and senator murray and i are setting up a working group to identify the five or six steps we can take to improve the electronic medical record system. we are working with you on that. today you and i visited last week, on the same day dr. victor came by who i'd never met which was interesting because it sets that are very committed to the view that parallel effort to one

public, one private. he said to me his to me is instituting california plans to identify a million individuals in sequence the genomes. based on the experience that you had earlier when you are working in parallel, side-by-side is there anything comparable about what he's doing and what is planning them what you are planning? is there anything to learn about collaboration? that is a lot of sequencing. are they completely separate or do they now? >> are wonderful ways to make this a collaboration. i ran into him in the hallway and i've been in touch with him repeatedly over the years and recently made a plan to visit his human longevity institute in california. exactly what his plan is in terms of who can million people are he will be sequencing has been fully emerge. everything is a bit of a work in progress, but i promise you there's so much to be gained

here by working the way that this can be collaborative. one thing we will be very clear about what the public object once again as we want this to be a project for scientists, researchers of great ideas are able to get access to the data as quickly as possible as this would be incredibly valuable as a resource amount will be an important part. >> but it's an interesting development and huge. i mean a million individual cohorts. has that been done before? >> no, not in this country and not anywhere. the british have a half-million, but we have to be bigger. the british cohorts will also link up with and learn everything we can because there's a great opportunity for international collaboration. >> but we are fortunate to have the robust privacy to that also

is ambitious and so will be interested to learn over time whether the cynical of the ration. now let me switch to redtape. you and i talked about this in the office. what i want to invite you to do is submit to the committee that senator murray and i chaired cochaired. we'd be interested in your list of regulatory obstacles or administrative obstacles that make it harder for you to succeed. you mention you would like to have the money be appropriate for one year carried over to next year like other agencies do. you mentioned the amount of paperwork for scientists to go to conferences. he mentioned five or six or eight or 10 other things are some of them has to do with what the office of management and budget requires i assume, but some of it has to do with them as we do. i would like to invite you to get the specific recommendations

and see if we can fix them. the project without going to to have a law passed in the malawi we could include these things. i would like to include in that whatever we can do about the national academy of sciences finding that 42% of the time investigators fanned out a grant is on administrative work. you had $24 billion for research to universities and if we could reduce 5% to 10% the amount spent on administrative work data suggest a billion dollars. senator mikulski was asking about a billion dollars. there is a billion dollars used from a raise. i simply invite you to work with us on not. that would double the amount of money available to you. >> i would be glad to submit a to submit a resume for shia leader and senator murray are doing that this project because

this could help us a lot getting obstacles out of the way. >> i said double-team unavailable. >> you've got 30 seconds back in a little bit more. everybody is doing a good job trying to hold their time will have time for second time around and we would like that information when you put it together for this committee as well. senator durbin. >> chairman blunt, thank you very much. let me say at the outset, gathered in this room at this moment are the key players in the united states senate when it comes to this whole issue of medical research. senator alexander is chairman of the house committee, whatever the nominee creature is these days with his ranking member, senator murray. senator blunt is chairman of the appropriations committee again with senator murray. my overall chairman of the committee thad cochran and the

defense subcommittee which i serve on his ranking. we have an opportunity here. we know american people are skeptical if not cynical about who we are and what we do. my guess if you had to pick one hearing room on capitol hill this morning to virtually every visitor in every family would be interested in hearing what is going on. it is this room at this moment. there is that one of us who is invulnerable to some medical diagnosis that could be life-changing. we pray in the eye of the doctors say is there anything you can do and say you are in luck. we have a new tribe, a new surgery, new approach. can i suggest to my colleague on both sides of the would not be significant in our lives and history of america if we decided to be the driving force to make searching we made a statement once and for all about no -- biomedical research rather than that it be tossed about by the

winds of budgets year in and year out. i look in her defense appropriations subcommittee and i chaired it for you and tend to focus on medical research in the department of defense. first year we increased 28% in the second 11%. i contacted dr. collins inside are we able to make this so that the flagship nih can work with the department of defense cdc department of veterans affairs, even department of energy to make certain we move in that direction. if i ask a question, i hope as we think about an infusion of oco fun from a strictly limited to the defense department, that we kind of stand her ground and say it won't be limited. there are things that need help and this is one of the time we want to put in our bed and make our stand to make sure medical

research starts moving forward again. dr. collins suggested a couple years ago 5% real growth for 10 years. i wish we could do more. i urge everybody gathered in this room as the people who can make the decision in the united states senate. i hope we can reach that point. can i ask you dr. collins, congratulations have been chosen as the irish-american hall of fame saturday night. congratulations. a record made in this research going on across the federal government, medical research? >> thank you senator. i think i can say with considerable detail and confidence that we are. you mentioned interactions of the department of defense and you and i spoke about that and we went back and looked carefully at our portfolio and there is to identify whether there were areas that were duplicated and we did not find

duplication. we found synergy. we found great examples of places for a particular problem was getting funded both agencies but in a way to cover different parts of the problem. we were also looking more closely than any time in history between asians dislike fda cdc where we just recently last week had a meeting of senior leadership and with darfur where we are working on a whole variety of interesting ways. i am carrying with me today three different organs on a ship that is a blood trade barrier by the way. this is a kidney and this is a lung. they are all taken advantage -- just happen to have that here. that is a collaboration trying to do basically a lot of human biology on a chip to enable us to test new drugs will for instance, to see whether they are toxic or not.

>> i don't have time for you to give an adequate answer, bsg is visited by a well-known baby and barbra streisand who was pushing for this area to make sure women are included in heart research trials that she believes adequate attention has not been paid in this area and some believe that. we are thinking about the appropriate diversity and testing to come up with results that help all of us across the country. i totally agree with you. i've also met with ms. barbra streisand and she's an important advocate in paying attention for the needs of women's health. one is to insist that people funded by the nih lucky not models have to study males and females. traditionally many have studied only one back and that is leaving out a lot of important insight. >> thank you senator. >> dr. collins come i could see

a earlier, but i couldn't see what was in front of me. thank you for you being here, my colleagues. you were in my office late last week i guess the lesson we had a conversation. i want to ask you to follow up on the conversation if someone can humbly give you an admonition, i tried to give you one. you talk in your testimony the stewardship initiative that nih. in my view they are related and i want you to tell us again in more detail about what you're indicated in your testimony about stewardship that nih but i want to reiterate what i indicated in my office. many groups, people, individuals, folks afflicted by every disease asked members of congress for help that nih to find a cure and a solution to their health and their lives. we have taken the opportunity to do for her to nih to make decisions about prioritization of medical research.

the theory has been before i arrived in the senate and became involved in this issue. the theory has been signed to should make the decisions were the most promising opportunities are in finding the cure for the treatment. what i want to know from you since you are fulfilling their responsibility that nih in the absence of congress direction about where to focus the dollars that nih is making the best decisions possible to find the cures that are the most readily available in the most demanding buyers to defend and the population of the world. ..

we have, in fact, quite a vigorous plan in terms of how to put forward those stewardship initiatives. one is to develop an overarching nih strategic plan covering our entire 27 institutes and centers, each of which has had its own strategic plan but we've not had those synthesized into an overall document i can provide our decisions. will submit that by next december. we also can use new methods are actually much more sophisticated than what we've had in the past to do it for photo analysis and

see exactly where are our dollars currently going are there gaps, areas where we are piled up things integrator proliferation in some spots and not enough and others quacks we are going to look closely at our portfolio of hiv/aids research and see whether, in fact, now that it's 2015 we desperately need to find an answer to this disease and end of this epidemic. we need to focus particularly heavy on vaccines, on new forms of therapeutic, are potentially secure come on comorbidities. women active grant my grant review of our hiv/aids portfolio to see how that matches with the priorities that should be most appropriate at the present time. we are going to make sure we have best practices for half an decisions are made within the institutes because peer review is part of that but not all of that. we have to make decisions based upon scientific priorities that our councils and our directors are responsible for. we want to make sure making the most of those opportunities.

we will continue to look for partnerships so as much as possible we can find other dollars besides the nih dollars to pursue important scientific projects with other agencies or with the private sector. we will focus intensely on early stage investigators which have been raised as a major issue and one we are very concerned about, how can we enhance the opportunity to give this early stage investigators the confidence that there's a clear path for them and they can take risks and innovative research without fear of losing support. and as was mentioned by senator alexander we are going to look closely at administered a burdens, many of which we don't control but for the ones we do have some say over we will try to do everything we can to reduce those and give scientist more time to decide instead of paperwork. that's a partial list of what is quite a vigorous array of activities but i want to assure you very much from my own personal commitment here that we are taking this with great seriousness. we don't expect people to say

you were just nih so you deserve dollars. we additional using those wisely and that every dollars been put to good use. i would much more to say in the coming months. >> i think ensure from senator durbin and every member that's spoken, we're interested in finding additional resources we. we understand that this issue cannot the result only by your deficiencies but as we find those additional dollars issuance that i am looking for is adjective had the capability to make the decisions where those dollars contest be spent for the best outcome for the health and well being of our country. i thank you for your answer. >> senator schatz. >> thank you, mr. chairman. thank you dr. collins. i've become increasingly interest in telehealth and i think there's a number federal of federal agencies doing great work in this space. the dod and va come to mind. i think cms us more to do. some of that has to do with

their statutory challenges and some of that i think they could push their authorities a little bit more. i know the nih is doing a number of research projects. i wonder if you wouldn't mind taking a minute or two and letting us know what you're up to and what you have found. >> i appreciate the question. many of the institutes have investment in this space. more recently which only emerged as an even more hot area and a very promising one is the idea them health, using cell phone technologies to make this even more transportable where people are walking around with their own potential telehealth the gadget in the pockets. that's good bit of a significant part of what we want to test in the precision medicine initiative. i can think of a telemedicine application, i instituted using to try to assess with babies in the newborn icu which of those are developing a retinopathy by basically taking photographs and density veteran expert across the country tuesday this baby needs treatment, that one doesn't. dr. gibbons has a telemedicine

application for asthma as a recovered they want to say a word about that? >> does. this. certainly would've areas of concern with asthma, a chronic condition affecting children relates to be able to transcend those geographic barriers where there's a particular problem. a lot of times it's getting a sense of the child's symptoms and course of disease. that's where there's an opportunity dr. collins alluded to to use leverage technologies that enables that information to get to the experts necessary to manage that care. other technology that actually exist on a smartphone now. they're able to assess the breathing capacity of the child. we have a program that we are funding leverages resources that are local such a schools where this information can be ascertained, the child's symptoms and disease course developed, and the treatment again transmitted into local environment, leveraging those local resources.

we are looking at using these new mobile technologies in different ways to enhance care for both the children and adults. >> let me just make a small point about telemedicine, telehealth. this has been something people been working on for decades and as a result people think of vtc or telemedicine center-based delivery of care and i think it is entirely possible that for at least some treatments that the mobile phone just sort of outpaced all of that. i want to make sure when we do national health policy and we do our appropriations and we encourage you to do telehealth that we are not conceiving of a sort of 1995 center for telemedicine that we are enabling people to get health care that they need through their phone if a complaint and all the rest of the. it's important to say because it didn't we've got a statutory infrastructure and some inertia

that is based on what was possible 10 or 15 years ago speak i'm glad you pointed to separate i think our nih proposal has shifted dramatically in the direction of m-health using cell phone technology which is bursting with potential for whatever thing, either for maintaining health or for perhaps using this target chronic illness. many of us know walking around with a wearable sensors. i have my feet of it. colonel coming of the people who have something early modern their physiology that such great opportunity for medicine we are all over that -- fitbit. fitbit. >> i think will come up against the question of scoring. i think with respect to medicare reimbursement for telehealth services there's an ongoing discussion of whether or not it will increase total cost to the system. my strong belief is that it will decrease total cost to the system. that doesn't mean cbo scores it accordingly and i'm just wondering whether you're doing any research that gives us any

insights to what would happen to the total cost within a health care system utilizing m-health? >> we are interested in rigorous study to assess whether m-health applications are improving outcomes. there's so many potential applications that are out there that people are excited about but many of them have not really been put to a test. in order to decide whether you're achieving any cost savings first you have to figure out did this application actually improve the long-term outcome? did you reduce illness? did you manage it more effectively? that is very much in our sweet spot in terms of what we're trying to support. >> thank you. >> senator capito. thank you, senator shots. >> thank you. i want to thank the panel. this is very interesting to everybody. i decided a quick comment about the idea program a dr. lorsch obligor in charge of come to our institutions in west virginia are the recipients of grants of

like to invite you to join in west virginia to show what's going on and what the possibilities are there. >> i would be absolutely delighted to come. >> that's a good deal. my real passion here in the area is alzheimer's. both of my parents just recently passed away. both of them with increasing dementia. i'm going to go back and look at the death certificate as the cause of death because when you said it may be decreasing my eyes all stopped out of a hit because what i saw just on the ground i can imagine that's the case. and it could be just poor data. i hope i know you're getting ready to revise the research milestone for the national plan. could you talk a little bit about that, what nih is doing in that area and? >> so all's i was disease is of intense focus, and has of course

enormous consequences. we need to find answers here. 5 million americans currently affected. the cost personally to those individuals, to the families is enormous. the economic costs we know is approaching $200 billion a year just in the united states. we so we need to find ways to prevent or delay this disease, and there's effort across many different parts of nih deducible led by the national institute on aging. is extensive very basic science studies trying to understand what's actually happening in the brain that leads to the deposit of these proteins amyloid. and interesting recent developments has been what's been called alzheimer's in a dish, namely the ability to take stem cells at an appropriate cocktail to convince them to become neurons but dementia petri dish but not as flat sales but in a three-dimensional space

with act more like they would in a normal circumstance. you can actually tell the difference between those cells if they came from somebody with the dominant form of alzheimer's as opposed to a normal person. that is an enormously powerful development because it gives us a chance to look in human cells what's really going on in a way that doesn't put people at risk and allows, for instance, screening drugs is a which of those might be more promising. that's a basic part of it. on the clinical site i think just a month ago the report by biogen of what appeared to be a possible positive result, first time after dozens of failed trials, from antibody directed against amyloid has gotten a lot of people interested in whether we might be onto something. very small trials can only about 300 patients. he wants to be careful because it's so easy for those pics not into being replicated by the initial excitement is certainly

something with cautious cautiousness people are feeling a bit more optimistic about. one thing we are doing is to partner with industry in an unprecedented way. >> is that the excel written medicine partnerships because it is. it involves 10 pharmaceutical companies. and i personally co-chair the executive committee of that group and we've only been at it a year and we're ahead of the schedule that we thought would be possible and also showing some considerable promise all the way from the basic to the clinical. so i think we we're on a roll here in terms of tackling what has been for most of the years we've studied it, and really frustrating disease. were starting to get a much better handle on what is going on in the alzheimer's brain. it's clear one thing we need to do is to start early before too much damage has been already been done to the brain. so i assure you this is an intense area of focus. >> i would encourage that and will be a great supporter of

that. i just anecdotally read an article i believe in the sunday paper about a clinical trial or a small area i believe in south america that identified, they had a pocket of early onset alzheimer's in the '40s in the '40s age bracket very interesting to me because it mentioned some of the same things you mention. >> that's an nih sponsored trial inin colombia for a family that assembly inherited from of alzheimer's. >> could learn a lot from the spin and they are involved in a very significantly in these clinical trials. >> the interesting thing for me having lived through it with two parents simultaneous account is not the same for every person which would i think makes it more difficult in terms of researching and figure out how to attack it. there's a a lot of families across probably everything sitting at her today and any audience has been touched by this. thank you for your work. >> senator baldwin. >> thank you, mr. chairman. thank you and welcome. i want to start asking some

questions about chronic pain, opioid treatment and alternatives are so let me just give a bit of context. we know that chronic pain is a condition that affects over 100 million americans, and for some individuals prescription opioids are important part of a treatment plan but it's also clear if you are following any of the trends in the nation that we're in the midst of a national crisis as a result of significant overprescription of opioids and misuse. dr. collins you'd recently stated and i think a blog post that when it comes to chronic pain, opioids are not always the answer. and speaking to the lack of evidence, well, let me see what did you say?

there is an absence of unbiased scientific review to examine evidence of the safety of long-term prescription opioid use and the impact of such use on patients. floodlight to talk first off just to questions related to the. first as please tell us about the collaboration you're doing with the va on inquiry into alternative pain management strategies not just for physical pain but also also ptsd. and then at what time yet remaining if we do what potential as a research on the effectiveness, i'm sorry what does the latest science tell us about the broad use of opioid to treat chronic pain and would have been a doing to advance our

scientific understanding of pain management? >> thank you senator. this is indeed an enormous concern and enormous public health problem, 17,000 people lost their lives last year to opioid overdose. most of those unintentional. the number of prescriptions written for opioids is visiting. adds up to basically one prescription per american per year. that doesn't sound like that is what we need to do in order to deal with the problems of chronic pain. it is, in fact, the case that studies done, then done obvious of opioids and chronic pain generally have not been carried out for more than four to six weeks and yet oftentimes chronic pain goes on longer than that so there is a lack of data. the data we do have certainly would does anybody to conclude that opioids are probably not a good choice for chronic pain and less is associated with severe tissue injury as in the case of,

say, cancer. so we have a lot that we need to come up with in terms of alternatives and that's what the 13 projects we're doing jointly with the va and we in this case at the national center for public and integrated health and the national institute for drug abuse, working together on this. i think they're trying to assess for various types of pain, particularly if it's what you might call central pain coming from conditions associated, for instance, with ptsd or the use of a drug like an opioid which is better suited for peripheral pain just doesn't seem to work and, in fact, carries a lot of risk. the alternatives such as antidepressants, cognitive behavioral therapy, interventions that involve something that might seem to age but actually seem to have some value to a lot of people. yoga, all of those things look at as alternatives to putting people down a very difficult path of opioids which may lead into addiction and all the

problems associated with that. meanwhile, the nation as a drug abuse is deeply engaged in looking for other alternates for pain management that are not addicting. coming up with opioids that can't be abused because they can't be injected. all of those are high priorities i traveled to atlanta this year as i did last year along with doctor volkov who's the head of the national drug institute to the summit at hal rogers chair of appropriations in the house runs every year that their way thousand people there from all over the country working together to try to tackle what everybody now sees as a major and growing health problem in the u.s. we will do everything we can to help with that. >> ii have just a couple of seconds remains a i hopefully have you follow up in writing but one of the highlights that you focus on in your testimony was shared priorities to improve

opportunities for the next generation of innovators and researchers across our nation. and i know that you initiate and we've talked much about the initiation of a number of policies to promote the researchers. we've identified a significant gap in the data on existing research workforce. and we have a lack of comprehensive way to track the success of the careers of researchers. i have been working closely with you on my next generation researchers act which would ensure that nih accelerates current and new policies to address this and foster new researchers. so let me just say that i would like to hear more about why we don't have a good system in place already to track this information on our biomedical

workforce and what additional steps in the age is taking to address this gap. >> i think we'll take that for the record or when we get to a second round, if senator baldwin wants that to be a question, that would be great, okay? senator cassidy. >> gentlemen, i'm a doctor i know so much of what you all have done. dr. fauci, in 1985 when i was a resident at l.a. county hospital, the diagnosis of aids was a 100% since. naddi take your medicine you are more likely to die of alzheimer's and aids it seems. so thank you all from the guy who has seen firsthand what you have done. i want to build upon that which senator moran was saying. when you said dr. collins that the report will be available next december, do you mean 2015 or 2016 in terms of rebounds in how are spending priorities speak with that will be december

of this year 15. >> is an article from 2011 suggesting the variable determining fun with the supposed life is adjusted and that accounted for 33 or 39% of the variance and there was no other correlation. but other factors will you be using to determine whether or not you should rebalance funding on how you should rebalance the? >> so generally, we look at a public health burden and it is very well established way to do that. we also look at the scientific opportunity because it's not going to be successful to throw mud at a problem if nobody has an idea about what to do about it. we look at what our peer review process is telling us about the excellence of the size. >> to a certain extent, i don't mean to interrupt, i've got four minutes, choice certain extent though there's a certain sort of the past is prologue on that approach. when i look and i would just

tell you my concerns to i look at, i've done some back of the envelope figure. we do look at this for a while. image of the work being done for a vaccine for hiv/aids. the best i can figure we're spending $400 million for that and spending less than 600 million in total for alzheimer's. overages a vaccine aspect of hiv/aids week i spent two-thirds as much as we are for alzheimer's. on a birthday of purpose can begin back of envelope so you makemay tell me it's wrong, we're spending about almost $190,000 per hiv death, and we are spending $5700 per alzheimer's death. 10% over budget on hiv/aids 1.9% on alzheimer's. i can go down the list. imap ecologists other similar numbers where we are spending as an economy for alzheimer's come we're spending to you mentioned $200 billion a year, for liver disease 51 billion a year and

for hiv/aids all categories 16 million to you. there seems to be a total out of whack in terms of the burden on society death dalis. spent i think our goal is to end of the aids epidemic. we are not there yet as you know. 50,000 cases every year. >> on the other and if you look at the incidents of the disease is far more incidents right now all sides than it is of hiv. means of preventing hiv is well known. vaccine would be the holy grail. so are we going to wait -- i guess my question is, we've got visible the note on alzheimer's 200 billion climbing. are they going to wait until we figure out a vaccine for hiv/aids before we begin

shifting to the new battle? do you see what i'm saying? >> i think i do. and again i want to assure you that we are looking with a more scrutiny than ever at the hiv/aids portfolio. i should ask dr. fauci to wait in your since he is the expert force spent i sorely understand the point you're making but if it were the other variables that was not mentioned when we talk about dalis in scientific opportunities is the billy or not to completely and something. and i think when you're dealing with an infectious disease that has epidemic and pandemic aspects to it but to a different store in some respects from other diseases which are equally as the series as devastating an impact on society that don't have the potential to actually be completely ended the way we did polio in this country and the way we did many other infectious diseases. 's although i fully understand and actually appreciate the

point you're making i'm looking forward to a time when sitting in front of this committee and we ended the aids epidemic and it won't be any argument about what you want to do with my because you won't need the money. >> i accept that and that's a good point. but does that mean we increasingly consume because i think and 2011 the budget for hiv/aids was about to .5 billion, 2.4 billion now it's almost 3 billion. and so we have to set priorities. listing 300 a year from 300 billion a year on alzheimer's dementia and would be great if we could -- spending $90,000 per death rate for hiv/aids and 6700 for alzheimer's seems like a prioritization which doesn't reflect that we're spending 200 or 300 billion a year on. do you see what i'm saying? >> i get your point but also to

get the point of the table is easy to the kind of calculations of how much money you would save per hiv infection prevented and you do the math on that, you're talking about even a vaccine that isn't the best vaccine in the world at 50% effective we would save about $6 billion a year just on that. so those are the things that we are aiming at to get the point of what to make is that when dr. collins was talking about looking at the portfolio, one of the first important steps if you look at the portfolio itself and then say within the portfolio are we actually spending money on the most high priority within that, and make that as the first shift, and then take a look after that and determine about the redistribution. so we are looking at that and taking it very seriously. >> i would over. thank you for indulging. >> thank you.

senator lankford. >> and 91 wrapup question on the alzheimer's issue? i appreciate the conversations ongoing and this is one of a multiple diseases that have a tremendous expense diabetes, cancer, alzheimer's goods in a great deal about financial cost campaign across the entire country. last year congress passed the also most accountability act which required a report and to be able to get a budget estimate together what it would take the wind expected to be complete? >> i appreciate the question. yes, this was an act which folded into the omnibus bill which basically asked nih to put forward was called a bypass budget for all so much research as we do now for cancer. and the instructions are such that we are to have the first version of that by sometime summer in order for that to apply to fiscal year 17. we are on track to do that. i should say we will in the next 24 hours issue a new set of recommendations about alzheimer's research based upon

the sum of we held in february and the synthesis of those recommendations and that will be coming out tomorrow. >> i will look for to going through the report. i am like many people in the dice, i watched my grandmother do the long goodbye and with a walk through this. my mom term as parkinson's. >> if i made because we have this conversation about alzheimer's and aids i would say we've actually increased alzheimer's expenses 2011 by 40% more than any other disease and nih portfolio specifically because of the scientific opportunities and enormous public health and the. >> senator schatz was talking about telemedicine, which reinforced some things. report to do with the cms on the building process but let me the one caveat this is not to belittle them at also not going to that of somebody that's not to the census bureau in 2010 spent $3 billion developing a

handheld device to do the census on and at the end of it had to punt so we lost $3 billion on a handheld device to a consensus that eventually they would back to pen and paper onto. as much as we can just go technologies and allow the private sector to take the lead on that and make requests of it, please continue to do that. i don't nih has done that a tremendous amount but don't reinvent the wheel. >> i'm totally with you. with this precision medicine initiative there's enormous interest from private sector developer of these areas m-health apps. with no date i think about any of our own because you are chomping at the bit of errors tried out in this large-scale studies. please press on with it. but as a general question that we've seen an increase in the cost in drug and device development over the past several years to it seems to continue to accelerate without a cap. can you help me understand what is driving the increase cost between basic research and clinical research all the way from the time of concept to the

time of actually getting in the marketplace, what are the key factors you see that increasing the cost more than anything else? i know it's not only one thing but if you can get a couple of ideas what we should watch for. >> about abbott is a high failure rate and that is in fact, very troubling when you consider how rarely i get about a new drug makes it all the way through to the fda approval. it's less than 1% of the time. all that cost of the failures have to be added into the overall enterprise. one of the things were doing at nih to try to help with this is the formation of the national center for dance and translational sciences which aims to identify some of the places where failure happens, where bottlenecks occur and develop new technologies in concert with the private sector to see what can be done about that. i mentioned this idea of human cells on the chip as a testing drug toxicity instead of using animals in this is looking like it may be going to work and i would be a big step forward as one of the places or things get balled up in to work with the

kind of is this whole idea of precision medicine are instead trying to develop a blockbuster drug and find it doesn't work when you apply to thousands of people, you identify the subset of individuals for whom the drug is particularly well-suited. you in a much smaller trout and you have a much better chance of success. the cost goes down and approval gaza. those are all things in the works but i share with you the concern we've got to turn the curve around. >> is there anyone spot they would identify that gc cost increasing more than anyone areas ago some concept to actually distribution? >> boy, i guess the clinical trial of course is the most expensive part when you look at where the dollars we start to build a. if you have to do a clinical trial of thousands of people involving over a period of time that is going to be very expensive. we had to come up with ways to give smaller trials that biomarkers to allow you to the drug is working to waiting for five years to see what's happening. those are high priority.

>> thank you. >> dr. collins, i wanted to ask you about your opinion about some work i've been doing to drive this senate appropriations committee to have one unified federal electronic health record between dod and va. my hope is to make sure that using the 25 million patients that the va has and the queuing patients that dod has we have one unified record. my hope we have this all with open code and open source to repeat the success that motorola had with the android system where they had 70,000 apps from industry that was written into the open code of android. could you give me a comment on that? i will be coming to you with a stroke and consortia that we're putting together across illinois with five hospitals, including

barnes jewish, which is particularly good at working with nih. >> well, i'm really, my hat is off to you for what you're doing with dod and va to try to make this into a seamless electronic health record because i know people in the service are anxious to see that happen. it's been difficult i think sometimes with those transitions. this all fits together actually with a broader effort to try to see if electronic health records that are being collected on all of those can be made more interoperable so that you can walk around in one state to the next and have your health records accessible when you need them. there is in our precision medicine initiative a great need for this electronic health record to be usable in the best way. we are working with the office of the national coordinator for health i.t. on that very issue of meaningful use. the white house has a new chief data scientists who is working with us on precision medicine

but also is involved in the dod the efforts to electronic health records to talk to each other. you would think this would be easier than it is to it's actually quite a challenge because of what and which health records are not standardized what information intent is often textbased and, therefore, difficult to do easy melting speed i will interrupt you that i put forward kirk's pretty good plan, that all imagery be jpeg and all documents be ms word. because those outcomes could advantage certain providers out there. my vision thing is because of va represents about 10 times the patients that dod has that we go with va standard that dod tries to cut its own rug. >> i really appreciate your idea of a pretty good plan because right now i think the perfect could actually be the enemy of the good. but we need right now is something that's good enough as

opposed to what we have. this whole idea of the blue button what individual to get their own electronic health records would be enormously beneficial it was actually seamlessly reduced to practice. >> thank you senator. on two or three points and then move on to the senator murray, on the stewardship discussion the strategic plan i want to be very supportive of that. i think that's a major announcement on your part. as i did the announcement, the 27 centers you currently have have their plants but this would be the first time this sort of evaluate and try to prioritize where you ought to go as you look at all of those 27 centers to really come up with an overall strategic plan. do i understand the critics because that's absolutely right. >> angelika that available by the end of this year?

>> by december yes or. >> i want to encourage you to do that. i'm supportive of the. i think your efforts there the questions are better off by you frankly to start with. you've got those 27 plans to look at it. you've got the forum to hash that out and have they entered argued that you need to have about why this is maybe a bigger priority than that, including i see this as responsive to the discussions that you and on and you've had with many other members of this committee about let's sit down and hear from you about how to really prioritizing this. on the alzheimer's discussion i think in the bill last year, the objective was for you to have a plan that would reach they go by 2025, and that goal was what? to have a cure for alzheimer's? >> or a delay in the onset. a major advance in terms of preventing or delaying the

onset. >> we should expect that report by when i think of aubrey said, francisco i'm sorry i didn't -- >> entrance of over asked for specifically in a new piece of the omnibus is not only a plan but it bypassed budget of what we take to get there. the plant itself gets refreshed every year and will be a new version of the research plan tomorrow. but we also been going to attach that to an estimate of what it would take to accomplish that because we've been asked to do so by the omnibus language. >> we will be seeing something tomorrow speak what tomorrow you you see the outcome of the summit on research that was held in february any people from the u.s. and outside the u.s. to really nail down what are the highest priorities right now for research into space. this'll be the second time we've had such a summit and this is a major refreshed about the research agenda is. >> i think the precision medicine discussion, the brain

discussion at a strategic plan discussion probably making the news for today arbitration or the bit on why cant you tell us today what you're going to tell people tomorrow. but i look forward to that tomorrow. i've been very interested in how we prioritize mental health or bring it to the same level of all other behavioral health to all other health issues. the statistic that i believe is generally use now and always in the age is sort of the source is one out of four adult americans have a behavioral health problem, a diagnosable behavioral health problem that's almost always treatable if it's diagnosed. is that number still a good number? do you have a better number we should be using? >> i think in this case we can focus more on those who have the most disabling are what we now call serious mental illnesses. that's more like one in seven or

one and nine come something like that the total number and to about 17 million adults. out what's critical to remember in contrast to the we talk about for alzheimer's disease, these are diseases chronic diseases, a young people. so 75% of that number have onset before age 25. that makes this a particularly challenging public health issue. >> we offer senator mikulski is the story earlier today about when talking to people at schools can what's the single biggest thing we could do to help. obviously, right in the area that you are working. what about the other number? if one out of nine is debilitating or serious, what would be the bigger contextual number of behavioral health that's diagnosable and treatable? treatable? >> across the board about one in four is the number that we think about across the lifespan in terms of people being affected.

>> in the defense, the armed service committee i was on lester, armed services as opposed to defense approach but i made as of this in one of those two could i ask the surgeon general in the military if they thought that one in four statistic was how to apply to people in the military at the answer i got was we don't of any reason to believe it's not about the same we recruit from the general population about the same. what's been happening in military as it relates to how we deal with behavioral health problems? >> as you know the suicide rate in the military particularly inactive duty has gone up significantly, doubled, surpassed the civilian rate for people in the same age bracket. it's beginning to come down slightly in the last three years but we've got new numbers just in the last couple of days it's still up there, still i. and dod and especially the department of the army have been very great focus on how to bend the curve.

we've incurred -- working with the biggest stars project with over 100,000 soldiers over the past five years in the project has given us a much better sense of how to focus their efforts on those who are at high -- at highest risk. >> i wanted to ask you while you're here, i was no is a very exciting announcement by nih, to be exciting, last week that one of the researchers or semi-researchers were able to use fda approved drugs to activate stem cells in the brain to actually repair damage caused by multiple sclerosis. that is was excited because as we all love to know we haven't been able to repair damage after it occurred. i want to ask you while you were here can what's the next step on that? >> said it was an exciting finding. basically the national center for advancing translational sciences, in capcom has visibility to take any kind of

assays that you develop as critic as all the drugs are quickly. if you can find a circumstance we have a disease like multiple sclerosis was that that that a drug is on avastin user of the things that has activity can quickly jump across many different hurdles to get to the clinical outcome which will eventually need to see happening for multiple sclerosis. so the investigators supported by the neurology institute did that screen using the kinds of cells that make my which is the stuff that isn't to provide insulation from nerves and were able to show an apache dish there were two drugs in the fda collection that seem to show benefit in terms of student themselves to make the mind and which is what you want them to do. that means the next it would be to think about how to move this into human clinical trial for one of the drugs is antifungal of all things. the others steroid need of those have never been thought of in this circumstance.

we are excited about that. i might also say there's another exciting for multiple sclerosis research on in the last month. dr. fauci's institute support an effort maybe things are good for something about that. >> thank you francis crick a study that dr. collins is referring to that we funded, it wasn't analogically-based study was from our immune tolerance network which was very exciting. we took 25 individuals who have multiple relapsing multiple sclerosis and performed autologous stem cell transplantation preceded by very aggressive immunosuppression in the same way do you give a stem cell transplant to someone with a neoplastic disease. as it turned out to our great surprise and gratification the numbers were extraordinary, 80% of the 25 people in the trial went into a remission in the

sense of none of that multiple relapse. and has been followed now for three years, which is really quite impressive and although we always have a caveat at the end of relatively small 25 but 80% of 25 is really impressive. so we are going to break aggressively pursue that approach. >> i am very excited about that. thank you. looking forward to more on that. and, finally i would just note we been here almost two hours mr. chairman and how times change. 6.2 this entire discussion would've been on ebola. no one has asked about that today, and that's either good news, but we don't have to worry anymore or it's the site of the times that our attention span is way too short. candy just updated really acquitted on the status of clinical trials to test candidates on vaccines and therapeutics? >> dr. fauci? >> thank you very much for the question. it is good news. good news in the sense that from a public health standpoint the

numbers of cases in west africa have diminished dramatically. there hasn't been a case in liberia and almost 40 days which means that the country of liberia very likely will be declared people the free very soon. liberia cases are down. dini is the still smoldering and as we always say you cannot claim victory until the last case is going and we are not there yet. but from a research standpoint or a couple of trials that are going on now that we are very pleased about that one of the therapeutic will talk of the therapeutic will talk of which are taken to the promising of the multiple excremental therapeutics against ebola and launched a randomized and full trial involving centers of action if you're in the united states and we went over on patients data we had recently released healthy following ebola was on trial as well as in the west african countries. we now have 12 people on the trial. there were 10 of them in sierra

leone, one in library and one in the united states. in addition the randomized control trial of the nih vaccine developed at the vaccine research center together with the vaccine develop in collaboration with the canadians as well as an american company as the medevac has been launched in february and when i've completed the early phase two trial of about 1500 individuals. good news is that it is safe. sat study that we did in bethesda at the end age and it is still a spring has proven to be the case in west africa. no adverse signals that would be caveat to stop the study. but importantly it is inducing kind of response that you would predict would be protected because it matches the monkey response. that's no guarantee that it's going to work but that's very strong indication that it is likely to work. i think that's complicating it, senator, is as we are launching the trial, good news is that infections are going down.

so it might be difficult to actually prove on an incident basis that the vaccine is actually work. but every indication that we have from the standpoint of the kind of response that is inducing suggest strongly to us that it will work. >> thank you. thank you very much for that and thank you for all of you for working on that. >> senator cochran asked no questions right now. senator cassidy. >> dr. insel until everybody, i become a major mental illness is so drastically under address in our society. in that same article i referenced earlier, 2011 commit said that those things that were overfunded dimensioning eight and a couple of other conditions, that which was under fund was depression as one example. so first if the criteria by which going forward they will determine funding levels includes the possibility for clinical advance, i'm asking, i

don't know, major mental illness, is that something in which increased research dollars will be more likely, is there potential for that major advance that would help a child with schizophrenia? you see where i'm going with this. >> of course. and i appreciate the question, senator, and there's no doubt that greater investment will give us better returns. and this is an investment not a cost come on our into. to go back to your earlier question, i just think we need a friend is a little more broadly because one of the issues we deal with particularly entity but schizophrenia or depression or bipolar illness is we don't know enough about the basics. so a lot of we talked about we talk about the dollars for dalis or look at the disease burden is based on what we're spending on a particular disease. but you should understand that perhaps half of our budget goes into the fundamentals. i am so totally integrated with you. effect when my frustrations it

almost seems if we're going to find things which have been successful we almost are saying we're going to find things they previously funded, as opposed to maybe we need to fund some things we never have before because otherwise we would never get to the point where we are successful. >> that gives the opportunity to push for the brain educated -- >> totally would but it looks like the one that is underfunded. it seems like there should be 3 billion going to the brain initiative. in your documentation you mentioned $300 million the society spends upon mental illness. does that include alzheimer's or is that independently -- >> independent of alzheimer's. >> so we have 300 billion on -- >> schizophrenia, bipolar, depression. >> that's just flabbergasted. by the way in my prayers work i did a lot of work in prisons and have learned that jails and prisons are the noble and studied to treat mental illness. if you include if you do that number will be drastically

higher. >> absolutely. we are trying to put that into the calculation but couldn't get a full accounting spent so the 300 billion doesn't include -- of your budget how much is going to that basic research to find the basis for the major mental illness? >> roughly 50%. >> and what is your total budget? >> 1.45. >> 12% is going to hiv and hate to make a litany about this. by the way my state is a very high per capita incidence of hiv and my patient population had a disproportionate number of hiv. i am absent over of the major division of hiv but it does seem as if we have too few dollars going to the brain initiative and you've got roughly $800 billion going to something that basic research or something which is causing us at least 300 billion, probably far more common as important as the comment seems like we should be throwing everything we have at

understanding that basic sort of science regarding that. the 12%, where does that come from? timing, i guess in priority, when i go back and look and we it's been 19,000 per death in hiv, i have a sense we are probably spending $2000 per death on major mental illness. ballpark -- spin let me give you some know. 41,000 suicides each year in this country. that's the most recent number we have the 90% or do to mental illness. so the mortality here is extraordinary. it's higher than those forms of cancer,-traffic fatalities double almost triple the rate of homicide death. >> 75% because some of reaching the age of 15 and 25? >> that's right. >> i happen to know that the death rate even if it's not suicides among those with major mental illness, the average longitude is in the mid 50s as

opposed to a guy from trauma and getting beat up. >> those are the ones who do not die from suicide. >> i want to make a point. dr. collins, you've got a tough job, man. and as a guy with an irish last name congratulations as well for being in the irish hall of fame. but when i hear about this and again i'm guessing we priced and $500 per death if you want to talk about dying before the age at which someone should ordinarily die. i would just hope that rebalancing would invest the dollars into basic sciences and begins with so much a success we need to continue to find that success as well. i don't mean to slight any other condition except to say the policymaker, every one of us know somebody with a major mental illness. and the fact that the funding for that seems to be so boldly last documented objectively puts the onus on us to some address that. so thank you all for your work. we all stand in the shadow of

it. i thank you for it and deal back. >> a couple of things. dr. gibbons, the budget request talks about a new program to less expensive than identify recruit and enroll patients in clinical trials. how does that impact your work? how would that work and how does that impact your work in heart, blood, lung research? >> well, thank you, senator, for that question as you pointed out and dr. collins responded earlier, as public servants it's our intention to be accountable stewards of the taxpayers money. we are always vigilant for opportunities to be more efficient, effective and economical at the we do in making these investments. as dr. collins alluded to, what is more expensive aspects of biomedical research relates to critical -- clinical trial. we are looking for different ways to ask answer these important questions to transform advanced medicine. one of the aspects that we're

looking at most recently as you alluded to are what we are calling simple pragmatic trials. now, many trials can't fit that category and must be done in the traditional way but we are taking advantage of transformation of biomedical biomedicine which is so much more information about a patient is in a digital format and where, with health systems we can track come identify patients who might be eligible for a trial. they are embedded within a system where we can recruit them. data is collected identifies their clinical characteristics. in which the trial thing can be launched in the context of where they ordinarily get care. and, indeed, the follow-up, the endpoints can also be captured threats into electronic medical record again within these health systems. so this is a transformation that's only happened in the last five to 10 years and we now want

to leverage that embedded clinical infrastructure to do research in the same way we do patient care. so that enables us to do the trial took one for example, relates to chronic disease. there's a high incidence of coronary death and morbidity relates to the. as mentioned, pharma may spend $100 million to do a clinical endpoints studied for cardiovascular disease, but by taking a strategy of embedding this within the health system we can track patients with chronic kidney disease who are often making many touch points within the health system, do a randomized trial to look at the effect of vitamin d which is thought, hypothesized to influence cardiovascular outcomes into a study on a pretty large scale, 5000 individuals. that can be done for one-tenth of the amount of the traditional sort of pharma talk and be done. that's how we are trying to be more efficient and effective and

economical doing clinical research. >> the other thing i wanted to mention was on the m-health mobile health, the cell phone technology, while the don't think the approval process business very much, if at all you are clearly in the discussion business, and you're going to be in these discussions about how do we want to let these develop and one way should a developer to mention the fact that that many of us carry -- fitbit. is not life-threatening. and i think there's lots of other things that could be helpful and not life-threatening that will quickly improve people's capacity to both report anyways and monitor their own health situations. i would just encourage that discussion as much as possible too, while the want to look at things that truly can be

life-threatening that otherwise but this develop on its own. there is a market out there. this will be felt by the way somewhere. the only question is whether, i think the only question is whether we put enough obstacles that it doesn't develop into united states and we're trying to figure out how to get from some of the country a blood pressure monitoring thing that's easier than the current way you monitor your blood pressure. and just any comments you might have on that dr. collins. >> i don't agree with you this is an enormous opportunity but we need not screw it up and there's always a possibility of doing that if we are not thoughtful. i think again nih's role where think we can be really helpful is to collect data and to figure out what is the evidence that these various kinds of wearable sensors can improve health either by improving the likelihood of staying healthy or managing a chronic illness like hypertension or diabetes. but you're right it gets much more complicated if the monitor

is doing something that could potentially be harmful. if you have an artificial anchors on your wrist instead of something telling how many steps you talk, the text becomes -- the text becomes quite acute. the fda has an occult important role. we are working more closely with the fda than ever in space like this but were having of our four workshops on precision medicine, the fourth in late july will be at intel in california where we are inviting a lot of the people of the most inspiring ideas about m-health to come and talk about what they need in order to have precision medicine be a platform for testing out what they are developing to get answers as quickly as possible in the real world, and well monitored situation so you know what's working. >> thank you. well, thank you, dr. collins thank you agile team that came today. the record will stay open for one week for additional

questions. the subcommittee is in recess until 10 a.m. on thursday may 7. thank you all. [inaudible conversations] [inaudible conversations] >> the u.s. senate is about to gavels in for this tuesday. they will take a procedure vote on moving forward with a debate on the house-senate 2016 budget conference report. if that motion passes they will have up to 10 hours of debate

before taking a final passage vote. also possible debate on the legislative vehicle for the iran nuclear agreement review act. minority leader harry reid has called the majority leader mitch mcconnell to file cloture on that bill. and now to live coverage of u.s. senate here on c-span2. the president pro tempore: the senate will come to order. the chaplain, dr. barry black, will lead the senate in prayer. the chaplain: let us pray. oh sovereign lord, you alone are god. thank you for another day to do your biddings. lord you have given each of us the same number of hours and minutes to serve you and humankind.