tv House Appropriations Hearing on NIH Research CSPAN November 1, 2019 5:26pm-8:01pm EDT
5:26 pm
444 days to freedom detailing the hostage crisis. >> with no help coming the besieged staff retreated floor by floor. one american, john lindberg who spoke farsi went out to save his life. he, too, was immediately blindfolded and bound and threatened with death. the americans surrendered. >> explore our nation's past on american history tv every weekend on c-span3. national institutes of health director dr. francis collins and other nih leaders testified before a house appropriations subcommittee funding and research efforts. this is about two and a half hours. the subcommittee will come to order. thank you all very, very much and again, we apologize for
5:27 pm
being late. the days take on a life of their own. so, but i wanted to say good morning. good morning, dr. collins, welcome back to labor hhs to the appropriations subcommittee. let me just say a thank you on behalf of the -- of the subcommittee for hosting members of the subcommittee for the site visit at the nih campus last week. we had a wonderful opportunity to learn more about nih's work. we met with the researchers who were working to cure sickle cell disease, to develop treatments for major depression, the shrinkage of cancer tumors in children. we heard from participants whose lives have been changed by clinical trials. so it was a moving and an informative, but a very moving experience, as well. let me welcome our witnesses
5:28 pm
including the five institute and center directors who join us today, and in addition, and always a great addition dr. francis collins who has joined us many times, director of the national institutes of health. today joined by dr. bruce tromberg, by the institute of biomedical imaging and bioengineering and dr. helene, with the center of complimentary and integrated health and dr. eliseo perez, director of the national institute on minority health and disparities. dr. patricia flatly brennan, rn and ph.d director, national library of medicine, and dr. christopher austin, director of the national center for advancing translational sciences. your work, all of the 27 institutes and centers leads to treatments and cures for diseases and conditions that
5:29 pm
affect people around the globe. it's transform tiff aative and the greatest good that we can do in government. they hold a budget hearing to hear from the nih director as well as directors of five or six of the institutes of the center, but today's hearing is an opportunity for the subcommittee members to hear more and to hear from directors of an additional five institutes and centers which is very, very important to all of us. when i joined the subcommittee about 25 years ago, we used to invite every director to testify. it's been a long time since we have heard from many of them. in fact, they're plain spoken about this and my ranking member, congressman cole knows about this. i wanted to include the national
5:30 pm
institute of nursing and i wanted to include the fogh erty national center and the eye institute as well this morning. unfortunately, the administration denied our request on the grounds that we did not provide two-week notice. i'm disappointed, but nevertheless, we will find another opportunity to hear from other directors. let me -- again, i think we ought to be inviting every director, at least every two or three years, to be able to listen to what you are doing and how we can assist in that process. it's critical for the subcommittee to get a picture, a full picture of the nih's portfolio as well as the research landscape. so you've heard me say before, with each scientific discovery and each medical break through, the nih, advances human knowledge and above all, it
5:31 pm
saves lives. i am so proud that the congress has 4 million and i will note that the subcommittee did this on a bipartisan basis. in in fact, for 2020, the house passed appropriations with increased funding consistent with significant annual increases over the last four years. the house bill increases funding for each of the institutes by at least 5%. our funding bill is a statement of our values and a reflection of our commitment to investing basic, biomedical research at the nih. it is not overstating the case to say that the nih has prolonged or improved the life of every american. because of nih research we have childhood decreased cancer mortality, 50% in 35 years. we have a vaccine to present
5:32 pm
cervical cancer. we have a drug that prevents hiv transmission with 99% effectiveness. in fact, a recent study in the proceedings of the national academy of sciences in february found that nih-funded research contributed directly or indirectly to every single one of the 210 drugs approved by the fda between 2010 and 2016. that is your impact and it is amazing. so to our guest, we say a thank you for everything that you do. we look forward to our conversation today and now let me turn this over to my colleague from oklahoma, the ranking member of the subcommittee. mr. cole. >> thank you very much, madam chairwoman. >> a couple of housekeeping things. it's wonderful to have our friend here. we've not had her back for a while. she has the most excused absence of all time, but it's great to have her back.
5:33 pm
>> thank you. >> just to let our witnesses know, i've been told to share this, at some point i have to get up to go to a leadership meeting and it has nothing to do with your testimony. i have to get away and i want to thank the chair for bringing this together and you guys actually do that and it's wonderful to see you and to see the chair and the full committee. today we have our second budget hearing on the national institute of health and i want to thank the chair for having this hearing and inviting some of the institutes and centers. we do not get to hear from as often as we should and i associate myself with the remarks she made about that. i look forward to learning more about the research being done and learning about the promising cures in the future. however, i would be remiss if did i not recognize dr. francis collins. i want to congratulate dr. collins on reaching an amazing
5:34 pm
accomplishment on the director and he's clearly the best politician in washington, d.c., if he can get appointed by both barack obama and president trump. that's pretty amazing span of appreciation for the manner in which he's led the nih and a great deal of national confidence, obviously, in his ability and the wonderful team that he's assembled there and has been there for many, many years. >> obviously, dr. collins and is's groundbreaking research and supported by nih funding and again, i've said it here and the four years of sustained funding increased which was as the chair said very bipartisan and owes a great deal to frankly, our confidence in dr. collins as the leader of this institute, as well and he's made the case up here for a lot of years as to why this is an important investment in this committee and a bipartisan fashion has listened to that. >> i want to highlight some of the of the work being done in
5:35 pm
local universities and my district through the support of the nih. somehow they always seem to miss that when they announce new cures and it never says funded by the nih or awarded and we need to work on that and maybe require them when they get grants and working with the university of oklahoma, and researchers at the oklahoma medical research foundationdation are using a novel, three-dimensional model and to study the respiratory, and it's the interstitial virus -- i won't try it twice, thank you -- a virus that affects the lungs. this virus is the leading cause of pneumonia worldwide. it can take a particularly heavy toll on children infecting half of their first half of life and nearly 100% by age 2. the virus is highly contagious and for those with weakened immune systems with conditions like asthma, it can be dangerous and even deadly. these researchers hope to reveal
5:36 pm
what predisposes infants to severe infection and to create a launching pad for therapies down the line. this lung in a petrie dish model could prove to be valuable for studying other lung infects like flu, allergy and asthma. another medical research foundation is lupus. it infects a million and a half women and it's particularly bad on after can americans and hispanics and it's a chronic and auto iks mun disease that causes inmraming a tut your bo are body. >> your body's own immune system is responsiblet and the breakdown. it can affect various tissues in the body, including one's skin, blood and internal organs. >> it can cause ooh on it's a op
5:37 pm
ten cause of death, afric african-american and miss pan earn, and to condition duck large scale genetic announcement and the focus on 25 genes and it is disproportionately burden african-americans with lupus. the medical research foundation has done in the lupus space including discovery by one of its own researchers, dr. judith james an anti-malaerial medication. these medications are now part of the standard treatment of care for many lupus patients. there are countless stories like this of ground breaking research taking part in the united states as a direct result of nih funding. nih fosters such ingenuity. simple idea from one lone
5:38 pm
researcher that can open an entirely new field of medicine in biomedical research. all americans benefit from this research. future generations will benefit from the untold promises from the research being done today. despite some of the controversy that can surround this bill, support for research at nih has been broad, bipartisan and been supported by leadership in the house and senate alike. i do not want to take up any additional time recognizing all of the institute directors before us today because, quite frankly, i would rather hear from them about their exciting research, but i do want to thank each of you and your colleagues and the leaders not with us for their work and i believe the work will change the work and treatment for generations to come. i hope congress continues to be a supportive partner in these efforts. thank you, madam chair, for holding this hearing. i yield back my time.
5:39 pm
>> thank you very much, congressman cole. i'm not going to go into what they do, but i am so proud that the yale school of medicine has one of the awards. we are a hub and it is amazing work that gets done that, as well and we thank you for that and with that, let me yield to the chairman of the appropriations committee. my colleague, congresswoman nita lowey. >> i thank the chair of this extraordinary committee for this hear coming is so very, very important, and i think -- i'm sorry you're leaving, but i thank my good friend mr. cole for holding this hearing. there's no question that whether it's chairman cole or not chairman cole, there is
5:40 pm
bipartisan support for the outstanding work you're doing and i really thank my good friend the chairwoman delaura for holding this hearing and i welcome dr. tromberg, dr. perez, dr. lantern, dr. austin, dr. brennan and of course, dr. collins. i've been reading you with a big smile for many, many years, and i really appreciate all that you and your team are doing. earlier in the year, however, the trump administration submitted a budget that would cut the nih by almost $5 billion. it's crystal clear that president trump doesn't really understand the nature of this committee and how bipartisan it is, and no regard for the national institutes of health and the cutting-edge work you do to save lives, advance cures and
5:41 pm
improve the health of americans. despite the president's heartless and misinformed efforts to cut the nih, we have responded resoundingly. unlike the president, my colleagues and i prioritize the health of all americans. we are on track to invest billions more than the president would for our world-class national institutes of health. our house passed fiscal year 2020, labor health any related agencies would provide their 2 billion more including increase for the institutes and centers. this would allow the nnih to petter respend to make brick
5:42 pm
troous, but thaw such as those of us pd. >>. they are leading innovation and there's so much going on, dr. l collins, i don't know if you threw the numbers in a hat to try and pick which ones are here today, but i really look forward to hearing your remarks. not only will we hear about the encouraging advances achieved to date, but also the exciting innovations that are just over the horizon. we're talking about life-saving achievements that with our continued commitment and investment could soon be on our doorstep thanks to the nih's extraordinary work. so rest assured, the administration's attempt to slash your budget will not
5:43 pm
stand. we remain committed to ensuring that you have the tools and the resources you need to deliver for the american people. so i really do want to thank you and i look forward to our discussion. thank you all for everything you do just to improve lives. thank you. >> thank you. we will now proceed to opening statements from the nih panel. we have six witnesses today. so what we have done is to ask you to please offer three minutes of opening remarks. >> i'm sorry. they curtailed the five minutes and we wanted them to get in the opportunity to testify. you know the drill today. the full testimony will be entered into the issuihearing r. you are recognized for three minutes. >> good morning chairwoman
5:44 pm
delauro, and yes, i'm francis collins and director now for over ten years of the national institutes of health. on behalf of nih, i want to thank the committee for your work on the fy-20 hhs funding bill that passed the house in june. we were grateful for your bipartisan support and we were table to host a visit to some of you last week. let me start by introducing dr. christopher austin, director of the trains lagztranslational subjects and leak you they're translated into new ways of combatting disease. today we've identified the molecular causes from more than 6500 diseases, yet treatments exist for 5 hun. so addressing that gap requires translational research and one of my first initiatives upon becoming nih director was to ask
5:45 pm
congress to create end cats and you did and here is the director? >> mix up is next to me on my left, your -- it is focussed on one way it does this is to have a database that provides access to more than 5 million articles from biomedical ujournals and te other is the online catalog of public and private clinical trials which, by the way, is a great resource to share with your constituents looking to take part in medical research and that's where you can find the trials and now meet the director of the national center for complimentary and integrative health which this very week celebrated their 20th anniversary. in pack, it was you, should sub
5:46 pm
committee that established this center in 1999, citing the need for more scientific evidence on complimentary health practices and that need remains great today. >> let, let me introduce dr. eliseo perez, and director of minority health and health disparities. >> i think it is wrong for, and how is the krill cal issue of distension wished, and i'm yo-- other investigators push the innovation knowie envelope to create smart, faster and less expensive medical technologies and i thank you for the opportunity and it help explain why i am so excited to lead all of nih's institutes and centers
5:47 pm
working together to encourage this next generation of researchers. i can assure you you will speed the path from discovery to health. my colleagues and i will be happy to entertain your questions. >> thank you very, very much, dr. collins and for being so succinct. >> it's unusual for me, i know. >> please, now let me just recognize dr. tromberg. thank you again. your full testimony will be earned interest the hearing record. you are rb oized for three minutes. >> thank you. madam chairwoman and members of the subcommittee. it's an honor to be at your hearing with thousands of physical scientists across the country who are developing innovative new technologies to improve human health and i've only been director for five months and i've spent years pioneering the optics and
5:48 pm
photoprojectsed bksz sksz become are bu and we build strong partnerships with industry, academia, federal agencies and every nih institute and center. our programs lead to better, faster and less costly ways to advance technologies from blackboard to bench top to bedside. and mibib supports 1,000 grants each year in four major technical areas and computation and artificial intelligence, engineered biology and sensing and imaging and advanced therapeutics. one of the innovative and sensible platforms has been the widespread problem of foodal lerjs for billions of pub look --io have you had a point
5:49 pm
of care technology. >> it's small foufr check on on a key chain in less than ten minutes. small personal sensor technologies are helping drive the development of new personalized imaging platforms to help address the breast cancer detection painlessly and without x-rays and contrast agents. researchers are using invisible laser light pulses that are one billion of a second in duration to create ultra sonic vi vibrations. 3d images of breast tissue are formed for diagnosis and guiding therapies. in the same way that advanced imaging technologies it eliminated the once common practice of exploratory surgery. new technologies are revolutionizing brain surgery so it can be done without scalpels. the approach uses special
5:50 pm
ultrasounds placed around the head that are controlled to target structures deep inside the brain, and i'm delivering therapeutic drugs to tumors without collateral damage. th this is -- it's exciting to be part colleagues in every nih institute and center to better engineer at the future of health for all americans. thank you for your time and i look forward to the opportunity to answer questions. >> thank you. i want to get hold of this mechaniss. i'm lactose-intolerance, and it's really unbelievable going to a restaurant and trying to figure out what is in what. so we will speak. doctor, thank you. again, you're for testimony will be in the record. you're recognized
5:51 pm
for three minutes. >> madam chairwoman, ranking committee member cole, and distinguished members of the nccih. i am pleased to talk with you today about the exciting work supported by the national center for complementary and integrative health. my training is internal medicine but i've had a lot of interest and complimentary treatments like acupuncture and yoga that originated out of traditional medicine but are integrated into conventional health care. the most common reason that people turn to complementary medicine is chronic pain. and nccih devotes 40% its portfolio to pain treatment. this research is now part of the heal initiative, whoch stands for helping to end addiction long term. and aggressive trans agency effort to use science to
5:52 pm
fix solution to the opioid crisis, fueled by the highly addictive opioids that are used to manage pain. there is an urgent need for improved pain management, including non pharmacological methods and treatments. nccih supports research for strategies on managing chronic rain, and reducing the craving to take opioids. another important area of focus at nccih its natural products. one and five adults use botanicals and other dietary supplements. adverse events related to dietary supplements are common, especially when used in combination with drugs. and are estimated to contribute to 20,000 emergency from visit every year. nccih report
5:53 pm
research on the biological mechanisms, benefits and harms of natural products to improve the knowledge available to help patients. integrated health means integration, but not just of complimentary and conventional treatments, it also means integration of health as a whole. our current biomedical research model is superb in advancing the specialist treatment of organs specific diseases with increasinf precision. and there's also a need for a better understanding of health as a process involving the whole person. we know that a combination of poor diet, sedentary lifestyle and chronic stress leads to major chronic conditions, including cardiovascular disease, diabetes, degenerative joint disease, chronic pain and depression that tend to occur together in the same people behavioral methods such a simple relaxation techniques, especially when taught early in life can equip patients with tools to help themselves with stress, pain and sleep for the rest of their lives. a good
5:54 pm
night's sleep does wonders to stay motivated to eat better and exercise. advancing resaerch on whole person health is imperative if we want to improve the health of our society. thank you, and i look forward to your questions. >> thank you very much. i'm sure all trying to figure out how to get more sleep here! >> and less stressed! >> and less stressed, thank you barbara! doctor brennan, thank you for being here as well, you written testimony, your full written testimony is entered into the hearing record and your recognized for three minutes. >> thank you. madam chairwoman, ranking member, cole and members of the subcommittee, i'm patty brandon, a nurse and industrial engineer. i spent my career developing information technology, solutions to bring health information in to the everyday lives of people. now i directed the national library of medicine, the largest by medical library and one of the 27 institutes at the national
5:55 pm
institutes of health. every day, millions of people uses the nlm resources to translate research into new result to develop to inform clinical decision making, to devise new treatments and to improve public health. let me show you what this actually could look like. imagine you are a parent of a child newly diagnosed with a rare childhood cancer. you've never heard of it before, and you want to understand it better, so what do you do? like millions of people every day, you turn to the nlm's medline plus, which has information on thousands of diseases. there are 57 short articles related to that treatment of this disease. if there are no effective treatment approved for use, your physician might search the
5:56 pm
nlm clinical trials database to find a study, 145,000 people use the clinical trials database every day it, contains information about more than 300,000 clinical studies, ongoing and completed. today you will find 100 studies that are actively recruiting participants across the united states. physicians and researchers are studying the disease, and can use the research to keep up with findings. 30 million findings, 30,000 of which address the disease. if they want to bring a full text article, they can find 5.5 million full text articles, more than two and a half million people every day do this. researchers trying to discover treatment can request use of data form the database of genotypes and feel typed, where more than 1 million studies relate to this disease. you can use the genetic home
5:57 pm
reference to get additional information about the disease and its heritable components. not only can we maintain databases of genes and journals, but also machine learning. one of our funded researchers at stanford has an on-the-moment consulting services, the green button, that allows physicians to learn immediately about the experience of thousands of patients and find out was in a patient like there is and how they respond. in addition to our electronic resources we have a human network of 7000 public academic health science libraries around the country, placing the nlm in every county in the u.s. this helps build awareness of our resources and often reaches into communities underserved. thank you for the opportunity to showcase the wonderful work at the national library of medicine, and i look forward to your questions. (inaudible) >> thank you and
5:58 pm
good morning. i would like to think chairman rosa delauro, ranking member cole, and esteemed members of the subcommittee. it is really an honor to be here today. my name is doctor eliseo perez-stable, i'm the director of the national institute on minority health and health disparities. i arrivedont the team 13 years ago, after i was an educator inclination scientist. i became a research because of my passion for understanding the factors that affect minority health, and health equity, as a practicing primary care physician, i learned to appreciate the power of therapeutic relationships. i witnessed health disparities in our minority communities at every level on health care and
5:59 pm
note the lack of diversity among my peers. i came to nimhd because of that ability to shape the reserves at a national level. to developing the interventions to reduce these. we take into account behavior and biology, individual and structural determinants of health, the built environment where we live, learn, work and play, how people interact in our communities in health care. through geographic information systems, we can understand the personal and social interactions that contribute to disparities in defining neighborhoods. we know that life expectancy of individuals may vary by 20 years from one neighborhood to another, within the same city, but full explanations are still lacking. place matters in health, or as many have said, your zip code is more important than your genetic code in determining
6:00 pm
your health. asthma is the most chronic disease in america, and this affects puerto ricans an african americans disproportionately. ongoing research on the children from this ethnic and racial backgrounds do not respond to the front medication treatments for asthma in the same way. they are genes they protect and genes that increase the risk for asthma among these populations, with environmental and geographic factors. lastly, we know diverse groups are more effective and innovative in science and other fields. nimhd programs create opportunity for diverse early-stage investigators to succeed and cultivate strong community engagement as part of the research process. we believe this is a sustainable intervention that will help address the lack of diversity
6:01 pm
and the scinetific biomedical workforce. through this agenda, i am optimistic that nimhd scientists will lead to discoveries that promote health equity. my patients, from all backgrounds trusted that i would recommend the best clinical care for them regardless of the diagnosis, ultimately, nimhd envisions in america in which all populations have equal opportunity to live long, healthy, and productive lives. thank you and i look forward to questions. thank you >> thank you. doctor austin, your full testimony will be entered into the record and you are recognized, for three minutes. thanks for being here. >> thank you, and good morning chairwoman delauro, ranking member cole, and distinguished members. i am christopher austin, a critical neurologist and a basic science geneticist by training, and i've spent my career trying to bridge that gap which we now call translation in both the academic and pharmaceutical
6:02 pm
industries. and i'm now proud to be director of the national center for advancing traditional scientists, or ncats. ncats was established eight years ago now to address a central biomedical issue of our, time which is how to dramatically accelerate translation, which is the process of turning observations made in the laboratory, the clinic or the community into interventions that improve the health of individuals in the public. ncats is focus on the science of translation, understanding of which to overcome common roadblocks to success and increase efficiency of the translational research process for all. in short the mission is to paraphrase matt damon's character in the movie the martian, is to science the heck out of translation. a few examples to illustrate our approach and successes so far. so far, we look for commonality. rather than focused on what is different
6:03 pm
among diseases, we focus on what is common to diseases and call into the transitional process, allowing us to journalists and from one disease at a time to many diseases that a time, there periodically. for example, our platform it's developing standard gene therapy vehicles, or vectors for unrestricted use to hundreds or thousands of different diseases. second, the exhilaration network supports initiatives to develop the development of cures. the program addresses the frequent cause of transitional failure due to animal models not accurately predicting safety or effectiveness of new drugs in people. tissue chips are made of human cells and can better model human organs and diseases and response to candidate drugs. as an example, tissue chips of a human kidney have been developed to study polytheistic kidney disease, a conditioned not well replicated
6:04 pm
in animal models. one of the operational monstrous, and we find the more diverse our teams are the better we can solve problems. for example, the sea tsa can develop and the fate of solutions to plan implement critical studies. these community engagement have helped researchers design studies to help children with sickle cell disease and fibrosis. involvement of patients and communities in the research we hope will benefit them as a central study. when i became ncats first director, seven years ago this week, it was unclear whether our ambitious mission to close the transitional gap could actually be achieved. our accomplishments since then make
6:05 pm
me more optimistic than i have ever been, we can indeed both understand french relational science and use that knowledge to increase the promise of science to patients it need. i thank the committee and will be happy to answer questions. >> thank you very much. >> i have a question that goes to the panel. much of the success of biomedical research is attributed to nih's strong support of basic research idea proposals. individual scientists at the nih across the country, and many of the ideas and discovers came from the bottom up, not from the top
6:06 pm
down. at the same time, as a director of the institute in experts in your field you have a unique vantage point to target specific areas of research the navy promising or compelling or made been neglected or shortchanged. a questioners, had to strike the balance in allocating resources between investigator initiative and targeted initiatives? so whoever would like to start, we don't have to go in order but whoever would like to start to answer the question. i will ask each of you that question. how do strike that balance? >> thank you for your question, it's actually a very easy one for us in some sense, we are constantly communicating, interacting with our community, we have many methods of convening the community together with conferences and workshops and we're quite responsive to state of the art and needs of the community, and
6:07 pm
through working together with our colleagues we are able to create targeted opportunities that will respond to those needs. there's a push and a pull, it's very dynamic, ongoing and fluid and and number of mechanism for accelerating targeted mechanisms as well as encouraging the individual investigator applications. >> go ahead. >> at the nlm, we release notices of areas of interest, we have vast databases and we know that some of the databases may have sparse, incomplete data sets, maybe biased and someone. we've released a notice saying we want to understand mathematical approaches to making sure the databases are better. we let the community decide how to respond. >> quickly, we will talk about community. identify the community. >> thank you very much. for us, it's the data science and informatics committee, and beyond, the clinical care community. >>
6:08 pm
doctor tromberg, quickly. >> the bylaw -- bioengineering community, which are developing radiology. >> when i arrived at nimhd, most of the portfolio was targeted, that's why shifted some of those funds to create a new pool of investor initiated applications. we are about 50/50 now, and we need to see how it goes over the next several years. we have senate programs, endowment programs, we have targeted programs. now, our community, which are the minority health health
6:09 pm
disparities scientists, -- some non-affiliate organizations are responding to ideas that we have put out but also on their own ideas. >> i want to answer it this way. i think the way we think about this, that distribution depends on the kind of science that you are trying to do, and a basic science, investigator initiated model works very well because the person is a unit of productivity, i mention that translation is a team part, doesn't matter how smart or devoted you are, you can do it yourself, you need a community of 20 different disciplines to do that. the way we tend to think about it and structure them as we have programs like the ctsa that support these programs -- happened in this ecosystem. to have an
6:10 pm
investigator-initiated pool which we do not have. i think that's very necessary for the transitional science community, academically to flourish. >> at nccih, we study treatment and practices that are occurring in the patient community. this is a grassroots phenomenon, that is going on. it's a natural thing for us to want to extend our research into what we call the real world, how are these treatments actually being implemented, how is it impossible to bring something like, for example, acupuncture and to a hospital and have it be integrated with the rest of the care that is going on? we have a translational arc that goes all the way to implementation and we perform and collaboration with investigators. we have investigator-initiatived to understand. had a suddenly acupuncture works, so we do a secret it all the way down to
6:11 pm
animal models, so we rely on the creativity of the community. >> this is a very important question and something we think about a lot at nih, i'd point you to the strategic plan, which we put together, what must be done every five years. it has a whole section on how do we -- it's different for every institute and it should be. >> congressman cole? >> i'm going to direct questions to doctor collins, because i want to get these on the record. as a chair
6:12 pm
pointed out we've had four years up bipartisan sustained growth here, i know that plan is in the bill that you prepared. i want you to tell us what difference has this made -- but how are those advantages if the congress uses to continue on that course? >> i appreciate the question and it has been such and thought in the arm, and talk about the research community across many different disciplines and institutions to have this have managed to sustain, for four years going on five and that has changed the whole morale of the community in very substantial ways. as i told you, when i would visit a university in 2014, it with something difficult to meet with the trainees because they were anxious about whether there was a future for them and whether they got into the wrong field. i don't hear that anymore, i hear a lot of excitement and energy. over the last four
6:13 pm
years, the things that happen, a lot of them in the area of technology. they are making a pattern is, something that they can study. that is happening in lots of different laboratories with the ability to do this kind of regenerative medicine research. the single cell biology revolution, which five years ago, we didn't really know how to study biology in a single cell, now we do and that has just completely transformed our understanding of biology, but also give us insights into treatments. in terms of the therapeutics, the revolution has been accelerated by crispr, and i don't know how many of you got to see the 60 minutes piece about six months ago, an individual at our clinical senator who it's cured of sickle cell disease because the opportunity to take gene there
6:14 pm
appear to another level that we did not think will be able to do this soon. all that takes a lot of money and resources, it means taking risks we don't know where you will go and you've given us that kind of confident we can make deals investments. the one thing i would say is most important is actually investing in the next generation of researchers, i was really worried about that five or six years ago, again, it was very hard for a new faculty member to be sure that they would be able to get nih support, and that their requirement if you're going to run a research lab around this country. we funded about 600 of those first time investigators in 2013. we've had a very high mark and -- all the institute to hit it. refunded 1287. as of
6:15 pm
this morning we also set our goal, we have exactly 1287 again, and we are not done with the year yet, so we will break through that. we could not do that if it were not for the proved circumstances. you all those things apply to enroll all of us in the largest ever prospective study that it will be critical. it may be the most significant, to do more in that. it may be more possible for fiscal year 20. so i can't thank you enough. >> you highlighted the importance of us continuing on the path that we have embarked on. i'm a quick question with the time i have left i think you will want to answer and that's that's --
6:16 pm
highlighting the challenges you maintain the campus. there's no the hundred buildings you to insufficient funding for buildings and facilities and other infrastructure for many facilities, and the campus overall has been deferred for many years. so i want to thank you for bringing this to our attention and doing such a thorough review. this is something that we ought to interject and our discussion of on the senate follow-through lead and get the build on, because we need to focus on this. i've lucky you to comment on the infrastructure. >> it is a very critical issue, as the report documented, we're about 1.3 billion dollars behind what we need to be enough to support the infrastructure of the nih campus, and that's the clinical center. they recommended an investment of 700 million dollars over a five-year period,
6:17 pm
just to catch up with all the deferred maintenance, which has led to all kinds of problems that we have experienced in terms of the major leagues and so on. we've also had another 6 million dollars for really new investments into badly needed facilities. the most critical one is a new surgery bring, what is an a pretty dilapidated state. we've had situations where leaks happen in the ceiling, and the operating room, in the middle of a procedure. obviously, we can't keep that going. i appreciate your invitation to talk a bit more deeply about that to see if we can bring this back up to being the finale state it possibly could be. >> congresswoman nita lowey? >> thank you again for being here. some of us have been working on these issues for a long time. if it were up to us, we would keep raising that numbers. thank you. and particular, kidney and pancreatic cancer. understand or institute supports research
6:18 pm
related to point of care technologies which may be used for more efficient diagnosis of some cancers. if you could explain some of those technologies, what advances in detection are on the horizon, i would be most appreciative. one of my this is to the hospital, talking about just this issue, and he's a former member of congress use to tell all of us, we should get a scan every year so we know what is happening everywhere. is that the region? as if the cost that we are not doing this, or can you repeat respond to me but they more technical response? >> thank you. there are so many things that are happening that are super exciting so i would like to condense this. in general
6:19 pm
there is revolution going on and micro devices, such as some of the set i brought with me, a device that can analyze bodily fluids for cancer components, suffered of liquid biopsies? for able to detect the dna from cancers, protein, tumor associated antibodies, we know they exist but we need the technology to be able to manage them quickly with very sensitive hardware and computational approaches. this is what's going, on liquid biopsies. we are also developing imaging technologies at the point of care. what does that mean? can we have a personalize ultrasound for example at the point of care, like this one. or do we have optical sensors that can measure tumor metabolism until they respond. there's also sensors that can be implanted inside of you and follow whether or not you may have
6:20 pm
cancer and then deliver life saving tech, like this patch. one thing that once they go inside of your, painlessly, and can be delivered to your home, you can't see the needles and they deliver what their pay load is, and then the needles disappeared, you can get another one in the mail and you can do it again and again, and it can create down with a very smart chemistry to be able to sense things and then develop the chemistry. there's an explosive technologies, big imaging technologies as well are improving dramatically, and there will be a time when we are able to go into scanners and have full body imaging and be able to see early stage disease. this is coming. this is happening. through your investment and support. >> how widespread are these technologies being used now?
6:21 pm
how widespread are these technologies? we will have mechanism to try to dramatically respond to this that we support all around the country. we have five point of care technology research centers that our network are coordinated, so this is where that discovery invalidation is accord. they're also deeply engaged in the dissemination and movement of the technologies ultimately for commercialization. we work very closely with the fta to ensure that once they are validated, they actually get out and impact the most number of people. >> we've been talking before about the transitional science spectrum, including
6:22 pm
returning observations from basic, clinical, and tangible interventions. i wonder maybe i should go back to dr. collins because we used, or wherever else wants to answer quickly, or you can answer because i can remember very clearly years ago, no names. having these discussions with a former person who had your position who was totally focused on basic research. so, do we have another couple of seconds, someone else wants to answer this? >> i think, probably the ncats director would have an appropriate response to this? >> i appreciate the question. from our vantage point, basic research is absolutely critical. that's the seed corn that we translate. its
6:23 pm
neccessary but not sufficient, to get treatment and course to people, and we focused on how slow that process is. it takes about 15 years to go for fundamental discovery to a treatment that is approved to get people who can benefit in the success rate is less than 1%. and that is why this takes so long and costs so much. what's interesting about the process is that we don't understand it, we don't understand the fundamental science of that translational process. and that's what ncats it's doing, we are from believers that like every other science, whether it's genetics or data science, once we understand the fundamental principles we will turn this from a trial and error process, and that will bring the promise of all of this basic research to people. >> thank you. i want
6:24 pm
to say one more word because having been on this committee along time, i think the hardest thing to do with regard to that issue is how you identify and prioritize. when you get past the basic research? where do you go? >> thank you, madam chair and full committee chair. it's a pleasure to be here. we can all sit here and talk to you about a long time, i was sad to miss last week, i was flying back from the district, otherwise would have been here, but i noticed that there are different folks here, there's a couple of people with that i want to admit. how you identify and turn it into where to spend the money and how you get down into that. we've had some conversations about down
6:25 pm
syndrome's research and making sure the funds follow the congressional intent, the other piece on that, i was asked to cosponsored, which i will be, childhood cancer bill would respond to research, and what the bill does is, it would ensure that federal funds match the same percentage of the number of americans under the age of 18 as part of the general population. one of the things we have seen i, heard from disease groups is that that piece that goes into treating children's diseases, or research on childhood cancer for example, tends to lag behind, obviously, the adult population. even if it's a higher incidence in a younger population. i'm wondering how, and this might be a
6:26 pm
translational piece, how we make sure our job has not been to be, this is going to do the research, we are not scientists. you are. we've given that responsibility to you, however, when we have constituents x-factor wasn't say, well, we don't see that the money that were helping is trickling down fortunately. help us either answer that question on michael changes. and although that you doctor told to get to ever. >> it's a great question i'll ask out of to draw a least one other person and on this. certainly we are completely in accord to the importance for focusing on childhood cancer research given how incredibly painful and tragic this could be and we still have these childhood cancers and i'm not been able to point out that happily for many of them we found out extremely well and we currently
6:27 pm
spend 514 million dollars a year on childhood cancer research but that just counts the part that you can say it's research that is directly relevant and many of the advances that have happened interruptions cancer us come from unexpected directions and from very basic science and just understanding what make cells divide when they determine what cancer is. they're trying to add up all the things in a larger number and i understand the area of concern that feel like they're still needs more to be done and in this committee put up an additional 50 billion dollars earmarked and we certainly will find lots of ways to take advantage of that. it would be the case i think though that the advances right now that are happening in the terms of
6:28 pm
genomics and the pediatric match trial will be possible for children that are otherwise not treatable to get them into a creative political trauma, which is making it possible for a lot of these new ideas about their piece to be tried out and a very efficient way that offers to those who need it. if they're working on the ip gee which is horrifying and tragic circumstance. >> i wanna hear about this briefly but. i want to ask doctor austin quickly. use >> the ip gee is an absolutely horrific childhood cancer and a very short life expectancy, we teamed up with a number of academic investigators to develop a ploy of a new way of identifying combination or treatments that will be able to treat these children and as we know, very rarely does one drug treat these children and it's been a trial and error process to figure out how to do those and they don't live long enough. so,
6:29 pm
we developed a way which allows us to take -- from the children and put it across tens of thousands of different combinations and then deploy those very rapidly. >> i have a constituent to taken part of that and see the progress. really briefly, when you're talking about with all these different devices you totally lit up and it's almost like the silicon valley space of why not, let's do it let's make it worth and i appreciate that very much. because i feel like we are way slower than that. speaking of slow, with all of these promising technologies and question about how we get these out and how you get these working. what is the biggest slowdown that we can come up with. and then >> within two seconds. this >> is a great question. as a technology developer and a community that i represent, we think about
6:30 pm
this a lot. we sit down with the fta plenty of times and some of these are quite famous and we know about the fallacies of death and we are trying to understand how it develops and the reference methods to the 25 or 30,000 new applications to come in. everyone that comes in has a validation method so that gives them 20,000 different validation members. were looking to identify and validate the validation that it's. this could increase through put and are also looking to develop and fund the prototypes because you can have a device that may look cool and it's a pretty good prototype so we wanted to look like this so we'll have it faster and we have to have this validation with our applicable to our devices. >> thank you. >> we also have to make sure that we don't cut corners and put
6:31 pm
people at risk. have commerce in terms of those devices and that really has happened over and over again and we take a very hard look. it's great to get something to market quickly and to make reference to e-cigarettes and so forth and here we go and in terms of difficulty and deaths. talking about people who potentially can die. we have to be careful of cutting these corners. >> thank you very much. thank you doctor and i think your team has always good to see you and that you are continuing this with his life saving work. a couple of questions i'd like to ask. i have three and i'm trying to do get in. first of all, let me just mention this request that we had made to the black men in the medical profession, we inserted into
6:32 pm
the report in 2019 to coordinate with and i h to have a workshop on this topic and american men are in medical schools and are very underrepresented. there's looking to get a status on that as we haven't received a report back. my second question has to do with doctor land him in. i've witnessed the benefit of integrated health as a relaced but also as it relates to preventing an alternative surgery. my late mother and this committee had copd in her latter life and when i was a child, my mother went to the chiropractor and this was in the late fifties and sixties and it worked. secondly, when she was in her mid eighties she needed knee replacement surgery in her left knee. she and her right knee, she got the surgery and it was fine. but when she
6:33 pm
turns 89 and needed her left knee and the doctors said she had copd and high blood high blood pleasure she did recommend it. one day she was out and a lot of pain and getting her walker and what's complaining about her knee and gave her some lotion. she tried it and she never was in pain anymore. i would call her to say, how is your knee and she said, it's drunk. this was cannabis lotion. so i have witnessed at least my mother and other senior citizens, the health benefits of cannabis. i don't know if nih to conduct research on cannabis but they let me know based on personal experience that it works for some people. finally, let me just ask you about the hiv aids strategy in the funding and will hopefully see our goals with the hiv in aids by 2030.
6:34 pm
out to thank you all for your continuous way of supporting the increase for the domestic age and the domestic metaphor and hopefully well and soon, thank you. >> i'd like to start with the first question. >> the situation of diversity in the scientific workforce with the political profession is a dire one. i agree with you, we have an urgent crisis to diversify our professions. black man in particular are notable here and it's under represented minority groups. we have empirical evidence that more clinicians of these groups whether it's people that look like them or people who don't speak english and this is been consistently
6:35 pm
shown in three different studies over the last 30 years. whether it's a scientific workforce which also benefits, we don't know but we've had valentine and others who are working on it. he nationcal academy has a report that came out and had a joint workshop and put into the bill that wanted you all in nih to work with the political economy and work well back in 180 days of what were going to do in terms of increasing the representation best based on 2017 workshops. i'd like to make sure that we get that report as soon as possible because this is a dire situation. >> i agree, it's a very serious concern and as you can imagine it's a big part of their agenda as well which is a medical professional we will look at that. >> thank you for the question about cannabis. certainly it is available now and people are using cbd in the forms of oil and the public is using this. it's now playing catch up with what's happening
6:36 pm
and we need to understand the potential beneficial effects of some of these compounds from cannabis and particularly for pain. there's a lot of potential there and it is just funded seven applications of looking at the basic my neck and isms and minor components that could be useful pain. what i understand is how it works but also it's looking at potential interactions with cannabis and drugs and people take these cbd with medication and it could lead to some problems. for me >> but since so many states have passed >> medical marijuana laws now, we need to catch up with any age and i wanna find out legally can we do that, how can we get you to catch up with where the states. are >> the issues with regulation
6:37 pm
is a broader matter. >> we have a problem in that because marijuana is difficult to set up research programs and we've been talking about the need for some kind of an alternative so that we could do research on potential valuable uses of marijuana without going through such an incredible bureaucratic rigmarole so that it isn't scare away people, and we need to come up with a better strategy for that part. >> i would like to think about that for the next, bill thank you very much for being here. >> thank you very much, you will be pleased to know that we have a bill filed, and it does exactly, that it has been bouncing around for a couple years and hopefully it makes some lakes that will make research and to the potential beneficial use of medical marijuana before it further expands with i think a lot of false hopes, so doctor you are very right that there were interactions that looked at
6:38 pm
people who use medical marijuana, whether they had more or less pay after joint surgery found out they have more pain after joint surgery, clearly this is not a drug that acts only on its own, clearly to with other systems in the body including the analgesics systems in ways that we don't fully understand. >> i'm going to ask a question on a very different topic, it's very timely, next month the case will be heard a couple blocks down, at the supreme court that involves sexual orientation and gender identity, and as you know two female runners in connecticut have filed a complaint with the eoc about gender identity issues with sports, now my daughter is an all american division one athlete, i have talked to her about this issue, she cannot understand how you can possibly have come pleading with women
6:39 pm
in a medical sport like this. so let's talk about research, a lot of times you said it's important you study men and we study women, so it is a very simple question, if you have a transgender woman would like to participate in a study, are they going to be assigned to the man or the woman, and doctor collins the first question is to you because sex is genetically determined, that is what i learned in medical, school maybe i'm wrong, gender may be different but when you are doing this research is it sex or gender that is important, where are the differences in how would you do that? and in fact if you were to say i'm not gonna a sign that person, is in that gonna be discrimination, where does this stand at the nih? >> very important issue and obviously a very timely one, we have noted with interest and concern a few years ago the institute of medicine report on
6:40 pm
health for individuals that are lgbt, it is clearly an indication that this is a circumstance associated with bad health outcomes, particularly in terms of mental health issues, depression, and suicide, so he took that very seriously and actually have set out an nih genders actual minority to make sure we are paying attention to what the research needs might be and understand that as a health disparity. >> excuse me, can you describe what a sexual minority is, i understand a gender minority, can you define a sexual minority? >> you are a science, this is signed snares and all, but what is a sexual minority? >> i think at the president time without trying to be too precise, most people would say those who are not into traditional heterosexual role would be considered sexual minority, lgbt and others in that category.
6:41 pm
>> as a scientists you don't believe that six is not binary, not based on genetics. >> i believe that sex assigned at birth is very heavily, probably 99% influenced by genetics, not forget that there are individuals board with ambiguous genitalia. >> i said 99 plus percent, this is serious because our colleagues in the third branch are going to have to rule i think on what some people think is a scientific question, the definition of sex, they may also rule in the definition of gender, not sure but the law, title seven which is what is under review by the court uses the word is sex. as a scientist i want to ask you, what is the definition of sex? >> again as i said, i think aber thought sex is highly 99%
6:42 pm
associated with the genetic measure of whether there's ex acts or ex why chromosome all constitution, but let's be clear, biologically it's clear that one's actual personal identity can be in a different space, i think it is a very complicated issue, i'm not making any novel or illuminating comments, about one that needs to be respected for those individuals i find themselves in the circumstance where they are not congress people with their sex. >> so would it transgender be in the female or male or? >> doctor collins, if it's looking at the metabolic studies of female runners, a transgender woman going to be signed to the female or male branch and if they are assigned to the female branch is there a risk that it makes the study less valuable or applaudable? >> i don't have an easy study,
6:43 pm
i think most will last for sex assigned at birth. >> thank you very much. >> first of all let me just say thank you for a truly informative and very hopeful tour last week. i also share my concerns about the infrastructure that we talked about and i look forward to working on that with you. law as you mentioned, a research has not always been inclusive of certain population groups like racial and ethnic minorities, this has resulted in treatment and health care practices that do not have work with the same effectiveness for everyone, all of us with research initiative have the potential to radically change what we know about minority health and how we approach the
6:44 pm
elimination of health disparities. what was -- role in the development of this initiative and how much -- how are you currently working on recruiting and maintain diverse adding minority populations in this research programs? >> thank you for that question, i arrived at an age when it was all the buzz, what i got here four years, ago i have been supportive and enthusiastic supporter of the colbert study and in fact have been one of the directors that i've worked with eric freshman on his quote, kitchen cabinet icy director, so we are very enthusiastic about, it first on the fact that it will be tremendously rich research resource for future investigators, it already is the largest study of latino participants and african
6:45 pm
american participants with 200,000 fully enrolled, so we are very supportive of it, so i would add to the inclusion of diverse participants in nih have improved a lot, we are about 30% now, that one of the problem areas has been a genetic study and we are working systematically to address it. >> it seems to me that there are multiple opportunities for nimhd to consult and collaborate with other institutes to help to define a better focus on health equity and to ensure appropriate minority representation in clinical trials. what unique portfolio has nimhd defined for itself in the ten year since it was elevated into an institute? can you give us some examples of research studies that are
6:46 pm
being led by nimhd. >> thank you again, our involvement with law other institutes is, full i've met with every institute and center on the nih campus, we have for the last four years been working on redefining the categories of these disparities, how they display, deep scientific vision-ing within an age scientist and having a strategic plan for all of nih that we have led for minority health and health disparities that is almost completed and needs to go through the final clearance processes, so i presented to the institute directors and i worked with them on it. now nimhd participates in important
6:47 pm
programs, we cofounded a study and the expand health study in the institute. we work closely with the national institute on drug abuse, on the adolescent cohort study and we agreed to continue supporting that, we have been part of the centers for aids research and our, and allergies and infectious diseases, and we put out a call for her own research community and we asked other institutes if they're interested and we had a timely post hurricane maria research that had to be from puerto rico, and we had people who agreed to set aside money if they got applications that were in the area and sure enough the law national cancer institute on aging all had
6:48 pm
funding along with nine or ten that we funded ourselves. >> i understand that there have been some challenges with the and i am hd endowment program, i'm not gonna elaborate on what those are, has that been really invigorated and how does it contribute to the mission of your institute. >> briefly the endowment program is money that the nih provides to an institution to be eligible have less than the 25th percentile of the average endowment, they have to bank for at least 20 years after the grant, so the amount varies, right now it is at 2 million per year and they did every ten years so you can do the math, 20 years, 20 million dollars. they use the interest to develop programs that promote their research capacity in
6:49 pm
minority, health health disparities, most institutions are working around training and other infrastructure that relate to research and not administrative work. we have gone through our advisory council went through a review in the first year i was here and there are no restrictions on applications, right now our budgetary alignment was full but in 2020 we will have another funding opportunity analysis and we will have no issues eligibility. it has been linked with having a center of excellence funded, either from nimhd for her sarah, we believe that is a limitation that will limit the institutions much more than anything else we have had. >> thank you. law >> doctor collins, welcome back,
6:50 pm
great to see everybody here today and thanks for participating. i had a couple of areas i want to ask about, i know in may there was a supporter that and i each wanted to hold with the usda looking at a collaboration with research opportunities that may lead to transitional benefits in other fields, looking at animal research and how, specifically on farm animals, and i'm just curious as to where you see that going and maybe what benefits might come out of that? so that's one area i want to talk about, the other area i wanted to ask you to address is anti microbial resistance and what our strategy is for combatting superbugs if you will. >> thank, you those are both great questions, i will start if others want to jump in they should signal me. basically you
6:51 pm
are cray right, there are great opportunities at looking at health issues by comparing what happens between animals and people, we are very similar when you start looking closely at various metabolic pathways and illnesses that can happen, certainly we add nih have tried over many decades to build on that and certainly there are many instances where there's illnesses that we want to understand in a model appears on a farm animal and we can learn about it, both on the mechanism and what possible treatments might work. for instance right now we are having a great concern over, this eastern equine encephalitis that is had a bad outbreak, it has killed some people, that is really a disease of horses and it is interesting that there is a vaccine in horses but not yet one and humans, go, figure there's an interesting story about that. so i totally agree and usda has been a wonderful partner in this and they have a great interest in research, a
6:52 pm
lot of their dollars go into other service activities that they are required to do, certainly this also applies not just a farm animals but two other animals. certainly thinking the very first effective gene therapy for human disease was for an eye disease, called -- we knew i was going to work because it was a spontaneous example that happened on a particular dog, some of you might have made that dog a few years ago because it took a tour in the capital after having the therapy work in a couple years later worked in the, kids so we get it. anti microbial resistance is a vexing and deeply troubling problem because we have instances where organisms are resistance to all known antibiotics that are causing outbreaks particularly in hospitals, we have done a lot to be sure that we track those down quickly and hospitals by providing the kind of diagnostics necessary to understand the transmission.
6:53 pm
basically there are two problems, one overusing antibiotics it is cause these resistant organisms to appear and the other market failure. where essentially the development of new antibiotics has not been appealing in the private sector, and age is role and this is been supported by this congress by providing resources is to try to be sure we are doing everything we can to develop that next generation of antibiotics to take it further down at the pathway towards an actual approved drugs to do risk these projects so that an industry partner will decide they will take it up even though they know they will be able to profit. i think that is making progress but we are still well behind where we want to be to say that this is a problem we solved, we have not. >> you may be surprised that the national librarian medicine is playing a role in this, one of our research is a universal
6:54 pm
biologist who uses computation to ceo microbes over time, thank you. >> i just wanted to add one thing for the animals, we have a collaboration among 12 in veterinarian schools with the same number of ctsa hubs that are looking at diseases commons between human animals to see what we can learn from setting those together, as a matter of fact, next week we are at the ctsa annual meeting and we are having a, speaker a representative come and talk to the entire group to figure out how we can expand this approach. >> thank you very much. >> can i also add that platform technologies have traditionally moved from human to animal care, this is a great opportunity for
6:55 pm
further growth from the bedside diagnostics of bacterial infections, doing that rapidly on sites by owners, wherever they need to do this as well as intervention approaches like the micro -- microbial vaccine that i was just talking about. >> and to my colleague, the issue of animals, we have taken a hard look most recently at the rule that was approved by the usda in dealing with lessening the inspection force, on a swine slaughter and also with line of speed they have taken off the cap so right now the inspector has not -- so if
6:56 pm
you just them cap they will be very little ability to deal with that, second part of it is with the fta and the regulation of the youth of antibiotics in livestock, serious issue john and you are thoughtful about this, take a look at this because in fact we are allowing -- we don't allow it for a growth promotion any more, antibiotics we have to have it if there's a sick animal we need to have veterinary provide prescriptions but we have this gaping loophole that says it is -- we can use antibiotics for prevention and that has opened
6:57 pm
up unbelievable because of the way we are dealing today with a heard of 5000 swine, they used to be 15 or 120, many ski illness and disease but now it is also for prevention and that means that you can buy a pork chop, you get it and you get ill and then we are then not able to treat you or we treat you and it is resistant because it's the same thing, longer than i want to go but you need to check with what's going on at the department of agriculture and with the fta on what is a very serious issue, sorry guys, it's there, we did something about it. we put a limitation on this but we will see where we go.
6:58 pm
>> thank you madam chair and thank you all for being here and sorry that i miss the testimony i had to meetings back-to-back but i did hear in rose very happy to hear that funding for first investigative researcher is up considerably in this year we will have another record so i'm very happy to hear that people back on the most be very happy to hear that. back in march doctor collins i asked her to study, or an update from the national academy sciences that had a report in 2011 in 2016 for every single drug approved had and i age support, i think i asked at that time was there an update, i will ask a question again because i would really love to have an update on that, is there an update study that you can? show >> that is a very important study published in the proceedings, the senior officer was fred and he studied all the ten drugs our approval act between 2010 and 2016 it
6:59 pm
concluded that 100% of them had and put to get to that point of improved there he. it is not funded by us but by the research friday, shown one that i suspect might be interested in renewing the effort, we can reach out to them and see if they would like it, it's almost better if it's fun and not by us because it will seem less self serving, i suspect that the answer will be very much the same, the way in which our ecosystems works or the kind of basic science or research gets handed off as they turn into fta product has been the envy of the world,'s been very successful and i think it hasn't changed the last two years but i will reach out to that foundation and see if they would like to update. >> i would really appreciate the nudging because especially now this is something that people talk about race at home and this would be very valuable,
7:00 pm
. thank you, another question in july the administration made changes to the nih requirements for fetal tissue, and there is an ethics advisory board and i think it was something like no fewer than one third or one half should be scientists with substantial accomplishments with research, i have researchers in madison who conducted this and they want some clarity on the guidelines for this election process for the advisory board scientists, specifically will be an effort to appoint scientists with substantial experience or substantial accomplishments involving fetal tissue? >> you are crate right that the new guidelines require the establishment the ethics advisory board and the constitution is laid out in legislation from 1993, so this is not a new formula and it does say between one third and we are not quite one half of the membership should be scientists without particularly
7:01 pm
specifying what disciplinary expertise they have. and the appointment being made by the secretary of health and human resources, this is the moment i think where ideas are being put for their about what would be an important roster, for us at nih we are interested in seeing this getting up and going so that additional applications for human fetal tissue research can go through this additional level of review when it's gonna take some time and so it will over the course of the next several months that we will be approving such applications but if it gets it up and can be constitute in such a way that they can review these in a timely manner than that is what we expect will happen perhaps in the next year. >> any idea on the timeline? >> i couldn't really guess at it at the moment. >> finally a question on autism specifically, and how it relates to people who are transitioning from youth to adults, ages where there is
7:02 pm
room reporting that the committee that said about 2%, less than 2% of the combined autism funds are going to that specific population of people who are transitioning to adulthood, i was wondering if there are any opportunities for additional investment regarding people with autism and understanding the issues regarding the lifespan of people with autism. >> certainly a very appropriate question i think most people when they hear the word they're not necessarily thinking about these groups of individuals who are entering adulthood, many of whom will actually tell you they don't really appreciate being considered in the same boat as a child with autism who need a lot of intervention. we are certainly looking at that, the nih has a very vigorous portfolio and autism and through the eye a cbc that you mentioned, this kind of
7:03 pm
opportunity for thinking about the priorities is welcomes up and doctor josh who is the head of that, doctor brennan. >> i would like to comment the national library is working into areas related to, this one is we have a researcher at the university of cincinnati who is working on creating the pop-up medical record for children aging out out of supervise care to individual care, although it doesn't address autism directly it addresses how they move into self management of health information. the second piece was using innovative technologies to bring into adulthood some of the tools that may be necessary that are less stigmatize in terms of the -- but also social cues, and visual technologies that are helping a person try to function in their adult life
7:04 pm
and things that they need to do to continue to work there. >> thank you very. much >> congresswoman for angle. >> thank you all for being here and i enjoyed my visit, i want to follow up firsts with doctor tromberg, i might be asking you something you already said, but sometimes when you hear something for the first time it doesn't really penetrate, so on the imaging, is there anything on the mammograms that is going to lead to him and not having to have those regular mammograms all the time? >> yes thank you for your question that's a very active area of research, there's a number of things going, on first in terms of demography there's a lot of work to improve mammography and new techniques to help us read mammograms better, and other
7:05 pm
technology using digital breast -- it gives you a three dimensional view, better appreciation for detection and diagnosis, then there is alteration to mammography, using lasers, very short pulses that create sound waves deep inside breast tissue so that you don't have compression and contrast asians. there is an enormous amount of activity in the mri community and using artificial intelligence we can actually do mris faster and more than expansively, so you can reap the benefits of an mri but possibly do it with smaller and more compact bases, so this is a very active area of engagement in our technology development community and everyone of our target gold. >> so where are you in terms of something being available to the public so that you don't have the compression mammograms? >> all of these technologies that i just mentioned are in various streams of both
7:06 pm
clinical studies, entirely computational studies so advances that we don't even have to build some of these technologies, we can model them and then do simulated clinical trials, the fda has just published a paper doing that exact thing, comparing digital mammograms with digital breasts -- saying which one is gonna work better and trying to figure this out. the mri studies are going and photo acoustic tomorrow foresee, that technology is being developed and commercialized, so a lot of interesting approaches and they can potentially provide information at all stages of care. >> so those mris to go in the claustrophobic tubes? >> so there is a number of beautiful advances in both
7:07 pm
magnet technology that is making the magnets more portable and computation to do imagery technology, also there is a big two but you also have a coil that picks up the signals after the radio frequency is launched into the body and then you have coils that pick up the signals from inside the body, those coils are being made for individuals now, so breast coils and hand coils under flexible so we can look at movements, other type of body cools so they make it even more compatible inflexible with each of these applications. >> okay i don't know you said if you still have to go into the tube or not? >> well i think if we're going to have mri were going to have some kind of youtube, so one of the big advances though in brain mri just to pivot a little bit is a small cap there you can wear on your head and that's portable, you can still move around and it's just looking at the brain, so as
7:08 pm
those technologies develop and get out there they can be translated to other applications such as breast or -- imaging, so wonderful opportunities to see this develop and move into other areas of importance. >> what about detecting ovarian cancer? >> this is certainly one of the most difficult things to do when there is a lot of work going on to try to do liquid biopsies, there is been a number of really exciting advances and being able to detect and diagnose ovarian cancer during surgery using technologies that take, if you think of medical research you often think about microscopes, imagine you can take the most powerful microscope internet into a small hand held endoscope and get the same or even more specific information, then you can stick that inside the body and you can help guide ovarian cancer surgery, we know that surgery is still the best therapy for cancer, we can get
7:09 pm
lots of sells out very quickly, what if you could identify every one of those cells by looking at the same micro structure of a cell that a pathology uses, they take the tissue out and examine it for weeks and then can give you an exit answer what if you could get that information during surgery and then get rid of all the cancer, so that is the one and vans it is going on an ovarian cancer. >> i just have one more question, have you had any directives from the trump administration to discontinue or change research on reproductive health e? >> we are all looking at each other like no. >> i don't want to give anyone any ideas, but of course there is as we talk about a minute ago this limitation on doing research on human fetal tissue,
7:10 pm
if you want to include that they would be an answer to your question i wasn't sure if you are thinking about that. >> thank you, i yield back. i >> thank you i apologize for not being able to hero your testimony, i was in another hearing but what i've heard in answers to your questions have been very intriguing, i want to ask questions about the disparity in health with mortality, i want to know what is actually happening in researching those particular issues. >> what resources are applied. >> thank you, a critical question first they are really establishing collaboration with other institutes and centers about this topic i think being led by the national institute of child health, we are very much there as well as other offices across the department
7:11 pm
so we have to think of maternal mortality as a continuum, as the worst outcome of what we call maternal morbidity, having sickness or illness as a woman goes through the process of conceiving and having pregnancy and delivery we look at disparities the african american women, american women -- indian women have more mortality, we have to look at the continuum what happens at conception, injuring prenatal care, visiting the hospital the clinicians and take care of the delivery and then very importantly postpartum what happens and then each of these places in this continuum there is opportunity for intervening to decrease these disparities, african american women for example have greater burden of cardiovascular disease and diabetes, african american women may have a greater risk for developing thrombosis which
7:12 pm
may lead to clots. >> that's really what i'm getting at, what are we doing in terms of researching the wise of all of that? >> a lot of it develops on -- the why is it genetic, behavior, is it a pre-existing illness? >> but a lot of it has to do with the access to the quality of care and the settings where they are getting their care. >> so are we doing intensive research on these disparities and why and things of that nature. you say the problem, i agree, i want to know what we are doing about those things, are we initiating research studies, are we doing what everyone does in this space? >> the process has come very much to our attention, we actually funded a research grant in new york city that
7:13 pm
examines this level of continuity of problems, looking at how much was related to the mother's health leading to bad outcomes, how much was the carrot she was getting into the setting she was going to. you >> are you able to isolate the amount of resources that have been identified for looking at these issues, if i asked for a report on the dollar center spent on this area can i get that? >> i'm quite sure we could figure it out, i'm not sure if that's one of the things that we track worry automatically keep track of dollars but we can try to see what we can do, i will tell you this is an area and thank you for particularly drawing our attention to this, that all of nih is now focused on with much greater attention considering the trends are all going in the wrong direction so there is now a trans and a huge group of high-level research
7:14 pm
leaders including -- trying to figure out what we are collectively not doing that we should be in this space, now just to identify what the factors are but to identify possible interventions they can be tested in a research environment. >> thank you, i guess for first time investigators you did 1287 of them? >> that's exactly right, that is last year and at this time this morning we are going to break through that sued. >> so could you breakdown for us the racial or ethnic breakdown of those who are investigators that are getting these opportunities for us. >> i don't have the numbers in front of me. >> i would be glad to provide them, i will tell you that there's not as many as we wish there were but we are working very hard on, that we have programs to increase the diversity of our workforce. >> thank you, to the chair if
7:15 pm
it's possible, not only would i like to know the numbers and like to hear whatever efforts are being used, i have one last question, i was told by a doctor that at the age of 75 you no longer get a colonoscopy, why is that? >> the united states prevented task force, decides whether in fact that they are justified in terms of benefit or risks, they have looked at all the studies, this has recently been reevaluated to assess what is the benefit of cohen oscar p, their conclusion is by the time someone is 75 at that point you have not had any identified cold abnormalities you are not likely to have them in the future, you were like out of the risk zone and into the clear. >> well i wanted to make sure
7:16 pm
someone was in the junior 75 and you're not worthy. >> that is not the reason, it's a much happier outcome. >> i asked the question before when about autism and what's happening when it leads to minorities and the research and starker doses, i just wanted to ask for updates on that and with that i yield back madam. >> if we did and a response to coleman, doctor it let me address a couple of things here, you talked about and see eye h and the natural products, dietary supplements these products they are unregulated as you know so consumers have to seek out information on the
7:17 pm
safety and effectiveness on their own law this is interesting to me and i'll say it here so it's on the record, i believe that we ought to regulate dietary supplements some of the claims are truly outrageous but, how do you disseminate your research findings to the general public, how do you work with the fta and other federal agencies that looks at the research findings and what is the outcome, have we used your research in a positive or a negative way to say that you should stay where
7:18 pm
you should go. >> thank you these are very important questions in terms of dissemination first of all highly important and we don't want people to be getting the information randomly from the internet, so ncih is very active in maintaining a list, it's actually an app that you could use on your phone, if you want to look up a specific type of nutrition supplement or natural products of some kind you can look it up and you will get the information right there, that is constantly updated, the other thing you mentioned is finding out, for these products effective, do they actually work? >> and ncih conducted a number of clinical trials early on when it was still called something else and co-and academia, that people weren't taking and find out do they actually work and most of these
7:19 pm
trials ended up showing no law significant benefit, what we think is not abandoning this research, what we need to do is actually go back to the lab and take these plants where whatever they are see if we can find a in vitro and see if they are actually having effects anti inflammatory effects would be an important piece, if we can find this we can find out if it actually worked and then test that in a clinical trial, but it's almost like we don't want to just go and pick something off the shelf and do a clinical trial on that it wouldn't make any sense. >> i would like to proceed with this but this whole area of dietary supplements has been
7:20 pm
left, i was pleased to read your testimony and what you're doing but there needs to be serious collaboration with what can you go back, look at the properties and see what is relevant and other areas but there has to be you know some defining answer to what is on the shelf which people are just picking up any using without any knowledge of whether or not it's going to address whatever their need is in this regard, doctor collins. >> there is an office of dietary supplements at nih, that works closely with nccih one of their goals is to make sure that all the information that they have is available in labels, so 80,000 labels on dietary supplements is available, unfortunately lot of it is incomplete because it's not based on any rigorous
7:21 pm
scientific study, there was a federal task force last year that pointed out the lack of data for the safety and utility and i did see fda earlier this year back in february signaling that they thought it might be time to look more closely at dietary supplements, so what you are saying might be getting some traction sue. >> i hope so but we are going to proceed to make sure it does a ranking member goal not be able to get back so i'm gonna ask a couple questions than they be some time for your questions. with regard to the pain research that you are doing, we are spending enormous amounts of resources to deal with the issues of opioids, your work is critical i hear, one of the things i very much
7:22 pm
wanted to do is to look, honestly today if you have a great ad who deals with opioids you'll get the money to do, so it's really a crying need. but with the kind of research that you are doing it that needs to be overlaid in my view on where we are directing our funding, i don't know how far along you are with what you are doing to provide us with some real sound advice on directing dollars to what is appropriate, what will work rather than just saying okay we have to do something, here is the money for opioids, it seems that we shouldn't be throwing good money after bad, i don't know what's working or not working, it may all be working but i think you have a really big piece of the puzzle
7:23 pm
here to help us to deal with that. >> i would agree and as i mentioned before we are conducting a large effort right now and what we call pragmatic trials, so basically we take their piece that have been showed to be effective in a controlled set a, say in a randomized trial compared to placebo, then we say okay if we put that into the military where we have a big effort in collaboration with the department of defense to test behavioral interventions in service members and veterans to see, can this be implemented in that health care system and does it help with pain. so that's an area where it's very pragmatic, we want to know just the way these studies are being delivered and do they actually work, do they actually help patients? and then at the other end of the spectrum we are
7:24 pm
investing a lot of efforts in our basic pain mechanisms to understand, what is the effect of emotions on pain? you know the same painful settlements are very different depending on the move that you're in, so we need to understand that better, some therapies are actually interacting with that, how opioids for example have effect on the brain it is very different depending on if the person is depressed or not, so it is very interesting and we need to understand that better, understand pain research better. >> this is such an important issue all of the institutes have been asked to come up with the most creative possible ideas that we could use to approach this epidemic of opioids death, and paid treatments for the people who suffer from chronic pain, we broke this down into 60 different themes including
7:25 pm
working about people born addicted because their mothers have had that issue. that doesn't look like particularly an impressive diagram but underneath that are more than 40 different funding opportunity announcements and have been issued over the course of the last year and a half thanks to you because of the provision to nih, 500 million dollars a year for this particular initiative which we call he'll addiction long term, we got an outpouring of response and unfortunate what you said not everyone did get it funded, some people are still pretty mad at me because actually the success rate was more like 20 present because there is so much opportunity, there it is everything from basic science to understanding how pain works and the healing community which is moving into four states to see what happens if you bring together all of the stakeholders and see if you get any open the make of overdose steps, there will be more announcements later this week so it's a timely question
7:26 pm
for you to pose, and want to assure you this has been all hands on deck for everyone around this table and for all the people you don't see working on it. >> thank you so much, congressman. >> thank you for covering my first question, i appreciate that, first of all doctor collins since the administration did not allow them to come before our subcommittee i do want to raise an issue which i'm sure you are very aware of and while i am very pleased that someone is so experienced has been put in the position of acting director to be the an eye they are, i'm sure there's not a concern that there is not a nurse in that position and so what i'm hoping is you will quickly find an
7:27 pm
outstanding a ph.d. repaired nurse to lead that institute, it is one edge to make that point. doctor, expanding this scientific workforce for biomedical and behavioral research and increasing its racial, culture, and disciplinary law -- it's one of the strategic goals and it is essential to ensuring that discoveries the lead to health care innovations and cures, the question i have is as the first nurse director of the largest by medical library, what efforts are you leading to build a diverse educated workforce and how are you ensuring that this workforce will include not only physicians appeased scientists but also clinical practitioners across multi disciplines such as pharmacists, nurses, physical therapists and
7:28 pm
psychologists. >> thank you very much for the opportunity to address that, and i'm also coach airing the director of law -- the doctor is my co-chair with this so we are off and running, second need to address the workforce issues resort at home for us so we have initiated an internal training program for all the 1700 women and men that work at the national library of medicine to do individual assessments and when where the data science skills that we had across the board from librarians to computational scientists and to the clinicians i work with, us second and we are helping to lead across the nih for development of workforce competencies that address not only scientists but also those that require new scientific information, particularly making sure that clinicians have the ability to read it understand and learn from data science driven resources, find they are also funding a initiative that actually
7:29 pm
directs to lay people, to patients to help understand what does it mean to have data driven discovery, we recognize that building the evidence for a practice is going to require that clinicians you learn differently about how they interpret evidence and so projects they use artificial intelligence to make interpretations of clinical images or make recommendations about how one might expect a care process to occur require that it bring clinicians along to understand how to interpret this information so we are looking at curriculum and enhancing the library science workforce and the health science center so that across the house science curriculum physicians, pharmacists, behavioural scientists and nurses have access to this dated concepts, finally we have to recognize that we need not only the ph.d. prepare workforce but we need community college trained individuals, we
7:30 pm
need laureate individuals that can help with data preparation and making sure that we can actually safely learn from the data we are requiring. >> doctor austin, one of my legislative priorities in congress has been newborn screening, since these first passage in 2008 it has supported federal program said expand programs ensures laboratory quality and supports the secretaries advisory committee in newport and children, the law also authorize the newborn screening research program to identify additional conditions for a warrant screening in to develop treatments, i understand that it was created from several exist in initiatives that
7:31 pm
included too rare disease research programs, you're mission of a new treatment is a priority that is shared by all parents and children born with the type of rare diseases that newborn screening can detect, they have similar missions, i'm interested to see how they work together to investigate new treatments of treatments and disease that can be detected at birth, and what are you currently investigating for. >> wow what a great question, i will try to be brief although it will be difficult given the question, the opportunity here is absolutely huge, the way to think about this is moving, as i think i mentioned before from the idea studying one disease at a time to studying as many
7:32 pm
diseases at a time, eventually perhaps all 7000 at a time a newborn screening has novel technologies that will allow us to make that transition, what i'm talking about here is to you know sequencing, about 80% are genetic and most of them can be detected if we use more wide spread genome sequencing before children and leave the hospital, we are already doing this via some work we are supporting a children's hospital doing genome sequencing for sick infants, but the larger application here is too short circuited entirely what is called the diagnostic odyssey that is this terrible wandering in the wilderness
7:33 pm
that parents do with rear, children with rare diseases where they will go through five, ten, 15 or 20 years of going from provider to provider until one provider says, i know what you have, i won saw that in medical school but there is so rare that they have to go to multiple providers to identify, most of these we could to find and identify at birth, with newborn screening across the genome, so one would ask why wouldn't we do this? so this is not so much a technical problem, there are people who are doing supported by us and the genome institute deploying these technology. combining rapid genome sequencing that can be done with a little as 24 hours from the time the consultation is done to when the data comes back to the carrying position and using ai to interpret the
7:34 pm
data. so the limitation here as we have talked about before, it's called implementation science, so once you have proof of principle and the technology has been developed how do you disseminated to the whole community? this is a complex problem that includes not just research but reimbursement etc, but the important lesson here is that the only reason the odyssey exists is that they see us leaves home in the first place, remember that he has to take ten years to get back, if we sequence these children before they left we would never have that odyssey and realize that during that ten years the quality and quantity of life or those children are declining and by the time that their family diagnose they're off in behind our ability to reach or they have died and so this is something that when i was in training 35 years ago we knew
7:35 pm
this happened but there was nothing we could do, this is utterly changed in the last 35 years and so we feel of real urgency to diagnose all children who have a rare disease, many of those can be diagnosed but not all and still systems exist to identify this much more efficiently, it's an implementation science problem. >> but is there any collaboration and working with -- >> a boy, yes, we are joined at the hip, we hired a person that used to be in age see idea to help us around this and we are also doing this at an international level, this is an international problem up until last january, i was chair of
7:36 pm
organization called the research consortium in, while i was chair i'm proud to say that we developed three new strategic goals for the next ten years, one of which is to decrease the diagnostic odyssey to one as well as develop in the next ten years develop new therapies, we think that those therapies are only possible when you have a diagnosis and those diagnoses allow you to group diseases to do the therapeutic part of what we call this, which is to say if we can target with a drug, a commonality then we have just secured 20 diseases out once, not one or platform technologies like the jean there the that would be applicable to many diseases at a time so there are diagnostic aspects and therapy aspects and
7:37 pm
information aspects rebuilding databases to make sure that they are a friendly which we are doing as well. >> i think we need to do something to address those challenges that they face. actually i'm going to submit a number of questions for the record and you all have been wonderful, and do you find that your work i have a couple of things and on and with one question doctor the clinical trial dot gauff, just to build on the question that the congresswoman asked talking about is, dealing with how can we bring more diversity into the clinical studies, can you do that through your effort, how do we improve on that clinical trial dot gum of, you know to bring more people
7:38 pm
including the underrepresented groups. >> thank you very much for giving me the opportunity to talk about one of our treasured resources? >> there are, two key parts of, this one is saw the public know that our trials are available, and we have worked with the supportive leadership to launch an improvement of the interface for clinical trial so that it is easier for people to find studies and we have develop better search strings so that they might not be the precise way this trial has been described can actually finance, bow in addition to this we are also working with community based groups and in this case it might be breast cancer dot or your special purpose communities to extract from our clinical trials an entitle swede of studies for neighborhoods a they're working on war populations are working with and expose their studies through the lens of the specialty organization.
7:39 pm
>> thank you i'm going to follow up this is a heroic issue on the medical society and their journal being removed but we will follow up about that. >> thank you, i do want to do this, i want each of you briefly, i know it's a bow resources if resources were available though, what is the innovative research that you would like to pursue, doctor you just mentioned this, it's really quite extraordinary and the direction that we can go and let me just ask you where would you like to go and what would you like to pursue. >> well look anyone who wants
7:40 pm
to go first can go first. >> well one of the areas it i'm really excited and passionate about this kind of this idea that current medicine takes snapshots, kind of static snapshots, a little bit of blood chemistry there, may be another year or two after that and an image here, maybe another year or two or five after that, blood pressure, even that is not measured frequently and it's difficult to measure at home and some of you may know that every time you breathe and now you're blood pressure changes, we call this dynamics, dynamics can be the most important thing about managing your blood pressure, then you go to the doctor's office and her blood pressures elevated and they give you medication and then you go home and then you come back later and they say well it's not working and then you go home and you come back later. so there is this iterated of operation, current medicine is practiced a long time interval,
7:41 pm
so a big challenge for communities to come up with better, fast a, more accurate and continuous wearable an implantable sensors on our measuring many conflicts things because we know biology is not simple and we also know that it is quite dynamic and if we can capture the dynamics every time you eat your body chemistry goes crazy but how about if we can measure all those things and figure out how to better manager diabetes and prevent obesity. >> what if this continuous flexible patch that is an altar sound device that checks blood pressure on a continuous basis so what happens, we can fall that with everyone in how odds regulated by how all the medication is, so the big challenge is what i would do to extend health span, so would prevent to seize better and give people the power to
7:42 pm
control what they do and how it impacts their future health, so that's the picture. >> thanks very much, so he brought this machine and i said what are you doing, i mean so he doesn't use it etc and has it's become a non functional piece of equipment that we now have. >> as he tried with his arm up and down? >> in any case it's very interesting and i was very serious about the allergy issue and i really is quite extraordinary in terms of quality of life and i'm very seriously having to look at everything that you are eating and know what you are eating in what kind of effect that will have, thank you.
7:43 pm
>> where would you go? >> our big idea right now is very much on the same lengths that the doctor was talking about with hill span, we are very interested in health and the dynamics of it, we often think oh we want to prevent disease but one of the things that we don't think about so much is how you restore health, how do you get people back to health after they've been sick? if you have a chronic condition for example that has relapses, how do you return, how do you recover so there's all these wonderful words that start with our, recovery, resilience, repair, regeneration, these are all mechanisms that we are starting to understand now an animal models and basic biochemistry, but how do we translate that back to the human level and how does that relate to what's going on psychologically,? we talk about
7:44 pm
psychological resilience, but how about physical resilience, so we really want to move into that space and understand, especially to utilize behavioural, physical, nutritional interventions to try to promote that and encourage built and mechanisms of how that we all have inside us but how do you boost them how do you promote them? >> then national library of medicine is behind the scenes and every discovery that happens, one of the things that we do is to make information more useful, now the emergence of artificial intelligence and machine learning strategies we have the potential to take many different types of data types from genome deep, to pictures of food and apply it against analytics so that we can rapidly interpret what is occurring, give better and more ethically driven recommendations about whether the food you eat is going to
7:45 pm
cause this metabolic storm that is being protected, our work is advancing the analytics that makes this more useful to society. >> thank you, and i will mention to areas, police one is why some disadvantaged communities do better than predicted, so what are the factors to this resilience, i think one of our methods will be to leverage these stated tools that are available, both individual factors like all of a study and big data structures that exist, i have to mention a second one which is related to the dire conditions for the native american -- the alaska native population in the u.s., looking for a special way to strengthen their own capacity to build a research capacity engaging their communities on lands, including the urban americans.
7:46 pm
>> mri meeting with the acting director but we also have a tribal health research office, and we are in close interaction with the doctor on, that and just last friday i was with the reservation in new mexico. >> both of those committee seem to have very serious problems that we have not really focused our time and attention. on >> before you answer this question, i wanted to ask how do you avoid duplicating your work with pharmaceutical companies? >> there's two a standby question, one is the projects that we were gone, 95% of diseases in targets that can be were gone either because the targets are too risky or not well understood enough for the disease provinces too low, so actually the area of the kinds
7:47 pm
of diseases that they can work on his very relatively small, i worked on that before i came to the nih, and the science of drug development or the science of transition which includes the signs of drug development, regulatory science also fits into this, that is a more fundamental basic science really of how this whole process works that is not worked on at all and really can't be because they can't use this to answer fundamental science questions, so we work with them quite closely on one of the problems that they run into that kill projects and problems that they run into, we work just like we work with the fta and other organizations on those questions they make up about a third of our board because of these networks, so we do lots of collaboration
7:48 pm
with them as well. >> i want to answer the last question, a point where there is just a recognition of the amount of taxpayer dollar research being done that then it is picked up by the industry. >> they are aware of it but the cost of treatment is prohibitive to the recovery or the cure or the treatment of an individual and where the basic research is being done you know and you are institute at the nih and that needs to be figured into where we go in terms of the recovery, but it is better people can take advantage of the project. >> i will just leave it with
7:49 pm
one very provocative term what you mean out of her before, we are actually quite serious about this term, just in time gene therapy, so wouldn't it be great if one could go from a molecular diagnosis to kind of gene therapy which is customize for whatever the mutation that you have is, in a very short period of time and we are at the point believe it or not where was some kinds of gene therapy, particularly nuclear tie gina therapy it's the same kind of technology that is been used for muscular atrophy, but the idea is that one uses essentially a molecular band-aid to put on the mutated gene to prevent it from expressing itself and there are thousands of other diseases that are characterized by this kind of fundamental genetic legion and working with some
7:50 pm
researchers at children hospitals in boston who have used this kind of technology it became evident to us that we can work with the fda to figure out what are the general toxicology manufacturing principles of the fda needs in order to improve this for an individual patient and make all that information publicly available then that recipe is right there, when we are treating a physician they can go to that recipe book and pick that information up because it's in the public domain and potentially treat the child very quickly, the other thing that, as far as things that just keep me up a night because the opportunities are so huge are new uses of treatment that are already out there and we have put a lot of effort into this area since it was formed
7:51 pm
but the fundamental idea here is that through projects like the genome project we have discovered that they're not actually 75,000 individual diseases or individual jeans that are developed -- there just re-used in different ways and in different diseases, so as a result many of the drugs a target one could be used to target many others, so we haven't done a very good job at exploiting then we tend to say okay one gene one drug and edited that way, so one example that you may have heard a because the original discovery was done at yale was this ketamine example where ketamine has been around since the fifties. some investigators had nih discovered that this was useful for depression, but it's
7:52 pm
dissociative, it's an anesthetic, it's hallucinatory, so you can only give it as an iv or internationally, so it's not practical, so working with this on aging, and we said oh gosh, if it isn't actually ketamine doing it is there an active molecule in the body that is doing the anti depressive activity that wouldn't have all the other stuff. so doing some fancy chemistry we figured out what that molecule is an actually a byproduct that your body makes when a person takes ketamine it also happens to be orderly available so working again with our colleagues but anne we are working through the drug developing progress to see all the toxicology but to get into people and what is so exciting is, this has a completely
7:53 pm
different manic isn't that ketamine was thought to have so it is illuminated, novel in concepts in mental health. and potentially will give us treatments not only for depression, but potentially, there's evidence for, anxiety, and disorders and pain and also ptsd, so we will be doing, trying to treat all of those, in clinical centers, probably starting next year. >> doctor, i just want eat, quickly wrapped up from your point of view. >> do i get one also, about what it's like? >> yes. >> you do. >> so i haven't wrapped up yet. >> we have not had a chance, this conversation, because we have so many things talk about, a highlight, a remarkable journey we are in the middle of, trying to figure out, by developing new technology stores, a lot of them, pretty exciting, of those 86 billion neurons between your ears and, what they do, how to use that information to understand how
7:54 pm
to prevent, and treat skis or friend nick, ended up to, austin, and epilepsy, were now five years into this, this has support it with appropriation, we will alicia in the very near future, an entire new plan for the next five years which is, enough to knock your socks off, in terms of what the capabilities are to take part of the circuits, in the brain to what they actually do, looking back, the day will point to on other things, they will definitely point to this, as crossing into new territory we are beginning to understand the most complicated structure in the known universe, the human brain. >> extraordinary. i mean that, broadly speaking, in terms off, the information this morning, that's why i was so anxious, you know, very special to hear from each and, every director,
7:55 pm
centers to find out, what you are doing, so we can, be responsible enough role that we play, and fostering, what do you do. you know all of our kids have the expression, the testimony, it's awesome, really, that's, more than that, we, have the ability, which we try to do, to provide, the resources in order for you to carry out what you do, they are not unlimited as you know. but we try, our best, to continue the efforts i would ask, you, to pursue as you do the science,
7:56 pm
of what you do, none of us here, in signs, we're not were not doctors, we have got to take our lead from you, we cannot just pick and choose where we think dollars should go, but we need to, and we do have the faith and trust and you, to follow science. and have the money, the resources to help you to follow that science, that discovery, and area, and i ask you as well, doctor, talk about gene therapy and, we cannot allow people's personal knowledge, or believes, to direct where our scientific
7:57 pm
discovery and those dollars go. you are against that, it's oftentimes uncomfortable to enter that arena because that is not what your training, your professional ability, directs, but you have such standing, domestically and internationally, to guide us through, with the safeguards you understand better than anyone, what those safeguards need to be, what the ethics need to be. but we cannot, at the federal level be in the business of shutting down, biomedical research, it's not
7:58 pm
67 Views
IN COLLECTIONS
CSPAN3Uploaded by TV Archive on
