Transcripts For CSPAN3 House Appropriations Hearing On NIH Research 20240714

Funding and research efforts. This is about two and a half hours. The subcommittee will come to order, i thank you very much and i apologize for being late. They take on a life of their own but i just want to say good morning, good morning doctor collins and welcome back. Let me just say thank you on behalf of the subcommittee for hosting members of the subcommittee for the nra campus last week. We had a wonderful opportunity to learn more about in ages work. We met with researchers who were working to develop treatment for major depression, shrink cancer tumors. We heard from participants whose lives have been changed back Clinical Trials. So it was a moving experience as well and we welcome our witnesses, including the five director said join as today and, in addition, doctor Francis Collins as john this is many times as director of National Health, today joined by dr. Bruce, director of the National Institute of biomedical imaging and bioengineering, Helene Langevin director of the National Director of health. Doctor eliseo perezstable, director of Minority Health and the sporty. Director Patricia Flatley brennan, pediatrician and director of National Library of medicine. And doctor christopher austin, director of advancing conditional scientists. Your work, all of the 27 institutes and centers needs to treatments and cures for diseases and conditions that affect people around the globe. It is transformative and some of the greatest good that we can do in government. Each year we hold a Budget Hearing to hear from the united director as well at directors of five or six of the institutes. Todays hearing is an opportunity for the subcommittee members to hear more and from directors of an additional five institutes and centers. Which was very important to all of us. Whether or not i joined the subcommittee a few years ago, and we used to invite every director to testify. It has been a long time since we have heard from many of them, so, in fact, im going to be plain spoken about this, and my mom Ranking Member, congressman cold knows about this. I wanted to include the National Institute of nursing, i want to include the National Center, and the National Eye Institute as well this morning. Unfortunately, the administration denied our request on the grounds that we did not provide a weeks notice. Im disappointed but, nevertheless, we will find another opportunity to hear from other directors. 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 saying and how we can assist in that process. It is critical for the subcommittee to get a full picture of the nhl portfolio. The in h approved our quality of life and save lives. Im so glad that the congress increased the nih funding by nine billion dollars, or 30 . The subcommittee did this on a bipartisan basis. Over the last four years. The house bill increases funding for each of the institutes buy it 4 . Its a statement of our values and i reflect one of our commitment to invest and basic Biomedical Research at the end i watch. Its not overstating the case to say that the in h has prolonged every american. Because of this research we have childhood decrease cancer mortality by 50 in 35 years. We have a vaccine for cervical cancer, a drug that prevent hiv transmission with 99 effectiveness. In fact, a recent study in the proceedings of National Academy of Sciences Found that nih research contributed to every single one of 210 drugs between 2010 and 2016. That is your impact and it is amazing. So, to our guests, we say thank you to everything that you do, and we look forward to our conversation today, and let me turn this over to my colleague from oklahoma, the Ranking Member of the subcommittee. Im glad that weve had her back, she said the most excused absence of all time but it great to have her back. Ive already told the chair this. At some point i have to go to a Republican Leadership meeting, it has nothing to do with your testimony put up uncalled away and i want to congratulate our chair for scheduling a perfectly timed hearing because we need something to bring us together, and you guys do that so that, wonderful to see you. Today, we have our second Budget Hearing on the National Institute of health, and i want to thank the chair for having this hearing, inviting some of the institutes and centers, we did not get to hear from as often as we should, and i associate myself with remark to made about that. I look forward to learning about the research being done and the promise and cures of the future. I would be remiss if i did not recognize doctor collins, on reaching the accomplishment of reading that and i age four years. Hes the best politician in washington d. C. If he can get nominated by both president bomber and President Trump. A great deal of National Confidence in his ability that he has assembled there and has been there for many many years. Obviously, doctor collins as an advocate for groundbreaking research ive said it but the four years of sustained funding increase, what was very bipartisan owes a great deal to our confidence in doctor columns as the leader of this institute as well, and he has made the case up here for a lot of years as to why this is an important investment in a bipartisan fashion. I want to highlight some of the work being done through the support of the nih. I never says funded by the nih, so we need to work on that, maybe require that when they get grants. But working with colleagues at Oklahoma State university, researchers at the Oklahoma Medical Research foundation are using a novel threedimensional model to study the respite pretoria virus,s affecting belongs. It is a leading cause of pneumonia worldwide, and can take a particularly heavy toll on children, affecting more than half of their first year of life and 100 percent by 82,. The virus is highly contagious and for those with weakened i mean system from conditions like asthma, it can be dangerous and deadly. These researchers hope to reveal what predisposes infants to infection and create a launching pad for therapy down the line. This long in a petri dishes model could prove to be a valuable tool for studying, flew, allergies and asthma. Another area focuses lucas. Lupus affect up to 1 million americans but has a particularly chronic toll on African Americans, hispanic americans and native americans. Its an auto dummy indices, that with your own it mean system is responsible for the breakdown of its own cells. The information scene in the police can affect various organs and nobody, including the ones of joints, skin, and internal organs. The disease can be severe and lifethreatening, and cause permanent organ damage. Currently, there is no known cure. It remains a top ten cause of death in African American and Hispanic Women between the ages of 15 and 45, and you understand more about that, scientists are connecting largescale genetic analysis. It will focus on 25 seen that happen previously linked to the disease, the goal is to identify the genetic corporate that burden African Americans with lupus. The study built on the groundbreaking work at the Oklahoma Medical Research foundation in the lupus space, including the discovery by one of its own researchers, doctor judith james, it can delay the symptoms of lupus. These medications are now part of the standard treatment of care for many lupus patients. There are countless quarries like these and groundbreaking research taking place around the United States as a direct result of nih funding. A simple idea can open a new field of Biomedical Research. All americans benefit from this research, future generations will benefit, from the ultimate promises from the research being done today. Despite the controversy that can surround this bill, support for research at the in h has been broadened and bipartisan and supported by leadership in the house and senate alike. Recognizing all of the interview directors today because it rather hear from them. I want to think each of you and your colleagues and those institute and Center Leaders that are not with, us that our passioned, dedicated, and do hard work. I believe that the work will change the course of the Disease Detection and treatment for years to come. Thank you, madam chair for holding this hearing and i yield back my time. Thank you very much, a congressman coal. I would just say, im not going to into what they do, but im so proud that the yale school of medicine has one of the clinical and transitional science awards. They are a hub and its amazing work that gets down there as well. So we thank you for that, so let me yield to the chairman of the appropriations committee, my colleague congresswoman. And i think my chair of this Extraordinary Committee for this hearing, which is still very important. And i think, im sorry youre leaving, but i think my good friend mr. Coal for holding this hearing. Theres no question that whether its chairman coal or not chairman coal, there is bipartisan support for the outstanding work that you are doing and i really thank my good friend chairwoman the laurel for holding this hearing. And i welcome our exclaimed panelist and doctor collins. Ive been reading you with a big smile for many years, and i really appreciate all that you and your team do. Earlier in the year, however, the Trump Administration submitted a budget that it would cut the nih by 5 Million Dollars. It Crystal Clear that President Trump doesnt 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 that you do to save lives, and then skewers and improve the health of americans. Despite the president heartless and misinformed efforts to get the National Institute of health, 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 worldclass National Institutes of health. Our house past, fiscal year 2020, labor health and Human Services bill, that would provide two billion dollars more for the National Institute of health, including a critical across the board increase for all of the institutes and centers. This would allow the National Institute of health to respond to scientific breakthroughs that responded from outstanding Research Done at the institutes, such as those with us today. We have the distinct pleasure to hear from several institute directors, who are leading innovation and their respective fields, and theres so much innovation going on i dont know if he just threw the numbers of the institute in a hat to try to pick which ones are here today, but i really look forward to hearing your remarks, not only will we hear about the encouraging advances but also the exciting innovations that are just over the horizon. Were talking about lifesaving achievements that, with our continued commitment and investment could soon be on our doorstep thanks to the National Institutes of health. So, rest assured the administrations attempt to slash your budget will not 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, so thank you all for everything that you do just to improve the lives. We will proceed to Opening Statements from the panel, with six Witnesses Today so we have asked you to please offer three minutes of opening remarks, im sorry to curtail the five minutes that we want to get it all in. Doctor collins, again, welcome. You know the drill, the full testimony will be entered into the record. You are now recognized for three minutes. Doctor . Collins good morning chairwoman rosa delauro, distinguished committee members, im Francis Collins, the director now for over ten years of the National Institutes of health. On behalf of nih, i will think the committee on your efforts on the funding bill that passed the house in june, we are really grateful for your ongoing in bipartisan support. We were very pleased to have a visit by some of you last week,. Today i am joined by the leaders of five of the National Institutes of health 25 centers. Director of National Center for advancing transitional sciences. Im always impatient for basic research discovered to be translated into ways of new ways of combatting disease. Treatments exist for only about 500. Addressing the gap requires translation or research, one of my first initiatives on upon becoming director was to ask congress to create in cats to create the process. Next up is next to me on my left and right. Their focus on innovation that advances medical research, a database that provides research to more than 5 million articles for biomedical journals, and another is Clinical Trials that of, the online catalog of trails, which is a Great Research to share, that where you can find the trails. Now, director of Complimentary Health, which just celebrated their 20th anniversary. It was you, this subcommittee that established the center and 1989, citing the need for more evidence on Complimentary Health practices. Next, let me introduce doctor eliseo perezstable, directive not National Institute on Minority Health and labor disparities. Its important to meet him for many reasons, including many asked about the critical issue of mortality. Also part of todays, its director of National Institute of biomedical imaging. They engaged new types of innovation to create a smaller, faster and, less expensive medical technology. Again i, thank you for the opportunity i hope this explains why im so excited to lead all our institutes and centers, working together to encourage this next generation of researchers, and i can assure you we will speed the path from discovery to health. Well be happy to entertain your questions. Thank you very much, doctor collins and for being so sustained. Unusual for me, i know. Now, let me just recognize you, your full testimony will be entered into the record. You are recognized for three womens. Thank you. Its an honor to represent the thousands across the country were developing Innovative New technologies to improve human health. Ive only been director for nine months but spent 30 years pioneering new optics acknowledges and pioneering at the university of california. We transform through the innovation of disease. We support Cutting Edge Research that can be applied to a broad range of Biomedical Health care problems by building strong partnerships with academia and every institute and center. Our programs lead to better faster and less costly ways to advance technologies from, blackboard, to bench top, to bedside. Nibib supports 1000 grants and four major areas computation Artificial Intelligence, engineered biology, sensing an imaging and it vance therapeutics. One of our most innovative and practical something platforms has been developed to address the problem of food allergies. We all know that eating out can be an anxious and lifethreatening challenge for millions of americans. Recognizing this widespread problem, research have developed a rapid point of Care Technology. It is small enough to fit on a key chain and contest for common allergens such as gluten, milk or thats at your table in less than ten minutes. Small personal Center Technologies are also helping drivethrough developments of new imaging platforms to help address the challenging problem of Breast Cancer detection aimlessly in without xrays. Researchers are using invisible light pulses that are one billion of a section in duration to create ultrasound vibrations deep inside breast tissue. A sandwich are detected by centers on the skin surface, 3d images of breast issues structure and tissue are formed. And the ways that Imaging Technologies have eliminated the practice of exploratory surgery, new technologies are revolutionizing brain surgery to be done without scalpels. Hes a special ultrasound translucent place around the head that are control to target structures deep inside of the brain. Treatments are under development for Movement Disorders such as essential tremor as well as developing drugs to tumors without collateral damage. This is a brief snapshot of how spectacular advances by better medical technologies are changing our world. Its exciting to be part to be part of this Interdisciplinary Community of innovators. We are committed to working with our colleagues in every an aids 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 mechanisms. Im like us intolerance, and its really unbelievable going to a restaurant and trying to figure out what is in what. So we will speak. Doctor, thank you. Again, youre for testimony will be in the record. Youre recognized for three minutes. Madam chairwoman, Ranking Committee member coal, and distinguished members of the committee. 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 ive had a lot of interest and complimentary treatments like acupuncture and yoga that originated out of Traditional Medicine but our integrated into conventional health care. The most common reason that people turn to complementary medicine is chronic pain. And nccih develops its portfolio to pain treatment. This research is now part of the heel initiative, would stand for helping to end addiction long term. And aggressive trans Agency Effort to use science to 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 method and treatments. 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 would nichols another Dietary Supplements. Adverse events religious 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 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 and advancing the specialist treatment of organs specific diseases with increased pushes. And theres 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 lead to major chronic conditions, including cardiovascular diseases, diabetes, degenerative joint disease, chronic pain and depression that tend to occur together in the same people who have. Your 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 night sleep does wonders to stay motivated to eat better and exercise. Advancing richardson hole Prison 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. Im 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, colon members of the subcommittee, im 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 institute at the National Institutes of health. Every day, the public uses the nlm resources to translate research into new result to develop to inform clinical decision making, to devise new treatment 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 nearly a rare Childhood Cancer. Youve 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 nlms met line plus, which has information on thousands of diseases. They are short articles related to that treatment of the disease. There are no effective treatment approved for use, your physician might search the nlm Clinical Trials database to find a study, hundred 45,000 people use the Clinical Trials database every day it, contains information about more than 300,000 critical studies, ongoing and completed. We will find 100 studies that are actively recruiting participants across the United States. Physician and researchers are studying, 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 vortex articles, more than two and a half Million People every day do this. Researchers trying to discover treatment canada requests 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 calm reference to get Additional Information about the disease and its component. Not only can we maintain databases of jeans and journals, but also machine learning. One of our funded researchers at stanford has a 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. Itself 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 medicine, and i look forward to your questions. Thank you very much, doctor eliseo perezstable, i recognized over three minutes. Thank you and good morning. I would like to think chairman rosa delauro, Ranking Member coal, and esteemed members of the subcommittee. It is really an honor to be here today. My name is doctor eliseo perezstable, im the director of the National Institute on Minority Health and Health Disparities. I arrived at 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 he wages 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 note the lack of diversity among my peers. I came 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, learned, work and play, how people interact in our communities in health care. Information such as 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 and determining your health. As much as 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 background or not respond to the front medication treatments for asthma in the same way. They are jeans they protect and jeans that increase the risk for asthma among these populations, with environmental and geographic factors. Lastly, we know diverse groups are more effective and innovative and science and other fields. Nimhd programs create opportunity for 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 and the workforce. Through this agenda, i am optimistic that nimhd scientists will lead to discoveries that promote health. My patients, from all backgrounds trusted that i would recommend the best Clinical Care of ten 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 very much. 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 call, and distinguished members. I am christopher austin, a critical neurologist and a basic science genesis by training, and ive spent my career trying to bridge that gap which we now call translation inability pharmaceutical industries. And im now proud to be director of the National Center for advancing traditional scientists, or ncats. Ncats was established eight years are now to address as 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. Nihs its focus on the science of translation, understanding of which to overcome roadblocks to success and increase efficiency of the Transitional Research process for all. In short the mission is to paraphrase that damage 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 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 its developing standard gene therapy vehicles, or vectors for under structured 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 and 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 real applicators and 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 Health Researchers design studies to help children with cystic 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 me more optimistic than i have ever, been that we can indeed both understand french relational science and use that knowledge to increase the promise of science to patients it played. 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 nihs strong support of basic Research Idea proposals. Individual scientists at the nih and across the country, and many of the ideas and discovers came from the bottom up, and out from the top 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 and shortchange. A questioners, had to strike the balance in allocating resorts between investigator an initiative and targeted initiatives . So whoever would like to start, we dont 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, its 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 were quite responsive to state of the art and needs of the committee, working together with our colleagues we are able to create targeted opportunities that will respond to those needs. Theres a push and apple, its very dynamic, ongoing and fluid and and number of mechanism for accelerating targeted mechanisms as laws encouraging the individual investigator allegations. Go ahead. At the nlm, we release notices of areas entrances, we have vast databases and we know that some of the databases may have sparse, incomplete data sets, or maybe biased and someone. Weve 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. Its the data science and informatics committee, and beyond, the Clinical Care community. Doctor bruce tromberg, quickly. The bylaw materiality, which are developing radiology. When i arrived at nimhd, most of the portfolio was targets 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 Disparities scientists, none 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 depend on the kind of signs 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 18 part, doesnt 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 use happened in this ecosystem. To have an investigator tool which we do not have. I think thats 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. Its 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 its 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 translation arc that goes all the way to implementation and we perform and collaboration with investigators. We have investigator and initiatives to understand. Had a suddenly acupuncture works, so we do a secret it all the way down to animal models, so we rely on the this is a very important question and something we think about a lot at nih, any point you to the Strategic Plan, which we put together, what must be done every five years. Had rebalance investigator and violence, and as before, it its different for every institute and it should be. Congressman . Coal im going to direct questions to doctor collins, because i want to get these on the record. As a chair pointed out weve had four years up bipartisan sustained growth here, i know that plan is in the bill that you prepared. I want you to tell, 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 weight. As to tell, 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 dont hear that anymore, i hear a lot of excitement and energy. Over the last four, years to 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, he didnt really know how to study biology and a single cell, now we do and that is just completely transformed our understanding of biology, but also give us insights into treatments. In terms of a therapeutic approach, the revolution has been accelerated by crisper, and i dont know how many of you got to see the 60 minutes piece about six months ago, an individual at our clinical senator who its cured of Sickle Cell Disease because the opportunity to take jean there 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 dont know where you will go and youve 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 youre going to run a research lab around this country. We funded about 600 of those first time investigators in 2013. Weve had a very high mark and i towns all the institute to hit it. Refunded funded and 87. As of 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 cant thank you enough. You highlighted the importance of us continuing on the path that we have embarked on. Im a quick question with the time i have left i think you will want to answer and thats thats not kagame of highlighting the challenges you maintain the campus. Theres 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 followthrough lead and get the build on, because we need to focus on this. Ive lucky you to comment on the infrastructure. It is a very critical issue, as youve documented, were about 1. 3 billion dollars behind what we need to be enough to support the infrastructure of the nih campus, and thats to clinical center. They recommended an investment of 700 Million Dollars over a fiveyear period, just to catch up with all the deferred maintenance, which has led to all kinds of problems that we have experience in terms of the major leagues and so on. Weve 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. Weve had situations where leaks happen in the ceiling, and the operating room, in the middle of a procedure. Obviously, we cant 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 finance play static 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 Related to point of care technologies which may be used for more efficient diagnosis of some cancers. If you can explain some of those technologies, what advances and detection are on the horizon, i would be most appreciative. One of my this is to the hospital, talking about just this issue, and hes a former member of congress you to tell as 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. And general, does a revolution going on and micro and now 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 whats going, on liquid biopsies. We are also developing liquiding 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. Theres also sensors that can be implanted inside of you and follow whether or not you may have cancer and, like this patch. One thing that once they go inside of your, painlessly, and can be delivered to your home, you cant see tornadoes 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. Theres an explosive technologies, big emerging technologies as well are improving dramatically, and there will be a time when were 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 . How widespread are these technologies . We will dramatically respond to this that we support all around the country. We have five point of Care Technology Research Centers that our network and coordinated, so this is where that discovery invalidation is accord. Theyre 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 easing the validated, they actually get out and impact the most number of people. Weve been talking before about the transitional science spectrum, including returning observations from basic, clinical, and tangible interventions. I wonder pressure 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 add something . 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. Thats the seed corn that we translate. To get treatment and course to people, and we focused on how slow that processes. 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. Whats interesting about the process is that we dont understand it, we dont understand the fundamental science of that library. And thats what ncats its doing, we are from believers that like every other science, whether its 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 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 . Like you, madam chair and full committee chair. Its a pleasure to be here. We can all sit here and talk to you about a long time, i was sadness, i was flying back from the district, otherwise would have been here, but i noticed that there are different folks here, theres 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. Weve had some conversations about down syndromes research and making sure the funds follow the 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 enjoy 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 childrens diseases, or research on Childhood Cancer for example, tends to lag behind, obviously, the adult population. Even if its a higher incidence in a younger population. Im wondering how, and this might be a sense translational the piece, how we make sure our job has not been to be, this is going to do the research, were not scientists. You are. Weve given that responsibility to you, however, when we have constituents xfactor wasnt say, well, we dont 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. Its a great question ill ask out of to draw a least one other person and on this. Certainly we are completely at a cord 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 im not been able to point out that happily for many of them we found out extremely well and we currently spend 514 billion dollars a year on Childhood Cancer research and not just counts the part that you can say its 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 cells divide when they determine what cancer is. Theyre trying to add up all the things in a larger number and i understand the area of concern that feel like theyre still needs more to be done and in this committee for 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 genomics and matt 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 theyre working on the ip gee which is horrifying and tragic trump 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 short Life Expectancy we teamed up for 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 its been a trial and error process to figure out how to do those and they dont live long enough. So, we 5 pm cats which allows us to take ourselves 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 youre talking about with all these different devices you totally lit up and its almost like the Silicon Valley space of why not, lets do it lets 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, you think about is 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 its. 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 its a pretty good prototype so we wanted to look like this so well 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 dont have commerce in terms of those devices and that really has happened over and over again and we take a very hard look. Its great to get something to market quickly and to make reference to ecigarettes and so forth and here we go and in terms of difficulty and deaths. Rod 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 id like to ask. I have three and im 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 asserted into the report and 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. Theres looking to get a status on that as we havent received a report back. My second question has to do with doctor land him in. Ive 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 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 whats 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, its drunk. This was cannabis lotion. So i have witnessed at least my mother and other senior citizens, the Health Benefits of cannabis. I dont 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. 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. Id like to start with the first question. The situation of reversing 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 its under represented in the minority groups. We have empirical evidence that more additions of these groups whether its people that look like them or people who dont speak english and this is been consistently shown in three different studies over the last 30 years. Whether its a scientific workforce which also benefits, we dont know but weve had valentine and others who are working on it. The Financial 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. Id like to make sure that we get that report as soon as possible because this is a dire situation. I agree, its a very serious concern and as you can imagine its 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. Its now playing catch up with whats happening and we need to understand the potential beneficial of facts of some of these compounds from cannabis and particularly for pain. Theres 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 its 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 if they can legally do that or how can we help you catch up with where the states are. The issues and regulation are a broader matter. Theres a problem in that because marijuana is scheduled one to set up a Shirt Program that weve been talking about the need for some kind of alternative pathway which would have research on potential valuable uses a marijuana without going through such a rigmarole which is even doing the work. We have congress from coming up with a better strategy on that part. Id like to get work with you on that for an ex bill. Thank you very much, thank you for being here. Congressman harris. Thank you very much. Let me please know that we have a bill filed it does exactly that and bouncing around for a couple years and hopefully well research and to the potential benefits of medical marijuana easier and will further expand with a lot of false hopes. Youre absolutely right that there is interaction just last week and the literature was used for medical marijuana and they have less been after surgery and found out that they have more pain after joint surgery and clearly this is not a drug that acts only on its own and clearly is in other parts of the body which is the systems in which we dont fully understand. All ask a question on a very different topic and its a timely question because next month, the homes versus eoc a couple of blocks down the street which involve Sexual Orientation earn and gender identity. Its a latticed myth and two female runners in connecticut have filed for a complaint with the eoc about gender identity issues in sports and my daughter is in all American Division one athlete and ive talked to her about this issue and she cant understand how you can possibly have men competing its women in a women sport. Lets talk about medical research now because a lot of times before this Committee Said its very important and youre studying men and women and wish we studying men and studying women. Its a very simple question. If you have a transgender woman. Wed like who would like to participate in the study these are, they going to be assigned to the men or the women . I guess the first question is to you because sex is genetically determined and 99. 7 and thats what i looked about and school. Maybe im wrong but gender can be different but in fact when youre doing this research its the gender that supports where the difference is and how can we do that . In fact, if you say we just a sign that person is that discrimination against them and we dont know what the outcome of this case is, where they stand with the nih . Its a very important issue and we noted with interest and concern a few years ago its the institute of medicine in support of health of the lgbt that its clearly an indication that this is a circumstance associated with Bad Health Outcomes and particularly with those with depression and suicide. We took that very seriously and set that up at the sexual gender Minority Office to ensure that theyre paying attention with the surge needs might be and help them understand as an understanding. Can you define but a sexual line already is. I understand a gender minority looking to fight a sexual minority. So much are we here all about science is. What is a sexual minority . I think at the present time, without trying to be too precise about it, most people would say those who are not in a traditional heterosexual role would be considered a sexual minority. They would be lgbt and others in that category. As a scientist, you believe that sex is not by an airy and is not based on genetics . I believe that sex is assigned at birth and is very heavily and 99 or so influenced by genetics and lets not forget though that there are individuals that are born with ambiguous genitalia where sex is not obvious. Its 99 plus percent, didnt say how to present by said 99. This is serious because our colleagues in the range are going to have to rule i think on what some people feel is a scientific question and the definition of sex and we also ruled in definition of gender but the law which is what is under review uses the word sex s. It is a scientist i want to ask you. What is the definition of sex . As i said sex is 99 with virginia with the whether its expects or a chromosome constitution is. But lets billy clear, biologically is one thing but the personal identity could be a difference space and is a very complicated issue and im not saying anything in particular of novel or eliminating this conversation but one is to be inspected for those individuals at five themselves in the circumstance that are not comfortable with their genetics. How will nih will be nih put a transgender woman into a male or a female . I think that study was looking at transgender women. Doctor collins, if its looking at the studies on female collegiate runners. As a transgender woman going to be assigned to the female or the male branch and if theyre assigned to the female branch, isnt there a risk that makes the study less valuable two female runners . I dont have an easy answer to your question. I think they would ask for sex assigned at birth. Thank you very much. Congresswoman let me just say thank you for an informative and very hopeful tour last week. I just want to say that i also share my concerns about infrastructure and how we talked about and i look with you at that. And as you mentioned, the research has not always been inclusive to certain population groups like racial minorities and are in treatment and health care that did not go with the same effectiveness of everyone. All of us are Research Initiative which has the potential to radically change what we know about Minority Health and how we approach the elimination of the health experience. What was the nih role of all of Us Initiative and how are we currently working to recruit the diverse and i inclusive population in this Research Program . Thank you congresswoman for that question. Iowa arrived at nih we were all being conceived. The medicine initiatives got here four years ago. I have been supportive and enthusiastic supporter of the study that in fact have been one of the directors that worked with eric on his Kitchen Cabinet so we are very interested about it. The fact that it will be tremendously Rich Research resources for future investigators. It already is the largest study of latino participants in american participants even though its not yet fully developed for 200,000 fully enrolled. So we are very supportive of it. I would add that the inclusion of diverse participation in the study is improved a lot at about 30 now. One of the problem areas in the studies is systematically addressing that. It seems to me that there are multiple opportunities for nimhd with other institutes to help find a better focus on health equity. To ensure appropriate minority in the Clinical Trials. What you need before the oil has nimhd had in the ten years census acclimated to this institute . Can you give us some examples of Research Studies that are being done by the nimhd way . Thank you again. Our involvement with other institutes is full. Ive met with all of them we, have common areas with every single focus in the center and on the campus. For last four years weve been working on redefining the categories with these Health Disparities and how they apply off going through a detailed way with nih scientists as well and have a Strategic Plan where all of nih that we have led through Health Disparities is almost completed and its just to go through the final clearance price so i have presented the institute of directors and have worked with them. We participate in several important and i age why the programs and in this in the house study and the National Health and long institute. Its about drug abuse and the abc the and he for study that will agree to support that and part of the center for aids research. Its funded through the National Institute on allergy and infectious diseases. We have put out a call for our own Research Community and we ask others to say if theyre interested. We have a terrific participation for a timely post Hurricane Maria research and puerto rico that had to be from puerto rico and six different institutes that agreed to set aside money if they got applications that are in that area and with Mental Health and drug abuse and institute on aging that they funded what the nine or ten that we find ourselves. For one final questions. There have been some challenges with the nimhd Research Program and i wont elaborate on what those are but has that been reinvigorated in the program contributed to this institute . So, briefly the program its money that the nih provides to an institution to be thought in the 25 presentable of average endowment for the institutions. They have to bank for at least 20 years after the end of the grant. So the amount varies and right now that 2 million per year and they can get it for ten years or you can do the math for 20 Million Dollars. They used the interest to develop programs that promote their Research Capacity in Minority Health disparities. Most of the institutions are working on and other infrastructure that relate to research and not administrative work we. Weve gone through an Advisory Council with review and there are no restrictions with applications with the budgetary was full but in fiscal 2020 we will have another funding opportunity announcement and there will be no issues with that. It is been linked to having a center of excellence either from nimhd we. Believe thats a limitation that will limit the number much more than anything else that we have. Thank you. Mister John Moolenar gantz. Doctor collins, welcome back and great to see everybody here today and thanks for participating. Theres a couple of questions i want to ask you about. I know in may, there was a symposium that nih participated with the usda and collaboration with Research Opportunities that may lead to transitional benefits and other fields looking at Animal Research and how specifically on farm animals of curious to where you see that going and what benefits might come out of that. Thats one area want to talk about and the other area i want to ask you to address is the anti resistance and what our strategy is for commanding superbugs if you will. Those are both Great Questions and ill start seeing that they should signal me. Basically youre quite right and its a great opportunity for looking at Health Issues by comparing what happens between animals and people. So we are all rather similar when you start looking closely and various metabolic classes and we at many nih have tried at many decades to build on that in instances where we want to understand and the model that appears and he farm animal and use something from that from the actual mechanism thats by squabble to three. In some instance right now there is great concern about the eastern several lightest which is a particularly bad outbreak and in young people in middle age people and thats a disease more that we can understand that is a vaccine and horses and you can go figure its an interesting story. I totally agree and the usc has been a wonderful partner and have been great interest in aloft a lot of their doctors and Service Activities that require that this applies not just to the farm animals but to abdominals related to the very first affective gene therapy for the eye disease. They can general apparatus. It was a top model that was spontaneous for a dog and some of you might admit that are ten years ago because it took quite a tour through the capital having their b work and it worked in the kids. We get it as far as our interactions. With the resistance that continues to be a deepening troubling problem because way in which so many incidents are happening with the organisms that are all on antibiotics and the outbreaks in hospitals and ive done a lot to try to be sure that we track those down quickly in hospitals by providing the diagnostics necessary to understand the transition. Basically there are two problems here. One is the use of antibiotics that are caused and these resistant organisms and the other is market failure thats the development of new antibiotics that is not been appealing in the private sector. This is been in part supported by this congress and providing the sources. To try to make sure that were doing everything we can to develop at next generation i take it further down the pathway towards an actual drug that we normally would have to try to do risk these projects so that the industry partner will the side its worth taking it up and even they know its not going to have a lot of profits there. I think its making progress but we are still well behind where youd want to be to say this is the problem weve solved. If i may, you may be surprised that theyre playing a role in some of this integration of anti microbial approaches. One of our researchers is a biologist to use these methods to understand how these terms actually change over time to determine if theres a point that may have happened earlier in the cycle, thank you. I want to add one thing about the animals. We have a collaboration on 12 of the veterinary schools and with the same number of sales that are working on diseases between humans and animals to see if we can learn and studying those together. A matter of fact, next weeks or thursday at the sea essay meeting that were having a speaker from the usda to talk to the entire groups and how we can expand this approach youre in a. Can i also add that the point of platform technologies have traditionally moved from humans into animal care as well and its a great opportunity for further growth from the diagnostics and the infections are doing that rapidly by owners and wherever they need to do this as well as intervention vaccine that i was just showing. Thank you. Its not likely to my colleague, the issue of animals we need to take a hard look at recent rule that was approved and by the usda the in dealing with a stunning lessening the inspection force in our flin flon swine slaughter and also lives with line of speed and here is its taken off the cap so right now the inspector has about four seconds to look at any animal that is going by and if you put a cap on the speed its going to be very little ability to deal with that and the second part of that is that with the fta and the regulation of the use of antibiotics and livestock its a serious issue and i was thoughtful about this and to take a look at it because in fact we are allowing and dont allow it for growth in motion anymore had antibiotics me we need to have a better in erie provide a prescription but we have a gaping loophole that says that it is we can use we can use antibiotics for prevention and that has opened up unbelievably because of the way we are dealing today with the hurt of 5000 swine that used to be 150 120 and are prone to illness, disease and take care of that and we are also use using antibiotics prevention and that means that you can buy a pork chops, let it move and you get ill and you are and then not able to treat you or treat you flip this resistance. Because its the same thing. Longer that i wanted to go you, will need to check with whats going on with the department of agriculture and with the fda on what is a very serious issue. Sorry guys and we we did something about it and we said we couldnt use limitation and put a limitation on doing this at the senate so well see where we go thank. Eulogy thank you madam chair thank you for being here. Sorry mr. Testimony, we had two meetings backtoback but i was very happy to hear that running for the first time investigating researchers are up considerably and im very happy for the people back home. Back in march, dr. Collins i asked a question about the study or an update on the National Sciences that had a report from 2011 in 2016 every drug approved by the fta and the nih and i age support then let you ask my question again that would really love to have an update on that. Is there an update on that study . Thats a very important study and published in the proceedings of the Natural Sciences and the author was fred allegedly and at all the 210 drugs are approved by fta between 2010 in 2016. That concluded at 100 of them at a influence from the research to conduct a point of having the fta approved. It was not funded by us and financial Biomedical Research which is a private foundation and i suspect that they might be interested in renewing the effort and see that its almost better if it was not funded by us and i suspect that the answer would be very much the same. In the way in which our ecosystem are and i age funded Research Gets handed off to the industry for them and turns into the in the product thats the envy of the world and it probably hasnt changed but i will reach out to that foundation really. Id appreciate the nudging especially now we talk about back home hour talking about congress and very valid rules. Another question in use nih of Human Fetal Tissue Research that changes the Advisory Board and said something about no fewer than one third shall be scientists and biomedical or Behavioural Research. I have researchers in madison who conduct this research and would like some clarity on the guidelines of the selection process. Specifically, whether be an effort to appoint scientists to the board and substantial experience or accomplishments and research involving fetal tissue . Youre quite right that the new guidelines require the establishment of this ethics in vice reboard and this constitution is basically laid out from 1993. So this is not a new formula and it does say between one third and not quite one half of the members it should be within that particularly specified disciplinary expertise. The appointments are to be made by the secretary of services and the secretary is the moment or i think our ideas are being put forward by what would be inappropriate roster for that and for nih were really interested in seeing where this goes and the additional applications for the fetal tissue research. I cant go through this level of review as going to take some time where will meet over the next several months and will have be improving such applications moving forward and the constitute in such a way that we can review these and thats what we expect will happen. Any idea on the timeline . I couldnt get out at the moment. He finally asked, the question on autism specifically. I know autism relates to people who are transitioning from youth to adults ages. Theres a report i know that came out from the Autism Committee that said 2 or actually less than 2 of the combined Autism Research funds are going to that specific population who are changes in into adulthood. Is there are opportunities for additional investment and research regarding adult with autism and any additional investment in understanding the issues regarding the lifespan of people with autism . Certainly very appropriate question. I think most people when they hear the word autism they are not necessarily thinking about the individuals who are entering adulthood. Many of whom actually would tell you that they dont really appreciate be considered in the same boat as a child with autism which as a lot of interventions and are highly functioning individuals. We are certainly looking at that with the nih National Student of Mental Health portfolio and autism and through the history and asi e about the priorities about what comes up and josh gordon who is the head of that with dr. Brendan . Initially mr. Mark pocan idolatries really say we are working into areas with this. Once we have the researcher at the university of cincinnati in a Childrens Hospital who is creating the proper medical record for children aging out of supervised and will i scare. I know it doesnt specifically address the issue of autism but were learning for that is how a young adult and emerging adult moves into such management with Health Information. The second is that were working with using Innovative Technology to create adulthood in some of the tools that may be necessary that are less stigmatizing in the illness part of autism. In having social cues and the balance to help your person who tried to function in their adult life. And the hues that they need to be able to work with. Thank you very much. Congresswoman thank you for being lois frankel here. Thank you for being here and i enjoyed my visit today. I want to follow up first with a doctor trump or he. Sometimes you hear something for the first time and on the imagery is there anything new on the mammograms that are going to lead to women not having those regular mammograms all the time . The next thing he yes, thank you for your question and that is a very active research in our community and in terms of mammography theyre improving that itself and new complications that will help us read mammograms better and there are other technologies withs digital breast to synthesis that has the view of a better appreciation in there and there is alternatives which is using lasers and that can create sound waves so that you dont have with those and so forth and theres enormous activity and using Artificial Intelligence we can actually do mris faster and more and extensively so you can reap the benefits of the mri and possibly do it with smaller and more compact devices. This is a very active engagement in this technology built and definitely one of our target points. Where are you in terms of something being out there to the public . So you dont have the compression monograms. . All of these technologies that i mentioned are in various streams of both clinical studies and entirely studies that are amazing advances we were going to have to build some hes technologies, we can model them and do syndicated trickle trials and they recently published a peace were due to that exact thing where digital mammograms and did you will see into this and say which one is going to work better. Well have these Clinical Trials and the mri studies are ongoing in terms of all around the country. And photo acoustic and ultrafast laser. That technology is being developed and commercialized. A lot of really interesting alternatives and they can potentially provide information at all stages of care. Those mris are going to those claustrophobic tubes . Suggest there are a number of really great advances in both Magnet Technology where you can manage more portable reconstruction and also if you notice there is that big tube but we also have a coil the picks up the signals after radio frequency is launched and you have coils that pick up the signals from inside and those coils are being made for individuals now and those hand coils things that are in the movements. And those body girls will have mris even more compatible with each of these applications. I dont know if he said you have to go to the tube or not . Will i think if youre going to have mri organ off some kind of tube. When one of the big advances though in the mri is stupid it a little bit is a small cap that you can wear on your head and that you could still move arounds so as those technologies developed they can be translated to other applications or fashion or imaging and launched about many many times. These technologies are developed and can move into other areas. What about protecting Ovarian Cancer gone with violent and thats overtime on liquid biopsies really exciting really exciting advances of being able to detect things neurosurgery using apology sticky if you think that technology is a take medical research and microscopes and you take you most powerful microscope and he turned it into a small hand held inter scope. You have the same or even more specific information and you could stick it inside the body and you can help glide Cancer Research and we know that surgery is still the best part of cancer. We can get lots of sells out very quickly. But what if you could identify every one of those cells by looking at the same michael structure of a cell that a biologist uses where you take the tissue out and you throw away and examine is examine it for weeks. What if you get that information inter operatively that so that is the one advance. Adam schiff, i have one more question which is, have you had any directives from the Trump Administration to discontinue or change research on Reproductive Health . Youre all looking at each other like no. I dont want to give anyone any ideas. Of course there is as weve talked about a minute ago a limitation on doing research. If you want to include that it that will be the answer to your question. Thank you. I yield back. Congresswoman Bonnie Watson coleman. Being i apologize for not being able to hear your testimony i was in another hearing. From what i heard and the answers to the questions. I want to ask a question about the disparity in health for the mortality with tax and whats happening in researching the particular issue. And you and what resources are applied. Its a critical question and firsts majority in the least establishing the collaboration wars and the senators about this topic and the child health is very much there any Health Across and we have to think of our continuum and its the worst outcome of maternal for amenity and as a woman goes through the process of conceiving of the delivery and when you look at the disparity and the American Indian women is proportionately higher burton and maternal morbidity and have to look at the continuum of at conception and doing care and visiting hospital to take care of the delivery and very importantly for the most part what happens is that each of these places or will be intervening some of the African American of diabetes american women responsible in risk in developing fibrosis we. Thats what im getting at why a lot of how we reach losing all of that is a genetic is a behavior illness with and the access to the quality of care we. Are we doing research on the disparities on what we can do about it and we stated the problem when i agree with with research hes what are we doing Research Studies are in the space office my short and fun. Its come very much to my attention and that examines this level of continuity muellers win related to the Mothers Health that here he was and they care that she was getting and the setting that he was going to in the amount of resources that have been identified for looking at these issues . I. Could i get that . Youre not sure whether its one im not sure whether its one of the things that were tracking or it would be automatically keeping track but i will tell you, this is an issue which is of particularly drawing the attention of nih focus on much greater attention considering that theyre all going in the wrong direction and he is now a group of High Level Research leader with institute mid Institute Many others were not doing what we should be and identify the factors and the possible interventions with the research. Thank you. Its the first time investigators you did 1287 of them . Last year . Thats exactly right. Yes year as of this morning were also a 1287 and were looking to breakthrough that soon. Could you break down for us racial and ethnic breakdown because of the investigators what the opportunities for us and you may not have them now. I will tell you that they are as nice as you wish they were and were working intensively with the entire set of programs to increase their windfall. Through your chair if, thats possible i would not only like to know of the representation of the efforts being used. I have one last question and a number of them which is set to ask. I was told by doctor that at the age of 75, you no longer get a colonoscopy. Why is that . The United States service task force you sdf which looks at all the evidence for the preventive actions that justified in terms of benefits and risks theyve looked at all the studies i have been reevaluated to assess what is the benefit of the colonoscopy. Their conclusion is by the time one is 75, if at that point you have not had any identified cohen oscar be vitality is you not likely to have them in the future. Its out of this zone and made it clear. No one thinking that youre 75 so not worth it. That was not the reason for their conclusion. Can i asked the question before about autism with the minorities with circuit doses and i just want to ask you for an update on those and with that i yield back in. If we can get those updates would be happy things in response to congresswoman coleman. Doctor here Helene Langevin, let me of dress a few things here each. You talk about the facts nccih and the Natural Products and supplements. These products today are unregulated. So, a consumer has to seek out information on safety and the effectiveness of their own. This is a particular interest to me heres and ill say here so its in the record. I believe that we ought to regulate Dietary Supplements. Some of the claims are outrageous but with how do you disseminate with your Research Findings and the general public and how do you work with the fta and other federal agencies to disseminate the Research Findings and what is the outcome. I have we used your research on both positive or negative way to say that it should stay or go . Thank you. These are all very important questions. And terms its highly important and we dont want people to be getting the information friendly from the internet. The age is very active for maintaining the information list on their website called herbalist. Its an app that you can used on your phone and if you want to look up specific type of original supplement or a natural product you could just go and look it up and you get the information right there. Thats constantly updated. The other thing you mentioned is finding out are these products affective and if they actually worked. Are they safe. They conducted a number of Clinical Trials earlier on when it was still called and cam about issues like eco and things like that. People were taking and looking to find out what actually worked. Most of these trials ended up showing no significant benefit and what we think though is not a matter should we abandon this research. What we need to do is actually go back to the lab and take these plants or whatever they are and really go into their basic ingredients and you look at the chemistry and see if we can find out in vitro and find out, are there actually having a facts of the anti inflammatory and the really important piece. You find the effects in vitro and it actually works you in Clinical Trial and you cant just go in me that would make any sense. I would love to have fun with this but this area of Dietary Supplements has been left and is pleased to read your testimony and what you are doing. But there needs to be serious collaboration with but can go back and look at the properties and see if its relevant to other areas but there has to be some defining answer to what is on the shelf with people who are just picking up and using without any way of whether or not this is going to address whatever their need is in this regard. Theres supplements with each nih that is close with nccih and one of their goals is to make sure all the information you have is available in labels and 80,000 labels are all Dietary Supplements that contain the information and unfortunately all of it is pretty incomplete because a lot of it is based upon any rigorous experiments. There is a federal tax force last year that pointed out the lack of data and the abuse of the safety and i did see fta earlier this year signaling that they thought it might be time to report these Dietary Supplements and it might actually be getting some traction. I hope so what will proceed to make sure that it does. Let me Ranking Member coal is not going to be able to get back thought im going to ask a couple more questions and then well give you time for your questions. With regard to the Pain Research that you are doing. We are spending which we should have enormous amounts of resources to deal with the issue of oil lights. Your work is critical here and one of the things that i very much wanted to do was to look across country and honestly, today its a grant thats going to deal with boys and get money to be able to do it because its really a crying need. But with the kind of research that you are doing it, needs to be overlaid in my view and not where we are directly in our funding. I dont know how far along we are to provide us with some real sound advice about directing dollars to what is appropriate and what will work rather than just say we gotta do something and heres the money for all of it. That seems to me that we should not be throwing good money after that. I dont know if its working or not working. But you have a really big piece of the puzzle here to help us. I would agree and as i mentioned before, we are conducting a large effort right now we call pragmatic trials. Basically we take their piece that have been shown to be effective in a controlled setting or in a randomized trial compared to a pursue bow and if we put that into the military and theyre having a big ever right now in collaboration with the department of defense and the administration to test behavioural interventions and Service Members and veterans to seek and implemented in this Health Care System and does it help with pain. That is an area where its very pragmatic and we want to note the way these therapies are being delivered in the Health Care Study and do they actually work. The other end of the spectrum is to invest in a lot of efforts in our Intramural Program in basic pain mechanism to see what are the effects of emotions and we know that the stimulus is are in the mood they are in and need to understand that better and some therapies are actually interacting with that and opioids for example will have an effect on the brain and is very different depending on the person that is depressed or not. It is very interesting and we need to understand that better and under pets and the Pain Research better. This is such an important issue and all of the institutes have been asked to come up with the creative possible ideas where we can approach this epidemic of the need for non addictive treatments for the people who suffer every day. We broke this down at the six different themes and to pulitzer right there including meringue about people who are addicted to opioids. Because their mothers of at that issue. That doesnt look like an impressive diagram but underneath that are 40 different the funding opportunity announcements you and in the last year and a half thanks to you because the provision to 5 Million Dollars a year in this particular initiative as the addiction long term. We have an outpouring and unfortunately, what you said is not everyone who had that funded and people are still mad at me because the success rate was 20 just like unusual and its everything from basic size to understanding how pain works and to the Healing Committee studies and to try to see what happens if you bring all of these stakeholders in the opioid announcement none ounce mint about this later this week and its a timely questioned. And i want to assure you that its an all hands on deck and with. Congressman lucille roybalallard my first question. Thank you for coming my first question for the initiation around the inner since they didnt allow the and i and are i want to raise an issue that you are aware of and im very pleased that someone so experienced it has been put in the position of acting director to lead the and i and our shoe and i think that there is a lot of concern regarding the fact that years there is not a nurse in that position and what im hoping is that you will quickly find a prepared nurse to lead that institute and i just want to make that point. Dr. Brendan was talking about the workforce of the Behavioural Research and increasing the cultural and diversity is one of the strategic goals ushering in assuring the discoveries that lead to health care and the Patient Health care spurs. As the first nurse director of the largest by the medical library, what efforts are you leading with the hell am and to have the educated workforce and how are you ensuring that this workforce will include physicians of the scientists but also clinical practitioners autumn pharmacists and nurses and physical therapists and psychologist with . Thank you for the opportunity to address that and im with the district of and i and our and my cochair with this with our be off and running and to address the workforce issues weve talked about it at home first so its the internal Training Program for the women and men who worked for the medicine to do individual assessments and big data skills across the board for my variance to scientists to computer scientists and who work with us and were helping to lead across the development of workforce competencies that address not only scientists but those that require new scientific information and that they have the ability to read and understand to learn from data science driven resources and finally, for funding an initiative about directing hes directing patients to understand the then this discovery. We recognize that the evidence for practice is going to require if differently about things shes artificial and that use intelligence of critical images and recommendations about how we might expect the care process to occur and bringing these along to understand how to interpret this information. Were looking at model curriculum and the science workforce and Academic Health Science Centers that will cross the curriculum in positions in nurses that will have access to this discovery. Finally, we have to recognize that we have not only the pc workforce but we need Community College training and individuals who are able to assist the preparation data and developing the security to make sure that we can actually safely learn from data requiring. Dr. Austin. Really my priorities and congress has been screening. Since the first passes in 2008, they bipartisan screening saves lives act i supported federal programs that expand state and screening programs and ensures Laboratory Quality and supports the secretaries Advisory Committee on disorders and newborns and children. The law also authorizes seems to have newport screenings in Research Program. To identify conditions of the newport screening and innovative treatment. I understand that and cast was created any nih initiative which included three disease Research Programs. Your mission of accelerating new Treatment Development is a priority. That is shared by children born with the types of Rare Diseases that the screening can detect. Given that ncats the Research Program have similar missions. Im interested in knowing how ncats can Work Together to investigate new treatments of Rare Diseases that could be detected at birth and therapeutics are you currently investigating with diseases that could be become eligible and recommendeds uniform screening manner . Whilst what a great question. Really wed ill try to be brief but that will be difficult because the question that you have. The opportunity is absolutely huge. The way to think about this is moving and i think i mentioned before that the idea of studying one disease at a time and studying as many disease at a time and perhaps all 7000 at a time. Newborn screening has novel technologies which will allow us to make that transition. What im talking about here is gee no see could see. About 80 are at work and most of them can beat detected use if we use more widespread before the children leave the hospital. Were already doing this with some workers supporting the Childrens Hospital doing it in the queue with the sick infants and the larger application would be to short circuit what is called the diagnostic odyssey that is a terrible wandering in the wilderness that parents do with a rare disease and where they will go through five to, ten, 15, 20 years of going from provider to provider until one provider up what one of those in medical schools and they are so rare and have to go to multiple providers and most of these could define and identify at birth with newborn screening its an why are we doing this . This is not a technical problem once and for provided by us and the Genome Institute the plying these technologies and the genome sequencing that little as 24 hours from the time the consultation and when the data get back to these issues and using ai ones which for the implementation signings for the proof of principle mission at this and how do you introduce at the whole community. This is a problem that includes the research but the important lesson here is that the only reason that the odyssey exists is that this oh decease leaves home in the first place and has to take ten years to get back. If we see this before they left we would never have that odyssey and in that ten years the quantity of life is defining and declining by the time that theyre finally diagnosed they are building the rich or died and this is something i when i was in training 35 years ago we knew this happened but this is utterly changed in the last five years. We feel a real urgency to things with a rare disease within a year and many of those can be diagnosed of the screenings but systems exist to identify that this is a systems importation science program. I may have missed it but it is a main collaborations fifth. We are joined at the hip with them and we at a person who used to be yours nimhd and doing this at an international level. This is an International Program and a chair called the International Disease consortium and we developed three new strategic goals for the next ten years of which is to decrease the diagnostic odyssey as well as develop 1000 of new therapies and we think that is through these therapies where you have a diagnosis. These diagnoses are grouped diseases that are the therapeutic part just that will say if the drug and the commonality with that we just pure 20 diseases at once that will be applicable to those diseases and so they diagnostics and therapeutic aspects have some information aspects as well in rebuilding databases which are making them a friendly. Thank you. I think we need to address some of those challenges. Im going to submit a couple of questions on the record. Do you find that i want to end up with the question for doctor brainer. The clinical triers thought of and just on the question that they asked and congresswoman talked about. How could we bring more into the critical studies. Could you do that through your efforts. How do we prove the Clinical Trials talk of to bring more people including the underrepresented groups. Thank you for the opportunity to talk about that. Clinical trials dock of as two key demonstrate stewardship and the other is to let the public know that trials are available. We have worked with the support of leadership to launch an improvement out of the interface so that its easier for them to find studies. We developed the research string of someone that might be misspelt and precisely done the way where we can actually find it. In addition to this, for working with Community Groups and its case the community might be Breast Cancer daughter work to be able to extract from a trial study registry and the entire suite that they are working in and expose those studies through the lens of the specialty organization. Maam im going to follow up with staff this is a provoke youll issues future and their journal but they will follow up with you on that. Thank you. We havent talked about that. I want each of you briefly to i know its about resources but if resources were available, what is the Innovative Research that people would like to pursue. You just mentioned the piece of this which is really quite extraordinary in the direction but let me just ask you if you know. Where would you like to go or pursue . Does that mean i should start . laughs this is not anybody who wants to go first can go first. You go first. laughs one of the areas that im really excited a passionate about its the idea that medicine as its practiced takes snapshots and a little bit of blood chemistry here or two after that. The image here and another year two or five after that. Blood pressure and even that is not measured and its difficult to measure at home. Some of you may know, every time you breathe in and out your Blood Pressure changes and causes dynamics. That dynamics could be the most important thing about managing your blood pleasure. New go to the Doctors Office and its elevated in the give you medication and then you come back and they say that is all working and have to go home and you come back later. Theres this optimization of current medicine as practiced and enlarge intervals. Big challenge for our community is to come up with a more active continuous implement of research that is measuring many complex things. We know biology is not simple. We also know its quite dynamic. If we can capture the dynamics, every time you eat your chemistry goes kate crazy. If we can measure all those things and figure out how to prepare manage diabetes and disease and prevent this. What if we could where this continuous patch that is an ultrasound device that measures blood pleasure on a continual basis. What happens when you go to a hearing and we could follow that and how well its regulated by the application. I think thats the big challenge for us and it could extend so it would prevent disease and give people the power to enthrall what they can do an impasse their future. Thats our big challenge. Thats very interesting. A personal example and my husbands doctor told him that measured is broad pleasure and i said what are you doing. I dont use it etc and its become a non functional piece of equipment. As he tried it with his arm up and down . Thats really very interesting. I was going to go serious about the allergy issue. It really is quite extraordinary in terms of the quality of life and a very serious about having to make everything that you are and know what you are eating and what effect that will have. Thank you. Where would you go . You are big idea right now is very much on the same mindset a talking about the health span. Were very interested in health and the certain dynamics. We often think about looking to prevent disease but one thing we dont think about that much is how do you restore health. How do you get people back if theyve been sick. If you have a chronic condition that has relapses, how do you return how do you recover so theres all these wonderful words about recovery and resilience and resolution and repair and regeneration. These are all mechanisms that we understand are starting to understand and animal models and basic biochemistry. How do we translate that and how does that relate to whats going on psychologically and talk about the psychological reasons. We see how the two are related and were in that space and especially to utilize and muse interventions indigenous builtin mechanisms and we can just promote them nationally. They are behind the scenes and making information more useful and the Artificial Intelligence weve seen these strategies and have potential to take many different kinds of data types from the data to images and the pictures of food and apply so we can work rapidly and interpret what is occurring and me more transparent and recommendations about what will actually cause this storm that is being predicted. Our work is advancing the analytics to our society. Thank you. All mentioned two areas and why some disadvantaged communities is better than predicted. One of the projected factors and i think one of our methods would be these data tools that will link individual members from the study and these structures that exist. I have to mentioned a second one which is related to the American Indian population in the u. S. Were looking for a special way to strengthen biodiversity and the Research Capacity and the tribal lands from the american institution. How much interaction do you have with the how service . Tomorrow a meeting with the director of that specific program. Ive Tribal Research office with the wilson director of that and just last friday i was at toonie private low in new mexico. I was in both of those communities and they are some very Serious Problems that we havent focused our time on. Before you asked a question doctor, i want to ask you. How do you avoid duplicating your work with pharmaceutical companies . To theres two ways to answer that question. One is the project that we work on our the 95 of diseases targets that return on investments because the targets are too risky or not well understood enough and our disease prevalence is too low. Actually the area if you will of these kinds of diseases that we work on is relatively small. And we work there before i came and we work on the science of Drug Developers which includes the development of regulatory science and he transitional science. That is a more fundamental basic science of how that process works. That is not work done at all by pharma and because they kept news resources to answer fundamental science questions. We work with them closely on the problems that they work into to kill project effectively and the problems are a run into the same as we work with the fda and answer those questions they make about a third of our Advisory Board in terms of acceleration. So we do a lot of collaborations. I want to get to a point and this is the last question. I want to get to a point where we have the recognition of the amount of taxpayer Dollars Research that is being done that is then picked up by the pharmaceutical theyre very well aware of it. They are aware of it but the cost of the treatment is prohibited to the recovery and the treatment of the individual and where the basic research is being done at your institute at the end i h and etc. They figure into where we go in terms of the ability what you do. It is better if people could take advantage of that. Where would you like to go. Ill leave you with one very provocative term which is quite serious about. Which is just in time gina therapy. Wouldnt it be great if one could go from a diagnosis of a kind of gene therapy which is customized to deliver the mutation in a very short period of time. We are at the point believe it or not where some kinds of gene therapy and particular jim derby with the same sort of technology which is a there before bio jen. The idea that they use a molecular bandaid and a mutated gene seems to express itself. There are thousands of diseases were there characterize by this fundamental genetic region and its working with some researchers at the Children Hospital technical problem there is the toxicology manufacturing principles that are approved or are patients that make all those issues publicly available and that recipe is right there to retrieve this position in person and go to that recipe and pick that information and potentially treat the child very quickly. The other thing is that just keeps me up at night are the new uses which are already out. We have put a lot of this in the areas since was ncats formed. The fundamental idea is that the purchase of the project will discover that theyre not actually individual diseases and are part of the jeans that function and theyre all the same jeans. They just reproduce and reuse in a different way. So as a result, many of the drugs that are used to target many others. We havent done a very good job of exploiting that because we have one drug and one disease so one example that you may have heard of because the discovery was this kind of mean example. Where can you beat has been around since the fifties. Not used with a patient. Some investigators and carlos serenity discovered that this was useful for depression. The problem is that its hallucinatory and you can only give it iv so its not a very practical treatment. So working with nih the institute on aging and we have mentioned that if it isnt actually kind of mean is there an active moderate fuel that is doing the anti president and wouldnt be addictive wed be soliciting all that stuff. We have this fancy chemistry and figure out what that molecule is. The way it takes care to mean and are available and are working again with our colleague and working with the Pro Development process to get to people and whats so exciting is its a completely different mechanism of action and its illuminated novel and concepts of Mental Health and potentially will give us depression but theres evidence of anxiety and sense of compulsive disorder and ptsd. There will be doing trial on all of those starting next year. Doctor collins, what you just wrap up from your point of view . I want to say yes you do. What hasnt been brought up is the brain. We had a chance in this conversation to highlight the remarkable journey of trying to figure out the developing new technology and theres a lot thats pretty exciting. 86 billion between your ears and how to use that to understand how to prevent and treat schizophrenia and autism and depression on down that long list. Were five years into the interval that supported the releasing and the near future of the new plan in the next five years which is knocking your socks off and terms of the capabilities a beginning to take apart and they actually do what they do and the history goes back in this era and to probably work to a lot of things and point to this. Its a New Territory and have began to understand whats the in the structure in the human brain. Its extraordinary. That just broadly split in terms of the information and thats why i was so anxious and very special to hear about the director to find out what they are doing so that we can be responsible me in the role that we play and in fostering what you do. The testimony and its. And we have the ability to carry out he. I will ask you to. Pursue yes you do the science and none of us here. We are not and we have got to take our lead from you and we cannot pick and choose where we think our dollars should go in the faced and test and new and following the science. In the money and the resources that will help you to follow that science in the discovery. In an area that i ask you as well that you talk about gene therapy and that we cannot allow peoples personal image or belief to direct the scientific discovery of those dollars go and you are the hallmark against that. And its oftentimes uncomfortable to enter that area and the early ability and such standing domestically and internationally to guide us through this with the safeguards that you understand of what youre safeguards need to be and what the ethics need to be. That we cannot at the federal level of shutting down Biomedical Research. Of what came here. We will again cooperate with your testimony at this point in the work that you do and can only hope that it will lead to doing your job better and thank you for being here. Its ended. Thank you