Transcripts For CSPAN3 Cancer Scientists Call For Increased Research Funding 20170404

Clinical trials for mine sxorts how cuts to the program could impact future research. This is two and a half hour. The committee on oversight and government reform will come to order. Without objection, the chair is authorized to declare a witness at any time. We have a very important hearing this morning, a faerldly funded Cancer Research coordination and innovation. This one, some hearings are more important than others. I wish it were the type of hearing that was on the headline and the top of the fold of every newspaper that we have. But it is cancer is something that is statistically going to touch every family in some way, shape or form. Unfortunately, ive had that personal experience myself. I lost my mom, Breast Cancer. She fought it for some ten plus years, passed away in 1995. My dad, who was old school. My dad was the kind of guy who never thought he had to have a checkup. He would be just fine. He felt fine. He didnt need a checkup. Unfortunately, he got colon cancer. And doctors at least told me that if he had any sort of checkup in the eight or ten years preceding that, he would probably still be with us today. He passed away a few years ago. And i miss him. I miss them both. And having to go through that is not something you wish upon anybody. In my own life, a lot of blessings came with that. It allowed me to get closer to my parents. Without getting too personal about that, i think the importance and the discussion that were going to have, it is amazing to me. Cancer will take the life of roughly 1,500 people a day. 1,500 people a day. So believe me, ill a strong add cat for the United States military. I champion for money for the United States military. I want the men and women to have the most resources and protect ask defend this nation. But lets put in it perspective, that 1,500 people a day are going to die from cancer. And so if you look at the trillions of dollars that our government will spend, fighting cancer is a much higher priority, it is for me and i think a lot of people. I hated the president s budget. I got a lot of respect for nick mull eventy and President Trump himself. But i thought his brougt posal on this category was pathetic and inadequate. We should be spending billions of dollars to solve this. So the heart of what we want to hear is, how much does the money make the difference . What could we do if we did have more resources . And with the resources we are throwing at i, a handle, billions, i dont want to treat it lightly. But come paired to the 4 trillion this year, we will spend it. That doesnt make sense. We want to hear not only what could happen if there was more money. What is whapg the funding going on. And what are some of the exciting developments . Every once in a while there will be a story in the news or the newspaper and everybody gets some hopeful i can tell theres been huge progress since my mom was fighting this in the 1980s. My wife julie, she works for a Plastic Surgeon in utah. She got a degree in psychology. She is working women fighting Breast Cancer and it is very satisfying. The great important work she does there. But every day, day in and day out, young women are fighting this horrific disease. They didnt think they would get and it now theyre fighting it. There are some really exciting, Amazing Things that give people a lot of hopeful a lot to cheer and be excited. Even though theyre going through one of the most horrific things in their lives. We have cancer of various types. I think it is good to hear from the family. But it is also good to hear from the most exciting developments from some of the most prestigious institutions across this country. And we can fill weeks on end of hearings. Talk about peoples stories. So well have a host of hearings and watch all these news stations and theyll talk about this, that and the other. And the thing will affect more lives than anything else will be this hearing. And i wish it would get the headlines. And i wish there was more of a national imperative. I think if we went house by house, home by home, voter by voter, and asked them to rank, where do you the want to spend money . Where should we prioritize money . This would be at the top of the list. Im a really conservative person. When you spent, when you have 1,500 people a day dying. This is not just, hey, we have to push this down to a local budget. This should be the national imperative that drives us all to fund it properly and to truly, truly make a difference. Thats why i wanted to call the hearing today. Ive gone over my time and now let me yield back. Thank you for calling this very important hearing today. And it is very important. I thank all of our witnesses for being here to hear your insight with us. Especially you and your family. Im so glad youre here to share your story of your son chads amazing bravery in his battle against cancer. Today, the single biggest danger we face in fighting sxrans other deadly diseases is President Trumps budget. Earlier there month, President Trump proposed a budget that would decimate the budget of the National Institutes of health. It would slash funding by nearly 6 billion, or about a fifth of nihs budget. Its not going to be enough for us to complain. Weve got to turn that around. His proposal gives little explanation for targeting nih for this massive cut. Which can only be described as heartless. After he issued his budget, the White House Press secretary, sean spicer, tried on explain that these cuts were not really cutsal all. He was asked about the nih budget and he argued that only in washington does less funding mean there was a cut. Here is what he said. And i quote. There is this assumption in washington that if you get less money, it is a cut. And that i think the reality is that in a lot of these efficiencies, duplicity, ways to spend money better. I think if youre wasting a lot of money, thats not a true dollar spent. I wish he could talk to a few of the people he know who years ago, went to neh with what was described as a fatal disease, and in a matter of a few years, because of research, because some very smart and imaginative people, people dared to dream bigger dreams, who had bigger hopes, they were able to turn mrs. Carr, a fatal disease time of krangcancer, into a chronic. Mr. Spicer may not get that. On when youre going through it, your family is going through it. Maybe thats what it takes for people to fully comprehend how significant taking that percentage of money from an nih budget, from institutions the all over the country, doing significant research. So i know, miss carr, in your written testimony today, you said President Trumps budget cut, and i quote, lets me right in the gut. Well, youre not alone. Because a bipartisan outrage, and i think you heard the chairman say this. Over this proposal, just slashed the nih funding. On march 17, tom cole said this. I dont favor cutting nih or centers for disease control. Youre much more likely to die in a pandemic than a terrorist attack. So thats part of the defense of the country as well. Your testimony, which i hope every member of congress reads, you point out that we need to devote more funding to this critical research, not less. And we need to make sure it is directed to cases like your sons which have little or no federal funding devoted to them today. Mr. Spicer did not make the call, less funding is not a cut argument when President Trump proposed increasing the pentagon budget by 54 billion next year alone. Our committee had a hearing last week. Just last week. On how the Defense Department is wasting tens of billions of dollars, but for some research, Cancer Research is decimated rather than trimming the bloated Defense Budget. I believe there are few investments more significant than the investments we make in Biomedical Research. The work of nih is transformational with. The idea to turn ideas into cures. The idea that theres a cure over here and we cannot reach it. Were reaching for it. Were trying to get it but we cant reach it. We know if we could just get it, could it save lives. So this research is also an incredible economic engine. Generating activity in he have state in the country. Nih grants support High Quality Research and high quality jobs. They help us grow our science and technology to work for us. And it helps us throughout the wor world. This generates hopeful it gen e gentle, it generates hopeful people come to my office every day. They share their stories. Sometimes they speak for themselves. Sometimes will they speak for those who are no longer with us. The one thing that bind all of them together is our hope for tomorrow. I share their hopeful i believe in the promise in Biomedical Research hose. But we are at a cross roads. Congress must reject the devastating cuts nih proposed by President Trump. I ha he helped some of the most esteamed in the world. University of maryland and Johns Hopkins. I consider the magnitude of these proposed reductions, i think of all the potential that could be lost. I think of all the breakthrough thats could be unfunded. And the researchers who could take their talents overseas. I think of the families like the cars who have lost children to rare diseases. Families like theirs who have turned their pain into their passion to do their purpose. Race, moan and awareness of saving someone else from the grief of their experience. So i thank you for taking your pain into your passion to do your purpose. But they cannot do it alone. They cant do it alone. They need a strong partner. Now is the time to recommit ourselves. Our budget cannot abandon those values. I learn more to hearing more about the innovative work. And i call on all of my colleagues to ten supporting these and other programs. This is our watch. What we do will not only affect the people on earth this moment but likely affect generations of those unborn. With that i yield back. Thank you. The chair notes presence of our colleague from michigans 12th district whose constituent is taking today. We appreciate her joining us today. We ask unanimous consent that she be allowed to fully participate in todays hearing. Without objection, so ordered. I will hold the record open for five legislative days for anyone who would like the submit any written statements. Now it is time introduce our panel. We are very pleased to announce, she battled a rare pediatric brain cancer. Were thrilled that shes here and her family is here. I would actually like the yield to miss dingle, congressman woman dingle, to help introduce you. Thank you, mr. Chairman. Few for your courtesy allowing me to know here today. Thank you for allowing tami, not just tami but she is accompanied by jason and cj and tommy. And it is the strength and courage of all of them that has inspired us in our community. On september 23, 2 14, they got a diagnosis that none of us wants to hear. That their son had cancer. Arrest shell tell you the details more. Our g we all rallied around chad. We were all inspired by his toughness and thats how the phrase got coined. Chadtough on. November 23, 2015, and i dont forget it because it was my birthday. Chad lost his battle but heaven gained an angel. What i hope that all of us see and heard and finally tamis and jasons example, theyre trying to find bright light on a cloudy day. And i know chad is fwraching heaven as she tells her story today. So thank you for allowing her to be here. Thank you. Shes helping to also represent the Chadtough Foundation. And again pror, proactively we thank you enough for being here to share your story and talking about the foundation and what you would like to see done. So appreciate you being here. Were also thrilled to have dr. Mary beckerley at the university of medical school. Being from utah and full disclosure having worked for jon huntsman jr. As Campaign Manager and chief of staff and his family, it is kind of how i came together with the family. They had poured literally hundreds of thats of dollars in to fight cancer of. As somebody whose Family Member passed away from cancer, to have the Cancer Institute in our own backyard, were very, very thankful and that dr. Beckerley is dedicating her life and talents to this very good cause and were glad to have you share more about what the huntsman institution is doing. It is a remarkable inls constitution and were glad youre here as well. We have dr. Elizabeth jaffee. I would appreciate if we have mr. Cummings help introduce her. Thank you very much. I am truly honored to have dr. Jaffee here. She is at Johns Hopkins. It is one of the greatest hospitals in the world. And it so happens to be smack dab in the middle of my district. Theyve done phenomenal work. And it is an honor to have her cochairing the Blue Ribbon Panel and serving the people of baltimore. Not only baltimore but the world. I am very pleased to have you and thank you for being with us. Thank you. And we have the director for the Massachusetts Institute of technology of the one of the most premier and theyve done immeasurable work. Were thrilled that youre here enjoying your work. Witnesses are to be sworn so would you please rise and raise your right hands . Do you solemnly swear or affirm that you will tell truth, the whole truth and nothing but the truth so help you god . Thank you. Let the record reflect that a you will witnesses answered in the affirmative. We normally ask that you keep your comments to five minutes. But well give you great latitude. If othif theres any attachmentr something you want to share, that, too, will be made part of record. Well start with you. By the way, you have to snuggle up to that microphone and make sure the talk but the only. Thank you. My name is tami car and im here to share about my son chad carr and his battle a rare form of pediatric cancer. September 23, 2014, as representative dingle mentioned, is a day that forever changed my perspective on life and what is truly important. We took our 3yearold son chad for an mri after a fall. We had to fight for and it we were told it was to confirm a possible concussion. They said the mri would take a couple hours and not to be worried. About three and a half hours later, we were a little worried. When we saw the look in the anesthesiologists eyes, we knew we were in trouble. She said they had found something and that something was cancer. So what as a parent is your first reaction when you hear your child has cancer . I can tell you, at least ours. It was not to panic. It was to fight. Our questions were, how do we fix this . What is the first step . How do we get the tumor out . Whats the treatment plan . To this day answer we received completely blows my mind. We were told, ill sorry your son has diffused intrinsic, dipg. It is a tumor in the brain. It cannot removed. There is no treatment plan. There is a 0 survival rate and he has about nine months to live. Im sure mine is not the first story that youve heard about a child being diagnosed with cancer. It is sad. It pulls at your heart strings, right . But think about the reality we were given. We were given no hope. Zero. We werent given a fighting chance. Our beautiful spunky 3yearold who had been running around the house two days before was now given a death sentence. How is that possible . How is it possible Neil Armstrong owes daughter was diagnosed with this disease over 50 years ago and the prognosis for our son and the treatment protocol were virtually the same today . How is that possible when we live in the most technologically advanced country in the world . How was it possible our son was going to die and there was nothing we could do about it . Well, after pulling myself off the floor of the icu where i seem to have laid for hours. I decide we were not going to take that for an answer. That was not going to be chads story. There had to be a first child to survive and that child was going to be ours so. With did all the research we could into Clinical Trials. Since there are a few dedicated researchers that are studying this disease. What we found is that they are almost entirely funded by families like ours. Theyve committed their lifes work to a disease that is unfund asked they continue to watch children die year after year. How can this be okay . These scientists do not receive any meaningful federal research dollars. As weve learned, pediatric cancer receives only 4 of dollars xxt this doesnt make the cut for significant funding. Cancer kids about 2,000 children every year of 300 of those are from d i pg. That may not seal like a lot but when you think of so many children dying year after year, you start to understand the thousands and thousands of years of life that these children never see. How many families need to be impacted before we can see some challenge . We learned that second tonight accidents, cancer is willing more children than anything else. Which cancer . Brain cancer. Why not focus on the hardest brain tumor to treat . The too many pore slowly took his ability to walk, talk, swallow and ultimately live. Surely if you make inroads with that most difficult type of cancer, wouldnt that open the flood gates up to treat the more treatable tumors . That made sense to us. So while we were fighting for our childs life, we started the chad does tough foundation. We are proud to work alongside other foundations and families who are similarly driven to make a difference of children who are battling this. Chad spent every possible moment with his brothers cj and tommy who are here today and who he loved with every ounce of his being. We shared our story with anyone who would listen and we will continue to do that. We pushed chads physicians to think outside of the box ask we fought as hard as we could. Rerefused to give up. Unfortunately after fighting for 14 months, our son chad took his final breath on september 23rd, 2015. Thats a moment i will live over and over in my head. It is something i think about every day and i will think about the rest of my life. A moment that no parent should ever have to go through. It is a moment that i would not wish on my worst enemy. But we are doing our best to survive and we live each day, trying on honor chad and all the other dipg angels. The Chad Foundation racesed 1. 5 million for research in honor of our son. Today our family is more focused than ever on being part of the progress for this disease. But it is just a drop in the bucket of what is really needed. Families who have lived a reality that no parent or grandchildren wouldnt ever want them to know. We 97 thought this would happen to us and no one who knows it will be today or tomorrow. When i hear about those potential cuts to the nih, as you said, it just hits me right in the gut. There have been such Great Strides made around pediatric cancer such as leukemia. Bright minds were given the resources. Pediatric leukemia, 40 years ago had a 10 survival rate. Now has a survival rate of nearly 90 . Chemotherapy was developed as a result of pediatric leukemia research. To think that the relatively small 4 research bucket for pediatric Bucket Research might be getting even smaller. The proposed 18 cut to the nih budget will especially affect diseases such as dipg. And at a time when there are finding about these tumors, in the last five years we have seen explosive advancements in data and tool for Cancer Researchers to open up the battle against the most challenging and pediatric cancers. Without federal funding, we are quick will going on lose ground in that battle. Federal funding is critical to recruiting the best and brightest scientists and no amount of family fundraising like ours is going to replace that. These scientists are already choosing to today pay cuts, to do research. Foundation fundraising may help to increase the pace of that research but this establishes that it is pursued in the first place. If nih funding is reduced, it will stifle progress for some of the most Vulnerable People in our country who face devastating illnesses like dipg. I ask that when you consider the proposed cuts, you think about my son chad and all the other children who were not given a fighting chance and not even given hope. You picture his face and you think about what might have been. Our family and others like ours will continue to work tirelessly. We cannot do it alone and we to. Without the nih research, children will have no hope for long term survival. Thats an future we can semifor these children because it is no future children because it is no future at all. Our children deserve more and we must do better. Thank you again for the opportunity to speak today and i would be happy to answer any of the committees questions. Thank you. Doctors beckerle you are recognized for five minutes. Good morning. Thank you very much and thank you for that incredibly inspiring story and your tremendous commitment to Cancer Research. Were all with you, 100 . Thank you chairman and Committee Members for your sustained interest in federally funded Cancer Research and your support to our mission to defeat cancer for all of humanity. My name is mary beckerle. Huntsman Cancer Institute is one of 69 designated Cancer Centers. We are focused on advancing Scientific Research for people around the United States and around the globe and for children like chad. Research is our best defense against cancer. Everything we know about Cancer Prevention and treatment today is based on research including basic Discovery Science which provides the new knowledge that the health of our nation depends. It is an incredibly exciting time in Cancer Research and im hear to tell you that our National Investment over several decades is making an impact. The cancer death rate rate has declined by more than 23 since 1991. In 1971, one in 69 people in the United States was a cancer survivor. Today, 1 in 21 people is a cancer survivor. Over 15 million of us in the United States today. In just the last 18 months the fda has approved 17 new Cancer Treatments and many, many more are in the pipeline thanks to our National Investment in Cancer Research. Despite this great progress, as we have just heard we have so much more to do. Cancer is complex. We now know that cancer is not a single disease but rather its a collection of more than 200 different diseases. One in two men and one in three women will receive a cancer diagnosis in their lifetimes. In the usa alone, one person dies from cancer every minute of every day. Every minute of every day. Today i want to share some examples of how one federally funded Cancer Center, the huntsman Cancer Institute is making a difference for patients and their families. A major focus is on cancer genetics, Huntsman Cancer Center is the steward of the largest genetic database. This links the family trees with clip call records so we can detect cancer that runs in families. We have worked with patients and their families to discover the genes responsible for many types of inherited cancer including colon cancer, Breast Cancer, melanoma and others. So what does this mean for Cancer Patients today . Let me share a story about greg johnson from utah, an artist, husband, and father of two. Members of gregs family have a disease we call fap. Certain Family Members have inherited a mutation that causes colon cancer at a very young age. If you have this mutation you have a 100 chance you will have colon cancer. Now enables us to realize which of the family has high risk for colon cancer and to get care. Greg in utah today he is outliving his family history. His mother and grandmother both died of colon cancer in their 40s. Way too young. Now he is approaching 60, thanks to federally funded research of rescission prevention. The use of cancer genetics is also important for children working on this actively at huntsman Cancer Institute. Federal funding has led to dramatic improvements of survival 43 increase over the last couple of decades but just recently inherited former child agreeing cancer was recognize we could repurpose a drug developed for lung cancer to cure this disease in Childhood Cancer. But cancer still remains the leading cause of diseaserelated death in children. We have so much more to do. Finally even in our great nation not everyone has equivalent access to Cancer Prevention and care. One Underserved Group is the rural and frontier residents. In the state of utah, 96 of our land mass is rural and 70 , frontier with less than 107 persons per square mile. So very sparsely populated. Many in your states also have frontier residents who live far from Health Care Centers relatively poor cancer outcomes. Researchers sat huntsman Cancer Institute has a new approach to deliver counseling by telephone to reach those living in the world and frontier areas developing new tools for symptom management to support those Cancer Patients and their families who live far away from Medical Centers while undergoing active treatment. Great progress in Cancer Prevention and treatment is happening at national Cancer Institute designated Cancer Centers across our nation literally from sea to shining sea. Our federal government has an unmatched and irreplaceable role in supporting robust and sustained investment in Cancer Research. We are deeply concerned that the proposal to cut nih funding by 18 in fiscal year 2018 will have a devastating impact on our progress toward defeegt cancer. The need for investment in Cancer Research is great. The time is right. Research is the hope for the future. Research clearly saves lives and we need to have a sustained investment in this life saving work. Thank you very much. Thank you. Dr. Jaffe you recognized for five minutes. Thank you. Chairman and Ranking Member cummings thank you for your dedication to this innovations into research. Scientists in the United States lead the world in Cancer Innovation and success and continued investment will relieve cancer suffering for all americans. Im the Deputy Director of the center at Johns Hopkins and today i would like to focus on four key areas that underscore the importance of funding research. We are in the midst of a technological revolution, amassing huge amounts of information and using it to transform how we approach Cancer Prevention. It is needed in addition to the nih budget allocations to accelerate in five years what would take ten years to move new discoveries into treatments for patients with cancer. Any cuts would slow research and innovation. 20 drugs to use the bodys immune system to kill cancer have been approved. Without the decades of investment and funding on the immune system, patients with these cancers would have died of their decide disease in less than a year. Instead they are living years with good quality of life. The rapid pace of scientific discovery has opened the door to new areas of research that would not have been possible even five years ago. As one example, the nci is investigating in Laboratory Research and Cancer Screening studies to develop vaccines to recognize the earliest changes in a normal cell and eradicate the cells before they cause cancer. This is what we call prevention. Such vaccines already exist but we have the potential to do much more. There are still many challenges to overcome. Treatments for rare cancers including pediatric cancers which we just heard about are often neglected by the pharmaceutical industry. The nci has supported networks of Cancer Centers to hold Clinical Trials on these rare diseases. One of them helped to lead the approval of a new drug for a rare form of skin cancer. Another challenge is the need to identify barriers and provide solutions to people who typically lack access to the best treatments. After studying this problem morning our own baltimore populations, we narrowed the gap between the minority and nonminorities who participate by 60 since 2001. Maryland was one a state with the second highest cancer death rate. The deaths have plummeted in our state and we are now the 31st. This is due in large part to governmentfunded screening programs. Clab rags between the nci, the fda, cancer foundations, biotechnology and pharmaceutical companies and patients are critical to ensure progress in reducing morbidity and mortality. Data from is used widely to develop genetic models and drive the next questions in cancer biology and new drug development. This has led to a new area of medicine, Precision Medicine which uses the genetics of a specific cancer to determine the best treatment. We have started the match trial which pairs patients based on their tumors genetics. Its the only trial of its kind in the nation. It highlights the advances and innovations taking place in Cancer Research but we cant end the progress with the current generation of scientists. The perceived instability due to the threatened reduction in the budget without significant increases in the past decade have created a crisis where young people are less inclined to pursue science as a career. Peoples lives depend on this research. I brought with me stephanie, she is a colon cancer patient. At 23, her cancer had spread and no Treatment Options were available to her. She found Johns Hopkins and had a Clinical Trial. The scientific discoveries leading up to the trial were funded by the nci. Stephanies tumor had shrunk by 65 and now stephanie is healthy and able to move on with her life. The successes in science and medicine cannot continue without an increased investment. Now is the time to ensure the health of medical and Technological Industries and provide a career path for future innovators and rapidly develop new Cancer Treatments and Prevention Strategies to once and for all eradicate cancer. I would like to thank the committee for the opportunity to speak to you today and i look forward to answering any questions you may have. Thank you for being with us, stephanie. God bless you. Dr. Jacks you are recognized for five minutes. Thank you for the opportunity to discuss the state of Cancer Research in our country and the transformation in cancer care we are now witnessing. Its a privilege to be here with mr. Carr and with my esteemed colleagues. Im the david h. Koch institute for integrative Cancer Research. Ive been actively participating in Cancer Research for the past 36 years including overseeing a Research Laboratory at m. I. T. Focused on cancer genetics. Along with dr. Jaffee and dr. Dina singer, i co chaired the cancer moon shot Blue Ribbon Panel. Dr. Beckerle was on the panel as well. It described several areas in research, treatment, and prevention and we look forward to discussing this with you today. Let me also express my appreciation to the members of congress for the passage of the 21st century cures act which was supported in the house and the senate and includes funding for moot shot programs for the next seven years. Cancer Research Discoveries made over the last few decades have led to powerful new classes of cancer medicines which are impacting the lives of thousands of Cancer Patients today. Other discoveries detect the disease at earlier stages when conventional treatments are more successful. Still, despite this progress, based on current statistics, over the next ten years more than 15 million americans will be diagnosed with cancer. Including more than 150,000 children. This year over 600,000 americans will die from cancer. We have come a long way but we have a long way to go. Regarding President Trumps preliminary Budget Proposal for fy 2018 which recommends a 18 cut in the budget for the nih. Such a budget decrease would have devastating effects on the effort to make progress against cancer and other diseases and imperil the training of the nextgeneration of Biomedical Researchers. At the time of the passing of the National Cancer act in 1971 the understanding of the processes that drive cancer was extremely limited. Since that time federal investment in fundamental Cancer Research has led to dramatic advances in the elose dags of the disease progress. Today, more than 500 Cancer Associated genes have been found to be altered in human cancer. New anticancer therapies have been developed to counter act the effects of many of these changes and there are many more to come. While the development of these drugs requires significant r d investment from private industry as well as the involvement of clinical investigators they are rooted in science discovery made in academic or government laboratories supported by the nih and the nci. Support is essential for improving the health of our citizens. Its critical to the economic welfare of the country. Its estimated for every 1 reduction in cancer death rates there is an approximately 500 billion value to current and future generations of americans. Advances in Biomedical Research leads to massive investment frts the private sector including r d spending and the Venture Capital investments in new companies. In massachusetts alone there are 60,000 jobs in the biopharmaceutical industry. The investment in Cancer Research in the United States has paved the way for this progress. Targeted therapy, immune stimulating agents, nanotechnology based drugs including those based on my institution at m. I. T. And more will be the mainstays of Cancer Treatment leading to improved response rates, longer response times and increasingly, cures. The United States has led the world in achieving this progress. And we should all feel a sense of pride for these accomplishments. Still, there is much more for us to do. Thank you again for the opportunity to appear before you today. Im pleased to answer any questions that you may have. Thank you. Thank you all. We are going to recognize the gentleman from florida for five minutes. Thank you, mr. Chairman and thank you for holding the hearing. This is a very important issue. Dr. Jacks you mentioned the benefits that you do the research, the breakthroughs that leads to a lot of value for society. I think you said 500 billion. It says that we did the 21st century cures act. Obviously were going to have to fund that. As we get breakthroughs, even as a fiscal matter it seems to me youre going to save billions and billions of dollars because most of our Cancer Patients are older, most of them are on various government programs. Its obviously great for saving lives but even here in the congress as we are dedicating money to this, isnt it the case we will save money in the long term . Theres no doubt about it. The economic benefits of improvements in the treatment of cancer and ultimately cures for cancer will play out in many ways including reducing the costs of health care for those individuals and increasing productivity among our citizens. The economic payoff of this relatively small investment is staggering. With that in mind what are the funding requirements under 21st century cures and nihs work in Cancer Research. What do we have to be doing in congress . Im happy to start. The funding the 21st century cures act provided dedicated funding to begin the initiatives that we outlined in the moon shot and Blue Ribbon Panel. We are grateful for that and that work is already beginning. I think, frankly, the bigger issue is the nih budget and the nci budget. We have seen increases. Congress passed a 2 billion increase in funding in 2016. That was a welcome relief after a long period of stagnant budgets and opened up the door to no ideas. The 2017 likewise had an increase in 2 billion from the congress. Increases of that magnitude will be important for a sustained period of time to allow us to deliver on the promise of Biomedical Research. We do a lot of oversight on how the government spends money. You see they spent money on binge drinking in sororities and i think that should be viewed and we can criticize that. But can you reduce funding without negatively affecting Cancer Research, dr. Jacks . Absolutely not. If the Budget Proposal put forward were to be enacted, estimates are that zero new grants would be funded next year by the nci. Zero new grants. So the simple answer to you question is no. We should not pure sue the forms of Cancer Research we are undertaking if that proposal were to be enacted. Go ahead. Perhaps i can comment as well. About 80 of the nih budget is dispersed to the states to the Cancer Centers for research, for training, for centers. And as dr. Jacks said, this proposals 5. 8 billion cut would be absolutely devastating. No new grants. It affects the economy of our states because every dollar of federal funding turns into new jobs and Economic Growth within our states and most importantly, i think, to highlight, is the critical importance and the critical impact of this type of a cut on the pipeline of trainees that really is the future of Cancer Research and future of Biomedical Research in our country. These folks would not be able to be funded and wed lose a whole generation. I know there is private money involved but it seems if there is that little government money available you cant leverage the private as much as you would. Is that fair to say . Thats very fair to say. We couldnt leverage the private money. But also i think the nih money allows for innovation. Often the private money is geared toward specific interests of that foundation. We will lose innovation in this country if we decrease this budget. I appreciate the testimony. I think this is very important and ms. Carr, thank you. I think most of the members in this committee believe that what you guys are doing is very, very important and theres a lot of Different Things we police waste on this committee. But this is one, i think, area where clearly the money were putting in has the potential to really do a huge amount of good for peoples lives and as we said at the beginning for our fiscal solvency going forward. I yield back the balance of my time. We would like unanimous con sent to allow ms. Dingell to the ask the next round of questions. I thank all of you. Im happy to be here to support my friend tammi. Let me ask some questions of tammi so we can talk about the issues and see the challenges. The Chadtough Foundation raised 1. 6 million last year. Can you talk about the research the Foundation Supporting in your vision for the future . For us and our infancy, really, the first year of the foundation that was a tremendous amount of money to raise but think about that. You see dollars all the time. Thats nothing. So obviously, we are supporting efforts through what is called a dipg collaborative. We are a small group of Family Foundations. We are the only people that are funding this disease. So we are trying to we are trying to focus our efforts together and not reinvent the wheel. All of our Family Foundations come together in a dipg collaborative where we have a medical Advisory Board that looks through the proposals that come through, helps us to find the most efficient ways to get the biggest bang for our buck because there is so little funding for this disease. So we are really efficient which i figured this committee would appreciate and we pool our resources together. The Chadtough Foundation individually is supporting significantly at the university of michigan where we are working to create a Pediatric Brain Tumor Center that focuses strictly on pediatric brain tumors and a Research Foundation and working to raise separate dollars to go to the university of michigan. Weve raised 19 million out of 30 million that are needed to get the center started. Thank you. You have been a tremendous advocate for all children since this tragedy. Can you talk about your experience meeting other families across the country that have been impacted not only by this disease but ive met other families that have been hit by cancer that youve met. Can you talk about that experience . Sure. People say this is not a club that anyone wants to join. Thats the first thing ill tell you. These families are put through a lot. While theyre trying to get their child healthy, if thats possible. And theyre there are strains on every aspect of their life. They quit their jobs, they change their life around. Theyre amazing people. And i didnt step into this world willing. But now, im hopeful that i can be of help in any way possible. Not everyone who goes through this battle wants to do what were doing. And i appreciate that. This is an individual journey. And people take the steps that they feel right. Some people dont want to have anything to do with it afterwards. But i guess theres a group of us that dont feel that way. And in all honesty, it helps me to get through the day to know that were trying to create something good out of a horrible situation. So you know, our hope and several other families that we work with, is that we can be advocates for those that dont find this to be the way that they want to follow their next steps. That this isnt for everybody. And some people i dont think any wrong if they want to crawl in a hole. I get it. But for me, personally, i need to see something good coming out of this. So anything i can do to help so ive got one minute left so im going to ask you, what would you say to Congress Today that you and families of children with pete ydiatric can of any kind . I hope you fight as hard as you can against this proposed budget cut. This is devastating. When i think of dipg as an example. Two and a half years ago when chad was diagnosed they talk about Precision Medicine. Biopsies for these tumors were not even common place. Because its in the brain stem and its dangerous and things can go wrong. Now, its become more common place. They figured out how to do that. In two and a half years we have seen such progress. We donated chads tumor postmortem and michigan did sot sequencing. We didnt have the biopsy the diagnosis biopsy tumor but we had the postmortem and they found a mutation they never knew existed in dipg before. They said we have some medicines that we know can impact this. And i mean, i lost it. So are you telling me if we had had this information two and a half years ago could something have been done. And they said we could not have sequenced this tumor this way two and a half years ago. And chad also had the ability to part in a trial at Sloan Kettering university in new york where they insert a catheter into the tumor. We felt obligated that we needed to do something if it was not going the hurt him and again, maybe it would cure him. At the time thats what we were thinking. That wasnt the case but they learned so much from that trial and there are so few Clinical Trials as it is. And i look at this budget and think about all the promise around even this one disease and the fact that zero new grants would come out. That leaves it all in the hands of families like ours. We are doing our best to raise something. But without the support of the nih, all that progress is going to go downhill and not having those new scientists, the new researchers, the bright minds say i want to commit myself to making a difference if they have no funding how can they do that . When you think about 600,000 people lost a year . That is theres nothing worse. How can we not be focusing on this . How can this not be the number one priority when we talk about budgets and again maybe youre right, it takes someone going through this for them to get it. I dont wish anyone to go through this to get it. Listen to what were saying, you dont want this to happen to anyone you know. My thought would be anything that anyone can do to fight these budget cuts there needs to be increases, not decreases. Well said. Thank you for sharing that. Thank you. Thank you, mr. Chairman and Ranking Member for including me today. Well now recognize another gentleman from michigan. Mr. Paul mitchell. Now recognized for five minutes. Thank you, mr. Chairman. Ms. Carr, first let me say i couldnt be more touched by your story. I have a 6yearold at home. Please be assured i have already signed on to a letter urging full funding of the nih. There is a lot of ways we can save money in our bloated government. Ive been here 90 days and we have seen a variety of ways we can save money. Pediatric cancer is one of so many. We have lost Family Members, i have, to cancer, never a child. I cant fathom that. I thank you for your bravery in taking this challenge on because youre right. Crawling in a hole may be the answer. Let me ask you one question. Can you share with us why nih only allocate 4 of their money to pediatric cancers . It seems a paltry percentage. Is there any insight into why . I agree with you. I think our kids deserve a heck of a lot more than 4 . And i fought that from day one. I dont think people realize that either. You know, they think about cancer and a lot of times you think about kids, right . You see all these advertisements with these little bald children and you think thats where my dollars are going and theyre not. And i think thats a shame. As to why . I think unfortunately its numbers and its money. And pharmaceutical companies dont want to invest in something when theyre not going to sell thousands and thousands in drugs. Thats the reality of it. So thats one thing. Thats that i could say for sure is part of the issue and its wrong. Anyone else on the panel can share something . Perhaps i could comment adds well. I think that one of the things that were appreciating right now is just the Incredible Opportunity in childhood Cancer Research and thats one of the areas that was highlighted by the cancer moon shot effort. In addition, i think that many much of the Research Money that is provided by the nih and the nci goes to what we could call fundamental cancer biology that is not targeted to a specific disease area but yet has relevance to many different disease areas. I want to reassure you that a lot of research at nci and nih is focused on areas quite relevant to pediatric cancers. In fact my own laboratory is funded by a basic science grant that we study how cells move and thats relevant for metastisis. I would like to suggest we have a hearing on oversight on how it is that nih makes on grants. Thank you for your patience. Now recognize the Ranking Member, mr. Cummings. Thank you for sharing your story with us. Can you tell me can you tell us a little bit about your son. You probably knew him better than anybody else. He was a really special boy. He was beautiful. And he was funny. And he loved his family. He loved animals and he wanted to be an animal doctor when he grew up. Thats what he would have told you. He carried doggies around with him wherever he went, barly and frederick. Frederick is with him and barly is with me. He had an eclectic taste in food. He liked miso soup and peppers and he liked to have fun. He loved life. And you said something that i struck me. You said this werent your exact words but you said we mourn for what could have been. Every milestone. He would have gone to kindergarten last year or this year. You watch his friends and you see you see them reach a milestone. You see them learn to ride a bike and he wanted to do that. Hed say when my leg starts working again i want to ride a bike. So, yeah, its horrifying. And it isnt right. We want you to one of the things that i talk about with my staff is that the limited amount of time we have on this earth we need in whatever we do to do everything in our power to be effective and efficient. Because we can spend a lot of time going in circles. And then you look back at your life and youre frustrated. Dr. Jaffee when you hear somebody like ms. Carr come in if she were to ask you how do i make sure that i use my energy and the resources at hand to be most effective and efficient, what would you tell her . We need our partnership. I think in the past we didnt appreciate as much what patient and Family Members can help with and guide us and tell us what are the important questions and reminding us that were not concentrating on the cancers we need to concentrate on. That is what i would tell her. Please be our partner in this. And ms. Carr, i would like to get your reaction to a short video clip of our white house Spokesman Sean Spicer answering a question about the cuts. I know what clip it is. You are familiar with it . Ive seen it. In this clip he tries to claim that the massive reduction in funding is not really a cut at all. I think were ready. You can go. To cut the National Institutes of health budget. It is as you know an important part of the government funding medical research. Yeah. Budget director mulvaney acknowledged that the private sector cant fill that gap. With you need a robust government press. A rare disease patient so he could talk about medical innovation and new cures, how do you square those things when you cut nih by 19 . I think that director mulvaney someone asked him the same question. He suggested my outtake is that it wouldnt be cut. There is an assumption if you get less money its a cut. And i think the reality is that in a lot of these, theres efficiencies, ways to spend money better. If you are wasting a lot of money thats not a true dollar spent. To assume because you throw money at a problem it is solved is a washington way of looking at a budget problem. We shouldnt be asked taxpayers to send more money to washington to fund things that dont further those goals. Ms. Carr do you agree that nih is wasting 6 billion a year . No. And i would ask i wonder if he has ever had an experience like ours or nobody anybody who has or President Trump, i would ask him the same question. When he says its a waste, without more funding, dipg research if i look at that specifically, its zero dollars funded. Is it a waste to focus on this disease. Without additional funding theres zero funding coming. There will be nothing. I dont think focusing on one of the most difficult tumors and hopefully seeing some trickle down to the other more treatable tumors would be a waste . You would agree that democrats and republicans need to Work Together . I dont think this should be a partisan issue. I agree. Think about how many peoples lives are being lost in this country. Anything but accidents. To me, i dont understand how cutting the funding mechanism to solve this issue makes sense. Just one last thing. I also listen to you as you talked about the idea that you wished you did not have to go through this. And none of us, unless weve been through it can really put ourselves in your place. But as you were talking i kept going back to what i said to you a little bit earlier, that is, youve taken your pain, turned it into a passion to do your purpose. You could have easily gone and not easily, but you could have gone into a corner and said im not doing anything. I dont want to go through this. I dont want to relive it. But youve been able to turn it around. And now i think its something that feeds your soul. I often say that our god is a recycling god, taking the pain, quite often, recycling it so that it can become something Even Stronger and better. So i thank you. And sorry you had to go through this. I thank you. But i also thank your son. Doctor, thank you. You asked earlier about what what you might do differently. I just want to say youre doing everything exactly, amazingly right. We are so, so grateful for your voice. And i as you see the voice your voice is the voice of chad. Its the voice of all children and all families that have been affected by cancer. Its the voice of everyone who has been affected by cancer and im personally so grateful to you for your bravery, your courage, your voice and your commitment to continuing to work toward a difference at a time when it matters. I think your right. I think we have seen through this whole journey, these things come together. Theyve come together in a way that somehow makes sense and i know that doesnt make sense but when you can see the puzzle pieces coming together to do something thats beyond a single person, were blessed to have that. And i feel that unfortunately, this was my role in life and that was chads. And his journey was to create change. And this was to be his legacy. So im going to continue to fight and do whatever i need to do and partner with anybody who wants to the help make that happen. Youre the agent of change. Well, chad is. Hes working through you. Im doing my work for him. Thank you. Thank you. Ill now recognize the gentleman from tennessee, mr. Duncan. Thank you, mr. Chairman for holding this hearing. I dont think i have ever heard a kinder, sweeter tribute from one witness to another than dr. Beckerle just did for ms. Carr and i cant top it. I wouldnt even dry. But will say this. Im so sorry. Because we have had so many meetings. Im sorry i cant get here for all of your testimony. I have four grown children and now nine grandchildren all in knoxville and i have and i really am wrapped up in all of them. But ive got a little grandson who just is a little he turned 4 in february. So and im really wrapped up in that little boy. Saturday i got to go to his first t ball practice. And you know, ive always heard it said that the worst thing to happen to you is to outlive one of your children. I dont have any question about that. And it just thinking about that, i understand that your little son was 4 or so when he passed away. So is so im really so sorry. I can tell you this, several years ago i was one of the first to co sponsor a bill to give the nih a 100 increase in funding over a fiveyear period. I wouldnt have done that for any other agency. You know, im a conservative republican. I vote to cut everything up here. But because you know, weve got a 20 trillion and its going to be 91 trillion in 30 years. If we sit around and let that happen were going to destroy the country. Well be printing so much money that it will just everything they tried that every country in the world and it hasnt worked any place yet. But i very much favor medical research and i appreciate the work that you all are doing. I do have to say this, though, you know, everybody in the country wants us to give them money for medical research. So weve got to try to figure out as best we can on where we get the most bang for the buck or making the most progress. And id like to know, you know, i go every year. Ive gone every year for the susan komen race for the cure and the women i say one reason i go thats the biggest turnout of thousands of beautiful women in knoxville. But you know, men wouldnt turn out for run against Prostate Cancer the way that women turn out like that. But where are we making the most progress . Or where are we getting the most bang for our buck . What would you all say about that . I dont think there is a simple question to that answer i figured there wasnt a simple answer. We have to try to find out. I certainly think we would agree that the investments made in the nih and the nci have been foundational in all the progress weve been talking about. And we have entered a new era when it comes hoe to how we thi about cancer and treat the disease. The foundations that youve described and that mrs. Carr contribute. They are a meaningful piece but a relatively small piece. So the bulk of the support that takes place in universities and government laboratories comes from the nih and i think the progress that weve made against cancer and other diseases speaks for itself. Yes, maam . And ill just add that the Blue Ribbon Panel did identity ten areas of priority based on all the progress weve made so far. In a way, that was a panel that was able to prioritize as you are suggesting. But again a lot of the priorities were to identify the challenges and try to overcome those challenges. So weve had some Great Successes. Now we need to go to the next step and address the challenges that still remain including diseases such as pediatric cancers that we are just learning in the past five or six years are different from adult cancers. That was an important piece of information that came from nih fund and basic research. So i think this is a very important area. I also appreciate you saying that. Because that is one thing that i think theres the bulk of the research has been on the adult cancers. And the thought being it will trickle down. But kids are not adults. Theyre not getting cancer for the same reasons. Focusing more on the pediatric cancers. There is some overlap. I understand that. But these kids kids are not adults and the trickle up approach might make more sense. My dad and one of my uncles died of Prostate Cancer and ive got a touch of it so im very much interested in what you all are doing and ill support you every way i can. Make you can. Just very quickly, i think what youre seeing in the progress today in terms of reduction in cancer death and increased survivorship is the result of decades of investment of the federal government in Cancer Research and in fundamental Biomedical Research. We a lot of the research that has led to the cures we have today and the knowledge about how to prevent cancer has come from basic Discovery Science based on people following their curiosity and discovering new things about how cells work that only later did we appreciate are critical for tackling the cancer problem. My lab started out working on a protein in chicken giz hards and now im working in ewings sarcoma. Its the fundamental science that has led to the discoveries and the kucures we have today. Now recognize the gentlewoman from illinois, ms. Kelly. I have been on this committee for two terms and i never felt like i need to give everybody a hug and say its going to be okay. Thank you for sharing your story, ms. Carr. And for fighting for all the children who cant fight for themselves. Early on in my career a long time ago now i worked with st. Jude patients. I cannot reality exactly because youre a mom but i saw kids that we saved but i went to funerals also. So thank you so much. The role of Clinical Trials toward life saving medical innovations cannot be overstated. My priority focus is on medical research, priming the provider and researcher pipeline and alleviating barriers to underrepresented communities in Clinical Trials. I believe that research is our best defense against diseases and conditions that strip our loved ones of their vitality. I believe we have to ramp up efforts to identify solutions to provide the medically underserves with accessible Cancer Treatment. Clinical trials between minority and nonminority communities. Can you be more specific which nonminority communities are in your area of research . Its mostly Africanamerican Community in baltimore but its we also have a Hispanic Community and have increased it in that community as well but its most of what we do is geared toward the African American community. What can congress do to be helpful . And i guess, because mrs. Carr is here also you talked about we need to do more around kids but in the minority communities also. It was research that helped us figure things out. And we were concerned that there were prior history among africanamericans that research was bad due to instances that happened 20, 30, 40 years ago. But that wasnt the issues for our community and it was through research that we learned that several issues were important. One, the biology of not only the cancer are different and were learning that through biological studies but also patients africanamerican patients are more susceptible to high Blood Pressure and other diseases that would make them ineligible if our criteria in the Clinical Trials were not looser to allow for min call damage to other organs. That was a really big finding that we wouldnt have realized. Another issue that is important that Clinical Trials do take more time. And we had to figure out how to accommodate our patients in both transportation and not requiring more than what they could handle with having to with at work or Family Members having to be at work or somebody taking care of the kids. There is a combination of social and medical issues that we identified. Do you feel like you still deal with the tuskegee effect . Actually not. That was not really the issue that was raised among our patients. In fact the number of patients we were seeing in the Africanamerican Community was not reduced. It was the ones we were getting on Clinical Trials. And those are very important because most of the cancers were dealing with are not curable. So we wanted to make sure that africanamerican patients as well had access to the best Clinical Trials and were willing to consider them. I represent the second Congressional District of illinois and particularly chicago is home to two of the nations nci designated comprehensive Cancer Centers, the robert h laurie and the university of chicago. And im familiar with the work of nih Research Funded cancer institutions. However, i would like your general insight about the presence of nih Research Universities that are embedded in residential and commercial districts. Can you speak to the Economic Activity that nih Research Institutions generate in the medical Research Setting and the Economic Impact that nih Research Institutions have on surrounding communities . Whoever wants to answer. Perhaps ill start. I direct a Cancer Center. Its not a comprehensive warrant center. We do Foundational Research but we are located near the dana farber center. And we have seen it stimulates private investment. Kendall square used to be an industrial area. And when i joined the faculty 25 years ago that set of industries was in decline. If you visit today you would be amazed at the number of medical companies that have now surrounded the m. I. T. Campus because they need to be close to where the action is. And the action in our sphere is funded by government grants. In massachusetts alone, there were last year 2 billion in Venture Capital investment in new companies in this space. Thats one indication of the pay back that such investment makes. Besides saving lives and the moral come papass part of it th is economic value too. Now ill recognize mr. Palmer for five minutes. Thank you, mr. Chairman. I apologize for having to step out for a few minutes. This is something that really really touches me. And what id like to know is ive been working on regulatory issues that have impacted everything in the country and this is for our researchers. Are there any unnecessarily burdensome regulations from the fda or other agencies that you think we could modify, change, correct . So that it doesnt slow or restrict Cancer Research . Ill give at shot first. I do work pretty closely with fda. I hold investigator initiated inds and i have to say that the fda is very, very helpful. It helps us develop more rapidly, drugs because of their large experience in drug development. I think theres been reorganization recently, to your point, that has really helped by bringing cancer under one leadership. Its been very, very helpful. I think the progress weve made in cancer drug development, imu imunotherapy drugs. I see the fda as being very helpful and the fda has been modifying how they do business based on the changing environment. One of my very Close Friends has a brain tumor and hes going to india for treatment. Its a treatment thats been approved for testing at Johns Hopkins for alzheimers but not for treatment of the tumor. It seems to be working. And one of my concerns is some of the impediments that the fda who want to make that choice, and rather than going to india to be able to get that treatment here and give him a fighting chance and thats one of my issues. Another thing is just do you know off the top of your head how much of the nih did you want to respond to that, ms. Carr. I would like to, actually, because the community were involved with these families and children who suffered, they are forced to go out as well. Yeah. Theyre ahead of the game in australia, the u. K. , germany, even mexico in some senses, and they have no choice. People think when you go to india youre going for exotic treatment, and hes going to ba bangladora, like our silicon valley. Its hightech, sophisticated, and just from a personal perspective, and i think from the perspective of a lot of patients, we need to allow that to happen here. The patient needs to have that choice, but i totally agree. When theres so much at risk and theres so much on the line, parents, at least, are willing to do whatever it takes, and when youre telling someone theres a 0 chance, and someones saying, well, we have this option, and would you want to try that, you know, to be able to do that is important, i think. Well, i appreciate its hope. I appreciate you getting my attention and giving that response. Im from i grew up in rural northwest alabama in the, you know, what people consider dirt poor, and particularly interested in what the huntsman Cancer Research is doing and in rural areas. Is that nationwide . So, actually, because we are surrounded by vast rural and frontier populations, we just are in a really great place in the country to make this a focus, and we believe that the work that were doing in utah and in the mountain west, of course, has complete relevance to rural and frontier areas other places, so, for example, the symptom management tool that weve developed, we know that parents undergoing chemotherapy who are rural and frontier patients drive long hours away from the Medical Center after their treatment, and they go back home, and they are facing debilitating, sometimes, challenges side effects, so we developed a tool that touches base with them on a regular basis, and with their care giver, and weve found thats really alleviated their symptoms quite dramatically, and also reduced care giver anxiety. So that kind of thing is a way in which we reach out and try to support our rural and frontier patients and their families during the course of their treatment, and what were learning in utah should be relevant around the country. If the chairman would indulge me one more question. Its an issue this committee is focused on, the chairman, Ranking Member cummings, and that is drug prices. So a study here from memorial sloan Cancer Center, 3 billion wasted in Cancer Treatment where the Drug Companies put more medicine in the vile than they need, knowing its more than needed for themedicines basica thrown away, and valued at 3 billion. Would any of you like to comment on that . Are you aware of that . Is that something youre aware of . No. I would recommend its the article here, put it in the record. With no objection, so ordered. Thank you so much, mr. Chairman, and to our Ranking Member, and ms. Carr, thank you so much for talking about chad. I didnt know chad. I raised three sons. I know chad. And to hear your description of him, he represents thousands of children throughout this country, millions throughout the world, and in your written testimony you talked about the dipg claims about 300 lives a year, and you mentioned that thats really not a large or huge number, but which child would we not do everything in our power to save . If it was one child, two, or 300, which one would we not do everything within our power to save . I also understand that Chad Tough Foundation is part of a larger group of organizations looking for clues to dipg. Together, these groups are funding a registry to collect information on to these diseases, is that correct . Yes. The dipg collaborative i spoke about before has formed the dipg registry, so when chad passed away, we donated his tumor postmort postmortem, and it was the university of michigan has some of that as well as physician who is now going to lury childrens hospital, and its also kept in the registry so it can be utilized by scientists around the country, so that is one investment this collaborative has made to really get the word out that this is a way that we can Impact Research forever. Last month, nci now said its launching its largest study of africanamerican cancer survivors in the United States drawing on an existing population base cancer registry, the Detroit Research on cancer survivor study would look at factors that affect survivor rates among africanamericans diagnosed with cancer. We talked about that, but, doctor, could you explain the range of social and bigraphical variables the study considers as it relates to cancer survival. Wow. Thats a good question. Thats not my area of expertise per se, but i would expect that there are going to be a range of issues inco issues including what the types of underlying diseases the patient has had and access they had for those treatments because when a patient who is treatment gets cancer, its a lot easier to receive the treatments we have than patients who have other underlying issues, so i think that would be a major issue depending on how much access to good care the patients have had prior to developing the cancer. And then socioeconomic is important because getting access, even through transportation to the right places is very challenging issue for patients who dont have the means. Thank you. I dont know if the other colleagues would like to add to that. I would just comment this is withdrawn of t one of the things so important to the National Cancer institutions efforts so that the nci can bring together nationwide cdata bases, and tha eliminates the kind of sampling error that happens if youre just looking at one site in one state that might be different than what happens in another place in the country, so this is a really important contribution of the national Cancer Institute to our national health. Great. Thank you. Using data from the nci Childhood Cancer study recently published Research Revealed a reduction of second ma llignanm and research determined over the course of 15 years or more, children treated with lower doses of radiation were less likely to develop second cancers. Can you comment on the value of this long term research, any of the guests. Happy to comment on that. I think what that study points out is progress made in understanding the consequences of the treatments that we use, and radiation is a good example. Its now clear that radiation promotes the kinds of changes in cells that ultimately lead to cancer, and so, therefore, those treatments have to be used in appropriate doses and minimize wherever possible. Fortunately, that progress is being made and playing out now in the observation theres fewer second malignants in those children. Thank you. Doctor . I think related to that this area of Childhood Cancer survivorship is really, really important. We have this Great Success now in the ability to treat Childhood Cancers, even though we have a lot more to do, but what were now beginning to see is that there are what we call late effects of these treatments, sometimes due to the radiation or chemotherapy, sometimes psychosocial effects, fertility effects and such things. Research is required and would be helpful to address the current unmet needs of individuals who have undergone a successful treatment for Childhood Cancer to make it better going into the future. Great. Thank you so very much. Mr. Chairman, i yield back. I thank the gentlewoman. Well now recognize the gentleman from iowa for five minutes. Thank you, mr. Chairman, thank you to the panelists today for being here, and thank you for your emotional testimony, ms. Carr. I was standing in the doorway when you started to testify. I was the father of six children. I started thinking of every one of them, and i cant imagine what that was like, and im so proud that youre here today, and youve served the cause well. Im sure chad is very proud of his mom today as well. Thank you very much. Thank you so much for being here. Thank you. I have two questions. First of all, theres we look at the dollars spent by governments and by people who donate, contribute to research, Cancer Research, alzheimers research, whatever it may be, and im always concerned as a career businessman, what kind of collaboration is there between the Research Facilities and institutions . Are we doing enough to share the information . I mean, theres collectively, theres not enough, trust me, theres not enough Research Going on. Im a huge advocate for what you want, huge, but theres a fair amount going on, billions of dollars spent. I want to make sure were sharing that information between all of the researchers so maybe people involved in Research Facilities could could you give me your thoughts . Is there enough collaboration . If not, what can the federal government play a role in that . A depository of information . If i could begin. You raised an important point, actually. I think were facing that problem increasingly by the day because the amount of data generated today is greater and greater, you know, because of new technology. So the answer is, yes, there is considerable collaboration and interaction. The national Cancer Institute, Cancer Centers program is one example, a network of Cancer Centers throughout the country interacting and sharing information, but theres still a gap. In fact, the cancer moon shot blue room panel recommended the development of a National Infrastructure to facilitate the sharing of cancer data to store it more appropriately, to make access easier, to develop the kind of Software Tools necessary to analyze it. So as to breakdown any existing barriers that do currently exist to improve that situation, so theres examples of progress, but theres actually still a need, so i think the moon shot funding that you have funded will help us close that gap. And i could give you a few examples of whats already ongoing, so we now have through the ncis efforts the development of an open access resource for sharing cancer data via the common, and theyve even brought in outside groups such as foundation medicine, which is going to double the total number of parents information into this, and this is an open access, available to everyone, and, again, as dr. Jacks said, one of the Blue Ribbon Panel initiatives is to start to increase this and use the funding that was given to us from congress to now increase this ability. Also, the nci is developing genomic cloud pilots, and these pilots, again, expand data sets that increase imaging. Will include therapeutics, so integrating all the data sets so that we can really start to look at different cancers and better understand the whole tumor microenvironment, not just the genetics because theres other factors that contribute to it. In addition, what it allows us to do is look at rare cancers and try to use now cancers that have been put into the data base, increases the number, makes more hypothesis of why patients get the cancers and identify targets to develop drugs against. Well, all of us who are in the Cancer Research community are desperately working to improve outcomes for Cancer Patients, and we know that none of us as individuals or even within institutions hold all the knowledge thats necessary, so we are naturally inclined to collaborate and share information, and the national Cancer Institute is helping to support us in that effort, and an example that i would give thats related to our new knowledge and the Precision Medicine era is that we now are trying to test really exciting new therapies that are only relevant for a small subset of patients that have a particular genomic signature, particular dna signature, and so what a that means is that even for a disease like, you know, lung cancer that is a relatively common disease, the patients with a particular type of lung cancer that might be able to contribute and participate on a typical Clinical Trial might represent less than 10 , even 1 sometimes, of the total patients, so the only way were really going to understand whether that treatment is going to work is if we have a National Network in which we find these patients across the entire country and bring them together to participate in a Clinical Trial, and thats exactly the kind of infrastructure and support that is provided through federal funding by the national Cancer Institute. My time expired, but i would just like to say theres a lot of things im a republican a lot of things government shouldnt be involved in that were involved in, but one thing we should be involved in is researching these hideous disease, and cure act, and i stand against the president s proposed budget cuts. We have to spend a lot more than less in these areas. I thank you very much. And god bless you, mrs. Carr. I yield back my time. I thank the gentleman. I recognize ms. Watsoncoleman from new jersey. I guess we go to ms. Lawrence, michigan. Thank you, mr. Chairman. I want to acknowledge ms. Carr and express deep condolences for the loss of your son. Being from michigan, we watched the love, the support, and your advocacy, and just know that as a michigander, chads inspirational fight against cancer and your devotion to raising funds and awareness for dipg is remarkable. Thank you very much. Im so proud of you. Not unlike our political parties, Michigan State and the u of m fans dont often agree on everything, however, chads battle with cancer and your commitment to the continuing legacy has crossed across the fan lines, and united spartans and wolverines behind a common cause. Cancer research is something that impacts all of us, not just democrats or republicans. When the president released his proposed budget, i was devastated to see the decorian cuts made to nih. In your testimony, you discussed the major strides that nih researchers have made towards cancer such as leukemia. As you noted 40 years ago, leukemia had a 10 survival rate. Today, the survival rate is almost 90 . That rempresents just one of th many medical achievements that have been made as a result of funding to nih. Mrs. Carr as someone with firsthand knowledge, i want to give you the opportunity to speak to us as members of congress who have the ability to increase funding to nih, to discuss the merits of research being done by the funding. Thank you. We like to call it in the dipg community what we hope for is the home run strategy. Okay. You know, pediatric leukemia was considered a rare disease not too long ago. They focused. I think, you know, whether or not you consider dipg, its rare, theres no doubt, but brain tumors in general are not rare. Pediatric brain tumors are leading cause of cancer death in children, so focusing on pediatric brain tumors is something that makes sense. And for us, the strategy that were taking and as far as our funding goes, which, again, is a drop in the bucket, is that if we focus on the hardest tumor and really focus on it, and now with the momentum they they are able theres tissue now. They can study the samples. The ced and learning about the ability to pass the blood brain barrier with a catheter, part of the Clinical Trial that chad was a part of, if we really focused, i feel like, even raising the bar from 0 to 2 is movement in the right direction, and weve seen just at michigan alone, a lot of researchers are now because were willing to provide some funding, and theres a big room to increase success rates there, that they are looking, you know, young scientists are now interested in looking into this disease, and thats a really wonderful thing. You know, we talked about Clinical Trials being important. A lot of children with dipg, chad was one of the lucky ones who was able to participate in a Clinical Trial. A lot of the children, they dont meet the requirements, and they are not even able to participate, and as a parent, i tell you one thing, when you are basically deciding on the treatment plan for your doctor, because thats what this is. The doctors dont know what to tell you. Radiation is the only thing they know to tell you, which we know now, causes secondary problems. If they were to survive, they are not out of the woods. Theres other secondary cancers likely. Chad received 30 rounds of radiation, so i think the way were looking at it is focusing on the toughest, allowing that to open the flood gates for the other more treatable tumors, focusing on pediatric tumors because, again, children are not adults. I thank you again and commend your commitment to fighting, and, again, to say, i hope my colleagues are able to take your story as a reason for why we cannot allow these proposed cuts to nir to be implement the in the upcoming budget, and just on a personal note, everyones tried to have their life be a legacy or to leave a mark or to do something that will be reflected in history as a game changer. Your son did that. Thank you. And with your fight, his life has will mean so much more to so many people, so thank you so much. Thank you. We really believe that his five years, hes accomplished more than most people accomplish in their whole lives, thank you. Thank you so much. Thank you. We now recognize the gentleman from wisconsin for five minutes. Sure. Just a general question, what are the funding requirements for 21st century cures and nihs work in Cancer Research . What are the funding requirements . Yeah. Are you talking about the nature of the applications or that sort of thing . No. How much do you anticipate oh, i see. Yep. Well, we outlined several recommendations, each of which has a pretty broad scope. Frankly, the moneys that came through the 21st century cures act are a start to begin to accomplish those goals, but i dont think we could accomplish all of them where the money is allocated, but its a helpful start. Can you give me the dollar numbers that you think. This year is 300 million. I think it could have been easily two or three times that amount and spent the money wisely. Okay. Is there any way you can Prioritize Research better . That you can shave that down at all . I guess youre telling me no. Well, within that specific program, we work very, very hard in the Blue Ribbon Panel to create a series of prioritized recommendations, so i think what youve got there is our best effort in a particular form of Cancer Research, a more michiganfocused form of Cancer Research, so that is our set of priorities for that particular program. I should add that funding in our view does not in any way replace the standard appropriation to the nih or nci, which is much more substantial and provides funding across a wide range of areas of discovery research. I understand a lot of what 21st century cures is very necessary. Im about the cheapest guy up here. I voted for it, and because i do know how important, not just researchers for cancer, but other things as well as all the people affected by them. We just touched upon brain tumors in children. Do you know how many different institutions around the country are maybe doing work in this area . Mrs. Carr may know better. Im not really sure how many are focusing. I think i know at michigan, were trying to create a Brain Tumor Center so thats what we focus on. I dont think that exists currently. People do research all over, but as far as dipg, that brain tumor, theres several theres phenomenal researchers at stanford and sick kids in torontos. Right. I guess what im trying to get to is cancer in general, this question in general, we do a lot of research in wisconsin, a huge of amount of research on cancer in wisconsin, have been for many years. Asking in general, how many different universities around the country are doing Cancer Research, would you be able to answer that for me . I would say of the Research Units in america, all of them have programs that relate to cancer. The mccardle Cancer Center is one of the leading ones. That broad base is necessary for a lot of reasons. Theres a lot to be learned, drawing on resources across the country, and, two, you want to train individuals in your states to become Biomedical Researchers and scientists. That has to be done at a National Level as well. Right. I guess theres two competing interests here, in my mind. On the one hand its good you have a lot of institutions around the country doing Cancer Research because maybe theres something that people at mit think works that other people would never think would work, and, you know, if you had a topdown approach, theyd say dont go there, but youre able to go there and find good things, on the other hand, you have a concern if there are many places around the country, you may be duplicating efforts. You may not be coordinating with each other, and thats what im getting to. If there are, you tell me, 40, 50, 60 different places around the country doing Cancer Research, maybe there are, maybe theres just 20 or 80, thats why i asked you. Are we where do you think we are in that conflict or competing goals . You know, make sure everyones independent, can do something if its against conventional wisdom. On the other hand, you dont want four people doing the same thing or somebody doing research they found out in another place around the country is not effective five years ago. I think thats a really complex question. Its a really important one, but very complex to give you a straight answer. Theres a couple facts we do know. If you look around the country at the different Cancer Centers, theres different expertise at different Cancer Centers. How many places do brain cancer . Not that many. Its also geared towards what fundings available. So, currently the funding is tight at nih and nci. We used to get about 25 30 of grants funded. Now were down to 10 14 . That limits whats done. We believe based on review groups theres much greater amounts of Good Research than thats being funded, so i suspect the review process is one way to prevent duplication. It just scares me, like, when you say youre not sure how many places around the country are doing research on brain tumors in young kids. I thought people in your position would say, oh, yeah, in ucla, michigan, and here and these other places. Well, because there are there are places that do. Theres no brain tumor institute. Yeah. Thats really what weve been trying to focus on doing, and when you talk about dipg and its, again, a small rare tumor, the folks that come together to fund that effort, thats what we do as a collaborative. Theres so few of us and little money there that we dont the duplication of efforts, thats something that we dont want to, you know, see happen. It just concerns me that you dont know. Like i said, i think youd show up and at least one of you, but somebody said, were doing Cancer Research in these 80 institutions, and these are the specialties of the 80 institutions issue and just have it here. Well, its probably important for you to know whom youre speaking with. We represent particular institutions. I understand. We dont have this. If you asked the director of the national Cancer Institute, i think hed have an answer for you. Sometimes its difficult to know in the sense, for example, at mit last year, we announced a new initiative on pediatric brain cancers. My colleagues probably dont know that because it was a local effort. Right. But they should know it, right . The gentlemans time expired. Well now recognize the gentleman from california. Thank you, mr. Chairman. I want to really thank you and the Ranking Member and all of panelists. This is a personal issue for so many of us. Ill explain that a little bit, but i want to address a comment from one of my colleagues from the other side of the aisle about cost benefits as a democrat from the San Francisco bay area, i think cost benefits are important. Last hearing of this committee i believe, last week, talked about the department of defense, and audit by the Business Community that theres 125 million worth of waste in their budget, yet the administration is suggesting taking money away from nih to put in their budget, so before we do that, and that, by the way, that hearing was bipartisan as this one is in terms of applying our oversight making sure we get the best return for investment for taxpayers in the department of defense, but to jump to the conclusion we have to give them money at the expense of nih i find apaling, and on that level, just the cost benefit, a dollar, every dollar invested in nih returns almost 8. 50 in extra spending just on the genome project, is resulting nearly a trillion dollars of Economic Growth. All of these things i learned because when i was elected to congress three years ago, i was, unfortunately, joined the club. Unfortunately, what i have is chronic leukemia, and during the process, theres ups and downs to mortality, but as has been testified earlier, 20 years ago, it was a 10 survival rating, and now theres a 90 survival rating, so having been involved in this and absorbed myself in the history of having now talked to doctors and read books and gone to nih, spent muppet. Times at the university of california in San Francisco, which we proudly in the bay area is the second largest recipient of nih funding, hoping to surpass Johns Hopkins at tom assignment, and spending time in stanford at the local hospitals, its really remarkable, and a lot of this goes to the survivors, the Family Members, who have found their voice and the voice that you have expressed today, i mean, your son, clearly, is here in our presence today, and you know that, but its not a trite thing to say that your experience, so in my case, reading back, having grown up in boston, having looked at the jimmy fund advertisement, fenway park as a young person, and now never knowing what that was about, and now knowing that that was both an initiative by people who cared to come in front of congress and convince congress and president nixon to sign a legislation that helped start all of this. The synergy i but then understanding that im cautioned by people in my own district who dont get carried away, theres no cure, fringe, in my instance, people at nih, wonderful researchers. Go out there and its hard to believe the value we get, and i know youll speak, since he represents that area, these young name leless people who sa my life and other lives, and see value added around the world, they showed me a map of all the affiliated relationships they have around the world. Its like a military map. The moral high ground that we get as americans by doing that, and speaking to the chief researcher out there and how many times hes been to china because chinas trying desperately to replicate what we have here, its just staggering to me we consider its a real statement of our values to how we invest. I think one of the most amazing statistics is researchrelated gains an average Life Expectancy from the period from 1970 to 2000 have app economic value in the United States of 95 trillion, and maybe not in this instance, but im a living example of that, and so my oncologist told me 15 years ago, someone diagnosed with what i have, sprinkled water on me, and told me to enjoy whats left of my life. But now, as i said, i hopefully have an 85 survival rating, but a lot of that, back to pediatric research, we know farber was because of people, you read stories of young people dying of leukemia and what i have was because the moral obligation for americans was to invest in that. So just briefly in conclusion, one of the things ive tried to work on, and i am started a survivors caucus, which i hope as many members join as possible, and its very broadly defined, is talking to doctors, and i hope they come to speak to the group, and i hope youll come as well, one of the things has been communication. We do a bad job of communicating the amazing return on investment, and then the communication from the medical industry to the people who have been impacted by this, so, mrs. Carr, youre an example of that voice. How can we do better . I think listening is part of it too. I think hearing what families have to say, hearing about these experiences, and really listening. Thinking about how can i help make that change . How can i help do something . You guys are in the position to actually make that happen. I mean, we can talk to you all we want, but people in these rooms are the ones that are the ones that can make things happen. So, i mean, for me, thats what i would say. You guys hold all the power. We cant do that without your voice, so thank you, mr. Chairman. Thank you. Well now recognize the gentleman from maryland for five minutes. Mr. Chairman, thank you very much. I am, indeed, the congressman from nih, from the 8th Congressional District in maryland and the nih is very much in the heart of my district, and being the representative from this area, i know intimately and keep close track of all of the research thats going on into leukemia, lung cancer, colin cancer, cystic fibrosis, asthma, bulimia, drug abuse, alcohol abuse, and, its extraordinary the range of scientific inquiries and endeavors taking place at the nih, but i also want to speak as a survivor. I was not aware of the survivors caucus, but i want to join you in that. I had colin cancer back this 2010. I was then teaching at American University law school, and i was a state senator. I read an essay by susan in which she said something that was very poignant, which is that everybodys born with two passports, a passport to the land of the living and the healthy and a pass port to the land of the sick. All of us have to use both passports at some point in our lives. Whats striking to me, though, is those people who have gone through it or had an immediate Family Member go through it, look at Something Like a proposed 6 billion cut in Nih Medical Research budgets, and are horrified by it. I mean, just astounded. There are people not directly touched go about their business, and so my question for you, ms. Carr, and thank you for your wonderful testimony, is basically, how do we maintain the consciousness of both passports and the coexistence of these two lands . I remember when my chemo ended, the very last one, feeling as if i had suddenly returned to a place from a very long harrowing trip i had been on, but how do we make that consciousness permeate the country . I think its hard. I mean, i can tell you i didnt know a lot of these things before i had to know them. I didnt know that pediatrics only received 4 of funding. I didnt know i didnt know what dipg was. So i think having more people who have been there trying to resinate their experience to those, and, hopefully people hear, and they feel sad, and they feel sorry, but hopefully they really think about that impact, and i think having these three here talking about it, theres benefits to research beyond just saving people right now. I mean, these are huge financial implications, and theres so much there, and i dont want i tell people, you dont get it until you get it. Unfortunately, though, you dont want people to join that cluck. Right. I think as many advocates we can build to help share our storiment again, theres only so many of us, thank goodness that lost children, and only so many of those who actually want to share their story. Creating more advocates amongst people in this room who can then do that and help us in those efforts. Yeah. Let me ask a question of dr. Beckerly. One of our Great American an ounce of prevention is worth a pound in cure. I gave a speech yesterday about alzheimers disease and did research, and i found that we spend 250 times more treating people with alzheimers disease through medicaid and medicare alone than we do on researching to get a cure for alzheimers, which is now beginning to spiral out of control. I mean, the jumps in the number of people suffering from alzheimers and die from alzheimers are extraordinary. Talk, if you would, about how we get people focused on prevention rather than just spending a lot of money after the fact, trying to mop up. Yeah. I think this is a really important point, and i think the time is right to begin to really focus in this area. Clearly, we need to continue our investment in the development of new treatments for people who are already affected by cancer. We now know that probably about 50 of all cancers could be prevented. And this is by smoking in some cases, and also understanding inherited risk and screening and Early Detection that can improve cancer outcomes or prevent the disease. I think youre right. I think we now have enough scientific knowledge that it is time to really put some dedicated focus on Cancer Prevention. One of the areas of the Blue Ribbon Panel was a focus on what we call precision prevention, and capitalizing on our deep knowledge about cancers that run in families. We know that there are at least 50 different types of inherited cancer, and if we could identify everyone in the country that has that inherited predisposition, screen those folks, we might be able to prevent them from developing incurable diseases. In the case of lynch syndrome that we heard in the case of stefanie, we know theres a Million People in the United States that have lynch syndrome, which causes a predisposition to rectal cancer, uterine cancer, and a number of other cancers. Only about 5 of the people who have that syndrome know they have it. What that means for them is they are doing the right thing going and getting colonoscopy at 50, but because they have lynch syndrome, they develop the cancer before they start screening. If we know who is at risk, we can prevent those cancers from developing in the first place. Save lives, save money. Thank you. I yield back, mr. Chairman. Thank you. Well now recognize ms. Watso watsoncoleman of new jersey. Thank you, and thank you, mr. Chairman, for calling this hearing. Cancers a very, very personal thing with me. In 1983, my mother was diagnosed with lung cancer, and the doctor told us that it did not respond to chemotherapy nor was it operateble. We actually were fortunate to get her into a protocol in Johns Hopkins. We lost my mother to that cancer within a six months period of time. The doctor said it would happen, but nonetheless we had hope during that period of time because we knew we were actively engaged in cutting edge antibodies, immune therapy, that kind of thing. I lost my father to reno cell carcinoma. I was a niece now thats living with thyroid cancer. I lost cousins to other lung cancers and leukemia. Theres no sort of group of us that upset me more than cancer, and i think that while were talking about how to get out the word, how important this is, i dont think that theres a family in this country whos not pe personally touched by cancer. Whether its pediatric cancer, and mrs. Carr, god bless you for using your tragedy to save lives. You are such a courageous woman, but just all the different cancers, so i think this budget is really no one thought through this issue. I dont think anyones going to support even in Congress Taking money away from the National Institutes of health. So i but its more than cancer. I mean, its diabetics. Im diabetic. Id like to not be on the medication im on. Theres things happening that koul could impact me as an adult. Theres so many things that affect me as an africanamerican differently, or as a person who has even more than just african blood, but i got a bunch of stuff happening here that i might need some very specific scientific understanding, evaluation, to get at a person like me, and i represent a good number of people in this country, so i just want you to know that i will fight as hard as i can to make sure we dont lose money, that we, in fact, look at whats realistic in terms of our needs. There are no greater set of diseases to conquer than cancer. So i thank you, mr. Chairman, for calling this hearing and giving me an opportunity to speak. Thank you. Thank you. Were at the conclusion here. I want to first of all thank dr. Jacks, dr. Jaffee, dr. Beckerle, mrs. Carr, and cancer affects lots and lots of people, those who work hard, and i hope in some small way this Committee Hearing does some of that, but i hope you carry back to them how much we appreciate the work that they do and how important it is, and sometimes it takes years, weeks, decades to find that breakthrough that may have come from something we didnt think it was going to come from. If it was easy, im sure you would have already solved it. You are tackling the most difficult things that face our nation, and we do have a duty and an obligation to not only hear the stories and listen and also to fund it. We are in a position to make a difference, and thats why i called this hearing because i think what the president s Budget Proposal was is an embarrassment, and its not something i would support, certainly, that aspect of it, and i do hope on both sides of the aisle you see us come together and have a very different outcome than what was proposed out of the white house. Nevertheless, there are things that we need to continue to learn. It is the committees intention to have another hearing. It will probably take a few months to put together. We want to hear from very specific scientists, talk about some of the most promising efforts. I think if members were also here, not only the stories of the families that are affected by this, but also very specific cases. Ive heard Amazing Stories every once in a while, turn on everything from 60 minutes, and theres a big breakthrough on the verge, maybe happening, wed also like to hear those stories. That would help members get a better grip. It is a big issue, and youve helped illuminate that, but help us think through, and i think we can also highlight the specific methods, specific scientists, and allow them to tell their stories and answer questions. I think youll get a lot more people who will then want to fund that type of research because it is so promising. If you can help us identify that. To stefanie, thank you for being here. I appreciate it. Thats very glad you came, and we wish you, obviously, nothing but the best, and to c. J. And tommy, pretty boring, huh . Yeah. I would agree with you. But very important stuff. I think later on in life, youll recognize and say, wow, my mom did that . Its not something she probably ever dreamed of, nobodiments to come testify before congress, believe me. But to your mom and dad, thanks for their strength in sharing your story, and it is impactful. We do appreciate it. Obviously, chad tough, we, again, wish you never had to go through that, but you have exemplified, what im guessing i dont know how to quantity my it, thousands, hundreds of thousands, millions, i dont know how to quantify it, of people and families who have gone through some things too, and would probably you go to places you dont want to go. You dont want to be a part of the club, as you said, but they step up to the line, they come, they do it, they do the hard things, and so we thank you for doing that, and we appreciate you doing that, and wish your beautiful family, thank you for sharing that. God bless you. Committee stands adjourned. Thank you. Live tuesday, u. S. Strategic command testifies for the Senate Armed Services committee to discuss russian and Chinese Nuclear threat and Defense Budget issues. Thats live at 9 30 a. M. Eastern here on cspan3. The nomination of neil gorsuch continues this week in the senate. They are expected to debate the nomination tuesday with a final confirmation vote friday. Watch the senate live on cspan2. Cspan, where history unfolds daily. In 1979, cspan was created as a Public Service by americas Cable Television companies and is brought to you today by your cable or satellite provider. The secretary of health and human services, tom price, testified on President Trumps fiscal year 2018 Budget Proposal for the agency, which cuts hhs funding by 15 billion including a 1. 2 billion cut to the National Institutes of health. The House Appropriations Committee Hearing ran two hours. Were looking forward to hearing the testimony. Mr. Secretary, your responsibilities are many. Your departments responsible for ensuring proper payments of medicare and medicaid dollars for overseeing Biomedical Research that saves millions of lives, helping families break the cycle of poverty and breaking the cycle of pandemic ve events. The budget cuts are expansion in your agency. Theres always fat to be trimmed and priorities to be reordered, but ill ask questions this morning about whether the budget leaves america prepared to respond to a pandemic, a new disease like zika or a bioterrorism event. Theres questions about how you fulfill your mission of enhancing the health and well being of americans at these levels of funding and ask how you work to solve some of the challenges in the agency including those related to the Indian Health service, and, ultimately, this subcommittee needs to know in detail what cuts you propose and what missions you are downgrading or eliminating. I knowson details are forthcoming in the weeks ahead, but we look forward to hearing what you are able to share with us today, and we recognize limitations in that regard. As a reminder, witnesses abide by the five minute rule so everybody has a chance to get their questions asked and answered, and now im off script for a minute to begin, also, just welcoming you here as a former colleague of 12 years, and not only had the privilege of serving with you, and issue obviously, in congress, but in the same conference and your committee that you chaired, and i couldnt have been more pleased with your selection by the president. I think you are not only a very good person and extraordinary well qualified for the job, i have no doubt youll do a brilliant job for the American People during your tenure in health and human services, and having worked with you on the budget committee, i know you know how to balance a budget and bring it to budget and make tough decisions that have to be made for the country going forward,d,