Research. Committee on oversight and government reform will come to order. Without obsession t chair is authorized to declare a recess at anytime. We have a very important hearing this morning. A federally funded Cancer Research in innovation. This one some hearings are more important than others. I wish it were the type of hearing that was on the headline at the top of the fold of every newspaper that we have. But it is cancer is something that statistically is going to touch every family in some way, shape, or form. And unfortunately ive had that personal experience myself and lost my mom to breast cancer. She fought it for some tenplus years and 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. Hed be just fine. He felt fine. He didnt need a checkup. Unfortunately he got colon cancer and doctors told me if he had any checkup in the eight or ten years preceding that hed probably with be us today. And i 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, there are a lot of blessings that came with that, a lot of things that allowed me to get closer to my parents and have an amazing experience with my parents. Without getting too personal about that, i think the importance here and the discussion were going to have, its amazing to me. Cancer will take the life of roughly 1,500 people a day. 1,500 people a day. So believe me, im a strong advocate for the United States military. I champion more money for the United States military. I want the men and women to have the most resource to protect and defend this nation. But lets put in perspective that 1,500 people a day are going to die from cancer. And so if you look at the trillions of dollars our government will spend, why is fighting cancer not a much, much higher priority . It is for me. I think it is for a lot of people. The i hated the president s budget. Ive got a lot of respect for Mick Mulvaney and the president himself but i thought the budget is pa theytic. We should be spendsiing billion of dollars on this. How much does the money make the difference . What could we do if we did have more resources . And with the resource we are throwing at it is a handful of billions, but compared to the trillion dollars were going to spend a few billions. That makes no sense. What is happening with the funding that is going on . And what are some of the exciting developments . I mean, we everybody will see a story in the newspaper and everybody gets some hope. I can certainly tell that there has been huge progress since, for instance, my mom was fighting this in the 1980s. My wife, jilly, she works for a plast Plastic Surgeon in utah. She got a degree in psychology d are fighting breast cancer. Its very satisfying and im very proud of her of the great work she does there. But sure enough day in and day out, young women are coming in and fighting this horrific disease. They didnt think they would get it, and now theyre fighting it. And i think there is a lot of reason to cheer and to be excited and give hope even though theyre having to go through one of if not the most difficult and horrific things in their lives. We have cancers of various types. We have im glad we have mrs. Carr here, who is going to tell a personal story. And i know its hard for a family to talk about their own experience, but i think its good to hear from the family. But good to hear about some of the most exciting developments from some of the most prestigious institutions across this country, and we could fill weeks on end of hearings talking about peoples stories. So were going to have a host of hearings and were going to watch all of the news stations and theyre going to talk about this, that, and the other. And the thing thats going to affect real liechves more than anything else would be this topic. Would this issue get a headline it would deserve. And i wish there was more issue imperative. And i think if we went house by house, voter by voter to have them ranch where should we spend money, where should we prioritize money . This would be it. Im a really conservative person. But when you have 1,500 people a day dying, this is not just, you know, hey, weve got to push this down to a local budget. This should be a national imperative that drives us all to fund it properly and to truly, truly make a difference. And thats why i wanted to call the hearing today. And i know i think we all feel that way. Ive gone over my time. Ill yield my time. And i recognize mr. Cummings. Thank you very much, mr. Chairman for calling this very important hearing today. And it is very important. I thank all of our witnesses for being here to share your insight with us, especially you, ms. Carr, and your family. Im so glad youre here with your family to share the story of your sons battle and bravery in his battle against cancer. Today the danger we face in fighting cancer and other deadly diseases in this country is President Trumps budget. Earlier this month, President Trump proposed a budget that would decimate the budget of the National Institutes of health. It would slash funding next year by nearly 6 billion or about a fifth of nihs budget. Is that going to be enough for us to complain, were got to turn that around. This proposal gives little explanation for targeting nhi for this massive cut, wick only be described as heartless. After he issued the budget, the White House PressSecretary Sean Spicer tried to plain that these cuts were not really cuts at all. He was asked about the nih budget, and he organized that only in washington does less spending 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 its a cut, and i think that the reality is that in a lot of these there is efficiencies, duplicity, ways to spend money better, and i think if youre wasting a lot of money, thats not a true dollar spent, end of quote. I wish he could talk to a few other people that i know who years ago went to nih with what was described as a fatal disease, and in a matter of a few years because a research, because a very smart and imaginative people, people who dared to dream bigger dreams, who had bigger hopes, they were able to turn mrs. Carr, a fatal disease type of cancer, into a chronic. And i know of people like that. Thats what mr. Spicer, he may not get that. And only 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 all over the country, doing significant research. So i know, miss carr, that in your written testimony for today you said President Trumps budget cut, and i quote, hits me right in the gut. Well, youre not alone. There is a bipartisan outrage and i think you heard the chairman say this, over this proposal to slash the nih funding. On march 17 republican congressman tom cole said this, and i quote, i dont favor cutting nih or centers for disease control. Youre much more likely to die in a pan did emic than a terror attack. Mrs. Carr in 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. We need to make sure that its directed to cases like your sons, which have little or no federal funding devoted to them today. Mr. Spicer did not make this quote, less funding is not a cut, 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 reason, Cancer Research is decimated, rather than trimming the bloated defense budget. I believe that there are few investments more significant than the investments we make in Biomedical Research. The work of nih is trance formational. With the power to turn ideas into cures. The idea that there is a possibility that there is a cure over here, and we just cannot reach it, were reaching forward, but we cannot reach it. Were trying to get it, but we cannot reach it. And weit, but we cannot reach it. Were trying to get it, but we cannot reach it. And we know if we could just get it, i could save lives. So this research is also an incredible economic engine generatie ining activity in eve state in the country. Nih has High Quality Research and high quality jobs to help us grow our science and Technology Workforce for and it helps us not only in this country, but throughout the world because other people will benefit from what we do. More importantly of all this research generates hope. It generates hope. I hear nearly every day from constituents who come to my office. They share their stories. Sometimes they speak for themselves. And sometimes they speak for those who are no longer with us. One thing that binds all of them together is our hope for tomorrow. I share their hope. I believe the promise that Biomedical Research holds, but we are at a crossroads. Congress must reject the devastating cuts nih proposed by President Trump. I have the honor of representing the most esteemed center in the country if not the world, the university of maryland and Johns Hopkins. But i consider a mag any magnitude of these reductions, i think of all this loss, the breakthroughs that could go unfunded and the researchers who could take their talents overseas. I think of other families like the carrs who have lost their children to diseases. Families like theirs have turned their pain into their passion to do their purpose, raising money and awareness in the hope of saving someone else the grief they experience. And so i pause to thank you for taking your pain and turning it into your passion to do your purpose, but they cannot do it alone. Cant do it alone. They need a strong partner. Nows the time to recommit ourselves to leadership with investments that reflect our priorities of innovation and health promotion. Our budget cannot abandon those values. I look forward to hearing more about the innovative work, and i call on all of my colleagues to continue supporting these and other programs with strong investments for this is on our watch. What we do today will not only affect the people on earth this moment, but will likely affect generations yet unborn. With that, i yield back. I thank the gentleman. The chair notes the presence of our colleague representative debbie dingell, whose constituent ms. Tammi carr is testifying before the committee today. We appreciate her joining us today. We ask unanimous consent that representative dingell be allowed to fully participate in todays hearing. Without objection, so ordered. Ill leave the record open for five legislative days for any representatives who want to submit written statements, but it is now time to introduce our panel of witnesses. Were pleased to welcome tammi carr. She is the mother of chad who battled a rare pediatric brain cancer, and were thrilled that shes here and that her familys here, but i would actually like to yield to ms. Dingell, congresswoman dingell, to help introduce you, mrs. Carr. Thank you, mr. Chairman, and thank you for your courtesy in allowing me to be here today. The carr family has been friends of the dingell family for a long time, and thank you for allowing tammi and not just tammi, but she is accompanied by jason and c. J. And tommy. I think it is the courage of all of them that has inspired us in our community. On september 23rd, 2014, they got a diagnosis that none of us wants to hear, that their son had cancer. After shell tell you the detailed story more. After his diagnosis, our entire community, not only in ann arbor, but in michigan and the entire country rallied behind chad and the entire family. We were all inspired e ed by c determination during his battle. Thats how the phrase got coined chad tough. In february 2014, chad lost his batt battle, but having gained an angel. What i hope that all of us see and heard following tammis and jas jasons example is theyre trying to find a bright light on a cloudy day and i know chad is watching from heaven as she tells her story today. Thank you for allowing her to be here. Thank you. She also represents the Chad Tough Foundation and again proactively we cant thank you enough for being here, sharing your story, but also talking about the foundation and what youd like to see done. So appreciate you being here. Were also thrilled to have dr. Mary beckerle, who is the chief executive officer and director of the huntsman medical school at the university of utah medical school. Its actually kind of how i came together with the huntsman family was the fact that they had poured literally hundreds of millions of dollars in to fight cancer. And as somebody whose family members have passed away from cancer, to have the Huntsman Cancer Institute in our own backyard there in the intermountain west, were very thankful and dr. Beckerle is dedicating her life and her talents to this very worthy cause. Were glad to have you share more about what the Huntsman Cancer Institute is doing. It is a remarkable institution. Were thrilled that youre here as well. We also have dr. Elizabeth jaffee who is the director of Johns Hopkins university. Thank you very much. Im truly honored to have dr. Jaffee here today. She is at Johns Hopkins, and Johns Hopkins, as you well know, is probably one of the greatest hospitals in the world and just so happens to be smack dab in the middle of my district. They have done phenomenal work, and it is an honor to have her cochairing the Blue Ribbon Panel in serving the people in baltimore, but not only baltimore, the world. Im very pleased to have you and thank you for being with us. Thank you. We also have dr. Tyler jacks who is the director of the Koch Institute for integrative Cancer Research at the Massachusetts Institute of technology. Were thrilled, dr. Jacks, youre here in joining us as well. Pursuant to committee rules, witnesses are to be sworn before they testify, so if youll please all rise and raise your right hands. Do you solemnly swear and affirm that youll tell the truth, the whole truth, and nothing but the truth so help you god . Thank you. Let the record reflect all witnesses answered in the affirmative. We normally ask that you keep your verbal comments to five minutes, but well give you great latitude. If youre on a roll, keep going. But your entire written record written statement will be part of the record. If theres any attachments or Something Else you want to share afterwards that too will be in the record. Mrs. Carr, well start with you. Youre now recognized. By the way, you have to straighten that microphone, pull it up close and personal, and make sure the talk button is on. Mrs. Carr, youre recognized. Thank you, chairman chaffetz and Ranking Member cummings and members of the committee. My name is tammi carr. Im here today to share about my son chad carr and his rare battle of a form of pediatric cancer. It was a day that forever changed my perspective on life and what is truly important. That day we took our 3yearold son chad for an mri after a fall, an mri we had to fight for and an mri we were told was simply to confirm a possible concussi concussion. They told my son jason and me the mri would take a couple of hours and not to be worried. Three and a half hours later, we were worried. When we saw the look in the anesthesiologi anesthesiologists eyes, we knew we were in trouble. She said something and that something was cancer. As a parent, whats your first reaction when you hear your child as cancer . I can tell you at least hours was not to panic. It was to fight. Our questions were how do we fix this, whats the first step . To this day, the answer that we received completely blows my mind. As our adrenaline was pumping and we were ready for battle, we were told, im sorry your son has d. I. P. Theres really no treatment plan. There is a zero percent survival rate, and he has zero months to live. Neil armstrongs daughter was diagnosed with the same disease over 50 years ago. We live in the most technologically advanced country in the world. How is it possible that our son was going to die and there was absolutely nothing we could do . I decided we were not going to take that for an answer. 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 change . We also learned that second only to accidents cancer is killing more children than anything else and what kind of cancer . Brain cancer. Literally believe its becoming an epidemic, so why not focus on the hardest brain tumor to treat, the d. I. P. Tumor that slowly took chads ability to walk, talk, swallow, and ultimately live . Surely if you make inroads with that most difficult type of cancer, wouldnt that open the floodgates 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 Tough Foundation to honor the toughest kid we knew and to become part of that change. We are proud to work alongside other foundations and families who are similarly drirven. Chad spent every possible moment with his brother c. J. And tommy who are here today and whom 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 chad to think outside of the box and we thought as hard as we could. We refused to give up. Unfortunately after fighting for 14 months, our son chad took his final breath on september 23rd, 2015. That is a moment i relive over and over in my head and something i think about every day and ill probably think about for the rest of my life. Its a moment no parent should ever have to go t