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