tv Cancer Scientists Call for Increased Research Funding CSPAN March 31, 2017 5:36pm-8:04pm EDT
documentary ordeal of woodrow wilson. >> these delegates were determined not to let idealism stand in their way and for their own purposes and desires. for our complete american history schedule go to c-span.org. president trump's calls for large cuts to research programs. a mother whose young son died of a brain tumor testified about research in tumors and clinical trials to minorities and how the cuts would impact future
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 i've had that personal experience myself and lost my mom to breast cancer. she fought it for some ten-plus
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. he'd be just fine. he felt fine. he didn't 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 he'd 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 we're going to have, it's amazing to me.
cancer will take the life of roughly 1,500 people a day. 1,500 people a day. so believe me, i'm 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 let's 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. i've 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 -- we're 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. it's very satisfying and i'm 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 didn't think they would get it, and now they're fighting it. and i think there is a lot of reason to cheer and to be excited and give hope even though they're 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 -- i'm glad we have mrs. carr here, who is going to tell a personal story. and i know it's hard for a family to talk about their own
experience, but i think it's 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 people's stories. so we're going to have a host of hearings and we're going to watch all of the news stations and they're going to talk about this, that, and the other. and the thing that's 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. i'm a really conservative person. but when you have 1,500 people a day dying, this is not just, you know, hey, we've 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 that's why i wanted to call the hearing today. and i know -- i think we all feel that way. i've gone over my time. i'll 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.
i'm so glad you're here with your family to share the story of your son's 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 trump's 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 nih's budget. is that going to be enough for us to complain, we're 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 press secretary 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 it's 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 you're wasting a lot of money, that's 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.
that's what mr. spicer, he may not get that. and only when you're going through it, your family is going through it, maybe that's 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 trump's budget cut, and i quote, "hits me right in the gut." well, you're 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 don't favor cutting nih or centers for disease control. you're 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 it's directed to cases like your son's, 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, we're reaching forward, but we cannot reach it. we're trying to get it, but we cannot reach it. and weit, but we cannot reach it. we're 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 their's 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. can't do it alone. they need a strong partner. now's 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 today's hearing. without objection, so ordered.
i'll 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. we're pleased to welcome tammi carr. she is the mother of chad who battled a rare pediatric brain cancer, and we're thrilled that she's here and that her family's 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 -- she'll 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. that's 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 tammi's and jas jason's example is they're 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 can't thank you enough for being here, sharing your story, but also talking about the foundation and what you'd like to see done. so appreciate you being here. we're 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. it's 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, we're very thankful and dr. beckerle is dedicating her life and her talents to this very worthy cause. we're glad to have you share more about what the huntsman cancer institute is doing. it is a remarkable institution. we're thrilled that you're here as well. we also have dr. elizabeth jaffee who is the director of johns hopkins university. >> thank you very much. i'm 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. i'm 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. we're thrilled, dr. jacks, you're here in joining us as well. pursuant to committee rules, witnesses are to be sworn before they testify, so if you'll please all rise and raise your right hands. do you solemnly swear and affirm that you'll 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 we'll give you great latitude. if you're on a roll, keep going. but your entire written record -- written statement will be part of the record. if there's any attachments or something else you want to share afterwards that too will be in the record. mrs. carr, we'll start with you. you're 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, you're recognized. >> thank you, chairman chaffetz and ranking member cummings and members of the committee. my name is tammi carr. i'm 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 3-year-old 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 anesthesiologist's eyes, we knew we were in trouble. she said something and that something was cancer. as a parent, what's 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, what's the first step?
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 it's becoming an epidemic, so why not focus on the hardest brain tumor to treat, the d.i.p. tumor that
slowly took chad's ability to walk, talk, swallow, and ultimately live? surely if you make inroads with that most difficult type of cancer, wouldn't that open the floodgates up to treat the more treatable tumors? that made sense to us, so while we were fighting for our child's 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 i'll probably think about for the rest of my life. it's a moment no parent should ever have to go through. it's a moment i would not wish on my worst enemy, but we're doing our best to survive and we live each day trying to honor chad and all the d.i.p. angels. the chad tough foundation raised $1.5 million in 2015 for d.i.p. 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, grandparent, or sibling would ever want to know should not be alone in this fight. and believe me, this can become a reality for anyone. we never thought this would happen to us, and no one knows who it will be today and no one knows who it will be tomorrow. when i hear about those potential cuts to the nih, as you say, it does. it hits me right in the gut. there have been such great strides made around pediatric cancer such as leukemia because bright minds were asked to focus on treatments and they were given the resources necessary to do so. pediatric leukemia, which was once considered a rare disease and 40 years ago had a 10% survival rate, now has a survival rate of nearly 90%.
chemotherapy was developed as a as a result of pediatric leukemia research. to think that might be getting even smaller -- the proposed 18% cut to the nih budget would be devastating to all pediatric diseases, but especially to rare diseases such as d.i.p.g. at a time when there's been momentum and discoveries made about the genetic makeup of these d.i.p.g. tumors and the last five years we have seen explosive advances in genomic data and other tools for cancer researchers to open up the battle against cancer and pediatric cancers. without federal funding though, we're very quickly going to lose ground in that battle. federal -- no amount of family fundraising like our's is going to replace that.
these scientists are already choosing to take pay cuts to do research instead of seeking more lucrative private practice or industry jobs. foundation fundraising may help to increase the pace of that research, but nih establishes the baseline to make sure the research 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 diseases like d.i.p.g. i ask that when you consider the proposed cuts to the nih budgets you think about my son chad and all the other children who were not given the fighting chance and are not even given hope. you picture his face and you think about what might have been. our family and others like our's will continue to work tirelessly in this fight, but we cannot do it alone and we shouldn't have to. without additional funding for research, children facing
diseases such as d.i.p.g. will continue to have no hope for long-term survival. that's not a future we can accept for these 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 committee's questions. >> thank you. really do appreciate it. dr. beckerle, you're now 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. we're all with you 100%. thank you, chairman chaffetz, ranking member cummings, and members for your support for our sacred mission to defeat cancer for all of humanity. my name is mary beckerle.
i survive as ceo of the huntsman cancer institute. it is one of 69 national cancer institute cancer centers. our national network of cancer centers focus on improving cancer treatment for people around the united states and around the globe and for children like chad. research research is our best defense against cancer. everything we know about treatment today is based on research, including basic b discovery science. it is an incredibly exciting time in cancer research, and i'm here to tell you that our national investment over the last several decades is making an impact. the cancer death rate has declined by more than 23% since 1991. in 1971 1 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. rather it's a collection of more than 200 different diseases. 1 in 2 men, 1 in 3 women will receive a cancer diagnosis in their lifetime's. 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, huntsman cancer institute, is making a difference for cancer patients and their families. at huntsman cancer institute a major focus is on cancer genetics. huntsman cancer institute is a steward of the largest genetic database of its kind in the world with over 25 million records. this population database links family trees with clinical records so we can detect cancer that runs in families. our hci scientists have worked with patients and their families to discover the genes responsible for many times of inherited cancer. so what does this mean for cancer patients today? let me share a story about greg johnson from utah, an artist, husband, father of two.
members of greg's family have a disease that we call f.a.p. certain family members have inherited a gene mutation that causes a colon cancer at a very young age. essentially if you have this mutation, you have 100% risk of developing colon cancer in your lifetime. sophisticated genetic testing now enables us to identify which individuals in greg's family are at high risk for colon cancer so they can get proper screening and care. back in utah today, thanks to cancer research, greg is outliving his family history. greg's mother and grandmother both died of colon cancer when they were their 40s, way too young. greg is approaching 60 years of age thanks to federally funded research and precision preventi prevention. cancer genetics is also very important for children, and we are working on this actively at
huntsman cancer institute. federally funding for childhood cancer has led to dramatic improvements in pediatric cancer survival. a 43% increase over the last several decades as we heard from mrs. carr. just recently an inherited form of childhood brain cancer was recognized, and we've been able to repurpose a drug that was developed for lung cancer to cure this disease in childhood cancer. but as highlighted by the cancer moonshot blue ribbon panel, cancer still remains the leading cause of death in children, so we have so much more to do. finally, even in our great nation, not everyone has equivalent access to the remarkable advances in cancer prevention and care. 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 scarcely populated. many of your states also have rural and frontier residents that live far from health care centers and relatively poor cancer outcomes. researchers have developed a new approach to delivered genetic counseling by telephone to reach people who are living in rural aust and frontier areas. we have developed a unique tool for remote symptom management to support patients and their families while they're undergoing treatment. great progress in cancer prevention and treatment is happening at the 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 consistent and sustained investment in cancer research. i, like mrs. carr and others, am
deeply concerned that the proposal to cut nih funding by 18% in fiscal year 18 will have a devastating impact on our progress toward defeating 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. jaffee, you're now recognized for five minutes. >> thank you. chairman chaffetz and ranking member cummings, thank you for your leadership. scientists in the united states lead the world in cancer research innovation and success and will hopefully prevent
cancer in our future generations. today, i would like to focus on four key areas that underscore the importance of supporting cancer research. the benefits of federal funding, our current challenges, creating collaborations, and very importantly training the next generation of scientists. we are in the midst of a technological revolution, amassing huge amounts of information and using it to transform how we approach cancer treatment and prevention. to bolster this progress, the beau biden cancer cure act is needed in addition to the ongoing nih and nci 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 future discoveries and innovation. in just the last six years 20 drugs that use the body's own
immune system to kill cancer have been approved by the fda for a variety of different cancers. without the decades of investment and funding on the immune system, patients with these cancers would have died from their disease in less than a year. instead they're living years with good quality of life. the rapid pace of scientific discovery and how the immune system sees cancer has opened the door to new areas of research that would not been possible five years ago. we're now investing in laboratory research and cancer screening studies to develop vaccines that can recognize the earliest changes in the normal cell and eradicate these normal cells that have small changes before they cause cancer. this is what we call prevention. such prevention 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 cancers to conduct research trials on these diseases. one of them helped to lead the approval of a new immunotherapy drug for a rare cancer. another challenge is the need to identify barriers and provide solutions to people who typically lack access to the best cancer treatments. after studying this problem of clinical trials access among our own baltimore population, we narrowed the gap between minorities and non-minorities who participate in clinical trials by 60% since 2001. maryland was once a state with the second highest cancer death rate. those deaths have plummeted in our state and we're now the 31st. this significant reduction is due in large part to government-funded screening
programs. collaborations between the nci, the fda, cancer foundations, advocacy groups, biotechnology, and pharmaceutical companies are critical to ensure progress in increasing cancer morbidity and mortality. this investment has led to a new area of medicine, as you heard about, precision medicine, which utilized the genetics of a patient's specific cancer to determine the best treatment. the nci has since begun a national clinical trial which pairs patients with options based on their tumor's genetics. this is the only trial of its kind in the nation. these highlight the incredible advances and innovations taking place in cancer research, but we can't end this progress with our current generation of
scientists. unfortunately, due to the threatened reduction in the nci and nhi budget without significant increases in the past decade has created a crisis where young people are less likely to pursue science as a career. people's lives depend on this research. i brought with me today stephanie. she's a colon cancer patient. at 23, stephanie's cancer had spread and no treatment options were available for her. she found johns hopkins had a clinical trial using a new immu immunotherapy drug. it was funded by the nci. within three months, stephanie's tumor had shrunk 55%. stephanie now remains healthy and is able to move on with her life. now is the time to recommit this investment in science and medicine and ensure the future
health of our medical and technological industries, provide a sustainable career path for young scientists who will be the future innovators, and importantly provide the opportunity to rapidly develop new cancer treatments and prevention strategies to once and for all eradicate cancer. i would like to thank the entire committee for the opportunity to speak to you today, and i look forward to answering any questions you might have. >> thank you. and stephanie, thank you for being with us. god bless you. glad you're here. thank you. dr. jacks, you're now recognized for five minutes. >> chairman chaffetz, ranking member, and members of the congress, 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. it is a privilege to be here today with mrs. carr and my esteemed colleagues. my name is tyler jacks. i'm the director of the koch
institute for integrative cancer research at the massachusetts institute of technology. i'm a past president of the american association for cancer research. i've been actively participating in cancer research for the past 36 years, including overseeing a research laboratory at m.i.t. focused on cancer genetics and immu immuno oncology. i cochair the cancer moonshot blue ribbon panel. dr. beckerle sirerved on this panel as well. 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 by overwhelming margins in both the house and the senate and which includes funding for moonshot 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 have impacting the lives of thousands of cancer patients today. of the discoveries, have led to new methods to detect the disease at earliy eier stages w treatments are more effective. 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 more than 600,000 americans will die of cancer. though we've come a long way, our job is far from completed. today's hearing is particularly timely given the consider uncertainty in the biomedical
research community regarding president trump's preliminary budget proposal for fy 2018, which recommends a nearly 18% cut in the budget for the nih. such a budget decrease would have devastating affects on our nation's efforts to make progress against cancer and other diseases and imperil the training of the next generation of biomedical researchers. at the time of the passing of the national cancer act in 1971 the understanding of the basic processes that trial cancer was extremely limited. since that time, federal investment in fundamental cancer research has led to dramatic advances in the elouisdation of all aspects of the disease process. for example, in 1971 we did not know the identity of a single gene implicated in cancer development. today more than 500 cancer associated genes have been found to be altered in human cancer. new anti-cancer therapies have been developed to counteract the
affe effects of many of these changes, and there are many more to come. while the development of these drugs requires significant r and d investment from the private industry as well as the involvement of clinical investigators, they are almost always rooted in basic science discoveries made in academic or government laboratories supported by the nih and the nci. federal support for biomedical research is essential for improving the health of our citizens. it is also critical to the economic welfare of the country. for example, it's estimated that for every 1% reduction in cancer death rates, there's an approximately $500 billion value to current and future generations of americans. advances in biomedical research also leads to massive investments from the private sector, including r and d spending at established companies as well as venture capital investment in the formation of new companies.
in massachusetts alone there are more than 60,000 jobs in the biopharmaceutical industry. in the not too distant future, targeted therapies, immune t stimulating agents, na nanotechnologies, and more will be the mainstays of cancer treatment leading to improved response rates, longer response times,nd 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. i'm pleased to answer any questions that you might have. >> thank you. thank you all. we appreciate that. we're now going to recognize the gentleman from florida, mr.
desantis, for five minutes. >> thank you, mr. chairman. this has been a phenomenal panel. i thank the witnesses. this is a very important issue. dr. jacks, you mentioned the benefits. you do the research, the breakthroughs. that leads to a lot of value for society. i think you said 500 billion. it just seems to me that we did the 21st century cures act that is important, obviously we're going to have to fund that, but as we get breakthroughs, even oozeas a fiscal matter, you're going to save billions and billions of dollars because most of our cancer patients are older. it's obviously great for saving lives, but even here in the congress as we're dedicating money to this, isn't it the case we'll probably save money in the long term? >> i think there's 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 amongst our citizens. so in both respects the economic payoff of this relatively small investment is staggering. >> and so with that in mind, what are the funding requirements under 21st century cures and nih's work in cancer research? what do we have to be doing here in the congress and anyone who wants to chime in on that? >> well, i'm happy to start. funding the 21st century cures act was a very important step. it provided dedicated funding to begin the initiatives that we outlined in the moonshot and blue ribbon panel, so we're grateful to that. and that work is already beginning. i think frankly the bigger issue is the nih budget and the consequent effects on the nci budget. we have seen increases. the congress actually passed a $2 billion increase for nih in 16. that was a welcome relief after a long period of stagnant
budgets and opened up the doors to new ideas and transformational new projects. the fy 2017 likewise had an increase of $2 billion. it will allow us to deliver on the promise of biomedical research. >> we do a lot of oversight in this committee. you do see studies where they spent millions of dollars on studying binge drinking and sororities that taxpayers do look at. but can you reduce funding for nih to the extent it's been discussed without negatively affecting cancer research? >> absolutely not. if the budget proposal that was put forth by president trump were to be enacted, estimates are zero new grants would be funded next year, zero new grants.
the simple answer to your question is no, we could not pursue the exciting new forms of cancer research that we're currently undertaking if that proposal were to be enacted. >> go ahead. >> perhaps i can comment as well. about 80% of the nih budget actually is dispersed to the states to the cancer centers for research, for training, for centers. and as dr. jacks said, this proposal proposed $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 we'd lose a whole generation. >> because i know there is private money that's involved, but it seems if there's that little government money available, then you can't even leverage the private as much as you would. is that fair to say? >> that's very fair to say. we couldn't 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 private foundation. so we will lose innovation in this country if we decrease this budget. >> great. well, i appreciate the testimony. i think this is very important, and ms. carr, thank you. it was great testimony. i think most of the members on this committee believe what you guys are doing is very, very important. there's a lot of different thin things. there's a lot in the government we can point fingers at, but
this is one area where clearly the money that we're putting in has the potential to really do a huge amount of good for people's lives and as we said at the beginning for our nation's fiscal solvency going forward. i yield back the balance of my time. >> we would like to ask unanimous consent to allow ms. dingell to ask questions. you're recognized for five minutes. >> i'm just happy to be here to support my friend tammi. i thank all of the panel. let me just ask some questions of tammi so we can talk about some of the issues and see the challenges. the chad tough foundation raised over $1.6 million last year for d.i.p.g. research. can you talk about the type of research the foundation is supporting in your vision for the future? >> yes. for us in our infancy, the first year of the foundation, that was a tremendous amount of money to raise, but think about that.
you guys see dollars all the time. that's nothing. so obviously we are supporting efforts through what is called a d.i.p.g. collaborative. we are a small group of family foundations. we're the only people that are funding this disease, so we are trying to -- we're trying to focus our efforts together and not reinvent the wheel. all of our family foundations come together in a d.i.p.g. collaborative where we have a medical advisory board that looks through our proposals that come through, helps us to find the most efficient ways to get the biggest bang for our buck because there's so little funding for this disease, so we're really efficient, which i figure this committee would appreciate. and we pool our resources together to make the biggest impact. the chad tough foundation also 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. we are funding research professorship at the center through the chad tough foundation, and then i am also working with physicians there to raise separate dollars that go directly to the university of michigan. we have raised 19 million out of 30 that's needed to get the center started. those are just a couple of examples. >> thank you. you've 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 i've met other families that have been hit by cancer that you've met. can you talk about that experience? >> sure. people say this is not a club that anyone wants to join. that's the first thing i'll tell you. these families are put through a lot while they're trying to get
their child healthy if that's possible, and they're -- there are strains on every aspect of their life. they quit their jobs. they change their life around. they're amazing people, and i didn't step into this world willingly, but now i'm hopeful that i can be of help in any way possible. not everyone who goes through this battle wants to do what we're doing, and i appreciate that. this is an individual journey, and people take the steps that they feel right. some people don't want to have anything to do with it afterwards, but i guess there's a group of us that don't feel that way. in all honesty, it helps me to get through the day to know that we're trying to create something good out of a horrible situation. so our hope and several other families that we work with is that we can be advocates for
those who don't find this to be the way they want to follow their next steps. this isn't for everybody, and some people i don't think anything wrong if they want to crawl in a hole, because i get it. but for me personally, i need to see something good coming out of this, so anything i can do to help. >> i've got one minute left. i'm going to ask you what would you say to congress today that you and families of children with pediatric cancers of any kind, what is it you hope for? >> i hope that you fight as hard as you can against this proposed budget cut. this is just devastating. and when i think about d.i.p.g. as an example, two and a half years ago when chad was diagnosed, they talk about precision medicine. biopsies for the d.i.p.g. tumors
were not common place. we were encouraged not to get a biopsy on our son's tumor because it was on the brain stem. now they have figured out how to do that. we donated chad's tumor postmort postmortem. michigan did some sequencing. we didn't have the biopsy tumor, the diagnosis biopsy tumor, but we had the postmortem. they found a histo mutation they never knew existed in d.i.p.g. before. when i heard that, they say we know -- we have some medicines we know can impact this. 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? they said we couldn't have even sequenced this tumor this way two and a half years ago. you think about that progress. chad had the ability to
participate in a trial at kettering university in new york where they insert a catheter directly into the tumor. we felt obligated that we needed to do something that was not going to hurt him. again, maybe it would cure him. at the time that's what we were thinking. that wasn't the case, but they have learned so much from that trial. there are so few clinical trials available as there is. and i look at this budget and i think about all this promise even just around this one disease, and the fact that zero new grants would come out, that leaves just this one disease all in the hands of families like our's. nothing is going to happen from that. we're doing our best. we're 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, those new researchers, those bright minds say i want to commit nymyself t making a difference, if they have no funding, how can they do that? when you think about 600,000 people lost a year, there's nothing worse. how can we not be focusing on this? how can this not be the number one priority when we talk about budgets? again, maybe you're right. maybe it takes someone going through this for them to really get it. i don't wish anyone to go through this to really get it. listen to what we're saying. you don't want this to happen to anyone you know. my thought would be anything 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. >> thank you. will 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 couldn't be more touched by your sto story. i have a 6-year-old at home. please be assured i have already signed onto a letter urging full funding of the nih. there are a lot of ways we can save money in our government. i've been here 90 days, and already we have seen a variety of ways we can save money besides not addressing the health challenges we have in this country. pediatric cancer is one of so many. like many on this group, we have lost family members, i have, to cancer. never a child. i can't fathom that. i thank you for your bravery in taking this challenge on because you're right.
crawling in a hole maybe the answer. let me ask you one question. can you give us any inkling why nih would only allocate 4% to pediatric cancers? it seems to me a pal tpaltry am. >> i agree with you. i think our kids deserve a whole heck of a lot more than 4%, and i've fought that from day one. i don't think people realize that either. i don't think that's something people realize. they think about cancer and a lot of times you think about kids. you see these advertisements with these bald children and you think that's where my dollars are going and they're not. and i think that's a shame. as to why, i think unfortunately it's numbers and it's money.
pharmaceutical companies don't want to invest in something when they're not going to sell thousands and thousands of drugs. i mean, that's the reality of it. that's one thing that i could say for sure is part of the issue and it's wrong. >> anybody else on the panel can shed some light on that? >> perhaps i can comment as well. i think that one of the things that we're appreciating right now is just the incredible opportunity in childhood cancer research and that was one of the areas that was highlighted by the cancer moonshot 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 sort of fundamental cancer biology that is not targeted to a specific disease area, but yet has relevance to many different disease areas. and so 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 that's relevant for metasis. we're actually actively working on ewing sarcoma as part of that research program. >> thank you. my time is grossly expired. i apologize. mr. chair, i would like to suggest we could have a suggestion on a hearing on oversight on how nih makes determinations of grants and what the percentages are to areas because i think it's worth some discussion. thank you for your patience. >> thank you. i now recognize the ranking member, mr. cummings. >> thank you, ms. carr, very much for sharing your story with us. can you tell us a little bit
about your son? you probably knew him better than anybody else. >> yeah, he was a really special boy. he was beautiful, and he was funny. and he loved his family. he loved animals. he wanted to be an animal doctor when he grew up. that's what he would have told you. he carried two doggies around with him wherever he went named barley and frederick. frederick is with him and barley is with me. he was an amazing boy with an ele electic taste in food. he liked miso soup and peppers. and he liked to have fun. he loved life. >> you said something that kind of struck me when you said -- these weren't your exact words,
but 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 them reach a milestone. you see them learn to ride a bike, and he wanted to do that. he'd say when my legs start working again, i'm going to ride a bike. so yes, it's horrifying. and it isn't right. >> we want you to -- one of the things 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're going to spend a lot of time going in circles. then you look back at your life and you're frustrated. dr. jaffee, when you hear somebody like ms. carr come in,
if she were to ask you how do i make sure -- and others of you can chime in -- that i use my energy and the resources at hand to be most effective and efficient, what would you tell her? >> i think that's a really important question, and i would tell her that we need her partnership. i think in the past we didn't appreciate as much what patients and family members can help with and guide us and tell us what are the important questions and reminding us that we're not concentrating on the cancers that we need to concentrate on. that's what i would tell her. please be our partner in this. >> 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're familiar with it? >> i've seen it.
>> in this clip he tries to claim that the massive reduction in funding is not really a cut at all. you can go. >> -- cut the national institute's of budget by 18%. it is as you know a very important part of the government in funding medical research. budget director mulvaney yesterday acknowledged the private sector can't fill that gap when there are rare diseases. we do need a really robust government presence. can you talk about medical innovation and new cures, how do you square those things when you're cutting nih by 19% and many conservatives wanted to increase the budget? >> i think somebody asked director mulvaney during the q&a
period the same question. my take is it wouldn't be cut. there's an assumption in washington if you get less money, it's a cut. the reality is there's efficiency, duplicitduplicity, spend money better. if you're wasting a lot of money, that's not a true dollar spent. it's a very washington way of looking at a budget problem. we shouldn't be asking hard working american taxpayers to send more washington to fund things that doesn't further those goals. >> ms. carr, do you agree that nih is apparently wasting about $6 billion a year? >> no. and i would ask i wonder if he's ever had an experience like our's or known anybody who has. president trump i would ask him the same question when he says it is a waste, without more funding, right now d.i.p.g.
joffee jafee. >> but as you were talking i kept going back to what i said to you a little bit earlier, that is you've taken your pain, turned it into a passion to do your purpose. you could have easily gone -- not easily, but you could have gone and said, no, i'm not doing anything, i don't want to be bothered. i'm not going through this. i don't want to relive it. but you've been able to turn it around and i think it's something that feeds your soul. i can say that our god is a recycling god, taking the pain quite often and recycling it so it can be something stronger and better. i thank you. i am sorry you went through this. but i thank your son.
>> you asked earlier about what you might do differently. i just want to say, you're doing everything exactly amazingly right. we are so, so grateful for your voice and, you know, as you see, the voice -- your voice is the voice of chad, it's the voice of all children and all families that have been affected by cancer. it's the voice of everyone who has been affected by cancer, and i'm personally so grateful to you for your bravery, your courage, your voice and your commitment to continuing to work toward making a difference at a time when it really, really matters. so thank you. >> thank you. and i would -- i would like to say i think you're right. i think we've seen through this whole journey these things come together, they've come together in a way that somehow makes sense. and i know that doesn't make sense. but when you can see the puzzle
pieces coming together to do something that's beyond a single person, we're blessed to have that, and i feel that unfortunately this was my role in life, and that was chad. and his journey was to create change and this was to be his legacy. so i'm going to continue to fight and do whatever i need to do and partner with whoever wants to do that and help that be his legacy. >> the agent of change. >> chad is. >> working for him. >> yeah, i'm doing his work for him. >> thank you. i recognize the gentleman from tennessee. >> thank you, mr. chairman, and thank you for calling this hearing and for -- you know, i've been here a long time, and i've served on four different committees, and i've heard -- i've been on hearings on anything that you can imagine. and i don't think i've heard a
kinder tribute from the doctor to mrs. carr. and i can tell you i can't top it. i will say this. i'm so sorry because we have so many meetings and i'm sorry i couldn't get here for all of your testimony. i'm glad i've heard what i've heard so far. and i have four grown children, and now nine little grandchildren. and i'm wrapped up in all of them. but i've got a little grandson who is just a little bit -- he turned four in february. so -- and i'm really wrapped up in that little boy. saturday i got to go to his first tee ball practice. and i've always heard it said that the worst thing that can happen to you is to outlive one of your children, and i don't have any question about that. and i'm just -- thinking about that, i understand that your
little son would have been or was four or so when he passed away. so i really am so, so sorry. i can tell you that. several years ago, i was the first one to do sponsor a bill to give the nih 100% increasing in funding over a five-year period, 20% a year, which i wouldn't have done that for any other agency because i -- i'm a conservative republican. i voted to cut about everything up here. but because, you know, we've got a $20 trillion debt and we've got an article in the paper saying it was going to be 29 trillion by the government estimate in 30 years. if we sit around and let that happen we're going to destroy that basically. what we'll do is be printing so much money that everything has -- every country they've tried that in the world it hasn't worked any place.
but i can tell you i very much favor medical research and i appreciate the work y'all are doing. and i have to say this. everybody in the country wants to give them money for medical research. so we've got to figure out as best we can on where we get the most bang for the buck or where we're making the most progress. and i'd like to know -- i've gone every year or i go for sus susan koman march for the cure and i've seen thousands and thousands of people in knoxville, all women, you know, men won't turn out for prostate cancer than women do. where do we get the most bang for the buck? anybody? >> i don't think there is a simple answer to the question,
congressman. >> i figured there wasn't a simple answer. we know there is an answer, we have to find out. >> we agree that the investments that have been made at the nih and the nci have been foundational in all the progress that we've been talking about and we have entered a new era when it comes to how we think about cancer but also how we treat the disease. so i don't think you'll find very much argument that is a very effective use of american tax dollars. the foundations that you've described and that mrs. carr has started contribute. they are a meaningful piece. but actually a relatively small piece. and so the bulk of the support that takes place in universities and government laboratories comes from the n irngsih and i the progress we've made against cancer and other diseases speaks for itself. >> the blue rieb on identified ten areas of priorities based on all of the progress we've made
so far. in a way that was a potential that was able to prioritize as you're suggesting. but again, a lot of the priorities were to identify the challenges and try to overcome those challenges. so we've had some great successes. now we need to go to the next step and address the challenge that's still remain, including the diseases such as pediatric cancers that we're just learning in the past five or six years really mechanic nisticly are different. they're different from adult cancer. and that was a different piece of information that came from nih funding and basic research. so i think this is a very important area. >> i also, i appreciate you saying that because that is one thing that i think the bulk of the research has been on the adult cancers and the thought being that it will trickle down. but kids are not adults. they're not getting cancer for the same reasons so focusing more on pediatric cancers, i
agree there is overlap. i understand that. but these kids -- kids are not adults. and the tricklup approach is what i'm thinking might make more sense. >> my dad and one of my uncles died of prostate cancer and i've got a touch of it. so i'm dealing with that. so i'm very much interested in what y'all are doing and i'll support you all i can. dr. beckerle, i've run out of time. >> have i run out of time? very quickly, what you're seeing in the progress today in terms of reduction of cancer deaths and increased survivorship is a result of decades of investment of the federal government in cancer research and in fundamental biomedical research. a lot of the research that has led to the cures that we have today and our knowledge about how to prevent cancer has come
from basic discovery of science based on people discovering their curator and how cells work and tackling the cancer problem. my lab worked on a chicken giz ards and now i'm working on human sarcoma. >> now recognize the gentle woman from illinois, ms. kelly. >> i've been on this committee for two terms, i think, and i never felt like i feel now to run around and just give everybody a hug and say, it will be okay. but mrs. carr, thank you for joining us and sharing your family story today and for jason for fighting for all of the
children. early on i worked on peds and saint jude, so i can relate but not exactly, but i went to funerals also. so thank you so much. the role of innovations cannot be overstated. as chair of the congressional black caucus my priority this year is on medical research, priming the provider and researcher pipelines and eliminating barriers to increasing recruitment of underrepresented communities in clinical trials. like you, dr. beingerle i think research is the way to achieve that. and like you, dr. jacky, i believe we have to ramp up efforts to find solutions to provide the medically underserved with treatments. my congratulations to you and
your team for the access. can you be more specific about which minority communities are represented in clinical trials within the 60% margin you mentioned? >> yes, right. good point. it's mostly african-americans in baltimore. it has a large african-american community and a hispanic community. most of what we do is targeting african-american communities. >> what can congress do to be helpful? and i guess because mrs. carr is here, we can talk about that we need to do more around kids but also in the minority communities. >> i have to be honest. it was research that helped us figure things out. and, you know, we were concerned that there were prior history among african-americans that research was bad due to instances that happened 20, 30, 40 years ago. but as it turns out that wasn't
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 cancers are different and we're learning that through biological studies. but also, patients, african-american patients, are more susceptible to high blood pressure and other diseases that would make them more eligible if our criteria and clinical trials were looser to allow for minimal damage to other organs. that was the finding that we did. clinical trials do take more time. and so we had to figure out how to accommodate our patients, both in transportation and also not requiring more than what they could handle with having to be at work or family members having to be at work or somebody
taking care of the kids. so a combination of social and medical issues that we identified. >> doubtful that you still deal with the tuesday keskegee effec >> and that's what i was referencing but not with our patients. the patients we were seeing in african-american community were not reduced it was ones that were getting out to the clinical trials. and clinical trials are very important because most of the cancers we're dealing with are not curable. so we wanted to make sure that african-american patients as well had the access to the best clinical trials and were willing to consider them. >> thank you. i represent the second congressional and chicago and nci designated cancer centers, the cancer center of
northwestern university and university of chicago. and i am familiar with the nih research funded institutions. i would like your insight about the presence in nih universities that are embedded in districts. can you speak to the communities that they generate both in the research setting and the direct impact that nih institutions have on surrounding communities. and whoever wants to answer. >> first, i'll start. i direct a cancer center, it's not a comprehensive center. we do more basic foundational research, but we're at the dana harbor center, which is similar to the one you mentioned in chicago. we observed that the investment from the federal government stimulates private sector. when i joined the mit faculty 20
years ago that was in decline. if you were to visit the kendall center today, you'd be mazed at the number of pharmaceutical companies, biomedical facilities have surrounded the campus because they need to be close to the action. and the action is funded by government grants. in massachusetts along there was last year $2 billion of venture capital investment foundation, new companies in the space. so that's just one indication of the economic payback that such investment makes. >> besides saving lives and the moral compass part of it, economically it makes sense too? >> most definitely. >> thank you all and i yield the balance of my time. >> recognize the gentleman from alabama for five minutes. >> thank you, mr. chairman.
i want to ask a few questions and i apologize for having to step out for a few minutes. this is something that really, really touches me. what i'd like to know -- i would have been working on regulatory issues that impacted everything in the country. this is for the researchers. are there unnecessarily burdens from the fda and other agency that's you think we could modify, change, correct, so that it doesn't slow or restricts cancer research? >> i'll take a shot first. i do work pretty closely with f fda. i hold investigator initiated inds. i would say the fda is very, very helpful. it helps us develop more rapidly
drugs because of their large experience in drug investment -- development. i think there has been reorganization, to your point, that has helped bring cancer under one leadership. it's been very, very helpful. i think the progresses made in cancer drug development, therapy drugs being a specific area, has really helped to push the fda to see that we need a more rapid way of getting drugs developed. and so from my point of view, i really 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 he's going to india for treatment. it's a treatment that's been approved for testing at johns
hopkins for treatment but not for tumors. some of the concerns that the fda and the impediments that people want to make the choice, and rather than go to india, give them the treatment here and give them a fighting chance much that's one of my issues. another thing is just do you know off the top of your head how much does nih -- did you want to respond to that, mrs. carr? >> you know, i would like to because the community that i'm involved with children with dipg they're forced to go around it as well. they're ahead in the australia, u.k. and mexico in some cases. >> he's going to india, and he's going to an area that's like
silicon valley. this is high-tech and sophisticated. and i think from a personal perspective and a lot of the patients, we need to allow that here. the patient needs to have the choice. >> totally agree. when there is so much at risk and so much on the line, parents at least are willing to do what it takes. when you're talking to snn who has a zero percent chance and do you want to try that, it's important. >> i appreciate your getting that attention out and giving that response. i'm from -- i grew up in rural northwest alabama. and, you know, what people would consider dirt poor and i'm particularly interested in what the huntsman cancer research is doing 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 we're doing in utah and in the mountain west, of course, has complete relevance to rural and frontier areas and other places. so, for example, the symptom management tool that we've developed, we know that patients 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, you know, debilitating sometimes challenging side effects. we've developed a tool that touches base with them on a regular basis and with their caregiver and we find that has alleviated their symptoms quite dramatically and reduced caregiver anxiety. that is the thing that we reach out and try to support our rural and frontier patients and the
families during the course of their treatment. what we're learning in utah should be adopted throughout the country. >> with one question. the issue that this committee has been focused on particularly the chairman and cummings is drug prices and i saw a study from memorial sloan-kettering cancer center a billion dollars wasted that the drug companies are putting more in the vial than they need knowing it's more than what's needed for the treatment. and it's thrown away. it's $3 billion. would you like to comment on that? are you aware of that? is that something you're aware of? >> no. >> i would recommend it was -- i've got the article here, if i may we'll enter it into the record. >> without objection. >> thank you, gentleman.
>> i'll recognize the gentle woman from florida, for five minutes. >> thank you so much, mr. chairman and the ranking member, and mrs. carr, thank you so much for talking about chad. i didn't know chad. but i raised three sons and 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 that's 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 collection information, is that correct? >> yes. dipg collaborative formed the dipg registry. so when chad passed away we do nated his tumor post momortem a his tumor could be utilized by universities around the country. so one of the things that getting the word out that we can impact the research. >> last month nci announced that
it was launching the largest study of african-american cancer survivors based on a registry, the detroit research on cancer survivor study would look at factors that would affect survivor rates among african-americans diagnosed with cancer. dr. jafee could you explain the social and biographical barriers that it might present to cancer survival. >> wow, that's a good question, but it's not my area of expertise, per se. but i would expect there are going to be a range of issues including what theunder lying types of diseases the types of cancer the patients had because when a patient who is healthy is easier to receive the treatments
than patients who have underlying comorbidities. and then socioeconomic is important because getting access even through troansportation to the right places is a very challenging issue for patients who don't have the means. >> i would just comment that i think this is one of the things that is so important about the national cancer institute's efforts in that the nci can really bring together these nationwide consortium and registries so we can get information about survivorship and outcomes for patients throughout the entire country and that eliminates the kind of sampling error, if you're looking at one site in one state that might be different than
what happens in another place in the country. that's an important contribution to the nih to our national health. >> thank you. using data from the nci childhood cancer reduction of second malignancies of child cancers. using population data helped determine that over the course of 15 years of more,ing and children treated with lower doses of radiation were less likely to suffer recurrence. can you comment on any research? >> i'm happy to comment on that. i think what that study points out the progress we made in understanding the consequence that's we use and radiation is a good example. it's now clear that radiation can promote the changes in cells that ultimately lead to cancer and those need to be used and minimize wherever possible.
there are fewer second malignancies in children. >> thank you. doctor. >> i think just related to that, this area of childhood cancer survivorship is really, really important. we have this great success now in our ability to treat childhood cancers even though we have a lot more to do. but what we're now beginning to see is that there are what we call late effects of these treatments. sometimes during the radiation or chemotherapy sometimes psychosocial effects, fertility effects, et cetera. there are many, many things where research is required and will be helpful to address the current on that needs on individuals who have gone successful treatment for childhood cancer so that we can make it better going into the future. >> great. thank you so very much. mr. chairman, i yield back. >> i think the gentlemen woman will now -- recognize the gentleman from wyoming.
>> thank you, mr. chairman and to our panelists and thank you for your emotional testimony, mrs. carr. i was standing in the doorway when you started to testify. i'm the father of six children and i can't imagine what that is like and i'm so proud that you are here today. and you've served the cause well. and i'm 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, there is -- we look at the dollars spent by governments and by people who donate and contribute to research, cancer research, alzheimer's research, whatever it may -- may be. and i'm always concerned as a career businessman what kind of collaboration is there between the despair -- disparity of
collaboration. i'm a huge advocate. but there is billions of dollars spent. i want to make sure we're sharing the research between all of the researchers so people involved in research facilities, could you give me your thoughts. is there enough collaboration? can the federal government play a role like a repository of information? >> you've raised an important point, actually and i think we're facing that problem increasingly by the day because the amount of data we're generating is greater and greater because of new technology. so the answer is yes, there is considerable collaboration and interaction. the national cancer centers and the network of cancer centers in the country that interact and
share information. the cancer blue ribbon panel recommend the national facility of sharing data, to store it appropriately, access it easily, and develop the kind of software tool to analyze it to break down barriers that do currently exist. there is examples of progress, but there is still a need. so i think the moon shot funding that you have funded will help us close that gap. >> and i can give you a few examples of what's already ongoing. so we now have some development of the open access resource for sharing cancer data. and they've brought in outside groups such as foundation medicine which is going to double the total number of patients' information into this. and this is an open access,
available to everyone. and again, as dr. jack said, one of the blue ribbon panel is to start use this and increase the funding that was given to us from congress to now increase this ability. also the nci is developing jennomick, amino therapeutics and integrating the stats so we can look at different cancers and the whole tumor and not just microgenetics. it allows us to look at rare cancers and try to use now cancers that have been put into the database and it will increase the number we can now
make more hypothesis to develop new drugs again. >> all of us in the cancer research community are desperately working to improve outcomes for cancer patients and we know that none of us as individuals or within our institutions hold all of the knowledge that's necessary. so we are naturally inclined to collaborate and to share information. and the national cancer institute is really helping to support us in that effort. and an example that i would give that's related to our new knowledge and the precision medicine era is that we now are trying to test really exciting new therapies that are relevant for a small subset of signatures that have a genomic set of
signature. so like lung cancer, and the patient for a particular type of lung cancer that might be able to contribute and represent a clinical trial may represent 10% or even 1% of the total patients. so the only way to understand if that treatment is going to work is if we have a national network in which we find the patients across the entire country and bring them together to participate in a clinical trial. and that is exactly the infrastructure and support that is provided through federal funding through the nci. >> there is a lot of things that republican, and government shouldn't be involved in, but one thing we should all be involved in and i stand against the president's proposed budget cut. and we need to spend a lot more and not less in these areas.
i thank you very much. and god bless you, mrs. carr. i yield my time. >> i recognize miss watson coleman from new jersey. i guess ms. lawrence of michigan. >> thank you, mr. chair. i want to acknowledge miss carr and express my deep condolences for your son. being from washington we watched the love, support and fight. as a michigander, raising the awareness is amazing. >> thank you very much. >> i'm very proud of you. >> not everyone often agrees on everything but chad's battle with cancer and your commitment to his continuing legacy has
crossed cross the fan lines and united funds 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. corian cuts made to nih. in your testimony, you discussed the major strides that nih researchers have made towards cancers such as leukemia. as you noted, 40 years ago leukemia had a 10% survival rate. today the survival rate is almost 90%. that represents just one of the countless medical achievements that have been made as a result of funding to nih. miss carr, as someone with firsthand knowledge, i would like to give you an opportunity
to speak to us as members of congress who have the ability to increase funding to nrh to discuss the merits of research being done by the funding. >> thank you. we'd like to call it in the dipg community what we hope for is the home run strategy. pediatric leukemia was considered a rare disease not too long ago. they focused. and i think whether or not you consider dipg -- it's rare. there is no doubt. but brain tumors in general are not rare. pediatric brain tumors are a leading cause of cancer deaths in children. so focusing on pediatric brain tombers is something that makes sense. and for us the strategy that we're taking and as far as our funding goes which again is a drop in the bucket is if we focus on the hardest tumor and really focus in it and now with
the momentum that they're able to -- there is tissue now. they can study the sample. they're -- the ced and learning about the -- the ability to have the blood brain barrier with a catheter which is a part of the clinical trial chad was a part of, if we really focused, even if raising the bar from zero percent to 2%, we've seen in michigan alone, there is funding and big room to increase success rates there. but young scientists are now interested in looking into this disease and that's 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 that was able to participate in a clinical trial. a lot of these children, they
don't meet the requirements and they aren't even able to participate. as a parent i can tell you when you're basically deciding on a treatment plan for your child because that is what this is, the doctors don't 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're not out of the woods. there will be other secondary symptoms. chad received 30 round of radiation. the way we're looking at it is focusing on the toughest, allowing that to open the flood gates for the other more treatable tumors and focusing on the pediatric tumors because children are not adults. >> i want to thank you again and commend you for your fight. 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 nrh -- nih to be implemented on the upcoming budget. just on a personal note, everyone tries to have their life to 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. it was your fight, his life, will mean so much more to so many people. so thank you so much. >> thank you. we really believe that his five years he's accomplished more than most people accomplish in their whole life. >> thank you so much. >> thank you. >> now. we recognize the gentleman from wisconsin. >> sure. just a general question. what are the funding requirements for 21st cures and nih's cancer research.
>> what are the funding requirements. >> yeah. >> are you talking about the application or that sort of thing? >> no. how much do you anticipate? >> oh, i see. we out lined several recommendations each of which has a pretty broad scope. frankly the monies that came through the 21st century cures act has accomplished some, but not all with the money allocated. >> can you give me the dollar value. >> this year is 300 million. i think it could have been easily two or three times that and we could have spent the moneywisely. >> is there any way that you can shave that down? >> within that specific program we worked very, very hard in this blue ribbon panel to create a series of recommendations. what you've got is our best effort in a particular form of cancer research, more
mission-focused cancer research. so that is our set of priorities for that particular program. i should add that funding in our view doesn't replace the start appropriation to the nih and nci which is more substantial and provides a wide range of funding research. >> i understand what 21st century did is -- and i voted for it. because i do know how important, not just research for cancer but other things as well. all of 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. >> i'm not really sure how many are focusing. i think -- i know again in michigan we're trying to create a brain tumor center where
that's what they focus on. but i don't believe anything exists like that. people are doing research all over. dipg there are several and some phenomenal researchers at sloan-kettering. >> this question in general, i know we do a lot of research in wisconsin, huge amount of research in wisconsin, doing it for a lot of years. how many different universities around the country are doing cancer research? would you be able to answer that for me. >> i would say the research universities in america all of them have program that's relate to cancer. the cancer center from wisconsin is the leading one. and that is important for a variety of reasons, one, there is a lot to be learned. and two, you want to train your individuals in the states to
become biomedical researchers and scientists. so that has to be done on a national level. >> what i'm getting at is you have to competing interests in my mind. on the one hand, it's good that you have a lot of institutions around the country doing cancer research because maybe there is something that people at mit think that would work that other people don't think would ever work. if you had to prop them they say don't go there, and you're able to go there with good things. on the other hand you have there are many places around the country may be duplicating efforts and not according with each other. you tell me, 40, 50, 60 different places? maybe there are 20, maybe there are are 80. where do you think we are in a -- in that conflict or
competing goals. make sure everyone is independent, onto you don't want to have four people doing the same research that they found out around the country not effective five years ago. >> i think it's a very complex question. there are a couple of facts that we do know and that is if you look around at the different cancer centers there is different expertise of cancer centers. how many do brain tumors, not many. currently the funding is tight at the nih and nci. we used to get 20 to 30% of grants funded. now we're down to 12 or 14%. that limits what we can do. there is a lot of good research that needs to be funded.
so i assume that the review process will avoid duplication. >> it scares me when you say you're not sure how many people are doing research. people in your position should know. with you you don't know. do you? >> well, because there aren't many place that's do it. that's the problem. you asked me about amino therapy. there are five places that do it around the country. i can't tell you about brain tumors. >> that's what we've been trying to focus. when you talk about dipg, and it's a small, rare tumor, the folks that come together to fund that, that's what we do as a collaborative. we make sure that -- because there are so few of us and so little money, the duplication of
effort is not something that we want. >> it concerns me that you don't know. i guess you assume that you would show up here and somebody would say we're doing cancer research in 88 institutions -- >> it's probable for you to know whom you're speaking with. we represent particular institutions. >> i understand. >> if you were to ask the director of the national institute he would have an answer for you. sometimes it's difficult to know. for example, at mit last year we enacted a new initiative on pediatric brain cancers, my colleagues probably do not know that. because it's a local effort. >> they should know it. >> the time is up. >> we recognize the gentleman from california. >> thank you, mr. chairman the i want to thank you and the ranking member and all the panelists. this is a personal issue for so many of us. i'll 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 democratic 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 an audit by the business community and mc-kinzie, that's $125 million in waste in their budget, yet the administration is suggesting taking money from nih to put money in their budget. before we do that that hearing was as bipartisan as this is in terms of applying our oversight and making sure we get the best returns for the department of defense. but to jump to the conclusion we should give them money at the ex-tense of nih is appalling. every dollar invested in nih returns $8.50 in extra spending
just on the geneome project. when i was elected to congress three years ago, i was unfortunately joined the club -- fortunately what i have is chronic leukemia and during the process there were ups and down as to my mortality. but as has been testified earlier, 20 years ago, it was a 10% survival rating. now there is a 90% survival rating. so having been involved and absorbed myself in the history having now talked to dr. mute and dr. bigs and read their books and went to nih and the university of san francisco and is the second recipient of national funding and we're
hoping to surpass johns hopkins, and spending time in the hospitals and a lot of it go to the survivors, family members, who found their voice and your voice that you expressed today. your son clearly is here in our presence today, and you know that. but it's not a trite thing to say that your experience. so in my case, reading back to sydney fa sydney barber, and fenway park as a young person, never knowing what that's wa about but knowing now that it was a initiative in front of congress to convince congress and president nixon to sign a legislation that helped start all of this. so the sineringy, and i'm understanding -- i'm cautioned by people in my district, don't
get carried away, there is no cure, in my instance nih, to go out there and it's hard to believe the value. these young nameless people who are heros who have saved my life and millions of other people's lives and that context and what this brings in the value added benefit for the world. it's like a military map. and the moral high ground we get as americans doing that. and speaking to the chief researcher out there and how many times he's been to china because china has been trying desperately to replicate what we're doing here, it's staggering we would consider -- and it's a real statement of our values to how we invest. i think one of the most amazing statistics is research related gains from the period of 1970 to
2000 have been economic value in the united states of $95 trillion. and maybe not in this instance but i'm a living example of that. so my oncologist told me that 15 years ago if someone was diagnosed with what i have he would sprinkle some water on me and would tell me to go enjoy whatever life i have left. and now i hopefully will have an 85% survival rating. back to pediatric research we know that dana fasher was because you read people dying of leukemia and what i have it was because of the moral obligation for mens to invest in that. briefly and in conclusion and starting a survivor caucus which i hope many members join as possible. it's very broadly defined. it's talking to doctors and i hope they come to speak to this
group and i hope you come as well. one of the things was communication. we do a bad job of communicating the amazing return on investment and then the communication from the medical industry to people who have been impacted by this. so, mrs. carr, you are an example of that voice. how can we do better? >> i think listening is part of it too. i mean, 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 a position to make that happen. 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 for me, that's what i say, you guys hold all the power. >> we can't do that without your voice.
so thank you, mr. chairman. >> we recognize the chairman from maryland. >> mr. chairman, thank you very much. i am indeed the congressman from nih from the 8th congressional district of maryland and the nih is very much in the heart of my district and being the representative from this area, i know intimately and i keep close track of, all of the research that's gone on into leukemia, lung cancer, colon cancer, cystic fibrosis, asthma, bulimia, drug abuse, alcohol abuse. i mean, it's just extraordinary, the range of scientific inquiries and endeavors taking place at the nih. but i also want to speak about a survivor and i wasn't aware there is a survivor caucus, i would be honored to join you in that. i had colon cancer back in 2010. i was -- i had been teaching at
the american university law school as a state senator, but i read an he is a by susan sontag which is very poignant she said a person is born with two passports, a land to the healthy and then a passport to the sick. and all of us will have to use both passports. and those of us who have gone through it or had family look through it and look at something like billions of dollars cut to the nih budget and are horrified by it. and people not directly touched go about their business. so my question for you, mrs. carr, and thank you for your wonderful testimony. and how do we maintain the
consciousness of both passports and theco existence of these two lands? i remember when my chemo ended, the very last one, feeling as if i have suddenly returned from a very long and harrowing trip. but how do we make that consciousness permeate the country? >> i think it's hard. i can tell you i didn't know a lot of these things before i had to know them. i didn't know the pediatrics only received 4% of funding. i didn't know -- i didn't even know what dipg was. so i think having more people who have been there, trying to resonate their experience to those and hopefully people hear and they feel sad and feel sorry, but hopefully they think about the impact. >> but having these three talk and they are benefits to research beyond just saving people right now.
there are huge financial implications and so much there. and i don't want -- i tell people you don't get it until you get it. unfortunately, though, you don't want people to join that club. so as many advocates we can build for having to share our story. there are only so many of us, thank goodness, who have lost children, and only so many of those who want to share their story. and so creating advocates in this room and help us in that effort. >> let me ask the question of dr. beckerly. i think attributed to ben franklin, an ounce of prevention is a pound of cure. i did research on alzheimer's and we spend 250 times more treating people with alzheimer's disease through medicaid and medicare alone than we do on
research to get a cure for alzheimer's which is now beginning to spiral out of control. the jumps of people who suffer from alzheimer's and die from alzheimer's are extraordinary. so 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 on this area. clearly, we need to continue our investment and the development of new treatments for people who are already affected by cancer. but we now know that probably about 50% of all cancers could be prevented. and this is by cessation of smoking in some cases and also understanding of inserted risk and screening and early detection that could improper cancer outcomes and preventing the disease.
i think you're right. we now have enough scientific knowledge it's time to really put some dedicated focus on cancer prevention. one of the areas of the blue ribbon panel was a focus on precision prevention and capitalizing on our deep knowledge about cancers that run in families. we know there are at least 50 different types of inherited cancer and if we could identify everybody in the country that had that inherited predisposition and screen them, we might be able to prevent untreatable disease. in the case of link syndrome which we heard from stephanie -- stephanie, right? >> yes. >> okay. good. we know there are a million people in the united states that have lynch syndrome which causes a predisposition to colon cancer, uterine cancer and others. only about 5% of people who have that syndrome know they have it.
screening -- >> i lot of cousins to other lung cancers and leukemia. so there's no sort of group of diseases that upset me more than cancer. and i think that while we're talking about how to get out the word, how important this is, i don't think that there's a family in this country who's not personally touched by cancer, whether it's pediatric cancer. and ms. saturday cara, god bless you for using your tragedy to save so many lives. you are a courageous woman. but just all the different cancers. so i think that this is -- this budget is really very -- no one
thought through this issue. i don't think anyone's going to support even in congress taking money away from the national institutes of health. so i -- it's more than cancer. i mean it's die bettics. i'm diabetic. >> i certainly would like to not be on the medication i'm on. there's so many things that are happening that could possibly impact me even as an adult let alone as a -- there's so many things that affect me as an african american differently, or as a person who has even more than just african blood, i got a whole bunch of stuff happening here that i might need some very specific scientific understanding, evaluations 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 that we don't lose
money, that we, in fact, look at what is realistic in terms of our needs. there is no greater set of diseases to conquer than cancer, and so i thank you, mr. chairman, for calling this hearing and giving me an opportunity to speak. >> thank you. we're at the conclusion here and i want to -- i want to first of all thank dr. jack, dr. after if i, dr. beverly. you do some very rewarding work, work that affects every single american. and tho those of you you work with, you represent big institutions with lots and lots of people who work hard every day behind the scenes. they don't necessarily get the spotlight that they deserve. >> i hope in some small way this committee hearing will do some of that, but i hope you carry back to them how much we appreciate the work they do and how important it is. and sometimes it takes years,
weeks, decades to find that break through that may have come from something we didn't think it was going to come from. if it was easy i'm sure would you have already solved it. so you're tackling some of the most difficult things that saves our negotiation aation. and we have a duty to hear the stories and listen and but also to fund it. we are in a position to make a difference and that's why i called this hearing. i think what the president's budget proposal was is an embarrassment and it's not something i could support, certainly that aspect of it. and i do hope that 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 committee's intention to have another hearing. it will probably take a few months to put together. what we would like to hear from
very specific scientists talk about some of the most promising efforts. i think if members were also to hear not only the stories of the families that are affected by this, but also very specific cases, i've heard some amazing stories every once in a while i'll turn on everything from 60 minutes or something else and there's a big break through that's right on the verge and maybe happening. we would like to also hear those stories. i think that would help members get a better grip. it is -- it is a big issue and you've helped illuminate that, but help us think through and i think we can also highlight the specific -- the specific scientists and allow them to tell their story and answer questions because i think you get a lot more people who will then want to fund that type of research because it is so promising. so if you can help us identify
that. to sftephanie, thank you for being here, glad that you came and we wish you obviously nothing but the best. to c.j. and tommy, pretty boring, uh? yeah. i would agree with you. and but very important stuff and i think later on in life you'll recognize and say, wow, my mom did that? it's not something she probably ever dreamed of. nobody wants to come testify before a congress, believe me. but to -- to your mom and dad, thanks for their strength and sharing your story. and it is impactful and we do appreciate it, and obviously chad tuf, we, again, wish you had never had to go through that. but you have exemplified what i'm guessing are -- i don't know how to quantify it, thousands,
hundreds of thousands, millions, i don't know how to quantify it, of people and families of who gone some things too and would probably -- you go to places you don't want to go, right? you don't want to be part of that club, as you said, but they also step up to the line and they come and they do it and they do those hard linthings ano we thank you for doing that and we appreciate you doing that and wish your -- you've got a beautiful family. so thanks for sharing that and god bless you. committee stands adjourned. thank you.
>> next senators ben cardin of maryland and marco rubio of florida discuss human rights abuses in russia. then fbi director james comey talks about cybersecurity and data collection. and later a senate hearing on russian hacking and the 2016 elections. join us saturday at 10:30 a.m. eastern as we're live from the national world war i museum in kansas city to mark the epttry into what was call the great war. our guests are matthew nailer,
national world warld i national ceo. mitch yog he will son, historical adviser and author of 47 days, how per shing's warriors came of age to defeat the army in world war i. richard falkner, the american soldier in world war i. andorra cart, national world i senior curating live saturday at 10:30 a.m. eastern on american history tv on c-span 3. this weekend c-span city's tour with the help of our comcast cable partners will explore the litter rarery seen of chico, california, on c-span 2. in his book, johned by we will&california, the life and writings of a pioneer, 1841 to 1900. >> most important and long
lasting relationships for the federal government, though, starting with his days in congress was his close relationship with the united states department of agriculture. he was constantly being sent -- constantly corresponding with officials in the usda and was constantly receiving from them different crops. >> on sunday 2:00 p.m. eastern on american history t very we visit the california state university form. >> it's the number one industry in california yet and we're the number one state in the nation in terms of agriculture. and there's 23 csu campuses but only four of them have agriculture. and chico essentially represents the northern part of the state, but we draw students from all over california to get experience in agriculture
itself. >> and we'll also go inside the chico museum to see the historic chinese altar from the 1880 chico chinese temple. what's saturday at noon 2:00 eastern on book tv and sunday afternoon at 2:00 p.m. on c-span 3. working with our cable affiliates and visiting cities across the country. >> now senators ben cardin and marco rubio. this atlantic council event is 1