[House Hearing, 115 Congress]
[From the U.S. Government Publishing Office]




 
     FEDERALLY FUNDED CANCER RESEARCH: COORDINATION AND INNOVATION

=======================================================================

                                HEARING

                               BEFORE THE

                         COMMITTEE ON OVERSIGHT
                         AND GOVERNMENT REFORM
                        HOUSE OF REPRESENTATIVES

                     ONE HUNDRED FIFTEENTH CONGRESS

                             FIRST SESSION

                               __________

                             MARCH 29, 2017

                               __________

                           Serial No. 115-54

                               __________

Printed for the use of the Committee on Oversight and Government Reform





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         Available via the World Wide Web: http://www.fdsys.gov
                       http://oversight.house.gov
              Committee on Oversight and Government Reform

                     Jason Chaffetz, Utah, Chairman
John J. Duncan, Jr., Tennessee       Elijah E. Cummings, Maryland, 
Darrell E. Issa, California              Ranking Minority Member
Jim Jordan, Ohio                     Carolyn B. Maloney, New York
Mark Sanford, South Carolina         Eleanor Holmes Norton, District of 
Justin Amash, Michigan                   Columbia
Paul A. Gosar, Arizona               Wm. Lacy Clay, Missouri
Scott DesJarlais, Tennessee          Stephen F. Lynch, Massachusetts
Trey Gowdy, South Carolina           Jim Cooper, Tennessee
Blake Farenthold, Texas              Gerald E. Connolly, Virginia
Virginia Foxx, North Carolina        Robin L. Kelly, Illinois
Thomas Massie, Kentucky              Brenda L. Lawrence, Michigan
Mark Meadows, North Carolina         Bonnie Watson Coleman, New Jersey
Ron DeSantis, Florida                Stacey E. Plaskett, Virgin Islands
Dennis A. Ross, Florida              Val Butler Demings, Florida
Mark Walker, North Carolina          Raja Krishnamoorthi, Illinois
Rod Blum, Iowa                       Jamie Raskin, Maryland
Jody B. Hice, Georgia                Peter Welch, Vermont
Steve Russell, Oklahoma              Matt Cartwright, Pennsylvania
Glenn Grothman, Wisconsin            Mark DeSaulnier, California
Will Hurd, Texas                     John P. Sarbanes, Maryland
Gary J. Palmer, Alabama
James Comer, Kentucky
Paul Mitchell, Michigan

                   Jonathan Skladany, Staff Director
                    William McKenna, General Counsel
      Sean Hayes, Health Care, Benefits, and Administrative Rules 
                      Subcommittee Staff Director
                 Sarah Vance, Professional Staff Member
                    Sharon Casey, Deputy Chief Clerk
                 David Rapallo, Minority Staff Director
                 
                 
                            C O N T E N T S

                              ----------                              
                                                                   Page
Hearing held on March 29, 2017...................................     1

                               WITNESSES

Mrs. Tammi Carr, Mother of Chad Carr, The ChadTough Foundation
    Oral Statement...............................................     6
    Written Statement............................................    10
Mary Beckerle, Ph.D., Chief Executive Officer and Director, 
  Huntsman 
  Cancer Institute, University of Utah Medical School
    Oral Statement...............................................    13
    Written Statement............................................    15
Elizabeth Jaffee, M.D., Deputy Director, Sidney Kimmel 
  Comprehensive Cancer Center, Johns Hopkins University
    Oral Statement...............................................    19
    Written Statement............................................    21
Tyler Jacks, Ph.D., Director, Koch Institute for Integrative 
  Cancer Research, Massachusetts Institute of Technology
    Oral Statement...............................................    27
    Written Statement............................................    29


     FEDERALLY FUNDED CANCER RESEARCH: COORDINATION AND INNOVATION

                              ----------                              


                       Wednesday, March 29, 2017

                  House of Representatives,
              Committee on Oversight and Government Reform,
                                                   Washington, D.C.
    The committee met, pursuant to call, at 9:30 a.m., in Room 
2154, Rayburn House Office Building, Hon. Jason Chaffetz 
[chairman of the committee] presiding.
    Present: Representatives Chaffetz, Duncan, Jordan, Amash, 
Foxx, DeSantis, Ross, Walker, Blum, Hice, Grothman, Hurd, 
Mitchell, Cummings, Connolly, Kelly, Lawrence, Watson Coleman, 
Demings, Krishnamoorthi, Raskin, Welch, and DeSaulnier.
    Also Present: Representative Dingell.
    Chairman Chaffetz. The Committee on Oversight and 
Government Reform will come to order.
    And, without objection, the chair is authorized to declare 
a recess at any time.
    We have a very important hearing this morning on federally 
funded cancer research, coordination, and innovation. And this 
one is--some hearings are more important than others. I wish it 
was the type of hearing that was on the headline, 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. I lost my mom to breast cancer. She fought it for some 
10-plus years. Passed away in 1995. My dad, who was old school, 
my dad was the kind of guy who never thought he had to have a 
checkup; he'd be just fine. He felt fine; he didn't need a 
checkup. Unfortunately, he got colon cancer, and doctors at 
least told me that if he had had any sort of checkup in the 8 
or 10 years preceding that, that he would probably still be 
here with us today. He passed away a few years ago, and I miss 
him. I miss them both.
    And having to go through that is not something you wish 
upon anybody. In my own life, 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 amazing experience with my parents. 
Without getting too personal about that, I think the importance 
here in the discussion that 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 resources 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.
    I hated the President's budget. I got a lot of respect for 
Mick Mulvaney and President Trump himself, but I thought his 
budget proposal on this category was pathetic and inadequate. 
We should be spending billions of dollars to solve this.
    So part of--the heart of what we want to hear is, how much 
does the money make the difference? What could we do if we did 
have the resources? And with the resources we are throwing at 
it, which is a handful, billions--again, I don't want to treat 
it lightly--but compared to the $4 trillion we will spend this 
year, we are going to spend a couple billion fighting what is 
going to ultimately kill 1,500 people a day, that equation to 
me just doesn't make sense. We want to hear not only what could 
happen if there was more funding, what is happening with the 
funding that is going on, and what are some of the exciting 
developments? Every once in a while, there will be a story on 
the news or 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, Julie, she works for a plastic surgeon in Utah. 
She got her degree in psychology, and she is working with women 
who are fighting breast cancer. And it's very satisfying, and 
I'm very proud of her and the great, important work that she 
does there. But sure enough, every day, day in and day out, 
young women are coming in and fighting this horrific disease. 
They didn't ever think they were going to get it, and now 
they're fighting it. And there are some really exciting, 
amazing things that I think give people a lot of hope, a lot of 
reason to cheer and to be excited, 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. And 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 it's also good 
to hear for 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 these news stations. And they're going to 
talk about this, that, and the other. And the thing that's 
probably going to affect real lives more than anything else is 
going to be this topic in this hearing. And I do wish it would 
get the highlight and the headlines that it deserves. And I do 
wish there was more of a national imperative.
    And I think if it's one of those unique things that if 
actually we went house by house, home by home, voter by voter, 
and asked them, ``Where do you want to spend money, where 
should we prioritize money,'' this would be at the top of that 
list.
    Look, I'm a really conservative person, but when you 
spend--or when you have 1,500 people a day dying, this is not 
just, you know, ``Hey, we got to push this down to a local 
budget''; this should be the national imperative that drives us 
all to fund it properly and to truly, truly make a difference. 
That's why I wanted to call the hearing today, and I think we 
all feel that way.
    I've gone over my time. Let me yield back and now recognize 
the ranking member, Mr. Cummings.
    [Prepared statement of Chairman Chaffetz follows:]
    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, Mrs. Carr, and your 
family. I'm so glad that you're here with your family to share 
the story of your son Chad's amazing bravery in his battle 
against cancer.
    Today, the single biggest 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. It is not going to be enough 
for us to complain. We have got to turn that around. His 
proposal gives little explanation for targeting NIH for this 
massive cut, which can only be described as heartless.
    After he issued his budget, the White House Press 
Secretary, Sean Spicer, tried to explain that these cuts were 
not really cuts at all. He was asked about the NIH budget, and 
he argued that only in Washington does less funding mean there 
was a cut. Here is what he said, and I quote: ``There is this 
assumption in Washington that if you get less money, it's a 
cut. And I think that the reality is that, in a lot of these, 
there's 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.''
    I wish he could talk to a few of the 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 of research, 
because some 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, Mrs. 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's 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 pandemic than a 
terrorist attack, and so that's part of the defense of the 
country as well,'' end of quote.
    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, and we need to 
make sure it is directed to cases like your son's, which have 
little or no Federal funding devoted to them today. Mr. Spicer 
did not make his quote, ``less funding is not a cut'' argument, 
when the President 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 
transformational with the power to turn ideas into cures, the 
idea that there's a possibility that there is a cure over here, 
and we just cannot reach it. We are reaching for it, but we 
cannot reach it. We're trying to get it, but we cannot reach 
it. And we know that if we could just get it, it could save 
lives.
    So this research is also an incredible economic engine, 
generating activity in every State in the country. NIH grants 
support high-quality research and high-quality jobs to help us 
grow our science and technology workforce, and it helps us not 
only in this country but throughout the world because other 
people will benefit from what we do. And, 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. The 
one thing that binds all of them together is our hope for 
tomorrow. I share their hope. I believe in the promise that 
biomedical research holds, but we are at a crossroads.
    Congress must reject the devastating cuts to NIH proposed 
by President Trump. I have the honor of representing some of 
the most esteemed health centers in the country, if not in the 
world, the University of Maryland and Johns Hopkins. When I 
consider the magnitude of these proposed reductions, I think of 
all the potential that could be lost. I think of all the 
breakthroughs that could go unfunded and the researchers who 
could take their talents overseas. I also think of the 
families, like the Carrs, who have lost children to rare 
diseases; families like theirs have turned their pain into 
their passion to do their purpose, raising money and awareness 
in the hope of saving someone else the grief they experienced.
    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 is 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 of our panelists. And I call on all of my 
colleagues to continue supporting these and other programs with 
strong Federal investments, for this is 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.
    [Prepared statement of Mr. Cummings follows:]
    Chairman Chaffetz. I thank the gentleman.
    The chair notes the presence of our colleague, 
Representative Debbie Dingell, from Michigan's 12th District, 
whose constituent, Mrs. 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 will hold the record open for 5 legislative days for any 
members who would like to submit any written statements, but 
now it's time to introduce our panel of witnesses.
    We're very pleased to welcome Mrs. Tammi Carr. She's the 
mother of Chad, who battled a rare pediatric brain cancer, and 
we're thrilled that she's here and that her family is here.
    But I'd actually like to yield Ms. Dingell, Congresswoman 
Dingell, to help introduce you, Mrs. Carr.
    Mrs. Dingell. 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 CJ and Tommy, and it's the strength 
and courage of all of them that has inspired us in our 
community.
    On September 23, 2014, they got a diagnosis that none of us 
wants to hear, that their son had cancer. She'll tell you that 
detailed story more. After his diagnosis, our entire community, 
not just only in Ann Arbor, but in Michigan and the entire 
country, rallied around Chad and the entire family. We were all 
inspired by Chad's determination and his toughness during his 
battle, and that's how the phrase got coined, ChadTough.
    On November 23, 2015--and I don't forget it because it was 
my birthday--Chad lost his battle, but heaven gained an angel. 
And what I hope that all of us see and hear in following Tammi 
and Jason's example is that 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. So thank you for allowing her to 
be here.
    Chairman Chaffetz. Thank you.
    She is helping to also represent the ChadTough 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 I appreciate you being 
here.
    We're also thrilled to have Dr. Mary Beckerle, who is the 
chief executive officer and director of the Huntsman Cancer 
Institute at the University of Utah Medical School. This is, 
being from Utah--and full disclosure, having worked for John 
Huntsman, Jr., as a campaign manager and chief of staff and his 
family, 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 Innermountain West, we're very, very grateful and thankful 
that Dr. Beckerle is dedicating her life and her talents to 
this very worthy cause. And we're glad to have you share more 
about what the Huntsman Cancer Institute is doing. It is a 
remarkable institution, and we're thrilled that you're here as 
well.
    We also have Dr. Elizabeth Jaffee, who is deputy director 
of the Sidney Kimmel Comprehensive Cancer Center at Johns 
Hopkins University. I would appreciate it if we would have Mr. 
Cummings help introduce her.
    Mr. Cummings. Thank you, Mr. Chairman.
    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 it 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 co-chairing the 
Blue Ribbon Panel and serving the people in Baltimore, and not 
only Baltimore, but the world.
    And so I'm very pleased to have you, and thank you for 
being with us.
    Chairman Chaffetz. Thank you.
    And we also have Dr. Tyler Jacks, who is the director of 
the Koch Institute for Integrative Cancer Research at the 
Massachusetts Institute of Technology, certainly one of the 
most premiere and prestigious universities we have in this 
country, and they have done immeasurable work. And we're 
thrilled, Dr. Jacks, that you're here and joining us as well.
    Pursuant to committee rules, witnesses are to be sworn 
before they testify. So if you will all please all rise and 
raise your right hands.
    Do you solemnly swear or affirm that you will tell the 
truth, the whole truth, and nothing but the truth, so help you 
God?
    Thank you. Let the record reflect that all witnesses 
answered in the affirmative. We normally ask that you keep your 
verbal comments to 5 minutes, but we'll give you great 
latitude. If you're on a roll, keep going. But your entire 
written statement will be made part of the record, and if 
there's any attachments or something else you want to share 
afterwards, that too will be made part of the record.
    But, Mrs. Carr, we will start with you. You are now 
recognized. And by the way, you have to kind of straighten that 
microphone, pull it up close and personal, and make sure that 
the talk button is on. Mrs. Carr, you are recognized.

                       WITNESS STATEMENTS

                    STATEMENT OF TAMMI CARR

    Mrs. Carr. Thank you, Chairman Chaffetz and Ranking Member 
Cummings and members of the committee. My name is Tammi Carr, 
and I'm here today to share about my son Chad Carr and his 
battle with a rare form of pediatric cancer.
    September 23, 2014, as Representative Dingell mentioned, is 
a day that forever changed my perspective on life and on what 
is truly important. That day we took our 3-year-old son Chad 
for an MRI after a fall, an MRI that we had to fight for and an 
MRI that we were told was simply to confirm a possible 
concussion. They told my husband, Jason, and me that the MRI 
would take a couple of hours and not to be worried. Well, about 
3-1/2 hours later, we were a little worried. And when we saw 
the look in the anesthesiologist's eyes when she came to get us 
after the MRI, we knew we were in trouble.
    She said they had found something, and that something was 
cancer. So what, as a parent, is your first reaction when you 
hear that your child has cancer? I can tell you at least ours: 
It was not to panic; it was to fight. Our questions were: How 
do we fix this? What's the first step? How do we get that tumor 
out? And what is the treatment plan?
    To this day, the answer that we received completely blows 
my mind. As our adrenalin was pumping and we were ready for 
battle, we were told: ``I'm sorry. Your son has diffuse 
intrinsic pontine glioma, or DIPG. It's a tumor in the brain 
stem. It cannot be removed. There's really no treatment plan. 
There's a zero-percent survival rate, and he has about 9 months 
to live.''
    So I'm sure mine is not the first story that you've heard 
about a child being diagnosed with cancer. It's sad. It pulls 
at your heart strings, right? But, please, think about the 
reality that we were given. You talk about hope. We were given 
no hope, zero. We weren't given a fighting chance. Our 
beautiful, spunky 3-year-old who had been running around the 
house 2 days before was now given a death sentence. How is that 
possible? How is it possible that Neil Armstrong's daughter was 
diagnosed with the same disease over 50 years ago, and the 
prognosis for our son and the treatment protocol were virtually 
the same today? How is that possible when we live in the most 
technologically advanced country in the world? How is it 
possible that our son was going to die, and there was 
absolutely nothing that we could do about it?
    Well, after pulling myself off the floor of the ICU where I 
seem to have laid for hours, I decided we were not going to 
take that for an answer. That was not going to be Chad's story. 
There had to be a first child to survive, and that child was 
going to be ours. So we did all the research we could into 
clinical trials since there are actually a few dedicated 
researchers that are studying this disease. What we found is 
that they are mostly almost entirely funded by families like 
ours. They've committed their life's work to a disease that is 
unfunded, and they continue to watch children die year after 
year. How can this be okay?
    These scientists do not receive any meaningful Federal 
research dollars because, as we have learned, pediatric cancer 
overall receives only 4 percent of all Federal research 
dollars, and this so-called rare disease, DIPG, doesn't make 
the cut for significant funding. Cancer kills about 2,000 
children every year, and 300 of those deaths are from DIPG. 
Now, that may not seem like a lot of people in the grand scheme 
of things, but when you think of that many children dying year 
after year over so many years, 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. What kind of cancer? 
Brain cancer. I literally believe it's becoming an epidemic. So 
why not focus on the hardest brain tumor to treat, the DIPG 
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 ChadTough Foundation to honor the toughest kid we knew and 
to become part of that change. We are proud to work alongside 
of other foundations and families who are similarly driven to 
make a difference with children who are suffering from DIPG. We 
created many memories as a family during Chad's battle. Chad 
spent every possible moment with his brothers, CJ and Tommy, 
who are here today and who he loved with every ounce of his 
being.
    We shared our story with anyone who would listen, and we 
will continue to do that. We pushed Chad's physicians to think 
outside of the box, and we fought 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 23, 
2015. That is a moment I relive over and over in my head and 
something I think about every day and I will probably think 
about for the rest of my life. It's a moment that no parent 
should ever have to go through. It's a moment that I would not 
wish on my worst enemy, but we are doing our best to survive, 
and we live each day trying to honor Chad and all of the other 
DIPG angels.
    The ChadTough Foundation raised $1.5 million in 2016 for 
DIPG 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 
said, it does, it just 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-percent survival rate, now 
has a survival rate of nearly 90 percent. Chemotherapy was 
developed as a result of pediatric leukemia research. To think 
that the relatively small 4 percent research bucket for 
pediatric cancer research might be getting even smaller? The 
proposed 18 percent cut to the NIH budget would be devastating 
to all pediatric diseases, but especially so to rare diseases, 
such as DIPG, and at a time when there has finally been some 
momentum and discoveries made about the genetic makeup of these 
DIPG tumors.
    In the last 5 years, we have seen explosive advancements in 
genomic data and other tools for cancer researchers to open up 
the battle against the most challenging and deadly pediatric 
cancers. Without Federal funding, though, we are very quickly 
going to lose ground in that battle. Federal funding is 
critical to recruiting the best and brightest scientists into 
pediatric cancer research, and no amount of family fundraising 
like ours 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 funding establishes the baseline to 
ensure that 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 DIPG.
    I ask that, when you consider the proposed cuts to the NIH 
budget, you think about my son Chad and all of the other 
children who were not given a fighting chance and who were not 
even given hope. You picture his face and you think about what 
might have been. Our family and others like ours will continue 
to work tirelessly 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 DIPG will continue 
to have no hope for long-term survival. That is not a future 
that 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.
    [Prepared statement of Mrs. Carr follows:]
    
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]    
    
     Chairman Chaffetz. Thank you. I really do appreciate it.
    Dr. Beckerle, you are now recognized for 5 minutes.

               STATEMENT OF MARY BECKERLE, PH.D.

    Ms. Beckerle. 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 percent.
    Thank you, Chairman Chaffetz, Ranking Member Cummings, and 
committee members, for your sustained interest in federally 
funded cancer research and your tremendous support for our 
sacred mission to really defeat cancer for all of humanity.
    My name is Mary Beckerle, and I serve as CEO and director 
of Huntsman Cancer Institute at the University of Utah. 
Huntsman Cancer Institute is one of 69 National Cancer 
Institute-designated cancer centers. Our national network of 
cancer centers is focused on advancing scientific discovery and 
collaboration to improve cancer prevention and treatment for 
people around the United States and around the globe and for 
children like Chad.
    Research is our best defense against cancer. Everything we 
know about cancer prevention and treatment today is based on 
research, including basic discovery science, which provides the 
new knowledge on which the health of our Nation depends.
    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 percent 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 is a collection of more than 
200 different diseases. One in two men, one in three women will 
receive a cancer diagnosis in their lifetimes. In the USA 
alone, one person dies from cancer every minute of every day--
every minute of every day.
    Today, I want to share some examples of how one federally 
funded cancer center, 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 types of inherited 
cancer, including colon cancer, breast cancer, ovarian cancer, 
melanoma, and others.
    So what does this mean for cancer patients today? Let me 
share a story about Gregg Johnson from Utah, an artist, 
husband, father of two. Members of Gregg's family have a 
disease that we call FAP. Certain family members have inherited 
a gene mutation that causes colon cancer at a very young age. 
Essentially, if you have this mutation, you have 100 percent 
risk of developing colon cancer in your lifetime. Sophisticated 
genetic testing now enables us to identify which individuals in 
Gregg'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, Gregg is 
outliving his family history. Gregg's mother and grandmother 
both died of colon cancer when they were in their 40s, way too 
young. Gregg is now approaching 60 years of age, thanks to 
federally funded research and what we call precision 
prevention, the use of knowledge about cancer genetics to 
prevent cancer.
    Cancer genetics is also very important for children, and we 
are working on this actively at Huntsman Cancer Institute. 
Federal funding for childhood cancer has led to dramatic 
improvements in pediatric cancer survival, a 43-percent 
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 have 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 disease-
related 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 recent advances in cancer 
prevention and care. One underserved group is our rural and 
frontier residents. In the State of Utah, 96 percent of our 
landmass is rural and 70 percent frontier, with less than 100 
or 7 persons per square mile, so very sparsely populated. Many 
of your States also have rural and frontier residents who live 
far from healthcare centers and have relatively poor cancer 
outcomes.
    Federally funded researchers at Huntsman Cancer Institute 
have developed a new approach to deliver genetic counseling by 
telephone to reach people who are living in rural and frontier 
areas. We also developed a new tool for remote symptom 
management to support cancer patients and their families who 
live far away from medical centers while they're undergoing 
active treatment. Great progress in cancer prevention and 
treatment is happening at National Cancer Institute-designated 
cancer centers across our Nation, literally from sea to shining 
sea. Our Federal Government has an unmatched and irreplaceable 
role in supporting robust, 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 percent in fiscal year 2018 
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 lifesaving work. Thank you very much.
    [Prepared statement of Ms. Beckerle follows:]
    
    
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    Chairman Chaffetz. Thank you.
    Dr. Jaffee, you're now recognized for 5 minutes.

              STATEMENT OF ELIZABETH JAFFEE, M.D.

    Dr. Jaffee. Thank you. Chairman Chaffetz and Ranking Member 
Cummings, thank you for your leadership and dedication to this 
promising initiative and innovations that are turning 
previously deadly cancers into chronic diseases that allow 
patients to live long and productive lives.
    Scientists in the United States lead the world in cancer 
research innovation and success, and continued investment will 
relieve cancer suffering for all Americans and hopefully 
prevent cancer development in our future generations.
    I'm the deputy director of the Sidney Kimmel Cancer Center 
at Johns Hopkins, which is an NCI-designated cancer center. And 
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 Cures Act with the 21st Century 
Cures Act is needed, in addition to the ongoing NIH and NCI 
budget allocations, to accelerate in 5 years what would take 10 
years to move new discoveries into treatments for patients with 
cancer. Any cuts would slow future discoveries and innovation.
    In just the last 6 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 in funding on the immune system, patients with these 
cancers would have died of their disease in less than a year. 
Instead, they are 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 have been possible even 5 years ago. As one 
example, the NCI is 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 networks of cancer centers that work together 
to conduct research and clinical trials focused on these rare 
diseases. One of them, the Cancer Immunology Trials Network, 
helped to lead the approval of a new immunotherapy drug for a 
rare form of skin cancer called Merkel cell carcinoma.
    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 populations of cancer 
patients, we narrowed the gap between the minority and non-
minorities who participate in clinical trials by 60 percent 
since 2001. Maryland was once the State with the second highest 
cancer death rate. Those deaths have plummeted in our State, 
and we are 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, and patients, are critical to ensure progress in 
reducing cancer morbidity and mortality. Data from the 
collaborative effort of the Cancer Genome Atlas is used widely 
by researchers to generate genetic models of cancer development 
and drive the next questions in cancer biology and new drug 
development.
    This investment has led to a new area of medicine, as you 
heard about, precision medicine, which utilizes the genetics of 
a patient's specific cancer to determine the best treatment. 
The NCI has since begun a national clinical trial called the 
MATCH trial which pairs patients with tailored options for 
clinical trials based on their tumor's genetics. This is the 
only trial of its kind in the Nation.
    These examples 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, the perceived instability of government funding 
for research due to the threatened reduction in the NCI and NIH 
budget, without significant increases in the past decade, has 
created a crisis where young people are less inclined to pursue 
science as a career.
    People's lives depend on this research. I brought with me 
today Stefanie Joho. She is a colon cancer patient. At 23, 
Stefanie's cancer had spread, and no treatment options were 
available to her. She found Johns Hopkins had a clinical trial 
using a new immunotherapy drug. The underlying scientific 
discoveries leading up to this trial were funded by the NCI. 
Within 3 months, Stefanie's tumor had shrunk 65 percent. More 
than a year later, Stefanie now remains healthy and is able to 
move on with her life.
    The recent successes in science and medicine cannot 
continue without an increased government investment. 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.
    [Prepared statement of Dr. Jaffee follows:]
    
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    Chairman Chaffetz. Thank you.
    And, Stefanie, thank you for being with us. God bless you. 
Glad you're here. Thank you.
    Dr. Jacks, you're now recognized for 5 minutes.

                STATEMENT OF TYLER JACKS, PH.D.

    Mr. Jacks. Chairman Chaffetz, Ranking Member Cummings, and 
members of the committee, thank you for the opportunity to 
discuss the state of cancer research in our country and the 
transformation in cancer care that we are now witnessing. It's 
a privilege to be here today with Mrs. Carr and with my 
esteemed colleagues. My name is Tyler Jacks. I'm the David H. 
Koch Professor and the director of the Koch Institute for 
Integrative Cancer Research at the Massachusetts Institute of 
Technology. I was previously Chairman of the National Cancer 
Advisory Board, and I am 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 
MIT currently focused on cancer genetics and immuno-oncology.
    Along with Dr. Jaffee and Dr. Dinah Singer from the 
National Cancer Institute, I co-chaired the Cancer Moonshot 
Blue Ribbon Panel. Dr. Beckerle served on this panel as well. 
The panel's report described several exciting areas of 
opportunity in cancer research, treatment, and prevention, and 
we look forward to discussing this with you today.
    Let me also express my appreciation to the Members of 
Congress for the passage of the 21st Century Cures Act, which 
was supported by overwhelming margins in both the House and the 
Senate and which includes funding for Moonshot programs for the 
next 7 years.
    Cancer research discoveries made over the last few decades 
have led to powerful new classes of cancer medicines which are 
impacting the lives of thousands of cancer patients today. 
Other discoveries have led to new methods to detect the disease 
at earlier stages when conventional treatments are more 
effective. New insights into cancer etiology and risk factors 
are enabling new forms of cancer prevention and disease 
interception.
    Still, despite this progress, based on current statistics, 
over the next 10 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. 
Thus, although we have come a long way, our job is far from 
completed.
    Today's hearing is particularly timely given the 
considerable uncertainty in the biomedical research community 
regarding President Trump's preliminary budget proposal for 
fiscal year 2018, which recommends a nearly 18-percent cut in 
the budget for the NIH. Such a budget decrease would have 
devastating effects 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 drive 
cancer was extremely limited. Since that time, Federal 
investment in fundamental cancer research has led to dramatic 
advances in the elucidation 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 effects of many of these changes, and there 
are many more to come.
    While the development of these drugs requires significant 
R&D investment from private industry, as well as the 
involvement of clinical investigators, they are 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 percent reduction in cancer death 
rates, there's an approximately $500 billion value to current 
and future generations of Americans. Advances in biomedical 
research also lead to massive investments from the private 
sector, including R&D spending in 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.
    The Federal investment in cancer research in the United 
States has paved the way for this progress. In the not-too-
distant future, targeted therapies, immune-stimulating agents, 
nanotechnology-based drugs, including those developed based on 
progress at my Institution, at MIT, and more will be the 
mainstays of cancer treatment, leading to improved response 
rates, longer response times, and, increasingly, cures.
    The United States has led the world in achieving this 
progress, and we should all feel a sense of pride for these 
accomplishments. Still, there is much more for us to do. Thank 
you again for the opportunity to appear before you today. I'm 
pleased to answer any questions that you might have.
    [Prepared statement of Mr. Jacks follows:]
    
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    Chairman Chaffetz. Thank you. Thank you all. We appreciate 
that.
    We're now going to recognize the gentleman from Florida, 
Mr. DeSantis, for 5 minutes.
    Mr. DeSantis. Thank you, Mr. Chairman. And thanks for 
holding the hearing. I think this has been a phenomenal panel.
    I thank the witnesses. It's a very important issue.
    Dr. Jacks, you mentioned the benefits; that you do the 
research, the breakthroughs that lead 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, which I think was important. 
Obviously, we're going to have to fund that. But, as we get 
breakthroughs, even as a fiscal matter, it seems to me you're 
going to save billions and billions of dollars because most of 
our cancer patients are older. Most of them are on various 
government programs. So 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 that we'll probably save money in the 
long term?
    Mr. Jacks. I think there is no doubt about it. The economic 
benefits 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.
    Mr. DeSantis. 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 that wants to chime in on that.
    Mr. Jacks. 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 Cancer Moonshot and Blue Ribbon Panel. And so we're 
grateful for 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 fiscal year 2016. 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 fiscal year 2017 
likewise had an increase of $2 billion from the Congress. I 
think advances or increases of that magnitude will be important 
for a sustained period of time to allow us to deliver on the 
promise of biomedical research.
    Mr. DeSantis. Now, we do a lot of oversight in this 
committee about how government spends money, and even the NIH, 
you do see studies where they spend millions of dollars on 
studying binge drinking in sororities or stuff the taxpayers 
look at, and I think that should be definitely viewed, and we 
can criticize that. But can you reduce funding for NIH to the 
extent that's being discussed without negatively affecting 
cancer research, Dr. Jacks?
    Mr. Jacks. Absolutely not. If the budget proposal that was 
put forward by President Trump were to be enacted, estimates 
are that zero new grants would be funded next year by the NCI, 
zero new grants. So the simple answer to your question is no. 
We could not pursue the exciting forms of cancer research that 
we're currently undertaking if that proposal were to be 
enacted.
    Mr. DeSantis. Go ahead.
    Ms. Beckerle. Perhaps I can comment as well. About 80 
percent 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 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 would lose a whole generation.
    Mr. DeSantis. I know, because I know there is private money 
that's involved, but it just seems if there is that little 
government money available, then you can't even leverage the 
private as much as you would. Is that fair to say?
    Dr. Jaffee. 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 towards specific 
interests of that private foundation. So we will lose 
innovation in this country if we decrease this budget.
    Mr. DeSantis. Great. Well, I appreciate the testimony. I 
think that this is very important.
    And, Mrs. Carr, thank you. It was great testimony.
    And I think most of the members on this committee believe 
that what you guys are doing is very, very important. And 
there's a lot of different things--we police waste on this 
committee. That's kind of our job, and there's a lot in the 
government that we can point fingers at, but I think this is 
one area where clearly the money that we are 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. So I thank you guys.
    And I yield back the balance of my time.
    Chairman Chaffetz. The gentleman yields back.
    We would like to ask unanimous consent to allow Mrs. 
Dingell to ask the next round of questions.
    Without objection, so ordered.
    Ms. Dingell, you are now recognized for 5 minutes.
    Ms. Dingell. I want to thank all of you. I'm just happy to 
be here to support my friend Tammi.
    So thank all of you, all of the panel.
    Let me just ask some questions of Tammi so we could talk 
about some of the issues and see the challenges.
    The ChadTough Foundation raised over $1.6 million last year 
for DIPG research. Can you talk about the type of research the 
foundation is supporting and your vision for the future?
    Ms. Carr. Yes. Well, for us, in our infancy really, the 
first year of this 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 The DIPG Collaborative. We are a 
small group of family foundations. We are the only people that 
are funding this disease. So we are trying to focus our efforts 
together and not reinvent the wheel. All of our family 
foundations come together in the DIPG 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 is so little 
funding for this disease. So we're really efficient, which I 
figured this committee would appreciate, and we pool our 
resources together to make the biggest impact.
    The ChadTough 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 a research 
professorship at the center through the ChadTough 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. So those are just a couple of examples.
    Ms. Dingell. 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?
    Ms. Carr. 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--you know, 
there are strains on every aspect of their life. They quit 
their jobs. They change their life around. They are 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. And 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 you know, 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, that 
this is--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.
    Ms. Dingell. So I've got 1 minute left, so 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?
    Ms. Carr. I hope that you fight as hard as you can against 
this proposed budget cut. This is just devastating, and you 
know, when I think about DIPG as an example, 2-and-a-half years 
ago, when Chad was diagnosed, they talk about the precision 
medicine. Biopsies for these DIPG tumors were not even 
commonplace. We were not encouraged to get a biopsy on our 
son's tumor because it's in the brain stem and it's dangerous 
and things can go wrong. Now it's become more commonplace. They 
figured out how to do that.
    In this 2-and-a-half years we've seen such progress, 
they've taken--we donated Chad's tumor postmortem, and Michigan 
did some sequencing. We didn't have the biopsy tumor, the 
diagnosis, biopsy tumor, but we had the postmortem, and they 
found a histo-mutation that they never knew existed in DIPG 
before. And when I heard that, you know, they said we know 
some--we have some medicines that we know can impact this, and 
I mean, I lost it. So are you telling me that if we had had 
this information 2-and-a-half years ago, could something have 
been done? And they said, we couldn't have even sequenced this 
tumor this way 2-and-a-half years ago.
    So you think about that progress, and Chad was also, had 
the ability to participate in a trial at Sloan Kettering 
University in New York where it's a CED trial where they insert 
a catheter directly into the tumor because passing the blood 
brain barrier is a big issue for pediatric brain tumors. We 
felt obligated that we needed to do something. If it was not 
going to hurt him, and you know, again, maybe it would--maybe 
it would cure him. At the time, that's what we were thinking. 
That wasn't the case, but they've learned so much from that 
trial.
    And there are so few clinical trials available as it 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, that 
leaves it all in the hands of families like ours. Nothing is 
going to happen from that. I mean, we are doing our best. We 
are doing our best to raise something, but without the support 
of the NIH, all that progress is going to go downhill, and not 
having those new scientists, those new researchers, those 
bright minds say, ``I want to commit myself to making a 
difference,'' if they have no funding, how can they do that?
    It's just to me it's senseless, and when you think about 
600,000 people lost a year, that is--there is nothing worse. 
How can we not be focussing on this? How can this not be the 
number one priority when we talk about budgets? And 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.
    So my thought would be, anything that anyone can do to 
fight these budget cuts, there needs to be increases, not 
decreases.
    Chairman Chaffetz. Well said. Thank you for sharing that. 
Thank you.
    Ms. Dingell. Thank you Mr. Chairman and ranking member for 
including me today.
    Chairman Chaffetz. Thank you. We'll now recognize another 
gentleman from Michigan, Mr. Paul Mitchell is now recognized 
for 5 minutes.
    Mr. Mitchell. Thank you, Mr. Chairman.
    Mrs. Carr, first, let me say I couldn't be more touched by 
your 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's a lot of ways that we can save money in our 
bloated government. I've been here 90 days, and already we've 
seen a variety of ways we could 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've 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 can't be the answer.
    Let me ask you one question. Does anybody have any inkling 
to us to share with us why it is that NIH would only allocate 4 
percent of their money, their grants to pediatric cancer versus 
all the other things? Is there any insight you could provide us 
on why that decision, because it seems to me to be a paltry 
amount, a paltry percentage. Is there any insight as to why?
    Ms. Carr. I agree with you. Four percent is not enough. I 
think our kids deserve a whole heck of a lot more than 4 
percent, and I have fought that from day one. I don't think 
people realize that either. I don't think that's something that 
people realize. You know, they think about cancer, and a lot of 
times you think about kids, right, you know, you see all these 
advertisements with these little bald children and you think, 
okay, that's where my dollar is, that's where they're 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, and you know, pharmaceutical companies don't want to 
invest in something when they're not going to, you know, sell 
thousands and thousands of drugs. I mean, that's the reality of 
it.
    So that's one thing that's--that I could say for sure is 
part of the issue, and it's wrong.
    Mr. Mitchell. Anybody else on the panel can shed some light 
to that?
    Ms. Beckerle. Yeah, perhaps I could 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 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 
metastasis, and the pathway that my lab discovered is 
misregulated in a rare childhood cancer called, ``Ewing's 
Sarcoma,'' and we're actually working on Ewing's Sarcoma as 
part of that research program.
    Mr. Mitchell. Thank you.
    My time is grossly expired. I apologize. Mr. Chair, I'd 
like to suggest maybe we could have a discussion about a 
hearing on oversight of how it is that NIH does make 
determinations of grants and what the percentages are to 
various areas because I think it's worth some discussion.
    Thank you for your patience.
    Chairman Chaffetz. Thank you.
    I now recognize the ranking member, Mr. Cummings.
    Mr. Cummings. Mrs. Carr, I want to thank you 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.
    Ms. Carr. 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 eclectic taste in food. He 
liked miso soup and olive muffalata, and peppers, and he liked 
to have fun. He loved life.
    Mr. Cummings. And you said something that kind of struck me 
when you said--these weren't your exact words, but you said we 
mourn for what could have been.
    Ms. Carr. Every milestone. You know, he would have gone to 
kindergarten last year, or this year. You know, 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. You know, he'd say: 
When my leg starts working again, I want to ride a bike. So 
yeah, it's horrifying, and it isn't right.
    Mr. Cummings. We want you to--you know, one of the things 
that I talk about with my staff is that the limited amount of 
time that we have on this earth, we need, in whatever we do, to 
do everything in our power to be effective and efficient 
because we can spend a lot of time going in circles, and then 
you look back at your life and you're frustrated.
    Dr. Jaffee, when you hear somebody like Mrs. Carr come in, 
if she were to ask you how do I make sure--and the others of 
you can chime in--that I use my energy and the resources and 
hand to be most effective and efficient, what would you tell 
her?
    Dr. Jaffee. 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. 
And so that's what I would tell her, please be our partner in 
this.
    Mr. Cummings. And Mrs. 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 cut.
    Ms. Carr. I know what clip it is.
    Mr. Cummings. Oh, you're familiar with it?
    Ms. Carr. I've seen it.
    Mr. Cummings. Someone going to put it up?
    In this clip, he tries to claim that the massive reduction 
in funding is not really a cut at all.
    [video played.]
    Mr. Cummings. Mrs. Carr, do you agree that NIH is currently 
wasting about $6 billion a year?
    Ms. Carr. No, and I would ask, I wonder if he's ever had an 
experience like ours or known of anybody who has, or President 
Trump, I would ask him the same question because when he says 
it's a waste, without more funding, they're--right now, DIPG 
research, if I specifically look at that, is getting zero 
dollars funded.
    So is it a waste to focus on this disease? Because without 
additional funding, there is zero funding coming. There will be 
nothing. So I don't think focussing on one of the most 
difficult tumors and hopefully seeing some trickle down to some 
of the other more treatable tumors would be a waste.
    Mr. Cummings. So you would agree that both Democrats and 
Republicans need to work together----
    Ms. Carr. I don't think this should be a partisan issue.
    Mr. Cummings. I agree.
    Ms. Carr. I mean, why--think of how many people's lives are 
being lost in this country. More than--anything but axes, I 
just--that, to me, I don't understand how cutting the funding 
mechanism to solve this issue makes sense.
    Mr. Cummings. So just one last thing. I also listened to 
you as you talked about the idea that you wish you did not have 
to go through this. And none of us, unless we've been through 
it, can really put ourselves in your place. But as you were 
talking, I kept going back to what I said to you a little bit 
earlier, that is, 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 into a corner and just said: No, I'm not doing anything. I 
don't want to be bothered. I don't want to go through this. I 
don't want to relive it.
    But you've been able to turn it around, and now I think 
it's something that feeds your soul. I often say that our God 
is a recycling God, taking the pain, quite often, recycling it 
so that it can become something even stronger and better.
    And so I thank you, and sorry you had to go through this, 
but I thank you. But I also thank your son. I understand. 
Doctor. Thank you, Mr. Chairman.
    Ms. Beckerle. 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's 
affected by cancer, and I am 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.
    Ms. Carr. Thank you. And 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's, 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 anybody who wants 
to to help make that happen and make that be his legacy.
    Mr. Cummings. I mean, you are the agent of change.
    Ms. Carr. Well, Chad is.
    Mr. Cummings. Well, yeah, he's working through for you.
    Ms. Carr. Yeah, I'm doing my work for him.
    Mr. Cummings. Thank you.
    Chairman Chaffetz. Thank you.
    I now recognize the gentleman from Tennessee, Mr. Duncan.
    Mr. Duncan. Well, thank you, Mr. Chairman, and thank you 
for calling this hearing.
    And you know, I've been here a long time, and I've served 
on four different committees, and I've heard--I've been in 
hearings on everything that you can imagine, and I don't think 
I've ever heard a kinder, sweeter tribute from one witness to 
another than Dr. Beckerle just did for Mrs. Carr. I think 
that's really, really wonderful, and I can't top it.
    I can tell you. I wouldn't even try. But I will say this. 
You know, I'm so sorry because we all have so many meetings, 
and I really am sorry that I couldn't get here for all of your 
testimony. I'm glad I've heard what I heard so far.
    But I have four grown children and now nine little 
grandchildren, all in Knoxville, and I have--and I really, I'm 
wrapped up in all of them. But I've got a little grandson who's 
just a little bit--he turned four in February, so--and I'm 
really wrapped up in that little boy.
    I got--Saturday, I got to go to his first tee-ball 
practice, and you know, I've always heard it said that the 
worse thing that can happen to you is to outlive one of your 
children, and I don't have any question about that. And it 
just--you know, thinking about did I understand that your 
little son would have been--or was 4 or so when he passed away, 
so I really--I'm so so sorry.
    I can tell you this. Several years ago, I was the first one 
to cosponsor a bill to give the NIH a 100 percent increase in 
funding over a 5-year period. Yeah, over a 5-year period, 20 
percent a year, which I wouldn't have done that for any other 
agency because, you know, 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 
there was an article in the paper yesterday that said it was 
going to be 91 trillion by the official government estimate in 
30 years. I mean, you know, if we sit around, we let that 
happen, we're going to destroy the country, I mean, basically. 
What we'll do, we'll just be printing so much money that it 
will just--everything--they tried that every country in the 
world and it hadn't worked anyplace yet.
    But I can tell you I very much favor medical research, and 
I appreciate the work that you all are doing. I do have to say 
this, though. You know, everybody in the country wants us to 
give them money for medical research, so we've got to try 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--you know, I go every year--I've gone every year for the 
Susan Komen Race for the Cure, you know and the women.
    I say one reason I go, that's the biggest turnout of all 
beautiful women of thousands and thousands in Knoxville. But 
you know, men wouldn't turn out for run against prostate cancer 
the way that women turn out like that. But where are we making 
the most progress or where are we getting the most bang for our 
buck? What would you all say about that, anybody?
    Mr. Jacks. I don't think there's a simple question to that 
answer, Congressman. I think we're getting----
    Mr. Duncan. I figure there wasn't a simple answer.
    Mr. Jacks. Yeah.
    Mr. Duncan. I know there's some kind of answer. We have to 
try to find out.
    Mr. Jacks. Certainly, I think we would all 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 much argument that that is 
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 NIH, and I think the progress that we've made against 
cancer and other diseases really speaks for itself.
    Mr. Duncan. Yes, ma'am.
    Dr. Jaffee. And I'll just add that Blue Ribbon Panel did 
identify 10 areas of priority based on all of the progress 
we've made so far. So in a way, that was a panel 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 the next step and address the challenges 
that still remain, including diseases such as pediatric cancers 
that we're just learning, in the past 5 or 6 years, really 
mechanistically are different. They're different from adult 
cancers, and that was an important piece of information that 
came from NIH funding and basic research. So I think this is a 
very important area.
    Mr. Duncan. Yes.
    Ms. Carr. I had also--I appreciate you saying that because 
that is one thing I think that, you know, 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 focussing more on those 
pediatric cancers, not that there aren't, I agree, there are 
some that are--there's overlap, I understand that, but these 
kids, kids are not adults, and the trickle up approach is where 
I'm thinking it might, make more sense.
    Mr. Duncan. Well, I will tell you, my dad and one of my 
uncles died of prostate cancer, and now I've got a little touch 
of it, so I'm dealing with that. So I'm very much interested in 
what you all are doing, and I'll support you every way that I 
can.
    Yes, Dr. Beckerle. I've run out of time so maybe you can--
--
    Ms. Beckerle. Have I run out of time?
    Mr. Duncan. --say something quickly.
    Ms. Beckerle. Okay. Just very quickly. I think the--what 
you're seeing in the progress today in terms of reduction in 
cancer deaths and increased survivorship is the 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 science based on people following 
their curiosity and discovering new things about how cells work 
that only later did we appreciate are really critical for 
tackling the cancer problem.
    My lab started out working on a protein in chicken 
gizzards, and now I'm working in Ewing's Sarcoma, so you know, 
just one example, but it's really the fundamental science that 
has led to the discoveries and the cures that we have today.
    Mr. Duncan. All right. Thank you.
    Chairman Chaffetz. I thank the gentleman.
    I now recognize the gentlewoman from Illinois, Ms. Kelly.
    Ms. Kelly. I've been on this committee for two terms, I 
think, and I've 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 sharing your family's story 
with us today, and thank you to Jason, and CJ, and Tommy for 
not only fighting for Chad but for fighting for all the 
children who can't fight for themselves.
    Early on in my career, a long time ago now, I worked on 
PIDS, and I worked with St. Jude's patients, so I cannot relate 
exactly because you're a mom, but you know, I saw kids that we 
saved, but I went to funerals also, so thank you so much.
    The role of clinical trials toward discovering life-saving 
medical innovations cannot be overstated. As chair of the 
Congressional Black Caucus, Health Braintrust, my priority 
focus this year is on medical research, priming the provider 
and researcher pipelines, and alleviating barriers, to and 
increasing recruitment of underrepresented communities in 
clinical trials.
    Like you, Dr. Beckerle, I believe that research is our best 
defense against diseases and conditions that strip too many of 
our loved ones and friends of their vitality. And like you, Dr. 
Jaffee, I believe we have to ramp up efforts to identify 
culturally competent solutions to provide the medically 
underserved with accessible cancer treatment.
    My congratulations to you and your team for reducing the 
access gap to cancer, clinical trials between minority and 
nonminority communities. Can you be more specific about which 
minority communities are represented in clinical trials within 
the 60 percent margin you mentioned?
    Dr. Jaffee. Right. So it's a good point. It's mostly 
African Americans from Baltimore. It has a large African-
American community, but we do also have a Hispanic community, 
and we've also increased it in that community as well, but most 
of what we do is geared toward the African-American community.
    Ms. Kelly. What is being done to further eradicate barriers 
to clinicals trials, and what can Congress do to be helpful? 
And I guess, because Mrs. Carr is here also, like you talked 
about, we need to do more around kids, but also in the minority 
communities also.
    Dr. Jaffee. Yeah. So 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 incidences 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 
ineligible if our criteria in our clinical trials were not 
more--a little looser to allow for minimal damage to other 
organs. So that was a really big finding that without the 
research we did, we wouldn't have realized.
    Another issue that's very important is that clinical trials 
are--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 there were a combination of social and medical issues 
that we identified.
    Ms. Kelly. Do you feel like you still deal with the 
Tuskegee Effect----
    Dr. Jaffee. And that's what I was referring to, and 
actually not. Believe it or not, that was not really the issue 
that was raised among our patients. And in fact, the number of 
patients we were seeing in the African-American community was 
not reduced. It was the ones that we were getting on to 
clinical trials.
    And as we've all pointed out, clinical trials are very 
important because most of the cancers we're dealing with are 
not curable, and so we wanted to make sure that African-
American patients as well had access to the best clinical 
trials and were willing to consider them.
    Ms. Kelly. Thank you. I represent the 2nd Congressional 
District of Illinois, and particularly, Chicago is home to two 
of the Nation's 47 elite NCI-designated comprehensive cancer 
centers, the Robert H. Lurie Comprehensive Cancer Center of 
Northwestern University and the University of Chicago 
Comprehensive Cancer Center, and I'm familiar with the work of 
NIH research funded cancer institutions.
    However, I would like your general insight about the 
presence of NIH research universities that are embedded in 
residential and commercial districts. Can you speak to the 
economic activity that NIH research institutions generate both 
within the medical research setting and also the direct 
economic impact that NIH research institutions have on 
surrounding communities, and whoever wants to answer.
    Mr. Jacks. Perhaps I'll start. I direct cancer centers, not 
a comprehensive cancer center. We do more basic foundational 
research, but we are also located nearby to the Dana-Farber/
Harvard Cancer Center, so it's similar to the ones that you've 
mentioned in Chicago. And what we've observed is the investment 
from the Federal Government stimulates private investment very, 
very significantly.
    Kendall Square, where MIT is located, used to be a very 
industrial area, and when I joined the MIT faculty 25 years 
ago, that set of industries was in decline. If you were to 
visit Kendall Square today, you would be amazed at the number 
of pharmaceutical industry, biotechnology companies, medical 
device companies that have now surrounded the MIT campus. Why? 
Because they need to be close to where the action is, and the 
action in our sphere is funded by government grants.
    In Massachusetts alone, there was, last year, $2 billion of 
intercapital investment and the formation of new companies in 
this space, so that's just one indication of the economic 
payback that such investment makes.
    Ms. Kelly. So besides saving lives and the moral compass 
part of it, economically, it makes sense, too.
    Mr. Jacks. Most definitely.
    Ms. Kelly. Thank you all.
    And I yield back the balance of my time.
    Chairman Chaffetz. Thank you.
    I now recognize the gentleman from Alabama, Mr. Palmer for 
5 minutes.
    Mr. Palmer. 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.
    And what I'd like to know is there--I've really been 
working on regulatory issues that have impacted everything in 
the country, and this is for our researchers. Are there any 
unnecessarily burdensome regulations from the FDA or other 
agencies that you think we could modify, change, correct so 
that it doesn't so restrict cancer research?
    Dr. Jaffee. So I'll give it a shot first. So I do work 
pretty closely with FDA. I hold investigator-initiated INDs, 
and I have to say that the FDA is very, very helpful. It helps 
us develop more rapidly drugs because of their large experience 
in drug development.
    I think there has been reorganization recently, to your 
point, that has really helped by bringing cancer under one 
leadership. It's been very, very helpful. I think the progress 
we've made in cancer drug development, immunotherapy 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.
    Mr. Palmer. 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 Alzheimer's but 
not for treatment of the tumor. It seems to be working. And one 
of my concerns is some of the impediments that the FDA puts 
there for people who want to make that choice, and rather than 
having to go to India, to be able to get that treatment here 
and give them a fighting chance, and that's one of my issues.
    Another thing is, just--do you know, off the top of your 
head, how much at the NIH--did you want to respond to that, 
Mrs. Carr?
    Ms. Carr. You know, I will. I would like to actually 
because the community that we're involved in with these 
families that have suffered with children with DIPG, 
unfortunately, at lot of times they're forced to go abroad as 
well.
    Mr. Palmer. Yeah.
    Ms. Carr. They're--you know, they're ahead of the game in 
Australia, in the U.K., Germany, even Mexico in some senses, 
and they have no choice.
    Mr. Palmer. So people think when you go to India, you're 
going off for some exotic treatment, and he's going to 
Bangalore, which is like our Silicon Valley. I mean, this is 
very high tech, it's sophisticated, and then just from a 
personal perspective and I think from the perspective of a lot 
of patients, we need to allow that to happen here. The patient 
needs to have that choice. But----
    Ms. Carr. Totally agree. When there's so much at risk and 
there's so much on the line, parents, at least, are willing to 
do whatever it takes.
    Mr. Palmer. That's right.
    Ms. Carr. And when you are telling someone there's a 0 
percent chance, and someone saying, well, we have this option 
and would you want to try that, you know, to be able to do that 
is important, I think.
    Mr. Palmer. Well, I appreciate you----
    Ms. Carr. Hope.
    Mr. Palmer. I appreciate you getting my attention and 
giving that response.
    I'm from--I grew up in rural northwest Alabama, in the, you 
know, what people would consider dirt poor, and I'm 
particularly interested in what the Huntsmen cancer research is 
doing in rural areas. Is that nationwide?
    Ms. Beckerle. 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, 
other places.
    So for example, the symptom management tool that we 
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. And so we developed a tool that touches base with 
them on a regular basis and with their caregiver, and we found 
that that has really alleviated their symptoms quite 
dramatically and also reduced caregiver anxiety.
    So that kind of thing is a way in which we reach out and 
try and support our rural and frontier patients and their 
families during the course of their treatment. And what we're 
learning in Utah should be relevant around the country.
    Mr. Palmer. If the chairman would indulge me one more 
question. It's an issue that this committee has really been 
focused on, particularly the chairman and Ranking Member 
Cummings, and that is drug prices.
    And I saw a study here from Memorial Sloan Kettering Cancer 
Center, about $3 billion wasted in cancer treatment where the 
drug companies are putting more medicine in the vial than they 
need, knowing that it's more than is needed for the treatment, 
and that medicine is basically being thrown away, and valued at 
about $3 billion.
    Would any of you like to comment on that? Are you aware of 
that? Is that something you're aware of?
    Mr. Jacks. No.
    Mr. Palmer. I would recommend it was--I've got the article 
here. We can--if I may, we'll enter it into the record.
    Chairman Chaffetz. Without objection, so ordered.
    Mr. Palmer. With that, Mr. Chairman, I'll yield back.
    Chairman Chaffetz. I thank the gentleman.
    I now recognize the gentlewoman from Florida, Mrs. Demings 
for 5 minutes.
    Mrs. Demings. Thank you so much, Mr. Chairman, and to our 
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 mention that that's 
really not a large or huge number, but which child would we not 
do everything in our power to save? If there was one child, 
two, or 300, which one would we not do everything within our 
power to save?
    I also understand that ChadTough Foundation is part of a 
larger group of organizations looking for clues to DIPG. 
Together, these groups are funding a registry to collect 
information on the disease. Is that correct?
    Ms. Carr. Yes. The DIPG collaborative that I spoke about 
before has formed the DIPG registry. So when Chad passed away, 
we donated his tumor postmortem, and it was the University of 
Michigan has some of that as well as a physician who is now 
going to Lurie Children's Hospital, and then it is also kept in 
the registry so it can be utilized by scientists around the 
country.
    So that is one investment that this collaborative has made 
to really get the word out that this is a way that we can 
impact research however.
    Mrs. Demings. Last month, NIH announced that it was 
launching its largest study of African-American cancer 
survivors in the United States, drawing on an existing 
population base cancer registry, the Detroit research on cancer 
survivor study would look at factors that affect survivor rates 
among African Americans diagnosed with cancer.
    I know we talked a little bit about that, but Dr. Jaffee, 
could you explain the range of social and biographical 
variables that the study might consider as it relates to cancer 
survival?
    Dr. Jaffee. Wow, that's a good question, and it's not my 
area of expertise, per se, but I would expect that there are 
going to be a range of issues, including what the underlying 
types of diseases the patients have had and what kind of access 
they've had for those treatments because when a patient who's 
healthy gets cancer, it's a lot easier to receive the 
treatments we have than patients who have other underlying 
comorbidities, so I would think that that would be a major 
issue, depending on how much access to good care the patients 
have had prior to developing the cancer.
    And then socioeconomic is important because getting access, 
even through transportation, to the right places is a very 
challenging issue for patients who don't have the means.
    Mrs. Demings. Thank you.
    Dr. Jaffee. I don't know if my other colleagues would like 
to add to that.
    Ms. Beckerle. I would just comment that I think this is one 
of the things that's so important about the National Cancer 
Institute's efforts in that the NCI can really bring together 
these nationwide consortia and registries so we can get 
information about survivorship and outcomes for patients across 
the entire country, and that eliminates the kind of sampling 
error that can happen if you're just looking at one site in one 
State that might be different than what happens in another 
place in the country. So this is a really important 
contribution of the National Cancer Institute to our national 
health.
    Mrs. Demings. Great. Thank you. Using data from the NCI 
childhood cancer study recently published, our research 
revealed a reduction ofsecond malignancies among survivors of 
childhood cancer. Using population data, researchers were able 
to determine that over the course of 15 years or more, children 
treated with lower doses of radiation were less likely to 
develop second cancers.
    Can you comment on the value of this sort of long-term 
research, any of--or yes.
    Mr. Jacks. I'm happy to comment on that. I think what that 
study points out is progress that we've made in understanding 
the consequences of the treatments that we use, and radiation 
is a good example. It's now clear that radiation can promote 
the kind of changes in cells that ultimately lead to cancer, 
and so, therefore, those treatments have to be used at 
appropriate doses and minimized wherever possible. Fortunately, 
that progress is being made and it's playing out in now in the 
observation that there are fewer second malignancies in those 
children.
    Mrs. Demings. Great. Thank you. Doctor.
    Ms. Beckerle. Yeah, I think just related to that. I think 
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 due to the 
radiation or chemotherapy, sometimes psychosocial effects, 
fertility effects, et cetera, and so there are many, many 
things where research is required and will be really helpful to 
address the current unmet needs of individuals who have 
undergone a successful treatment for childhood cancer so that 
we can make it better going into the future.
    Mrs. Demings. Great. Thank you so very much.
    Mr. Chairman, I yield back.
    Chairman Chaffetz. I thank the gentlewoman.
    We'll now yield to the--- or now recognize the gentleman 
from Iowa, Mr. Blum for 5 minutes.
    Mr. Blum. Thank you, Mr. Chairman, thank you to our 
panelists today for being here, and thank you for your 
emotional testimony, Mrs. Carr. I was standing in the doorway 
when you started to testify, and I'm the father of six 
children, and I started thinking about every one of them, and I 
can't imagine what that was like, and I am so proud that you're 
here today, and you've served the cause well, and I'm sure Chad 
is very proud of his mom today as well.
    Ms. Carr. Thank you very much.
    Mr. Blum. Thank you so much for being here.
    Ms. Carr. Thank you.
    Mr. Blum. I have two questions. First of all, there's--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 be, and I'm always concerned, as a 
career businessman, what kind of collaboration is there between 
the disparate research facilities and institutions? Are we 
doing enough to share the information? There's--collectively, 
there's not enough, trust me, there's not enough research going 
on. I'm a huge advocate for what you want, huge.
    But there's a fair amount going on, billions of dollars 
being spent, and I want to make sure that we're sharing that 
information between all of the researchers, so maybe people 
involved in research facilities could--could you give me your 
thoughts? Is there enough collaboration? If there's not, can 
the Federal Government play a role in that like a repository of 
information or----
    Mr. Jacks. If I could begin. You raised an important point 
actually, and I think we're facing that problem increasingly by 
the day because the amount of data that we're generating today 
is greater and greater, you know, because of new technology. So 
the answer is yes, there is considerable collaboration an 
interaction. The National Cancer Institute, cancer centers 
program, would be one example, a network of cancer centers 
throughout the country who interact and share information, but 
there's still a gap.
    And in fact, the Cancer Moonshot Blue Ribbon Panel 
recommended the development of a national infrastructure to 
facilitate the sharing of cancer data, to store it more 
appropriately, to make access easier, to develop the kind of 
software tools necessary to analyze it so as to break down any 
existing barriers that do currently exist to improve that 
situation.
    So there's examples of progress, but there's actually still 
a need, so I think the Moonshot funding that you have funded 
will help us close that gap.
    Dr. Jaffee. And I could give you a few examples of what's 
already ongoing. So we now have, through the NCI's efforts, the 
development of an open access resource for sharing cancer data 
view, the Genomic Data Commons, and they've even 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. Jacks said, one of the Blue Ribbon Panel 
initiatives is to start to increase this and use the funding 
that was given to us from Congress to now increase this 
ability.
    Also, the NCI is developing genomic cloud pilots, and these 
pilots will again expand data sets that will include imaging, 
will include proteomics, immunotherapeutics. So integrating all 
these data sets so that we can really start to look at 
different cancers and better understand the whole tumor 
microenvironment and not just the genetics because there's 
other factors that contribute to it.
    In addition, what it would allow us to do is to look at 
rare cancers and try to use now cancers that have been put into 
this database, it will increase the number. We can now make 
more hypothesis of why patients get these cancers and identify 
targets to develop drugs against.
    Ms. Beckerle. Well, all of us who are in the cancer 
research community are desperately working to improve outcomes 
for cancer patients, and we know that none of us as individuals 
or even with 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. 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 only relevant for a small subset of patients that have 
a particular genomic signature, particular DNA signature. And 
so what that means is that even for a disease like, you know, 
lung cancer that is a relatively common disease, the patients 
with a particular type of lung cancer that might be eligible to 
contribute and to participate on a particular clinical trial 
might represent less than 10 percent, even 1 percent sometimes, 
of the total patients.
    So the only way we're going to really understand whether 
that treatment is going to work is if we have a national 
network in which we find these patients across the entire 
country and bring them together to participate in a clinical 
trial, and that's exactly the kind of infrastructure and 
support that is provided through Federal funding by the 
National Cancer Institute.
    Mr. Blum. My time is expired, but I would just like to say 
there's a lot of things--I'm Republican, a lot of things 
government shouldn't be involved in that we're involved in, but 
one of the things that we should be involved in is researching 
these hideous diseases, and I was for the 21st Century Cures 
Act, and I stand against the President's proposed budget cuts, 
and we need to be spending a lot more, not less, in these 
areas.
    And I thank you very much, and God bless you, Mrs. Carr.
    I yield back my time
    Chairman Chaffetz. I thank the gentleman. I now recognize 
Mrs. Watson Coleman from New Jersey.
    I guess we're going to go to Mrs. Lawrence from Michigan.
    Mrs. Lawrence. Thank you, Mr. Chair. I want to acknowledge 
Mrs. Carr and express my deep condolences for the loss of your 
son. Being from Michigan, we watched the love, the support, and 
your advocacy, and just know that as a Michigander, Chad's 
inspirational fight against cancer and your devotion to raising 
funds and awareness for DIPG is remarkable.
    Ms. Carr. Thank you very much.
    Mrs. Lawrence. I am so proud of you. Not unlike political 
parties, Michigan State and the U of M fans don't often agree 
on everything, however Chad's battle with cancer and your 
commitment to his continuing legacy has crossed across the fan 
lines and united Spartans and Wolverines behind a common cause.
    Cancer research is something that impacts all of us, not 
just Democrats or Republicans. When the President released his 
proposed budget, I was devastated to see the Draconian cuts 
being made to NIH. In your testimony, you discuss the major 
strides that NIH researchers have made toward cancer such as 
leukemia. As you noted, 40 years ago leukemia had a 10 percent 
survival rate. Today, the survival rate is almost 90 percent. 
That represents just one of the countless medical achievements 
that has been made as a result of funding to NIH.
    Mrs. 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 NIH, to 
discuss the merits of research being done by the funding.
    Mrs. Carr. Thank you. We like to call it, in the DIPG 
community, what we hope for is the homerun strategy.
    Mrs. Lawrence. Okay.
    Mrs. Carr. You know, pediatric leukemia was considered a 
rare disease not too long ago. They focused, and I think, you 
know, whether or not you consider DIPG, it's rare, I mean, 
there's no doubt, but brain tumors in general are not rare. 
Pediatric brain tumors are the leading cause of cancer death in 
children. So focussing on pediatric brain tumors 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 that 
if we focus on the hardest tumor and really focus on it and now 
with the momentum that they are--you know, they are able--
there's tissue now. They can study the samples. There--the CED 
and learning about the ability to pass the blood brain barrier 
with a catheter, which was the clinical trial that Chad was a 
part of, if we really focused, I feel like, you know, even 
raising the bar from 0 percent to 2 percent is a movement in 
the right direction.
    And we've seen just at Michigan alone, a lot of researchers 
that are now--because we're willing to provide some funding, 
and there's big room to increase success rates there, that 
they're looking--you know, 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. And as a parent, I can tell 
you one thing, when you're basically deciding on a treatment 
plan for your child, because that's what this is, the doctors 
don't know what to tell you. Radiation is the only thing that 
they know to tell you, which we know now causes secondary 
problems.
    So in the end, if they were to survive, they're not, you 
know, they're not out of the woods. They're going to be other 
secondary cancers, most likely. I mean, Chad received 30 rounds 
of radiation.
    So I think the way we're looking at it is focussing on the 
toughest, allowing that to open the floodgates for the other 
more treatable tumors, and really focussing on those pediatric 
tumors because, again, children are not adults.
    Mrs. Lawrence. I want to thank you again and commend your 
commitment to fighting, and again to say I hope my colleagues 
are able to take your story as a reason for why we cannot allow 
these proposed cuts to NIH to be implemented in the upcoming 
budget.
    And just on a personal note. Everyone strives to have their 
life to be a legacy or to leave their mark or to do something 
that will be reflected in history as a game changer. Your son 
did that.
    Ms. Carr. Thank you.
    Mrs. Lawrence. And with your fight, his life has--will mean 
so much more to so many people, so thank you so much.
    Ms. Carr. Thank you. We really believe that his 5 years, 
he's accomplished more than most people----
    Mrs. Lawrence. Yes.
    Ms. Carr. --accomplish in their whole lives.
    Mrs. Lawrence. Thank you so much.
    Chairman Chaffetz. Thank you.
    We'll now recognize the gentleman from Wisconsin, Mr. 
Grothman for 5 minutes.
    Mr. Grothman. Sure. Just a general question. What are the 
funding requirements for 21st Century Cures and NIH's work in 
cancer research?
    Mr. Jacks. What are the funding requirements?
    Mr. Grothman. Yeah.
    Mr. Jacks. Are you talking about the nature of the 
applications or that sort of thing?
    Mr. Grothman. No. How much do you anticipate----
    Mr. Jacks. Oh, I see.
    Mr. Grothman. Yeah.
    Mr. Jacks. Well, we outlined several recommendations, each 
of which has a pretty broad scope. Frankly, the monies that 
came through the 21st Century Cures Act are a start to begin to 
accomplish those goals, but I don't think we can accomplish all 
of them with the monies allocated, but it will certainly be a 
helpful start.
    Mr. Grothman. Can you give me the dollars numbers that 
think?
    Mr. Jacks. Well, the current allocation for this year is 
300 million. I think it could have been easily two or three 
times that amount, and we could have spent the money wisely.
    Mr. Grothman. Okay. Is there any way you can prioritize 
research better that you can shave that down at all? I guess 
you're telling me no.
    Mr. Jacks. Well, within that specific program, we worked 
very, very hard in this Blue Ribbon Panel to create a series of 
prioritized recommendations. So I think what you've got there 
is our best effort in a particular form of cancer research, a 
more mission-focused form of cancer research. So that is our 
set of priorities for that particular program.
    I should add, that funding, in our view, does not in any 
way replace the standard appropriation to the NIH or the NCI, 
which is much more substantial and provides funding across a 
wide range of areas of discovery research.
    Mr. Grothman. I understand a lot of what 21st Century Cures 
did is very necessary. I'm about the cheapest guy up here, and 
I've ordered for it because I do know how important, not just 
research as for cancer but other things as well, and all the 
people affected by them.
    We just touched upon brain tumors in children. Do you know 
how many different institutions around the country are maybe 
doing work in this area?
    Mr. Jacks. Mrs. Carr may know better.
    Ms. Carr. I'm not really sure how many are focussing. I 
think I know, again, at Michigan we are trying to create a 
brain tumor center where that's what they focus on, so I don't 
believe anything exists like that currently, not that there are 
people doing research all over. And as far as DIPG, that brain 
tumor, there is several. There is some very phenomenal 
researchers at Stanford and Sloan Kettering and SickKids in 
Toronto.
    Mr. Grothman. Right. I guess what I'm trying to get to is, 
cancer in general--or maybe I'll give you this question in 
general. I know we do a lot of research in Wisconsin, a huge 
amount of research on cancer in Wisconsin and have been doing 
it for many years.
    If I just asked you in general how many different 
universities around the country are doing cancer research, 
would you be able to answer that for me.
    Mr. Jacks. I would say, of the research universities in 
America, all of them have programs that relate to cancer. The 
McArdle Cancer Center from Wisconsin is one of the leading 
ones, and that kind of broad-based effort is, frankly, 
necessary for a variety of reasons. One, there is a lot to be 
learned, and we want to draw on the resources across the 
country. And, two, you actually want to train the individuals 
in your States to become biomedical researchers and scientists. 
And so that has to be done on a national level as well.
    Mr. Grothman. I guess what I'm getting at is you have two 
competing interests here, 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's something that 
people at MIT think are going to work that other people think 
would never work. And if you had a top-down approach, they 
would say ``don't go there,'' but you're able to go there and 
find good things. On the other hand, you have a concern that, 
if there are many places around the country, you may be 
duplicating efforts. You may not be coordinating with each 
other.
    And that's what I'm getting to. If there are--you tell me--
40, 50, 60 different places around the country doing cancer 
research--maybe there aren't. I don't know. Maybe there are 20. 
Maybe there are 80. That's why I asked you. Are we--where do 
you think we are in that conflict or competing goals? You know, 
make sure that everybody is independent and can do something if 
it's against conventional wisdom, but on the other hand, you 
don't want to have four people doing the same thing or somebody 
doing research that they found out in another place around the 
country is not effective 5 years ago.
    Dr. Jaffee. I think that's a really complex question. It's 
a really important one. It's just really complex to give you a 
straight answer, but I think there are a couple of facts that 
we do know. And that is if you look around the country at the 
different cancer centers, there's different expertise at 
different cancer centers. So, as you point out, how many places 
do brain cancer? Not that many.
    And it's also geared toward what funding is available. So, 
currently, the funding is pretty tight at the NIH and the NCI. 
We used to get about 25 to 30 percent of grants funded. Now 
we're down to between 10 and 14 percent. That limits what can 
be done. We believe, based on review groups, that there's much 
greater amounts of good research than that's being funded. So I 
suspect that the review process is one way to prevent 
duplication.
    Mr. Grothman. It just scares me like when you say you're 
not sure how many places around the country are doing research 
on brain tumors and young kids. And I would have thought people 
in your position would say, ``Oh, yeah, we're doing it at UCLA, 
and we're doing it in Georgia, and we're doing it in Wisconsin, 
and we're doing it in Michigan.'' But you don't know, do you?
    Dr. Jaffee. Well, because there aren't many places that do 
it. That's the problem. Like if you ask me about immunotherapy, 
I could tell you there are five places that do immunotherapy 
around the country in a big way. But I can't tell you about 
brain tumors because I can't, other than thinking, well, St. 
Jude's probably does some brain tumors because they're a 
pediatric, but there's no brain tumor institute.
    Ms. Carr. And that's really what we have been trying to 
focus on doing. And when you talk about DIPG--and it's, again, 
a small, rare tumor--the folks that come together to fund that 
effort, that's what we do as a collaborative. We make sure that 
every proposal that comes through because there's so few of us, 
and there's so little money there, that we don't--the 
duplication of efforts, that's something that we don't want to 
see happen.
    Mr. Grothman. It just concerns me that you don't know. And 
like I said, I would think you would show up here and at least 
one of you, and maybe there is somebody else who wasn't invited 
here today, but somebody would say, ``We are doing cancer 
research in these 80 institutions, and these are the 
specialties of the 80 institutions,'' and just have it here.
    Mr. Jacks. It's probably important for you to know whom 
you're speaking with. We represent particular institutions. If 
you were to ask the director of the National Cancer Institute, 
I think he would have an answer for you. And sometimes it's 
difficult to know in the sense--for example, at MIT, last year, 
we announced a new initiative on pediatric brain cancers. Now, 
my colleagues probably don't know that because it was a local 
effort.
    Mr. Grothman. But they should know it, right?
    Chairman Chaffetz. The gentleman's time has expired.
    I will now recognize the gentleman from California, Mr. 
DeSaulnier.
    Mr. DeSaulnier. Thank you, Mr. Chairman.
    I just want to really thank you and the ranking member and 
all of the panelists. This is a personal issue for so many of 
us, and 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 Democrat from the San Francisco 
Bay Area, I think cost-benefits are important. Last hearing of 
this committee I believe last week talked about the Department 
of Defense and an audit by the business community and McKinsey 
that there is $125 million worth of waste in their budget. Yet 
the administration is suggesting taking money away from NIH to 
put in their budget. So, before we do that--and by the way, 
that hearing was bipartisan, as this one is, in terms of 
applying our oversight and making sure we get the best return 
for investment for taxpayers in the Department of Defense. But 
to jump to the conclusion that we should give them money at the 
expense of NIH I just find appalling.
    And on that level, just the cost-benefit, every dollar 
invested in NIH returns almost $8.50 in extra spending. Just on 
the genome project, it has resulted in nearly a trillion 
dollars of economic growth. All of these things I learned 
because, when I was elected to Congress 3 years ago, I 
unfortunately joined the club. Fortunately, what I have is 
chronic lymphocytic leukemia. And during the process, there 
were ups and downs as to my mortality, but as has been 
testified earlier, 20 years ago, there was a 10-percent 
survival rating. Now there is a 90-percent survival rating. So, 
having been involved in this and absorbed myself in the history 
and having now talk to Dr. Mukherjee and Dr. DeVita and read 
their books and gone to NIH and spent multiple times at the 
University of California at San Francisco, which we proudly say 
in the Bay Area say is the second largest recipient of NIH 
funding, and we're hoping to surpass Johns Hopkins at some 
point, and then spending time at Stanford and my local 
hospitals, it's really remarkable--and a lot of this goes to 
the survivors, the family members, who have found their voice 
and the voice that you have expressed today.
    I mean, your son clearly is here in our presence today, and 
you know that, but it's not a trite thing to say that your 
experience. So, in my case, reading back, Sidney Farber, having 
grown up in Boston, having looked at the Jimmy Fund 
advertisement at Fenway Park as a young person and now, never 
knowing what that was about, and now knowing that that was both 
an initiative by people who cared to come in front of Congress 
and convince Congress and President Nixon to sign the 
legislation that helped start all of this. So the synergy, but 
then understanding that--and I'm cautioned by people in my own 
district, ``don't get carried away''; ``there's no cure.'' For 
instance, in my instance, people at NIH, wonderful researchers, 
you go out there, and it's hard to believe the value we get, 
and I know Mr. Raskin will speak since he represents that area. 
These young nameless people who are heroes who have saved my 
life and millions of other people's lives.
    So, in that context--and then seeing what this brings in 
value added around the world. They showed me a map of all the 
affiliated relationships they have around the world. It's like 
a military map. And the moral high ground that we get as 
Americans by doing that and speaking to the chief researcher 
out there and how many times he's been to China because China 
is trying desperately to replicate what we have here, it's just 
staggering to me that 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 in average life expectancy of the period from 
1970 to 2000 have an 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 had, he would sprinkle 
some water on me and tell me to go enjoy as much of my life as 
is left. Now, as has been said, I hopefully will have an 85-
percent survival rating. But a lot of that, back to pediatric 
research, we know that Dana-Farber was because people, when you 
read the stories of young people dying of leukemia and what I 
have, it was because the moral obligation for Americans was to 
invest in that.
    So, just briefly, in conclusion, one of the things that 
I've tried to work on and starting a Survivors Caucus, which I 
hope as many Members join as possible--and it's very broadly 
defined--is talking to Dr. Mukherjee and Dr. DeVita, and I hope 
they will come to speak to this group, and I hope you will come 
as well. One of the things has been communication. We do a bad 
job of communicating the amazing return on investment. And then 
the communication from the medical industry to people who have 
been impacted by this.
    So Mrs. Carr, you are an example of that voice. How can we 
do better?
    Ms. Carr. 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 and thinking about, how can I 
help make that change? How can I help do something? You guys 
are in the position to actually make that happen. I mean, we 
can talk to you all we want, but people in these rooms are the 
ones that--are the ones that can make things happen. So, I 
mean, for me, that's what I would say. You guys hold all the 
power.
    Mr. DeSaulnier. Well, we can't do that without your voice.
    So thank you, Mr. Chairman.
    Chairman Chaffetz. Thank you.
    We'll now recognize the gentleman from Maryland, Mr. 
Raskin, for 5 minutes.
    Mr. Raskin. Mr. Chairman, thank you very much.
    I am, indeed, the Congressman from NIH, from the Eighth 
Congressional District in Maryland, and the NIH is very much in 
the heart of my district. And being the Representative from 
this area, I know intimately, and I keep close track of all of 
the research that's going 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 that are taking place at the NIH.
    But I also want to speak as a survivor, and I wasn't aware 
of a Survivors Caucus, but I would be delighted to join you, 
Mr. DeSaulnier, in that. I had colon cancer back in 2010. I was 
then teaching at American University Law School, and I was a 
State senator.
    But I read an essay by Susan Sontag in which she said 
something that was very poignant, which is that everybody is 
born with two passports, a passport to the land of the living 
and the healthy and a passport to the land of the sick. And all 
of us are going to have to use both passports at some point in 
our lives. What's striking to me, though, is that those people 
who have gone through it or have had an immediate family member 
go through it, look at something like a proposed $6 billion cut 
in NIH medical research budget and are horrified by it, I mean, 
are just astounded. And then people who have not been directly 
touched go about their business.
    So my question for you, Mrs. Carr, and thank you for your 
wonderful testimony, is basically how do we maintain the 
consciousness of both passports and the coexistence of these 
two lands? I remember when my chemo ended, the very last one, 
feeling as if I had suddenly returned to a place from a very 
long, harrowing trip that I had been on. But how do we make 
that consciousness permeate the country?
    Ms. Carr. I think it's hard. I mean, I can tell you, I 
didn't know a lot of these things before I had to know them. I 
didn't know that pediatrics only received 4 percent funding. 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 they 
feel sorry, but hopefully they really think about that impact. 
And I think having these three here talking about, you know, 
there are benefits to research beyond just saving people right 
now. These are huge financial implications, and there's so much 
there. I don't want--I tell people, you don't get it until you 
get it. Unfortunately, though, I don't want people to join that 
club.
    So I think as many advocates as we can build for helping to 
share our story, because, again, there are only so many of us, 
thank goodness, that have lost children and only so many of 
those that actually want to share their story. So creating more 
advocates amongst people in this room who can then do that and 
help us in those efforts.
    Mr. Raskin. Yeah. Let me ask a question of Dr. Beckerle. 
One of our great American aphorisms--I think it's attributed to 
Ben Franklin--is that an ounce of prevention is worth a pound 
of cure. I know--I gave a little speech yesterday about 
Alzheimer's disease and did some research and found that we 
spend 250 times more treating people with Alzheimer's disease 
through Medicare and Medicaid alone than we do on researching 
to get a cure for Alzheimer's, which is now beginning to spiral 
out of control. I mean, the jumps in the number of people who 
are suffering from Alzheimer's and are going to 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?
    Ms. Beckerle. 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 investments in 
the development of new treatments for people who are already 
affected by cancer, but we now know that probably about 50 
percent of all cancers could be prevented. And this is by 
cessation of smoking in some cases and also understanding of 
inherited risk and screening and early detection that can 
either improve cancer outcomes or prevent the disease. I think 
you're absolutely right. I think we now have enough scientific 
knowledge that it is time to really put some dedicated focus on 
cancer prevention.
    One of the areas of the Blue Ribbon Panel was a focus on 
what we call precision prevention and capitalizing on our deep 
knowledge about cancers that run in families. We know that 
there are at least 50 different types of inherited cancer, and 
if we could identify everybody in the country that had that 
inherited predisposition and screen those folks, we might be 
able to prevent them from developing untreatable disease.
    In the case of Lynch syndrome, which we have heard about 
from Stefanie--Stefanie, right? Okay. Good. We know that there 
are about a million people in the United States that have Lynch 
syndrome, which causes a predisposition to colorectal cancer, 
uterine cancer, and a number of other cancers. Only about 5 
percent of the people who have that syndrome know they have it. 
So what that means for them is they are doing the right thing 
going and getting a colonoscopy at age 50, but because they 
have Lynch syndrome, they are developing colon cancer way 
before they are starting their screening. So, if we know who is 
at risk, we can prevent those cancers from developing in the 
first place. Save lives. Save money.
    Mr. Raskin. Thank you.
    I yield back, Mr. Chairman.
    Chairman Chaffetz. Thank you.
    I will now recognize Ms. Watson Coleman from New Jersey.
    Mrs. Watson Coleman. Thank you, Mr. Chairman, for calling 
this hearing.
    Cancer is a very, very personal thing for me. In 1983, my 
mother was diagnosed with lung cancer, and the doctor told us 
that it did not respond to chemotherapy, nor was it operable. 
So we actually were very fortunate to get her into a protocol 
in Johns Hopkins. We lost my mother to that cancer within the 6 
months period of time that the doctor said it was going to 
happen. But, nonetheless, we had some hope during that period 
of time because we knew that we were actively engaged in some 
cutting-edge monoclonal antibodies, immunotherapy, that kind of 
thing.
    I lost my father to renal cell carcinoma. I have a niece 
now that's living with thyroid cancer. I lost cousins to other 
lung cancers and leukemia. So there is 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 is not personally touched by cancer, whether it's 
pediatric cancer--and Mrs. Carr, God bless you for using your 
tragedy to save so many more lives. You are such a courageous 
woman--but just all the different cancers.
    So I think that this budget is really very--no one thought 
through this issue. I don't think anyone is going to support, 
even in Congress, taking money away from the National 
Institutes of Health. But it's more than cancer. I mean, it's 
diabetic. I'm diabetic. I certainly would like not to be on the 
kind of medication I am on. There are so many things that are 
happening that could possibly impact me even as an adult, let 
alone--there are 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, 
evaluation, to get at a person like me, and I represent a good 
number of people in this country.
    So I just want you to know that I will fight as hard as I 
can to make sure 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.
    Chairman Chaffetz. Thank you.
    Thank you. We're at the conclusion here, and I want to, 
first of all, thank Dr. Jacks, Dr. Jaffee, Dr. Beckerle. You do 
some very rewarding work, work that affects every single 
American. To those that 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 
breakthrough that may have come from something we didn't think 
it was going to come from. If it was easy, I'm sure you would 
have already solved it.
    So you're tackling some of the most difficult things that 
face our Nation. And we do have a duty and an obligation to not 
only hear the stories and listen, but also to fund it. And 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 will 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, but we 
would like to hear from very specific scientists talk about 
some of the most promising efforts. I think if Members were 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, you'll turn on everything from 
``60 Minutes'' to something else, and there's a big 
breakthrough that's right on the verge and may be happening. We 
would also like to hear those stories. I think that would help 
Members get a better grip. 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 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 Stefanie, thank you for being here. I appreciate it. I'm 
very glad that you came, and we wish you obviously nothing but 
the best.
    To CJ and Tommy, pretty boring, huh? Yeah, I would agree 
with you. 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 Congress, believe me. But to your mom and 
dad, thanks for their strength and sharing your story, and it 
is impactful, and we do appreciate it.
    And, obviously, ChadTough, 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 who have gone through some things 
too and would probably--you go to places you don't want to go, 
right? You don't want to be a 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 things, and so 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.
    The committee stands adjourned. Thank you.
    [Whereupon, at 11:51 a.m., the committee was adjourned.]