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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 

( 

Available via the World Wide Web: http://www.fdsys.gov 

http://oversight.house.gov 


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COMMITTEE ON OVERSIGHT AND GOVERNMENT REFORM

Jason Chaffetz, Utah, Chairman 

John J. Duncan, Jr., Tennessee 

Darrell E. Issa, California 

Jim Jordan, Ohio 

Mark Sanford, South Carolina 

Justin Amash, Michigan 

Paul A. Gosar, Arizona 

Scott DesJarlais, Tennessee 

Trey Gowdy, South Carolina 

Blake Farenthold, Texas 

Virginia Foxx, North Carolina 

Thomas Massie, Kentucky 

Mark Meadows, North Carolina 

Ron DeSantis, Florida 

Dennis A. Ross, Florida 

Mark Walker, North Carolina 

Rod Blum, Iowa 

Jody B. Hice, Georgia 

Steve Russell, Oklahoma 

Glenn Grothman, Wisconsin 

Will Hurd, Texas 

Gary J. Palmer, Alabama 

James Comer, Kentucky 

Paul Mitchell, Michigan 

Elijah E. Cummings, Maryland, Ranking 

Minority Member 

Carolyn B. Maloney, New York 

Eleanor Holmes Norton, District of Columbia 

Wm. Lacy Clay, Missouri 

Stephen F. Lynch, Massachusetts 

Jim Cooper, Tennessee 

Gerald E. Connolly, Virginia 

Robin L. Kelly, Illinois 

Brenda L. Lawrence, Michigan 

Bonnie Watson Coleman, New Jersey 

Stacey E. Plaskett, Virgin Islands 

Val Butler Demings, Florida 

Raja Krishnamoorthi, Illinois 

Jamie Raskin, Maryland 

Peter Welch, Vermont 

Matt Cartwright, Pennsylvania 

Mark DeSaulnier, California 

John P. Sarbanes, Maryland 

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 


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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 


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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 

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fend 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 


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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 

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rected 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 highquality 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. 


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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. 


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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 


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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 socalled 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, 


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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. 

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search 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:] 


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Thank you, Chairman Chaffetz, Ranking Member Cummings, and Members of the 

Committee. My name is Tammi Carr and I am here today to share about my son, Chad Carr, and 

his battle with a form of pediatric cancer. September 23, 2014 is the day that forever changed 

my perspective on life, and on what is truly important. That day we took our three-year-old son 

Chad for an MRI after a fall: An MRI that we had to fight for; an MRI that we thought 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 after three and a half hours, we were 

worried. And when we saw the look in the anesthesiologist's eyes after the MRI was complete, 

we knew we were in trouble. She said they had found something -- and that something turned 

out to be a brain tumor. 

So as a parent, what is your first reaction when you're told that your child has cancer? I 

can tell you that it is not to panic, it is to fight. You ask: How do we fix this, what is the 

treatment plan, when do we start, how do we get that tumor out? Your adrenaline starts pumping 

and you are ready for the battle ahead. So we asked those questions and we got answers that to 

this day I honestly can't wrap my head around: "I'm sorry, your son Chad has Diffuse Intrinsic 

Pontine Glioma (or DIPG). It is a tumor in the brain stem. We cannot take it out. There is really 

no treatment plan. There is a zero-percent survival rate and he has about nine months to live." I 

am sure mine is not the first story you have heard about a child being diagnosed with a deadly 

cancer. It pulls at your heart strings and it's sad. But stop, and really think about what I have 

told you. Think about the reality that we were given. We weren't given any hope; we weren't 

given a fighting chance. Our beautiful, spunky, healthy three-year-old was just given a death 

sentence. How is that possible? How could it be possible that Neil Armstrong's daughter was 

diagnosed with this same disease over 50 years ago, and the prognosis for our son was virtually 

the same as it was for her? How is it possible that we live in the most technologically advanced 

country in the world and nothing had been done to make progress? 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 up off of the floor ofthe ICU where !lay flat on my face for 

what seemed like 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 it was going to be my son. 

So we did all of the research we could into clinical trials, since there actually are a few dedicated 

researchers working on this disease. What we found is that they are almost entirely funded by 

families like ours. They have committed their life's work to a disease that is basically unfunded, 

and they have 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 four percent of all federal research dollars, and this so-called "rare" disease 

DlPG doesn't make the cut for significant funding. Cancer kills about 2,000 children in this 

country every year, and about 300 of those deaths are from DIPG. That may not seem like a lot 

of people in the grand scheme of things, but when you think about that many children dying 

every year, over so many years, you start to understand the thousands and thousands of years of 

life that these children never see. How many more families need to be impacted, and how many 

more lifetimes lost, before something changes? We also learned that second only to accidents, 

cancer is killing more children than anything else. And what kind of cancer? Brain cancer. So 
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why not focus on the hardest brain cancer to treat, the DIPG tumor that was slowly taking away 

Chad's ability to walk, talk, swallow, and ultimately to live? Surely if you make inroads with 

that most difficult type of tumor, wouldn't that open up the flood gates for the more treatable 

tumors? That made sense to us. So while we were in the midst of the fight 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 to children who are facing 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. And we shared our story with anyone who would listen. We pushed Chad's 

physicians to think outside of the box, and 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 November 23, 

2015. That is a moment I relive over and over in my head. It is something I think about every 

day, and likely will for the rest of my life. It is a moment that no parent should ever have to go 

through. It is a moment that I would not wish on my worst enemy. But we are doing our best to 

survive. And we live each day trying to honor Chad and all of the other DIPG Angels. 

The ChadTough Foundation raised over 1.5 million dollars in 2016 for DIPG research in 

honor of our son. Today our family is more focused than ever on being part of making progress 

against this disease, but it is just a drop in the bucket of what is really needed. Families who 

have lived a reality that no parent or grandparent or sibling would ever want to know should not 

be alone in this fight. And believe me, this can become reality for anyone. We sure never 

thought it would happen to us. No one knows who it will be today or tomorrow. 

When 1 hear about potential cuts to the Nationallnstitutes of Health (NIH), it honestly 

hits me right in the gut. There have been such great strides made around pediatric cancers 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 ten 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, four-percent research bucket for pediatric cancer research might be getting even 

smaller? The proposed eighteen-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 DIPG tumors. 

In the last five 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, we very quickly lose ground in the battle. 

Federal funding is critical to recruiting the best and brightest scientists into pediatric 

cancer research, and no amount offundraising by family foundations can 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 

research, but NIH funding establishes the baseline to ensure that the research is pursued in the 

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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. 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. 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 we can accept; for these children, it is no future at all. Our children deserve more. 

We must do better. 

Thank you, again, for the opportunity to speak to you today. I would be happy to answer 

any of the Committee's questions. 

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13 

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 


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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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Committee on Oversight and Government Reform 

United States House of Representatives 

March 29, 2017 

Federally Funded Cancer Research: Coordination and Innovation 

Testimony by Mary C. Beckerle, PhD 

Chief Executive Officer and Director 

Huntsman Cancer Institute at the University of Utah 

Distinguished Professor, Biology and Oncological Sciences 

Salt Lake City, UT 

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Thank you Chairman Chaffetz, Ranking Member Cummings, and Committee members for the invitation to join 

you to discuss innovation and coordination in federally-funded cancer research. 

My name is Mary Beckerle and I serve as CEO and Director of Huntsman Cancer Institute at the University of 

Utah. I also oversee a research laboratory at HCI that has been funded by the National Institutes of Health 

(NIH) for over 25 years. My work is focused on fundamental aspects of cell biology and the application of this 

knowledge to a bone cancer called Ewing sarcoma. I also served last year on the NCI's Cancer Moonshot Blue 

Ribbon Panel. 

Huntsman Cancer Institute (HCI) is one of 69 National Cancer Institute (NCI)-designated cancer centers, the 

highest designation possible for a cancer research institution. NCI-designated cancer centers undergo rigorous 

peer review by national cancer experts and thought leaders and must demonstrate depth and breadth of 

cancer research that spans from bench to bedside. Simply put, the goal of the Cancer Centers Program is to 

accelerate scientific discovery to improve cancer prevention and treatment. The Cancer Centers Program 

provides a national network for innovation and coordination that promotes collaboration and synergy to make 

the whole greater than the sum of the parts. 

HCI is the only NCI-designated Cancer Center in the five-state Mountain West, which represents 17% of the 

continental landmass of the United States. The area we serve includes Utah, Nevada, Montana, Wyoming, and 

Idaho. Cancer patients and their families come to HCI from this entire region and beyond to access advanced 

cancer knowledge and care, including clinical trials that explore the most promising new cancer treatments. 

HCI is a hub for innovative cancer research with over 4 75 active research projects, which collectively were 

supported with $62.9 million in research grant and contract funding in 2016. 

Research is our best defense against cancer. Everything we know today about caring for people with cancer is 

built on decades of research, including basic discovery science, which provides the foundation on which the 

cancer prevention and treatment strategies of today - and tomorrow- depend. 

We are in an incredibly exciting and promising time in cancer research, and our national investment is having 

an impact. Consider the following: 

The cancer death rate has declined by 1 percent each year for more than two decades, resulting in 

more than 1 million lives saved. 

The number of cancer survivors in the USA has quadrupled since the 1970s, reaching 15.5 million 

this year. 

According to the most recent AACR Cancer Progress Report, in just the last 18 months, the FDA 

has approved 17 new drugs to treat a variety of cancers. These treatments are saving and 

improving lives, and they only exist because of research. 

In addition to the tremendous health benefits of the federal investment in cancer research for the health of our 

citizens, this investment also contributes to our economy and helps to retain our nation's prized status as the 

world leader in science and innovation. 

Despite our great progress, we have much more to do. Cancer is complex: cancer research has taught us 

that cancer is not a single disease as originally envisioned when the War on Cancer was initiated in 1971 

during the Nixon administration, but rather is a collection of more than 200 different diseases. 

Cancer remains the major medical challenge of our time: today, one of every four deaths in our country is 

caused by cancer; we lose one person every minute of every day to this disease. Cancer is the number one 

cause of disease-related death among children in the USA. This year, in the United States alone, nearly 1. 7 

million people will receive a cancer diagnosis. 

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Today, I want to share some concrete examples about how one federally funded Cancer Center, 

Huntsman Cancer Institute, is making a difference for cancer patients and their families. I will describe 

how our goals are coordinated with national strategic cancer priorities, as well as aligned with the 

cancer burden in our State and region. 

Cancer Genetics and Colon Cancer: 

At HCI, a major focus is cancer genetics. HCI is the steward of the Utah Population Database, the largest 

genetic database of its kind in the world, with over 25 million records. In a way that fully protects individual 

privacy, infonmation in the database, including "family trees", can be linked to clinical records, so we can detect 

cancer that runs in families and study cancer in the population of an entire State. This has allowed Utah 

scientists to discover the genes responsible for many inherited cancers, including colon cancer, breast and 

ovarian cancer, and melanoma. 

What does this mean for patients? Consider this story about a Utah man named Gregg Johnson and his family 

history of colon cancer. 

Members of Gregg's family have a disease called "FAP". Certain family members have inherited a gene 

mutation that means they almost certainly will develop colon cancer in their lifetimes. Sophisticated genetic 

testing has enabled us to identify which individuals in Gregg's family are at high risk for colon cancer and 

ensure that they are advised about cancer screening options that can detect cancer early when it is treatable, 

or prevent the cancer from developing in the first place. 

Back in Utah, Gregg Johnson is hoping to outlive his family history. He shared his story with Vice President 

Biden when the Vice President visited Huntsman Cancer Institute in 2016. Gregg stood before a diagram of his 

family tree and pointed to his grandmother and his mother, both of whom died of colon cancer when they were 

in their 40s. Gregg is now approaching 60 years of age, thanks to genetic knowledge and annual 

colonoscopies to find and remove pre-cancerous polyps. We call this general approach "precision prevention" 

This is a promising area that was highlighted as a strategic opportunity by the Cancer Moonshot Blue Ribbon 

Panel. 

Meanwhile, federal funding has continued to advance science to help families like Gregg's by supporting the 

study of the FAP cancer pathway by many labs around the country. And, just last year, HCI scientists reported 

very promising results from a study of the first prevention treatment for these colon cancer families. 

Thanks to collaboration and coordination, we are able to conduct cancer research across the entire State of 

Utah. Along with Intermountain Healthcare, HCI studied more than 2 million individuals in the Utah Population 

Database and determined how family history of colon cancer impacts individual risk. This research led to new 

guidelines for colon cancer screening based on family history of disease that have been disseminated 

worldwide. In another statewide study, we learned why some colon cancers are missed during regular colon 

cancer screening, a finding that has led to new colonoscopy guidelines. 

Pediatric cancers: 

In Utah, we have the youngest population in the country, thus we have a disproportionate burden of children's 

cancers. At HCI we are testing an innovative new treatment for Ewing sarcoma, the second most common 

bone cancer in children and young adults. We are also addressing the long-term effects of pediatric cancer 

treatments that can compromise the quality of life of our growing childhood cancer survivor population. Parents 

of children with cancer are understandably desperate to know about the risk to their other children. Scientists 

at HCI have used the Utah Population Database to show that when one child in a family has an early onset 

cancer diagnosis, other family members do have elevated risk of developing cancer. This has led to new 

guidance for pediatricians and pediatric oncologists. 

Federal funding for childhood cancers has led to dramatic improvements in the pediatric cancer five-year 

survival rate which has gone from 50% to about 80% since 1975. But there are still some childhood cancers 

for which progress has remained elusive, and cancer remains the leading cause of disease-related death in 

children. Here again, the Blue Ribbon Panel has put forward exciting proposals to accelerate progress in this 

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important area that will move be able to move forward if our national commitment for support of cancer 

research is sustained. 

Cancer in underserved populations: 

Finally, I will point out that even in this great nation, not everyone has equivalent access to the remarkable 

advances in cancer prevention and care. One underserved group that is not frequently highlighted is our rural 

and frontier residents. Ninety-six percent of the State of Utah is rural, with less than 100 persons per square 

mile, and 70% is frontier, with less than 7 persons per square mile. Recent research at HCI developed a new 

approach for remote symptom management to support cancer patients and their families that live far away 

from medical centers. This approach resulted in significant improvement in symptoms for patients in active 

treatment and also improved quality of life for the caregiver in the home. We have also tested a telephonebased method to deliver remote genetic counseling, effectively delivering information about inherited cancer 

risk outside of a major medical center. 

Here I have described just a tiny amount of the important work going on at HCI as a result of federal funding for 

cancer research. This type of progress is replicated across our nation from sea to shining sea. 

Our federal government has an unmatched and irreplaceable role in supporting cancer research. No other 

public, corporate, or charitable entity is able to provide the broad and sustained investment in research 

necessary to enable successes such as the ones I have noted today. Our continuing and future success 

requires an unwavering and bipartisan commitment from Congress and the Administration to continue to invest 

in life-saving biomedical research. 

The need is great and the time is right. Research is the hope for the future. 

I thank you for the opportunity to discuss this important national health issue and for your support of funding for 

the National Institutes of Health and the National Cancer Institute. 

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19 

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 


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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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Testimony for the Record 

Submitted to the 

United States House Oversight and Government Reform Committee 

For Hearing on 

Promising Initiatives and Innovations for Cancer Cures and Treatments 

March 29, 2017 

Elizabeth M. Jaffee, M.D. 

Deputy Director of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins 

Chairman Chaffetz and Ranking Member Cummings, thank you for the opportunity to 

submit testimony on this timely and vitally important subject. 

I commend you for your leadership and dedication to the promising initiatives and 

innovations that are already turning into durable treatments for patients with cancer. Decades of 

investment in cancer and biomedical research by our Government is paying off, and it's an exciting 

time. New treatments are being approved rapidly that are turning previously deadly cancers into 

chronic diseases that allow patients to live long and productive lives. Your efforts help research 

work for all Americans. 

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 will focus on four key areas that underscore the 

importance of supporting cancer research: benefits of federal funding, our current challenges, 

creating collaborations and training the next generation of scientists. 

I am the Deputy Director of the Sidney Kimmel Comprehensive Cancer Center at Johns 

Hopkins which is an NCI designated Cancer Center. Our mission is to reduce morbidity and 

mortality from cancer through research. Funding from the NCI gives Cancer Centers like ours the 

ability to support our scientists' research efforts, maintain and build core resources to develop new 

therapies, bring newly-developed therapies from the laboratory into clinical practice through clinical 

trials, and disseminate new scientific knowledge to the greater cancer community and the public. 

Many cancer centers like ours also work to reduce disparities in cancer care. 

I am also the Dana and Albert "Cubby" Broccoli Professor of Oncology. I serve as 

Associate Director of the Bloomberg-Kimmel Institute for Cancer Immunotherapy at Johns 

Hopkins, and the Co-Director of the Skip Viragh Center for Pancreatic Cancer Clinical Research 

and Patient Care. In addition to these responsibilities, I am a member of 3 NIH funded graduate 

programs (Immunology, Cell and Molecular Medicine, and Pharmacology) and dedicate efforts to 

training the next generation of scientists. l am an internationally recognized expert in cancer 

immunology and translational research, with specific expertise in the early development of 
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immunotherapies for breast and pancreatic cancers. I have served on numerous academic advisory 

boards and currently serve as Chair of the National Cancer Advisory Board. I also served as a coChair of the NCI Blue Ribbon Panel for the national Cancer Moonshot Initiative. I am now the 

current President Elect of the American Association for Cancer Research. In summary, my 25-year 

career has been dedicated to finding cures for cancer and training young scientists. 

Benefits of federal investment in research 

We are in the midst of a technological revolution that is providing new insights into human 

biology and cancer. We are 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 within the 21" Century Cures Act was enacted. It comes at a fortuitous moment in this 

advancement of knowledge, providing a critical investment needed for new cancer research and 

precision medicine. This investment 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. It is important to stress that any cuts made to the NIH and 

NCI budget will slow future discoveries and innovation and will take away from the potential 

success of the 21" Century Cures Act that was intended to enhance the current and future NIH and 

NCI budgets. 

I co-chaired the Blue Ribbon Panel, which engaged the entire cancer community to identifY 

10 priority areas ripe for the development of cancer treatments and prevention tools. These 

recommendations arc a roadmap that leverages new advances already made in cancer diagnosis, 

prevention and treatment as a result of the long-term investment by our government in basic and 

translational research. There are many examples of recent successes that are already reducing 

suffering and improving the lives of patients with cancer. 

One example of this is a cancer treatment that uses the body's own immune system to kill 

cancer. In just the last six years, a variety of "immunotherapy" drugs have been approved by the 

FDA for 20 different metastatic cancers that include malignant melanoma, renal cell carcinoma, 

non-small cell lung cancer, bladder cancer, head and neck cancer, and Merkel cell carcinoma. 

Patients with these cancers would have died of their disease in less than a year and now are living 

years with good quality of life.'·' This is the direct result of decades of investment in understanding 

how the immune system works and sees cancer. Our understanding the immune system has also led 

to the development of vaccines that can prevent cancers that are associated with two common 

viruses, human papilloma virus and hepatitis B virus. These advances are saving American lives and 

the lives of people worldwide4 '

5 

The rapid pace of scientific discovery in 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 N CI is now investing in laboratory research and cancer screening studies to develop ways to 

prevent the majority of cancers that are not due to viruses. Most cancers develop as a result of 

stepwise genetic changes that transform normal cells into premalignant cells and then into cancers. 

Scientists are now working on developing vaccines that can recognize the earliest changes in the 

normal cell and eradicate these changes before they cause malignancies. This progress is possible 

because of government funding in basic research on the immune system, genomic sequencing 

research through The Cancer Genome Atlas, and the development of genetically engineered mouse 

models that utilize the genome sequencing data to emulate how cancers develop in humans. 
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Early development of vaccines for cancer prevention is already paying off. Even for a 

deadly disease such as pancreatic cancer, we can now use vaccines in patients who undergo surgical 

removal of their cancer to prevent the cancer from coming back. Federal funding was used to 

develop one such vaccine approach at Johns Hopkins. We have treated 60 patients with this vaccine 

in the earliest type of clinical trial that aimed to determine if it can be effective. These patients were 

expected to have recurrence of their cancer within 1 year. Instead, some of these patients are 

celebrating their survival more than 10 years later. If it weren't for federal funding, this study could 

not have happened and these patients may not be alive today. 

Current Challenges 

Although we are in a scientific revolution and making great progress, there are still many 

challenges to overcome. Several were identified by the Blue Ribbon Panel. One is the lack of 

progress that has been made for rare cancers. Among this category are pediatric cancers. Treatment 

for these cancers are not typically developed by the Pharmaceutical Industry due to their rarity. In 

contrast, the NCI has supported networks, including the Children's Oncology Group and Adult and 

Pediatric Brain Tumor Consortiums, that provide the opportunity for multiple cancer centers to 

work together to conduct research and clinical trials focused on these rare diseases. These networks 

are critical for progress yet they are underfunded and fall short of the more common cancers when it 

comes to developing new clinical trials that have the potential to bring new treatments to patients. 

One such NCI~funded network ~~ The Cancer Immunology Trials Network -- led to the 

development of an immunotherapy drug for a rare form of skin cancer called Merkel Cell 

Carcinoma. The FDA approved this therapy within a few years of when the Network began its 

clinical trials. This is historic progress for people with this type of cancer and could not have 

happened without a government investment in clinical research. We need to do more of this and 

more quickly to bring these new agents to patients with different cancer types. 

The NCI is the main source of funding for research on pediatric cancers. Pediatric brain 

tumors are among the most difficult cancers to treat, and a rare type called diffuse intrinsic pontine 

glioma or "DIPG" is even more challenging. DIPG affects the brain stem, with cancerous cells 

interspersed with healthy brain cells. Due to its structure and location, surgery is not possible and it 

is almost always fatal. Over the past 10 years, research has provided an improved understanding of 

this cancer including the identification of genetic mutations that are potential targets for new 

therapics 6 These opportunities could only have occurred because of the Government's investment 

in this disease. 
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Another challenge is the need for enhanced population science reseru:ch to identify barriers 

and provide solutions to people who typically lack access to the best cancer treatments. This 

research is needed for people in inner cities and rural areas, as well as for people of lower 

socioeconomic status, all of whom experience great disparities in cancer care. Government funded 

Cancer Centers provide the resources to conduct these population-based studies and offer solutions 

to overcome bru:riers to access. Johns Hopkins has made significant progress in the State of 

Maryland. Increasing minority access to cru:e and recruitment into clinical trials has been a major 

priority for our Cancer Center. Maryland has more than twice the population of African-American 

citizens, compared -with all 50 states. Cancer continues to affect minority populations 

disproportionately. Cancer death rates among black men are 27% higher than among white men, 

and 14% higher among black women when compared with white women7 We have done significant 

outreach in the community to advance our understanding of factors that influence disparities, 

determine biologic differences that may contribute, and provide better care, including ensuring all 

populations have equal access to clinical trials. After studying the problem of clinical trials access 

among our own populations of cancer patients, we narrowed the gap between minorities and nonminorities who participate in clinical trials by 60% 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 31 ". This significant reduction is due in large pru:t to 

Government funded screening programs that have been implemented in low income areas and our 

inner cities. These screening programs have identified individuals with early colorectal, prostate, 

breast, and cervical cancers and have provided them with eru:lier access to the best treatment and 

clinical trials. The US Centers for Disease Control and Prevention reports that Maryland excels in 

cancer screening, and this is due entirely to federal funding. 

As our population changes we continue to face new challenges. Obesity and diabetes are 

increasing among young Americans. There are a number of cancers that are starting to increase in 

incidence as a result, including, liver and intrahepatic bile duct cancers. Continued government 

resources are needed to understand the science that links these chronic conditions to cancer 

development so that new screening approaches and interventions can be developed to intercept an 

impending cancer epidemic. 

Collaborations 

Collaborations between the NCI, the FDA, cancer foundations, advocacy groups, 

biotechnology and pharmaceutical companies, and patients is critical to ensure progress in reducing 

cancer morbidity and mortality. Government funding of early discoveries provides a foundation for 

new opportunities between academia, biotechnology companies, and pharma. These ru:e important 

collaborations that could not occur without a federal investment in reseru:ch because it is this 

investment that leads to the new innovations and early discoveries at the academic level that can 

then be further developed by biotech and pharma. We lead the world in technology development 

and research. We will only stay in the lead if we have increased government investment in the NCI 

and NIH. 

The speed at which we are collecting data through cancer research makes collaborations and 

sharing of data critical. To make this data work well for us, we need to develop computational 

biology platforms for data processing and sharing. Our government stands poised to not only fund 

the generation of this data, but to also provide platforms for sharing it. The genomic sequencing 
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data generated by the federally-funded Cancer Genome Atlas is an excellent example. "Ibis data is 

used widely by researchers to generate genetic models of cancer development and drive the next 

questions in cancer biology and drug development. This investment has also led to a new area of 

medicine - 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. 

The Blue Ribbon Panel identified data sharing as one of the top priorities. In addition to 

expanding the scientific data generated, the Panel recommended developing ways in which patients 

can access these data systems, input their own data for analysis by scientists, and also get "preregistered" for clinical trials among all NCI-designated cancer centers. However, this 

recommendation can only be implemented with Government investment. 

Next Generation of Scientists 

The state of science and medicine are at a Crossroads. On one hand, we are in the middle of 

a revolution that is turning decades of government investment into real treatments that are saving 

lives. On the other hand, 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 this as a career. 8 The potential 

impact is grim - without the funding to launch a young scientist's research in the US, our young 

scientists are turning elsewhere. They are taking positions outside academia, leaving the US for 

countries that are using sustained funding to recruit our young scientists, or they are leaving science 

entirely. The lack of sustained investments in research and training is leading to a severe reduction 

in the scientific work force and recruitment of the best and the brightest to the field. We need to 

take a lesson from history. Before the World Wars, Germany dominated research and technology 

development. Americans pursuing a career in science had to learn the German language to read 

their original research. Since then, the US has dominated science, technology and medicine. This 

was due to the sustained government investment over the past 70 years. Such an investment had 

many important outcomes including the deciphering of the biology of many diseases that led to new 

therapies and the rise of the biotechnology and pharmaceutical industry that developed these new 

therapies, created many jobs, and made the US leaders worldwide. We need to grow biomedical 

research to show young scientists that these are long-term careers. 

Summary 

Our worldwide dominance in cancer research has direct impact on people's lives. It is this 

research that has given colon cancer patient Stefanic Joho a new life. At 23, Stefanic's cancer had 

spread "'idely and she endured multiple regimens of chemotherapy. However, nothing worked. She 

was told she was inoperable and had no further options. She had debilitating pain and was down to 

less than 100 lbs. Stefanic's sister was determined to help and scoured the internet. She found a 

clinical trial using an immunotherapy drug for some forms of colorectal cancer at Johns Hopkins, 

and the underlying scientific discoveries spanning several decades leading up to this trial were 

funded by the NCI. Within three days of starting the immunotherapy drug, Stefanic's symptoms 

improved dramatically. Within 3 months, her tumor had shrunk 65%. More than a year later, she 

had a complete response. Stefanic remains healthy and is moving on with her life. 
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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. A 

renewed and more robust investment will provide continued support for innovation, ensure the 

future health of our medical and technology 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. Thank 

you again for the opportunity to speak to you today, and I look forward to answering any questions 

you might have. 

References cited. 

1. Regulatory Affairs Professionals Society website: (RAPS)www.raps.org 

2. Approvals in 2016: the march of the checkpoint inhibitors. Natnrll Reviews Clinical Oncology 14,133-134 (2017). 

3. US Food and Drug Administration. Hematology/oncology (cancer) approvals and safety 

notifications. FDA http://www.fda.gov /Drugs/lnformationOnDrugs/ApprovedDrugs/ ucm279174.htrn (2016). 

4. HPV Vaccination: Current Global Srntus. Current Obstetrics and G]netology Reports 4 (4):_220-233 (2015) 

5. Cancer: Disease Control Priorities, Tbird Edition (Volume 3). Washington (DC): The International Bank for 

Reconstruction and Development/ The World Bank; 2015 Nov. Chapter 8. 

6. Neuro-oncology: New therapeutic targets for diffuse intrinsic pontine glioma. Nat Rev Neurology (2017). 

7. Cancer Facts and figures 2017, American Society, Canceu)rg 

8. Source: http://sestat.nsf.~ov/ 
27 

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 eluciVerDate Nov 24 2008 10:19 May 09, 2018 Jkt 000000 PO 00000 Frm 00031 Fmt 6633 Sfmt 6633 H:\29476.TXT APRIL

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dation 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, nanotechnologybased 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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Statement of Dr. Tyler Jacks, PhD 

Director, Koch Institute for Integrative Cancer Research at MIT 

Before 

The United States House of Representatives 

Committee on Oversight and Government Reform 

For the Hearing entitled: 

Federally Funded Cancer Research: Coordination and Innovation 

March 29, 2017 

Chairman Chaffetz, Ranking Member Cummings and other members of the 

Committee, thank you for the opportunity to appear before you to discuss the 

state of cancer research in our country today and the transformation in cancer 

care that we are witnessing owing to the federal investment in our understanding 

and treatment of this disease over the past four decades. 

My name is Tyler Jacks, and I am the Director of the Koch Institute for Integrative 

Cancer Research at the Massachusetts Institute of Technology (MIT), a National 

Cancer Institute (NCI)-designated Cancer Center. I was previously the Chairman 

of the National Cancer Advisory Board, and I have served as President of the 

American Association of Cancer Research (AACR). I am also a member of the 

Board of Directors of Amgen and Thermo Fisher Scientific. I have been actively 

participating in cancer research for the past 36 years, including overseeing a 

research laboratory at MIT currently focused on cancer genetics and immunooncology. I am not here as a representative of MIT nor as a representative of the 

NCI but as an experienced cancer researcher. 

Along with my colleagues, Dr. Elizabeth Jaffee, who is also testifying today, and 

Dr. Dinah Singer, Acting Deputy Director of the NCI, I co-chaired the Cancer 

Moonshot Blue Ribbon Panel. This Panel was charged in the spring of 2016 by 

President Obama and Vice President Biden to establish the research agenda for 

the Cancer Moonshot. Dr. Mary Beckerle (also testifying today) was a member of 

the Panel as well. We are all pleased to talk about the recommendations laid out 

in the Panel's report (1 ), which describe several exciting areas of opportunity in 

cancer research, treatment and prevention. 

This hearing is particularly timely given the considerable uncertainty in the 

biomedical research community regarding the recent release of President 

Trump's preliminary budget proposal for FY18, which recommends a nearly 18% 

cut in the budget for the NIH (2). Such a budget decrease would have 

devastating effects on our nation's efforts to make progress against cancer and 
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other diseases and imperil the training of the next generation of biomedical 

researchers. 

President's Trump's budget follows recent bi-partisan support for the NIH and the 

NCI in Congress. This includes a significant budget increase for NIH in the FY16 

appropriations after a 13~year period of decline as well as proposed further 

increases during in the FY17 budget negotiations. As this committee is well 

aware, the FY17 budget bill has not been passed, and the NIH is currently 

operating under a continuing resolution. Another indication of bi-partisan 

endorsement for the federal investment in biomedical research was the passage 

of 21st Century Cures Act, which was supported by margins of 392-26 in the 

House of Representatives and 94-5 in the Senate and signed into law by 

President Obama on December 13, 2016. A key part of this Act was the funding 

of the Beau Biden Cancer Moonshot, which provides dedicated support for the 

research priorities identified by the Blue Ribbon Panel. The Cancer Moonshot 

funding for FY2017 is $300M. While highly valued, it is important to note that the 

Cancer Moonshot funds represent a fraction of the total budget of the NCI 

($5.21 Bin the FY2016 budget) (3). Sustained and robust support of the NIH and 

NCI budgets are required to fund the discovery research breakthroughs that 

enable projects such as the Cancer Moonshot as well as provide the resources 

necessary to train our Nation's cancer researchers of the future. 

As outlined below, cancer research discoveries have led to powerful new classes 

of cancer medicines, which are impacting patient lives 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 paving the way for new forms of cancer prevention and disease 

interception. Still, despite this progress, based on current statistics, over the next 

decade it is estimated that more than 15 million Americans will be diagnosed with 

cancer, including 150,000 children (1 ). In 2017 alone, more than 600,000 people 

will die from the disease in this country (4). Cancer is the second leading cause 

of death in the United States, following closely behind heart disease. Globally, 

cancer causes more deaths each year than HIV/AIDS, malaria, and tuberculosis 

combined (5). Thus, although we have come a long way in our detailed 

understanding of cancer and have begun to apply that knowledge in the form of 

better ways to treat and control the disease, there is much more to be done. 

Cancer research is the foundation for clinical progress 

At the time of the passing of National Cancer Act of 1971, the understanding of 

how cancer cells arose in the human body, how they spread to distant sites in the 

process of metastasis, and how they responded to treatments was extremely 

limited. Since that time, the federal investment in fundamental cancer research, 
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which occurs largely through NIH/NCI grants to academic investigators as well as 

the support of government laboratories, has led to dramatic advances in our 

understanding of all of these processes. As an 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 identified, in which alterations promote 

the initiation or progression of cancer. Federal investments such as the Human 

Genome Project provided a road map to find and explore the function of these 

genes. The NCI's Cancer Genome Atlas Project has supported the detailed 

analysis of thousands of cancer samples across multiple cancer types to provide 

an increasingly clear picture of the diversity of mutations and other alterations 

that underlie tumor development (6). The functional characterization of these 

genes and cellular processes is likewise primarily the product of discovery 

research programs funded by the federal government. These efforts have been 

greatly facilitated by the establishment of the NCI Cancer Centers Program, 

which is composed of 69 NCI-designated Cancer Centers located across the 

United States, which are engaged in both cancer research and cutting-edge 

cancer care. To facilitate the dissemination of the latest advances to patients 

outside of the reach of these Cancer Center and improve access of rural and 

underserved populations, the NCI has also established the Community Oncology 

Research Program (NCORP), which is a large network of cancer research and 

clinical centers. 

Owing to these efforts, we are witnessing a revolution in the treatment of cancer. 

An increasing number of cancer patients are now being treated with forms of 

"precision medicine," drugs that act on specific molecular alterations in an 

individual's cancer cells. Because cancers differ from organ to organ and from 

patient to patient, a detailed understanding of the genetic and other changes 

present in a given patient's cancer allows for the use of the most appropriate 

therapy for them. Drugs such as Herceptin (Genentech/Roche), used in the 

treatment of a subset of women with breast cancer, and Gleevec (Novartis), used 

in the treatment of a form of leukemia, are two well-known examples of powerful 

precision cancer medicines. New treatments for lung cancer have also been 

developed that target the products of specific mutant genes. Several more of 

these precision cancer medicines have been approved by the Food and Drug 

Administration (FDA) and many more are in clinical testing. While the 

development of these drugs requires significant research and development 

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. 

The characterization of genetic profile of an individual's cancer at the time of 

diagnosis is becoming a routine practice in major medical centers today. This 

genetic analysis complements more traditional methods in pathology, with the 

goal of tailoring the therapy to a well-defined subtype of a given cancer type. The 
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NCI has recently launched the Molecular Analysis for Therapy Choice (NCIMATCH) trial to test the clinical benefit of assigning patients to specific drug 

regiments based on the genetic profile of their tumor (7). Multiple Net-designated 

Cancer Centers and NCORP sites are participating in the NCI-MATCH trial. The 

results of this and similar clinical trials will inform clinical practice for all cancer 

patients in the future. 

Basic research into the function of the immune system and its interaction with 

cancer has allowed for the development of a series of new medicines that 

stimulate immune responses against cancer cells. Several of these drugs have 

been approved by the FDA, and they are having remarkable effects for patients 

with multiple types of cancer. Hundreds of clinical trials are ongoing to test new 

immuno-oncology drugs and other forms of treatment, which are also showing 

great promise. The development of this new class of medicines, which are 

expected to be the backbone of cancer treatment of many forms of cancer in the 

future, can be traced back to research funded by the NIH and the NCI. 

Recommendations of the Cancer Moonshot Blue Ribbon Panel 

Over the first half of 2016, the Cancer Moonshot Blue Ribbon Panel engaged 

more than 150 scientists, clinicians, medical professionals, industry 

representatives and patient advocates to develop a set of recommendations that 

would form the basis of the Moonshot research effort, if funded. The Panel was 

tasked by Vice President Biden to define opportunities that would allow the field 

to achieve in five years that would have otherwise taken ten without this 

dedicated funding. Through various outreach efforts, the Panel also considered 

more than 1 ,600 suggestions submitted by the cancer research community. The 

product of this effort is the Blue Ribbon Panel Report, which lists ten major 

recommendations (1 ). Importantly, the Panel envisioned that the research efforts 

undertaken by the Moonshot to address these recommendations would involve 

the collaborative efforts of academic laboratories, government laboratories and 

administrators as well as industry. Moreover, these "mission-focused" efforts 

were expected to complement the ongoing discovery research programs funded 

through the NCI research portfolio from its annual appropriation. 

Of these important recommendations, I will focus here on just one: the 

establishment of National Cancer Data Infrastructure for Sharing and Analysis. In 

an era of increasingly complex and high throughput data related to cancer, it is 

critical that this information be stored in a fashion where it can be readily 

accessed and analyzed by researchers, clinicians, and, where appropriate, 

patients. This recommendation anticipates the development of a series of 

interconnected and interoperable databases as well as analytical methods that 

would store cancer-related information and improve data access and analysis. 

Although efforts to achieve related goals are underway in many centers in the 
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country, as well as at the NCI, the Panel recommended that a national resource 

was necessary to ensure appropriate access to data and improve the 

interoperability of the stored data. The successful execution of this 

recommendation will require the cooperativity and collaboration of the public and 

private sectors, with the NCI playing a critical coordinating role. 

Across all of the recommendations of the Blue Ribbon Panel, there is a strong 

emphasis on the importance of technology development in advancing progress 

against cancer. This is an area of particular interest to me, in part because the 

Koch Institute for Integrative Cancer Research was formed to bring together 

cancer scientists and cancer-oriented engineers at MIT. Thus, we have a strong 

emphasis on technology development as well. Of note, the formation of the Koch 

Institute was inspired by grants from the NCI that funded interdisciplinary teams 

of investigators in areas such as computational and mathematical modeling of 

complex processes in cancer and nanotechnology applications to cancer 

treatment and early detection. The continued funding of interdisciplinary, 

collaborative approaches to cancer is critical to achieving the goals of the Cancer 

Moonshot and for advancement of cancer research discoveries more generally. 

The passage of the 21st Century Cures Act provides $1.7 billion to support the 

Cancer Moonshot, with $300 million allocated for FY2017. The NCI has formed a 

series of implementation teams to begin to plan for use of these funds in support 

of research to pursue the recommendations of the Blue Ribbon Panel. The 

funding structures, collaborative mechanisms, and review and oversight 

processes that are used to launch and monitor this effort will be key to its 

success. Because of the need for flexibility in funding through this program, 

Congress should consider granting Other Transaction Authority to the NCI in the 

use of these funds. 

The importance of investment in biomedical research on training and the 

economy 

Federal support for biomedical research is essential for improving the health of 

our citizens. It is also critical to economic welfare of the country. For example, it 

is estimated that for every 1% reduction on cancer death rates there is an 

approximately $500 billion value to current and future generations of Americans; 

effectively curing or preventing cancer is estimated to be worth $50 trillion to the 

US economy (8). Advances in biomedical research broadly and cancer research 

more specifically leads to massive investment from the private sector, including 

research and development investment in established companies and venture 

capital investment in the formation of new companies. In Massachusetts alone, 

there are more than 60,000 jobs in the biopharmaceutical industry. 
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The Koch Institute at MIT is located in Kendall Square in Cambridge. This area 

has undergone a remarkable economic revitalization over the past three decades 

and is now the leading center of biomedical research and development in the 

world. The numerous companies that have located their headquarters and 

research operations in the Kendall Square and Greater Boston area have chosen 

to do so because of the proximity of great research universities such as MIT and 

Harvard. These universities depend on the NIH to support their biomedical 

research enterprise. Biomedical research in academic laboratories is an engine 

in the innovation economy in the United States. The NIH budget is its major 

source of fuel. 

Most biomedical researchers-whether they work in academic, government or 

industry laboratories-receive their training at research universities. Graduate 

students, post-doctoral fellows, MD/PhD students, and technical staff are trained 

though their involvement in research projects in academic laboratories. The bulk 

of the projects that they pursue are funded through NIH grants. Thus, the NIH is 

a critical component of readying the American workforce to participate in this 

sector of the innovation economy. Reductions in funding, like those proposed in 

President Trump's preliminary FY2018 budget document, would have a direct 

and devastating effect on the number of trainees that could be supported. Such 

cuts would lead to significantly fewer grants funded and the likely closure of 

many biomedical research laboratories around the country. This is especially 

striking since the support of science in other countries is increasing at this time. 

As one example, the 131

h five-year plan recently announced by the Chinese 

government includes a proposed 9.1% increase in science funding (9). These 

developments threaten to undermine the dominant position that the biomedical 

research in the United States currently maintains. 

The increase in funding for the NIH in the FY2016 budget was a welcome relief 

for our field after 13 years of stagnant budgets. This period saw the success 

rates of grant applications drop into the low double digits or, in some cases, 

single digits. Grant awards were cut and overall budgets were not sufficient to 

keep pace with inflation. Collectively, this trend in funding led many young people 

to question the wisdom of a career in academic biomedical research, thus 

threatening the pipeline of talent for years to come. The FY2016 increase for NIH 

and the positive negotiations for the FY2017 budget were widely seen as a bipartisan reaffirmation of the importance of biomedical research for the health and 

economy of the United States. The passage of the 21st Century Cures Act was 

similarly positive. The President's preliminary FY2018 budget document has had 

a chilling effect on our colleagues and on our trainees. If it were to stand, the 

effects on the American biomedical research enterprise would be felt for years to 

come. 
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Concluding remarks 

The federal investment in cancer research in the United States that has occurred 

since the launching of Richard Nixon's War on Cancer has produced a deep 

understanding of a wide range of cellular and physiological processes that are 

dysregulated during cancer development. These insights have enabled the 

development of powerful classes of new anti-cancer agents that are benefitting 

thousands of cancer patients today. In the not-too-distant future, targeted 

therapies, immune-stimulating agents, nanotechnology-based drugs 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 

way in achieving this progress, and we are poised to do a great deal more. 

I would suggest now is the time to redouble our efforts, not retreat. 

References: 

1) The Report of the Cancer Moonshot Blue Ribbon Panel. See: 

https://www.cancer.gov/research/key-initiatives/moonshot-cancer-initiative/blue-ribbonpanel/blue-ribbon-panel-report-2016.pdf 

2) "Trump's budget calls for seismic disruption in medical and science research," J. 

Achenback, The Washington Post, March 16, 2017. 

3) See: https://www.cancer.gov/about-nci/budget 

4) AACR Cancer Progress Report, 2016 

5) See: https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-andstatistics/global-cancer-facts-and-figures/global-cancer-facts-and-figures-3rd-edition.pdf 

6) NCI, The Cancer Genome Atlas; see: https://cancergenome.nih.gov 

7) See: https://www.cancer.gov/about-cancer/treatment/clinical-trials/nci-supported/ncimatch 

8) ''The Value of Health and Longevity," K. Murphy and R. Topel, U. Chicago and NBER, 

2006 

9) "China's Latest Five-Year Plan to Focus on Innovation," Asian Scientist, April6, 2016 
36 

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 


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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 


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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 


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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 histomutation 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 


KING-6430 with DISTILLER
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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. 


KING-6430 with DISTILLER
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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 


KING-6430 with DISTILLER
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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. 


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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 


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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 


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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. 


KING-6430 with DISTILLER
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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, AfricanAmerican 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. 


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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? 


KING-6430 with DISTILLER
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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 


KING-6430 with DISTILLER
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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 


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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, 


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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 


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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. 


KING-6430 with DISTILLER
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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 


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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. 


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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. 


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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 sugVerDate Nov 24 2008 10:19 May 09, 2018 Jkt 000000 PO 00000 Frm 00060 Fmt 6633 Sfmt 6633 H:\29476.TXT APRIL

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gesting 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 


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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 


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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 


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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 


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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 


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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.] 

Æ 


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