[Senate Hearing 113-901]
[From the U.S. Government Publishing Office]


                                                       S. Hrg. 113-901

                       THE FIGHT AGAINST CANCER:
                   CHALLENGES, PROGRESS, AND PROMISE

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

                                HEARING

                               BEFORE THE

                       SPECIAL COMMITTEE ON AGING

                          UNITED STATES SENATE

                    ONE HUNDRED THIRTEENTH CONGRESS


                             SECOND SESSION

                               __________

                             WASHINGTON, DC

                               __________

                              MAY 7, 2014

                               __________

                           Serial No. 113-22

         Printed for the use of the Special Committee on Aging
         
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        Available via the World Wide Web: http://www.govinfo.gov
                                __________

                    U.S. GOVERNMENT PUBLISHING OFFICE                    
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                       SPECIAL COMMITTEE ON AGING

                     BILL NELSON, Florida, Chairman

ROBERT P. CASEY, JR., Pennsylvania   SUSAN M. COLLINS, Maine
CLAIRE McCASKILL, Missouri           BOB CORKER, Tennessee
SHELDON WHITEHOUSE, Rhode Island     ORRIN G. HATCH, Utah
KIRSTEN E. GILLIBRAND, New York      MARK KIRK, Illinois
JOE MANCHIN III West Virginia        DEAN HELLER, Nevada
RICHARD BLUMENTHAL, Connecticut      JEFF FLAKE, Arizona
TAMMY BALDWIN, Wisconsin             KELLY AYOTTE, New Hampshire
JOE DONNELLY, Indiana                TIM SCOTT, South Carolina
ELIZABETH WARREN, Massachusetts      TED CRUZ, Texas
JOHN E. WALSH, Montana
                              ----------                              
                  Kim Lipsky, Majority Staff Director
               Priscilla Hanley, Minority Staff Director
                         
                         
                         C  O  N  T  E  N  T  S

                              ----------                              

                                                                   Page

Opening Statement of Senator Bill Nelson, Chairman...............     1
Opening Statement of Senator Susan M. Collins, Ranking Member....     2
Opening Statement of Senator Joe Manchin III, Committee Member...     4
Opening Statement of Senator Elizabeth Warren, Committee Member..     4

                           PANEL OF WITNESSES

Harold E. Varmus, M.D., Director, National Cancer Institute, 
  National Institutes of Health..................................     5
Valerie Harper, Actress and Cancer Survivor......................     8
Thomas Sellers, Ph.D., MPH, Director, H. Lee Moffitt Cancer 
  Center and Research Institute..................................    11
Mary Dempsey, Assistant Director and Co-Founder, The Patrick 
  Dempsey Center for Cancer Hope and Healing.....................    13
Chip Kennett, Advocate and Cancer Survivor.......................    15

                                APPENDIX
                      Prepared Witness Statements

Harold E. Varmus, M.D., Director, National Cancer Institute, 
  National Institutes of Health..................................    37
Valerie Harper, Actress and Cancer Survivor......................    45
Thomas Sellers, Ph.D., MPH, Director, H. Lee Moffitt Cancer 
  Center and Research Institute..................................    48
Mary Dempsey, Assistant Director and Co-Founder, The Patrick 
  Dempsey Center for Cancer Hope and Healing.....................    54
Chip Kennett, Advocate and Cancer Survivor.......................    56

                        Questions for the Record

Harold E. Varmus, M.D., Director, National Cancer Institute, 
  National Institutes of Health..................................    63

                       Statements for the Record

Senator Robert P. Casey, Jr., Statement..........................    69
Clifford A. Hudis, M.D., FACP, President, American Society of 
  Clinical Oncology..............................................    70
International Society of Geriatric Oncology......................    75
Margaret Barton-Burke, Ph.D., RN, FAAN, President, Oncology 
  Nursing Society................................................    93
NIH Chart-Stages of Clinical Drug Trials.........................    95
Projected Number of US Cancer Cases from 2000-2050...............    96
American College of Surgeons Commission on Cancer................    97

 
                       THE FIGHT AGAINST CANCER:
                   CHALLENGES, PROGRESS, AND PROMISE

                              ----------                              


                         WEDNESDAY, MAY 7, 2014

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 2:17 p.m., Room 
562, Dirksen Senate Office Building, Hon. Bill Nelson, Chairman 
of the Committee, presiding.
    Present: Senators Nelson, Whitehouse, Manchin, Warren, 
Collins and Ayotte.

                 OPENING STATEMENT OF SENATOR 
                     BILL NELSON, CHAIRMAN

    The Chairman. Good afternoon. Today, the Committee will 
hear a progress report on a topic that touches all of us--the 
fight against cancer.
    This Nation is blessed to have the greatest system of 
cancer care in the world. Patients are living longer and more 
productive lives thanks to advances in cancer research, and we 
are going to hear about that today, and that can be traced 
directly to the investments our country has made in the 
National Institutes of Health and the National Cancer 
Institute.
    Dr. Francis Collins, the head of NIH, has told me that as a 
result of the sequester cuts a year ago that he had to stop 
dead in the tracks 700 medical research grants that were going 
out the door. This federal support has accelerated the pace of 
new discoveries and the development of better ways to prevent, 
detect, diagnose and treat cancer in all age groups.
    While tremendous progress has been made--yet, we have a 
formidable opponent--a lot of folks are going to receive a 
cancer diagnosis this year and more than 585,000 Americans are 
going to die from the disease.
    By the year 2030, cancer is projected to become a leading 
cause of death for Americans. Estimates are that we could see 
as many as 2.3 million people diagnosed with cancer annually, a 
45 percent increase from today's total.
    In the meantime, mortality rates remain extraordinarily 
high for certain cancers such as pancreatic, liver, lung, 
ovarian, ranging from 30 percent survival likelihood in five 
years to less than one percent, and yet, in other cancers, 
extraordinary progress has been made.
    While we have this extraordinary progress in tripling the 
number of survivors in the last 40 years, the fact remains we 
know little about the impact of cancer treatments on the body 
as it ages; thus, the subject of this Committee.
    Though many have been cured by groundbreaking advances, 
there are still people across the country that are dependent on 
the next clinical trial, the next great research advance, the 
next NIH grant, that we hope the money is going to be there, to 
keep them alive just a little bit longer, and that is why it is 
imperative that we remain committed in this war, and one place 
to start is to renew our federal funding commitment to 
innovative research that is taking place at the universities, 
the oncology centers, the hospitals, much of it directed 
through NIH.
    While we were able to restore a billion dollars in funding 
to NIH and the National Cancer Institute last January, 
unfortunately, their budgets remain far, far below what they 
had before this--I will be kind and say--unusual way of 
budgeting called sequestration.
    I hope the Committee's discussion here is another step in a 
discussion of what we need to be doing and how much we need in 
order to be doing that.
    I want to turn to my great partner in this Committee, 
Senator Collins.

                 OPENING STATEMENT OF SENATOR 
                SUSAN M. COLLINS, RANKING MEMBER

    Senator Collins. Thank you very much, Mr. Chairman, and 
thank you for calling this very important hearing today to 
discuss the critical importance of funding cancer research and 
to highlight the progress that has led to significant 
improvements in the prevention, detection and treatment of this 
disease.
    Our hearing will also examine the many challenges that 
cancer continues to pose for Americans of all ages. The 
American Cancer Society estimates that as many as 1.7 million 
new cancer cases will be diagnosed this year alone, including 
more than 9,200 in the State of Maine. While survival rates are 
improving, cancer continues to be the second-most common cause 
of death in our country, exceeded only by heart disease.
    Cancer affects people of all ages; we all know that. 
However, it poses particular challenges for older Americans. 
The fact is that aging is the single greatest risk factor for 
developing cancer. More than 60 percent of cancers occur in 
people age 65 and older, and this percentage will only increase 
as the Baby Boom Generation ages.
    Advances in treatment also mean that more people are 
surviving longer and now are aging with cancer. In fact, for 
many people, cancer has become more like a chronic disease.
    Older cancer patients and their families often have 
different needs than those of younger patients. Health 
conditions that are common in older adults, such as heart 
disease, diabetes, high blood pressure, can affect cancer 
treatment and recovery as well as the type and severity of 
treatment side effects. Fatigue and weakness may be worse for 
older patients, and the chance of infection may be higher.
    Social supports can also weaken with age as friends and 
relatives need assistance themselves or are no longer with us. 
It can be difficult for older cancer patients to find someone 
to help them at home or drive them to their daily treatments. 
This is particularly true in rural areas like my State of 
Maine, where cancer patients may have to travel long distances 
for treatment and transportation options are limited.
    Even though cancer occurs most often in older adults, they 
often receive less frequent screening and fewer tests that can 
help determine the stage of cancer. Moreover, people with 
cancer over age 65 have been significantly underrepresented in 
cancer clinical trials even though they represent the majority 
of patients. Fortunately, I understand that this is beginning 
to change just as it is changing for women and minorities, two 
other underrepresented groups in clinical trials.
    Mr. Chairman, we truly have an extraordinary panel of 
witnesses today, from two distinguished physicians to Valerie 
Harper, who was always one of my favorite television actresses 
as I was growing up, to Mary Dempsey, who is from the State of 
Maine, who you will find to be a ray of sunshine, Maine 
sunshine rather than Florida sunshine.
    Mary is the Assistant Director and Co-Founder of the 
Patrick Dempsey Center for Cancer Hope and Healing in Lewiston, 
Maine. The Dempsey Center provides support, education and 
integrative medicine services to anyone affected by cancer, and 
it is a wonderful resource for Maine cancer patients and their 
families.
    It was founded by Mary and her siblings--in fact, I was 
thinking we have gone from Rhoda to Dr. McDreamy today, among 
our witnesses, one of Mary's siblings--in honor of their 
mother, Amanda, who lost her 17-year battle with ovarian cancer 
this past March at age 79, and what a wonderful thing the 
Dempsey family has done in her memory.
    Last, I want to give a very warm welcome to Chip Kennett, 
who I think would actually be more comfortable sitting behind 
us because he worked on my staff for two years, handling 
defense and homeland security issues. He is a bright and 
hardworking young professional, a devoted husband and a 
terrific dad. Unfortunately, he now knows firsthand the 
challenges of living with cancer.
    I will leave it to Chip to tell his own story, but I just 
want him to know how much I admire his courage and that of his 
wife, Sheila, who is here today as well. They have fought his 
cancer with great courage, determination and grace.
    Again, Mr. Chairman, I thank you so much for assembling 
such an extraordinary group of witnesses from whom I am sure we 
will learn a lot today.
    The Chairman. Chip must have married up because his wife 
used to run Senator Rockefeller's office, and anybody who can 
do that has to be Merlin the Magician.
    Mr. Kennett. I did indeed, sir.
    The Chairman. Now we have two spectacular Senators that 
have joined us, and I would like to call on them if they can 
resist the temptation of a Senator's disease, which is speaking 
way too long.
    The great Senator from West Virginia.
    Senator Manchin. Thank you, Mr. Chairman. I think I can.
    The Chairman. Senator Manchin.

                 OPENING STATEMENT OF SENATOR 
               JOE MANCHIN III, COMMITTEE MEMBER

    Senator Manchin. I think I can do that. I want to thank you 
again for this outstanding panel and thank all of you for 
coming here and sharing with us the hope that we all have.
    I grew up in the little State of West Virginia. In those 
years, let's say prior to the 1970s, way back in the 50s and 
60s, if you heard the word cancer, you thought it was over, you 
really did. There was little hope, and the achievements that we 
have had as a Nation since 1970 is unbelievable.
    I still do not know of anybody in my little state where a 
family member or an extended family member has not been 
affected by cancer, so it really has touched all of us, and 
what you have done is extraordinary, and, doctor and for all of 
you in the research, and Valerie, sharing your stories, and all 
of you coming here--it is really something special.
    We have the hope that we can continue, to continue to have 
the success we have had.
    I think I was just reading here that we have been able to--
since 1970, we have tripled, with nearly 14 million cancer 
survivors. We have come a long way--1 percent every year for 
the last two decades. Now that is pretty special, but we are a 
long way from finished, and we know that, and we know that we 
have to do our job, and it is going to take more research 
dollars and all of us being dedicated to this.
    I just want to thank you, and I look forward to your 
testimony.
    The Chairman. Senator Warren.

                 OPENING STATEMENT OF SENATOR 
               ELIZABETH WARREN, COMMITTEE MEMBER

    Senator Warren. Thank you very much, Mr. Chairman.
    I want to start with an apology. We have got a Banking 
hearing running at the same time. I am going to be kind of back 
and forth, trying to manage both.
    I want to thank the Chairman, and I want to thank the 
Ranking Member, for putting this together today. It is a 
powerfully important hearing that we have today.
    We have all been touched by cancer, and so for you to come 
forward and give us hope is very important, but also give us 
guidance on the direction we go.
    I am hoping to have many opportunities today to ask about, 
particularly about, our federal investments in research and the 
importance of those investments and how we make the most of 
what we can do and what we do know.
    I also want to ask about palliative care when we have a 
chance, so that is what I would like to do, and I just would 
like to yield the rest of my time to go to our great panel 
here.
    The Chairman. Thank you.
    All of your written statements will be entered as a part of 
the record, and if you would just share with us for a few 
minutes.
    First, we will hear from Dr. Harold Varmus, the Director of 
the National Cancer Institute out at NIH. He is a widely 
recognized expert and recipient of the Nobel Prize for his 
research, and then, Valerie Harper. Senator Collins has already 
told you about her and not only as a very famous actress but 
now a very brave brain cancer survivor.
    Dr. Thomas Sellers, the Director of the Moffitt Cancer 
Center and Research Institute co-located with the University of 
South Florida in Tampa, and Dr. Sellers is a researcher who 
will share some of his most exciting new advances and the 
barriers that remain to developing the science that we need for 
the most elusive cures.
    Then, Mary Dempsey, the Co-Founder and Assistant Director 
of The Patrick Dempsey Center for Cancer Hope and Healing in 
Senator Collins's State of Maine. Ms. Dempsey is going to offer 
us a caregiver's perspective and share her work to provide for 
the social services needs for families during those troubling 
times, and then, as you have already heard, Chip Kennett, 
advocate and lung cancer survivor currently undergoing 
treatment.
    Our two survivors here on the panel, with different kinds 
of cancer, will illustrate for the Committee about progress 
with new types of treatments, the complexity of the disease and 
where we might have fallen short of a cure, and so I want to 
particularly thank you two for sharing your personal stories 
with us.
    We will start with you, Dr. Varmus. Thank you.

              STATEMENT OF HAROLD E. VARMUS, M.D.,

              DIRECTOR, NATIONAL CANCER INSTITUTE,

                 NATIONAL INSTITUTES OF HEALTH

    Dr. Varmus. Chairman Nelson, thank you very much.
    Senators Warren and Collins, thank you for your remarks.
    This is a very opportune moment to discuss the relationship 
of cancer and aging. I will focus on that.
    I appreciate your general remarks about cancer, which 
allows me to go directly to my topic.
    The reason this is such an opportune moment is that life 
expectancy is increasing throughout the world. The number of 
people over 65 in our country especially, in the wake of the 
Baby Boom, is increasing, and we have made a lot of progress in 
cancer research, understanding the disease better and improving 
many aspects of diagnosis, treatment and prevention, lowering 
cancer death rates, the best single measure of our progress, by 
1.5 percent on average per year over more than the last decade.
    Let me show you a chart that reminds us about the 
demographics with respect to aging in particular. Most cancers 
are diagnosed in older age groups, and this chart shows the 
number of new cases grouped by age range in the U.S.
    The number that are newly diagnosed with cancer is 
dramatically rising, from 1.7 million today to 2.5 million by 
2040, despite the decrease in rate of incidents because the 
populations are increasing, and those increases are almost 
entirely confined to the three older age groups over 65.
    We have not simply new cases but, as you point out, more 
survivors--people who had a cancer diagnosed at any time in the 
past regardless of their current conditions. Most of these are 
elderly. Most are living longer due to better treatment. We 
have gone, as you mentioned, Senator Nelson, from about three 
million in the early 70s, and we expect to have 18 million 
survivors in this country by 2020.
    I have three goals today, which will summarize some of my 
written testimony:
    First, to mention something about the biological 
relationship of cancer to aging that underlies these 
epidemiological facts on the chart.
    Second, I want to mention a few ways to improve the control 
of cancer through prevention and screening and treatment, 
especially among the elderly, and, third, I want to say 
something about how we plan to expand our knowledge so we can 
improve cancer care in the future.
    Throughout this discussion, you must remember the 
vulnerabilities of older individuals. Namely, they have 
coexisting medical conditions very commonly; we call these 
comorbidities, but those comorbidities can shorten life 
expectancy independently of the cancer and can complicate the 
delivery of cancer care.
    Why is cancer so common in older people? We do not know all 
the answers here, but overall, we know that cancers, which are 
very different in character, are all caused by accumulated 
changes in a cell's genome, mostly mutations. Since these 
accumulate with age, the incidence of cancer also, in general, 
increases as we age, but the relationship of cancer to age is 
not simple, and not all cancer types show an increased 
incidence with advanced age. For example, some cancers, like a 
cancer of the eye, retinobalstoma, some leukemias, some 
lymphomas, some brain and bone cancers are largely confined to 
children, adolescents and young adults. Even cancers that are 
common at advanced ages can occur in young people, and we are 
going to hear about that today, but we can learn from these 
exceptions to the general rule.
    How about prevention--obviously, our greatest tool if we 
can exercise it properly? In general, cancer prevention has 
four basic strategies:
    Avoiding cancer-causing agents or conditions like tobacco, 
obesity, infection with certain viruses.
    Secondly, assessment of our own individual and inherited 
risk of cancer.
    Third, the use of screening procedures, and, fourth, the 
use of some common drugs, like aspirin, that can reduce the 
incidence of certain cancers.
    Let me mention three examples that are relevant to older 
populations.
    We all know that tobacco, especially cigarette smoking, is 
the major avoidable risk factor.
    Aging is not. It is a good risk factor. It is not 
avoidable.
    That is true for many cancers but especially lung cancers.
    Nevertheless, the health benefits of stopping tobacco use 
in middle age are underappreciated, and we do not know enough 
about the benefits of stopping in later ages.
    Second, screening tests. Screening tests are controversial 
because we have arguments, legitimate arguments, about the 
cost-benefit ratios and about the ages at which screening 
should begin and stop. We know that some tests are not 
routinely recommended for people over a certain age because 
there are harms as well as advantages to these tests, because 
overall life expectancy increases as we age and, therefore, the 
benefits diminish and, thirdly, because certain cancers are 
less frequently diagnosed at older ages. We need to pay 
attention to those limits and communicate them successfully to 
older people.
    Third, let me say a word about aspirin. We have great 
evidence that aspirin can reduce the incidence and mortality of 
quite a few cancer types including gastrointestinal and lung 
cancers. However, adoption of long-term chemoprevention is not 
usually--is not well accepted, especially in older individuals, 
because of gastrointestinal bleeding.
    The NCI is currently collaborating with the Institute of 
Aging, that you hear from frequently, on a five-year study in 
hopes of providing information that can better guide the use of 
aspirin in elderly folks for chemoprevention.
    Something about treatment. Historically, we have used less 
aggressive therapies in older patients, but that approach has 
been changing for several reasons.
    First, we know it is important to distinguish between 
physiological age, a person's function, and their chronological 
years, the years they have been alive, and evidence suggests 
that healthy but chronologically old patients can withstand 
such therapies.
    Secondly, they can benefit from them, and, third, there are 
improved methods to control the symptoms, like pain, nausea, 
immunosuppression, a suppression of the bone marrow, that often 
accompany cancers or their treatments.
    Finally, we can recognize that both improvements in 
traditional therapies like surgery and radiotherapy, and the 
advent of newer therapies, targeted therapies and 
immunotherapies, are likely to produce fewer side effects, 
including, and perhaps especially, in older populations, so it 
is important to ensure if we are going to use all these 
therapies well that such patients are included in clinical 
trials, but now about two-thirds of patients in clinical trials 
are younger than 65 even though more than half of cancers are 
diagnosed in patients over 65.
    There are reasons for that--comorbidities, traveling, 
prejudice against inclusion of the very old in trials--and 
these require further examination.
    Finally, a word about what remains to be learned. I have 
already mentioned a number of things that the NCI is doing. We 
are also supporting work on fundamental aspects of aging and 
its relations to cancer to understand this relationship between 
aging and cancer.
    For example, we have an initiative called the Provocative 
Questions program that has called for applications to try to 
study how the life span relates to cancer incidence in animals, 
where it varies widely, how biological mechanisms might 
influence susceptibility to cancer risk factors and what 
aspects of aging other than mutations might not only promote 
but also protect against cancers.
    You hear frequently in this Committee about Alzheimer's and 
Parkinson's, and there is an intriguing observation that 
patients with these diseases seem to have a lower incidence of 
cancer, and we are trying to attract applications through our 
Provocative Questions initiative to answer those.
    I will be happy to answer any questions you might have, and 
thank you for your indulgence in allowing me to go to six and a 
half minutes.
    The Chairman. Well, thank you, Dr. Varmus.
    Any Nobel laureate is entitled to go as long as he wants.
    Dr. Varmus. I have many friends I will communicate that to. 
Thank you.
    The Chairman. Tell that to Dr. Collin.
    Dr. Varmus. She is not a Nobel laureate yet.
    The Chairman. Ms. Harper.

                 STATEMENT OF VALERIE HARPER, 
                  ACTRESS AND CANCER SURVIVOR

    Ms. Harper. Oh, it did not stay on. Oh, anyway, good 
afternoon. I should learn to use the mic.
    My name is Valerie Harper. Thank you for the lovely 
introduction.
    I am pleased to be joined by my husband, Tony Cacciotti, 
and we are both very honored to be here.
    I am a lung cancer survivor, and it was widely reported in 
the press that I had brain cancer.
    I guess I am on the cusp. It is occurring in my brain, so 
you are correct, Chairman.
    My neurological oncologist, Dr. Jeremy Rudnik, said, you 
know, Val, if it is in the lining of the brain, I claim it as 
my own, but what it is, is lung cancer. It is lung cancer, but 
it took them a month or more to ascertain that so I could be 
treated with one of the new kind of markers and genetical 
approach that the good doctor was speaking on.
    Thank you, distinguished members of the panel for having me 
and letting me share my story.
    I am really passionate about this not just because I have 
it but because of the enormous amount I learned about lung 
cancer that I did not know--the 15 percent survival rate 
against other cancers, where it is 88 percent survival rate, or 
with prostate it is in the 90s. I thought, oh, my goodness, my 
chances are not great.
    Five years ago, March 2009, I needed surgery on my left 
wrist to repair an injury. I underwent the required pre-surgery 
chest x-ray, which shockingly revealed something that was in 
the top of my right lung that should not be there. It was a 
shock because I had experienced no symptoms whatsoever. None.
    The wrist surgery was put on hold, and the tumor in my lung 
was diagnosed as stage two cancerous. I had no idea it was 
there.
    Thankfully, my surgeon at Cedars Sinai, Dr. Robert McKenna, 
in 1992 had pioneered a truly brilliant minimally invasive lung 
surgery procedure. Video-assisted thoracic surgery--thank you, 
Doc--is akin to arthroscopic knee surgery but for the lung. It 
was an amazing advance for the patient, quick recovery and less 
pain. The whole thing was so much advanced.
    A lot of areas do not even know about it. My doctor has 
done over 4,000 of these, and I was lucky to have that.
    Every six months since that surgery in 2009, my lungs have 
been scanned for any sign of recurrence. My lungs have been 
free of lung cancer, surgically cured of lung cancer, for four 
years.
    Then January 2013, there it came up again in a new form--
leptomeningeal carcinomatosis, known as lepto, a rare and 
incurable cancer that occurs in the meninges. That is the 
membrane that surrounds the brain and the spine, and it is that 
space in which the fluid, the spinal fluid, exists. It protects 
us. It also keeps out bacteria, infection and chemotherapy, so 
we had to do some plain and fancy trying. It took a month of 
testing to conclude that my lung cancer had returned, not to my 
lung but to this area, and, although the original prognosis was 
terrible--excuse me.
    By the way, I have laryngitis. This has nothing to do with 
cancer. Not enough sleep, okay.
    The prognosis was truly dreadful, as I said; that is, it 
was an incurable, terminal disease with perhaps three to six 
months to live, but my spectacular oncology team, Doctor Ronald 
Natale and Dr. Rudnik, plus newly researched treatments, have 
extended my time on the planet.
    My husband, Tony, makes sure I take my prescribed 
medications religiously, exercise, eat consciously, do not give 
up. I have regular brain scans and whole body testing twice a 
year to see if it is moving around.
    I also take traditional Chinese medicine tea, TCM, which 
seems to help with the meridians, I am told. I have had 
acupuncture regularly.
    I engage in visualization, which is actually an actor's 
tool kit, visualizing myself kicking out the cancer or making 
up scenarios. Some of them are funny.
    I talk to them and say, you guys, if you do not go crazy, 
we can coexist, but you are killing the host, so, you know, I 
will accept you as my own, but let's be real, so I do all kinds 
of stuff.
    I replace the fear of death with the joy and gratitude for 
each moment I do have, which these wonderful doctors and 
procedures have accorded me with.
    I was struck by what you said because my doctors went after 
it aggressively with an oral medication.
    Today, I am a year and four months past my expiration date 
due to these interventions, and I am really grateful for it.
    The question I would ask myself is, why did I get lung 
cancer? What would have happened to me if it was not discovered 
accidentally?
    Today, we can really confront the facts for a moment. You 
guys, with all you do for us in so many areas, are very versed 
on this, and I am thrilled that I am repeating what you have 
already said.
    Lung cancer is the number one cancer killer in the United 
States among both women and men, and women have been on the 
rise as cancer patients-victims.
    More than two-thirds of all lung cancers occur among never-
smokers--here is one--or former smokers. As my doctor, McKenna, 
said, Valerie, I have so many patients who did the right thing 
and stopped smoking years ago, and yet, they are hit with this.
    Lung cancer we have to face although absolutely no one 
should smoke. That is my opinion. I am a nonsmoker, but lung 
cancer can also be caused by secondhand smoke, air pollution, 
the environment and radon--a colorless, tasteless, odorless 
gas, and genetics, we are finding play an enormous role in 
developing lung cancer.
    While I never smoked, I was exposed to secondhand smoke, as 
all of us have been, for decades.
    My mother also developed lung cancer. She died of it. She, 
too, never smoked, so here were two risk factors--secondhand 
smoke exposure and possibly my genetics.
    In my capacity as a lung cancer survivor, I have gotten 
involved with the American Lung Association. They advocate for 
increased federal funding for the National Institutes of 
Health, including the National Cancer Institute.
    While I will not pretend to understand the federal budget, 
I do know research dollars equal lives. There have been recent 
amazing, truly exciting advancements, as you heard and will 
continue to hear, in fighting lung cancer over the last few 
years.
    Tumors can now be tested, as in my case, for genetic 
markers that then they can hone in and say, what is the best 
drug for this; let's do that, and that certainly extended my 
life.
    Landmark research conducted by the National Cancer 
Institute in this last decade has led to the U.S. Preventive 
Services Task Force awarding a B grade for screening for people 
with lung cancer if they meet the definition of high risk. 
Research is desperately needed for early detection.
    I had not had a lung x-ray and would not have had one if I 
did not have my wrist problem, so people like me who are not at 
high risk for developing lung cancer, except for the age--I 
will be 75 in August, and I plan to make that birthday.
    I do thank God that I broke my wrist and needed surgery. 
However, luck is not an appropriate method for early detection, 
so funding that will support means of early detection is 
absolutely imperative--and research on new treatment options 
that are just sitting out there. We are not sure about them, 
but they are so promising, and that is needed to detect stages 
of lung cancer three and four.
    Chemotherapy is the first-line treatment for many lung 
cancer patients despite its difficult side effects.
    For 20 percent of lung cancer patients with a known genetic 
marker, personalized treatments like I received are available--
less toxic, more effective against specific tumors, but more 
work is needed on these biomarkers and targeted therapies.
    Just because he talked about the aggressive approach, it 
has worked in my case. I really have had minimal side effects, 
and since they were, my doctors said, Valerie, you can take it; 
let's give you more; let's have you take it every five days, 
and we were--it was a work in progress, which worked out for 
me.
    How can these investments in life-saving research occur 
when, excuse me, all we hear from Washington is about cutting 
spending?
    We must stop thinking of spending--and I know you guys 
cannot; you have to--and gals. Do not think of it as spent.
    Think of it as investing. Investing in the answers. 
Investing in all these magnificent saints who are doing the 
research, who are doing--the clinicians who are working with 
patients.
    I just thank you.
    I think I have run over--oh, only five seconds. That is 
good.
    Thank you again for this wonderful opportunity, the 
pleasure to see you guys in person, to thank you for all you do 
and all you face. I do not know how you get up every morning 
and go in and fight the good fight, but I thank you for it.
    Please, let's get those dollars rolling toward real 
advancement, not just against lung cancer but all cancer.
    Thank you.
    The Chairman. Thank you, Ms. Harper.
    You know, you do not have to convince the Senators here.
    Ms. Harper. I see that.
    The Chairman. I wish we could have you talking to some of 
our colleagues.
    Ms. Harper. You can.
    The Chairman. All right.
    Ms. Harper. I am up for it. Take me in.
    The Chairman. Dr. Varmus, I think you have got a new helper 
when you go in front of the Appropriations Committee.
    Dr. Varmus. We very much welcome her continued existence.
    The Chairman. All right.
    Ms. Harper. I cannot say anything too wrong. It was not too 
bad.
    Dr. Varmus. It was great.
    Ms. Harper. Okay. Good.
    The Chairman. All right, Dr. Sellers, tell us about some of 
your groundbreaking research.

     STATEMENT OF THOMAS SELLERS, PH.D., M.P.H., DIRECTOR,
      H. LEE MOFFITT CANCER CENTER AND RESEARCH INSTITUTE

    Dr. Sellers. Chairman Nelson, Ranking Member Collins and 
members of the Committee, good afternoon. I am pleased to speak 
as the Director of the Moffitt Cancer Center in Tampa, Florida 
and as a recent member of the board of directors of the 
American Association for Cancer Research.
    I do not have a Nobel Prize, and I am not a famous actor, 
so I will try to stick closer to the five minutes.
    The State of Florida has nearly 20 million residents, and 
almost one in five is older than 65 years. That is the highest 
percentage in the country and why some sarcastically refer to 
Florida as heaven's waiting room. By 2030, one in four will be 
over 65.
    Although Florida is the fourth most populous state, it is 
second in the Nation in overall cancer incidence and mortality. 
Within the state, cancer is already the leading cause of death. 
Thus, aging and cancer is an especially significant concern for 
the state I live in.
    Since its inception in 1986, the Moffitt Cancer Center has 
had a single mission--to contribute to the prevention and cure 
of cancer. Our hospital and outpatient clinics treat more than 
50,000 patients per year from all 50 states and 78 countries 
from around the world.
    In addition to taking care of cancer patients, we have a 
thriving research enterprise, representing about 20 percent of 
the 4,300 member workforce. We are supported by more than $50 
million in research grants and contracts, primarily from the 
National Cancer Institute.
    Moffitt is the only NCI-designated comprehensive cancer 
center base in Florida.
    From the window of my office, I see dozens of cars lining 
up each day, filled with cancer patients, their family members 
and friends. They are coming to us for one reason--hope. Their 
hope often lies in the opportunity to participate in one of the 
400 clinical trials that we have open at our institution.
    We have a Senior Adult Oncology Program. It is the first of 
its kind in the Nation. Based on rigorous and empirical 
clinical research, our multidisciplinary team of experts has 
made great strides in learning how to tailor cancer treatments 
to each patient based on their biological or physiological age 
and not their chronological age.
    This is an exciting and promising time in science and 
cancer research, and that research is having an impact. The 
cancer death has declined by more than one percent each year 
for the past two decades, resulting in over a million lives 
saved. The number of Americans living with, through or beyond a 
cancer diagnosis has almost tripled since the 1970s.
    According to the most recent AACR Cancer Progress Report, 
13 new drugs to treat a variety of cancers, six new uses for 
previously approved cancer drugs and three new imaging 
technologies have been approved in just the past 18 months. 
Moreover, there are now 41 FDA-approved therapies that target 
specific molecules involved in cancer--like your good news 
there.
    Ms. Harper. Yes.
    Dr. Sellers. That is compared with seventeen, five years 
ago and just five, ten years ago.
    These results are directly related to the past investments 
our country has made in the NIH and the NCI.
    At a time of unlimited potential for further progress, the 
enthusiasm of the scientific community is bridled with sobering 
realization that the resources needed are simply not available 
because of demoralizing decreases in funding.
    Despite the additional funds provided in the current fiscal 
year, the NIH and NCI budgets remain below fiscal year 2012 
levels and below levels prior to sequestration. In fact, the 
NIH has lost more than 22 percent of its budget after inflation 
over the past decade.
    These cuts not only have a negative impact on the pace of 
biomedical research productivity but also on future generations 
of scientific investigators. The competition for research 
grants is so fierce that it is driving many new investigators 
out of the field before they even get in the game.
    I used to think when I was younger that 55 was ancient. I 
am realizing, now that I am 55, that is not so old, but I look 
around, and I wonder, who is going to be there to carry the 
torch and continue in the future the fight for biomedical 
research?
    There has been progress against cancer. The opportunity to 
make a significant impact based on recent discoveries--
sequencing of the genome we have heard about--and amazing 
technological advances at our fingertips.
    The need is great. More than 1.7 million Americans are 
expected to receive a cancer diagnosis this year, and one 
person will lose their battle to cancer every minute of every 
day.
    Cancer is clearly not only a costly disease in terms of 
lives lost but also costs our country more than $215 billion in 
direct and indirect costs.
    The Federal Government has an irreplaceable role in 
supporting medical research. No other public, corporate or 
charitable entity is willing or able to provide the broad and 
sustained investment in research necessary to enable success. 
This will require an unwavering and bipartisan commitment from 
Congress and the Administration to invest in our country's 
remarkably productive medical research enterprise.
    With robust support, research can help us to accomplish the 
ultimate goal once articulated by the late Dr. Ernst Wynder--to 
help people die young at an old age.
    Thank you, and I look forward to answering any of your 
questions.
    The Chairman. Thank you, Dr. Sellers.
    I want to offer to you all, you brave souls that are 
standing, there are plenty of benches right here, and so I hope 
you will come up and avail yourselves of please making yourself 
comfortable. Come on. Come on.
    Well, at least the ladies. Ladies, come up here. This is my 
authority as Chairman.
    Thank you, Dr. Sellers.
    Ms. Dempsey.

         STATEMENT OF MARY DEMPSEY, ASSISTANT DIRECTOR

         AND CO-FOUNDER, THE PATRICK DEMPSEY CENTER FOR

                    CANCER HOPE AND HEALING

    Ms. Dempsey. Chairman Nelson, Senator Collins and the 
members of the Committee, thank you for inviting me to speak 
today.
    My name is Mary Dempsey, and I am the Assistant Director 
and Co-Founder of the Patrick Dempsey Center for Cancer Hope 
and Healing. We offer free support and education available to 
anybody impacted by cancer.
    My mother, Amanda Dempsey, was diagnosed with ovarian 
granulose tumor cell cancer on August 19, 1997. Over a course 
of 17 years, my mother had a total of 12 recurrences. As my 
family navigated the first two occurrences, we realized the 
necessity for emotional and community support that patients and 
families need when going through this unknown experience.
    My brother, Patrick--McDreamy--assisted in the partnership 
of Central Maine Medical Center, where we joined an experienced 
oncology social worker to develop the concept for a local 
cancer support center with a caring warmth and provided 
opportunities for healing that would be accessible to anybody 
impacted by cancer.
    I understand firsthand the cancer diagnosis feels like a 
death sentence.
    There have been tremendous advances in the field of 
oncology that now allow more people to live with the disease as 
a chronic illness.
    My mom lived this experience, and I shared it with her as 
her primary caregiver. In this role, I experienced firsthand 
the impact of cancer that it had on every part of my life as 
well as my mom's and my family's. For me, it really became a 
full-time job, navigating resources, understanding the medical 
world and coping with the profound changes in our lives.
    While physicians and other oncology professionals provide 
great medical care to treat the disease, cancer patients and 
their families need additional support to treat the person and 
those who surround them. Cancer affects the whole person and 
the whole family.
    At the Dempsey Center, we understand that the resources 
that are strained at first when things are often sacrificed is 
the emotional care needed to endure ourselves through these 
tough times. As a result, the Dempsey Center offers an array of 
services including professional cancer support, education, 
integrative medicine and services for all ages, free of charge, 
regardless of where the patient receives their medical 
treatment.
    Much like other cancer treatment centers, we provide many 
opportunities for people to give back to such great comfort 
items. Donating time and skill, they help the Dempsey Center 
operate and, of course, volunteering at our annual Dempsey 
Challenge. These volunteers can certainly be patients or family 
members or just others wanting to give back to make a 
difference.
    Patrick helps sustain the center financially through not 
only his own generous contributions but his vision of the 
Dempsey Challenge, our largest annual fundraising event. The 
challenge is an event, not a race, where patients and families 
and communities from all around the world come together to 
support a cause which is common in many homes.
    At this event which, by the way, is September 27th and 28th 
this year, it has more depth than it may appear, just like the 
Dempsey Center. It is a community celebration, more 
importantly, a recognition that we are all in this together.
    Every year since 2009, my mother has led the Amgen 
Breakaway from Cancer Survivor Walk, alongside with our family 
and many other cancer survivors, who came together to take 
their journey one step at a time.
    My mom, Amanda, passed away this year. She will be there in 
spirit like so many others that have come before her and so 
many others that will come after her, and we will continue to 
work towards our mission of raising awareness, encouraging hope 
and offering healing through our collective presence.
    In closing, mom passed away on March 24th of this year. She 
did not lose the battle. She defied all odds and lived each day 
to the best of her ability. After all, this is what living with 
cancer is all about--not letting a disease prevent you from 
life; she is beating up cancer.
    The mission of the center will forever be intact through 
her legacy and our commitment to help everyone impacted by 
cancer through their journey as gently as possible. We will 
continue to be the beacon of light in the thickness of the fog.
    Thank you for having me.
    The Chairman. Thank you, Ms. Dempsey.
    Mr. Kennett.

                  STATEMENT OF CHIP KENNETT, 
                  ADVOCATE AND CANCER SURVIVOR

    Mr. Kennett. Chairman Nelson, Ranking Member Collins and 
members of the Committee and staff, I want to thank you for 
holding this hearing on a subject that has, excuse me, touched 
the lives of everyone in this room, but, as I have learned over 
the past 18 months, you do not have a complete understanding of 
everything that is involved in a cancer diagnosis until you 
receive one.
    I am grateful the Committee is taking the time to explore 
this issue, and I hope I am able to add value to the 
Committee's efforts.
    Senator Collins, thank you for that very kind introduction. 
I did not expect to be testifying before the Senate at any time 
and wish it was for another reason, but at least I am not under 
subpoena.
    The Committee has asked me to testify about my personal 
experience, so I will primarily be focusing on lung cancer, but 
I strongly support the funding for, and the eradication of, 
every single type of cancer.
    My journey to testifying here today began in the fall of 
2012. I was a 31-year-old father of a wonderful two-year-old 
boy named Joe, and my wife Sheila, who is here with me today, 
was 35 weeks pregnant with our baby girl, Crosby.
    I was, by all accounts, healthy. I just had a nagging 
blurry spot in my right eye that showed up and would not go 
away.
    I scheduled an appointment with my eye doctor who thought I 
had a detached retina. After seeing several eye specialists, I 
was told I potentially had melanoma of the eye, but it was 
recommended that I schedule an MRI and PET scan through my 
general practitioner.
    That series of events led my wife and me back to the same 
doctor's office at which a few months earlier I had passed my 
annual physical with flying colors. We were told that the 
results of the PET scan were all lit up.
    I had cancer ``everywhere.'' It was in both of my lungs, my 
liver, my lymph nodes and my bones and, plus, my right eye and 
had subsequently traveled to my brain.
    A week later a biopsy revealed I had non-small cell lung 
cancer. In just three and a half weeks, I went from seeing a 
blurry spot to being told I had a year, maybe two, to live.
    Further genetic testing revealed I had a genetic cell 
mutation affecting less than five percent of adenocarcinoma 
patients, called ALK translocation. It is all relative these 
days, but we were ecstatic with this news actually because we 
knew there was an FDA-approved targeted smart drug that 
specifically treated this mutation.
    Despite living through it, it is still difficult for me to 
put into words what that experience was like. It is not because 
it is emotional to recall those first few weeks, but there are 
no words to describe what it feels like to be told you have an 
incurable disease that will kill you.
    I hope and pray no one within the sound of my voice has to 
experience what I am failing to describe, but unfortunately, 
the odds are many will.
    One in every fourteen people receive a lung cancer 
diagnosis, and due to the lack of a reliable form of early 
detection, lung cancer is the most lethal form of cancer. It 
kills more people each year than breast, colorectal, pancreatic 
and prostate cancers combined.
    According to the NCI, approximately 160,000 people will 
lose their lives to lung cancer this year. That is the 
equivalent of a jumbo jet falling out of the sky every single 
day.
    The five-year survival rate, which has already been touched 
upon, is about 15 or 16 percent.
    For stage four patients, like me, the chances I will live 
more than five years is only one percent. That means I have a 
one percent chance of watching my kids grow up or growing old 
with my amazing wife.
    Lung cancer kills almost twice as many women as breast 
cancer and almost three times as many men as prostate cancer, 
yet the funding lung cancer receives pales in comparison due 
primarily to the stigma that lung cancer is self-induced as a 
result of smoking. I had never smoked, and the stigma needs to 
end.
    I have included a number of statistics in my testimony 
today, but I do not consider myself to be one; I never have, 
but stats are driven by facts, and the fact is more funding is 
needed for lung cancer research.
    The bottom line is research saves lives. I am a living 
example of that. The drugs that have kept me alive for the past 
18 months were not available just seven years ago.
    The first drug I was on, Xalkori, is a smart oral chemo, 
which specifically targets the ALK translocation. Within a week 
of being on Xalkori, I regained my energy, my vision was almost 
clear, I was back to work and, most importantly, was present at 
the birth of my daughter. Unfortunately, after two months, the 
efficacy of the drug played out just as dramatically.
    I was soon enrolled in a clinical trial in Philadelphia for 
another oral chemotherapy, a second generation ALK inhibitor, 
LDK378. The average response to LDK is seven and a half months, 
which is approximately how long I was on the trial before I 
started having major complications and progression of disease. 
However, during those seven and a half months, I watched my son 
turn four and my daughter turn one and my wife and I spent a 
week driving the Pacific Coast Highway, which is something we 
always wanted to do.
    LDK, now known as Zykadia, is the same drug that received 
the FDA's Breakthrough Therapy Designation last week.
    Unfortunately, earlier this year, the progression of 
disease was significant enough that my oncologist moved me to 
nontargeted intravenous chemotherapy. After two rounds of that 
chemo, scans revealed further progression of disease, so eight 
weeks ago, I began my second clinical trial, an immunotherapy 
trial, at Johns Hopkins under the direction of my amazing 
oncologist, Dr. Julie Brahmer.
    If you are keeping track, 18 months post-diagnosis, I am 
now in my fourth treatment. These targeted treatments, like 
Zykadia, have allowed me to live a relatively normal and 
productive life. Thanks to these medical breakthroughs, I have 
been able to experience many quality-filled days with my 
family.
    As a late-stage cancer patient, I am fully aware that I am 
kicking the can, so to speak. Luckily, I have honed my 
procrastination skills over the years, and with the right 
combination of science, prayer, and the love and support from 
what we affectionately call Team Kennett, we fully intend to 
keep kicking that can from trial to trial until one day we can 
all celebrate a cure for cancer.
    Again, I thank the Committee for holding this hearing and 
stand ready to answer any of your questions.
    The Chairman. You all are amazing, all of you. Thank you.
    Senator Collins.
    Senator Collins. Thank you, Mr. Chairman, and let me echo 
your thanks to our witnesses. This has been extraordinary 
testimony and very moving.
    Dr. Varmus, you are a former head of the National 
Institutes for Health.
    I strongly support more funding for biomedical research. I 
think it is one of the best investments that we can make. Even 
if you put aside the suffering that we can help alleviate, we 
should be investing because we are spending so much money on 
health care in this country, on illnesses that we can make real 
progress on if we were willing to increase NIH's budget.
    What do you think we should be spending on a percentage 
basis?
    I am mindful of the fact when I first came to the Senate a 
goal of our caucus was to double NIH spending over five years, 
and we did it, and then it went flat, and now it is down.
    What should we be spending?
    Dr. Varmus. Well, thank you for the question and for the 
praise for our agency, Senator Collins.
    This has been a traditional problem--deciding what kind of 
increases or what kind of budget NIH should receive. I think 
all of us who are in the business of leading this agency have 
felt that there is always going to be room for expansion, but 
expansion should be predictable and consistent.
    Over the years, on average, the NIH budget has doubled in 
constant dollars every decade, but we have had a series of ups 
and downs that were in fact a concern of ours when the effort 
to double the NIH began in 1998. I remember very distinctly 
sharing concerns with members of Congress that we would have 
this very desirable rapid increase and that then attention 
would turn to something else and we would have a flattening of 
our budget, and that is indeed what has happened.
    If we had a consistent increase, a super-inflationary 
increase, I would argue--as you know, there is a metric called 
BRDPI, Biomedical Research and Development Price Index, that 
tags our increases to a different inflationary rate, but I can 
tell you, as someone in the trenches of research, that even 
that inflationary metric does not really account for the 
increased costs of research because of the kinds of powerful 
technologies we now have at our disposal, but, if we had a 
consistent increase of about six or seven or eight percent a 
year, we would be ahead now of where we were even at the end of 
the doubling. I know all of us were hoping that at the end of 
the doubling there would be a continuation of the historical 
rate of increase.
    Now we have a lot of catching-up to do. As you have heard, 
the estimates are that we are about 25 percent below where we 
were when the doubling began or, sorry, when the doubling 
ended, and that level is about comparable to 2000.
    If we envision returning to that level over several years 
and then having a pledge to continue regular increases, I think 
we would be in good shape.
    I have personally proposed that the appropriators, who, of 
course, would like a one-year appropriation so they have 
control of the budget, also at the same time as making a 
budgetary proposal, consider the planning of out years so that 
we are dealing with a rolling five plan. It might not be 
possible to agree to it when the time comes for appropriations, 
but at least we have some stability, some expectation, and, 
from the point of view of a scientist-administrator, knowing 
that is the general intention, helps dramatically because we do 
not do research in one year. Research projects are five or ten 
or fifteen years long.
    Thank you for the question.
    Senator Collins. Thank you.
    That predictability, I think, is so important. I would 
actually like to see multiyear funding approved up front. I 
think that would be really helpful.
    Ms. Dempsey, you were your mother's primary caregiver, and 
I know you had to become very familiar with different 
treatments, but it is extraordinary that she was able to fight 
her cancer for 17 years, and I am sure you were a real part of 
that.
    Mr. Kennett also mentioned how important Team Kennett was, 
and has been, in his battle.
    Could you talk a bit about the nonmedical treatments that 
the center provides that are so important to patients and their 
families.
    Ms. Dempsey. Sure, thank you.
    We like to think--I often speak about it from head to toe, 
which is a holistic approach. Certainly, support services are 
very important, but taking care of the whole person--the whole 
mind and body--is very, very important.
    The whole family, not only the patient, but the caregiver, 
the children, anybody who has been impacted by cancer, also 
needs those support services, and that was part of the 
conception of the center--was the idea behind helping everyone, 
the patient included, but the entire family. Very, very 
important.
    Senator Collins. Thank you.
    Thank you, Mr. Chairman.
    The Chairman. Dr. Varmus, have you had a really surprising 
discovery that when it started out you never would have 
expected?
    Dr. Varmus. I can give you many examples in the last--
especially over the last five or ten years, but I would like to 
pick up on Chip Kennett's observation because it has been 
directly dramatized for you today in the story of his own 
cancer.
    I, myself, work on lung cancer and the genetic basis of 
lung cancer, and I was astounded.
    We think of chromosomal rearrangements, movements of one 
part of a chromosome to another, as a kind of abnormality that 
most commonly occurs in leukemias and lymphomas, but about 10 
years ago, people working on the kind of lung cancer he has, 
who had no carcinoma of the lung, discovered that a certain 
subset of patients--about five percent, as he correctly 
stated--have a translocation in a solid tumor that takes a gene 
we knew a little bit about because we had studied that gene in 
childhood leukemia. That gene makes an enzyme that we know 
quite a bit about, and it was being made inappropriately active 
as a result of the chromosomal exchange.
    It was possible to go in just a few years, very few years, 
from that observation, which came about because people were 
just looking throughout the genome with these now powerful 
tools that we have and found that this gene which had not been 
implicated in cancer before was now inappropriately activated, 
and find drugs that were shown in early-stage clinical trials 
to be very effective at inducing a remission.
    Unfortunately, as Chip knows, many of these drugs become 
inactive because the cancer is very wily. It is an evolutionary 
system that evades the repressive effects of the drug and 
generates new mutations that make the drugs not workable.
    We have been able to outfox that in some cases by 
developing so-called second-line drugs that can even treat 
these drug-resistant forms of his inappropriately activated ALK 
kinase, and that second-line drug worked for a while.
    Now we are thinking about other new ways to do things, and 
I think now he is experiencing the benefit of decades of 
studies of basic immunology. How does the immune system work? 
Why doesn't it reject cancers?
    What we now know is that it is possible to get rid of some 
of the breaks on the immune system and to make the immune 
system work for us. That is what is happening now. He is 
getting an antibody which is going to block the way in which 
the immune system suppresses itself.
    Suppressors are important, too, because we do not want to 
be reacting to our normal tissue, but, when a cancer arises and 
the immune system has the ability to react to an abnormal 
protein in a cancer cell, then we have an opportunity, so those 
three things--a new targeted drug for a new gene indication, a 
way of getting around drug resistance and a way to use the 
immune system--all happened in the last ten years.
    We can extend life and make cancer a more manageable 
disease by taking--but we have got to make the investment in 
those basic aspects of research that are not necessarily going 
to pay off, but the risk-taking is worth it.
    The Chairman. Senator Warren.
    Senator Warren. Thank you, Mr. Chairman.
    Mr. Kennett said research saves lives. Ms. Harper said 
research dollars equal lives. I would like to pick up where 
Senator Collins was on the question about investments and 
investments at NIH, and I particularly want to just build the 
record a little bit here about the relationship between federal 
spending in long-term savings on health care.
    You know, a few years ago, a NIH study found that in 2010 
the Nation spent about $124 billion on cancer care. That is 
almost three times bigger than last year's sequester cuts, and 
it is 25 times bigger than the entire annual budget of the 
National Cancer Institute.
    Dr. Varmus, I just want to start with a different way to 
think about this question. Can you comment on how much money we 
could save the health care system if we could better prevent 
even one type of cancer?
    Dr. Varmus. Well, we can approach that question in a few 
ways.
    Senator Warren. Push your button.
    Dr. Varmus. I should know by now.
    We can approach that in several ways. The NCI itself has 
taken the data on which you base the $124 billion of spending 
in 2010 and build an algorithm that is available online to show 
how much we spend on care for any of these cancers.
    I think you have to add to that other kinds of potential 
savings. When people die at an early age or become 
incapacitated by cancer or can no longer work because of it, we 
have big, big expenditures there, too, that are very important 
to calculate.
    Then people have their valuation of life, which is another 
thing we like to think about when we do the calculation of how 
much we would gain if we could reduce the frequency and reduce 
the cost of supporting someone who is going through cancer 
treatment.
    The maximum, of course, would be the total amount of money 
we now spend, and we can give you those numbers for each type 
of cancer, and we can even divide that into the amount we spend 
when a cancer is diagnosed, when care is continuing and the 
latter stages of cancer journeys that end unhappily.
    Senator Warren. Yes.
    Dr. Varmus. It is possible to give you good numbers, but I 
think it is just overall important to emphasize the 
multiplicity of kinds of savings we could achieve.
    Secondly is the fact that whenever these economic analyses 
are done we usually come back to the fact that the public, 
everybody, wants to be healthier. People do not want to have 
cancer, and that is hard to place a dollar value on, but it is 
an incredibly important aspect of what we do and what I believe 
the country should be investing in.
    Senator Warren. Well, I think that is a powerful answer 
that you give--a reminder that even the dollars we talk about 
that we currently spend in the health care system on cancer do 
not come close to identifying all of the costs, all of the out-
of-pocket costs, much less all of the human costs, associated 
with it, but that makes it, to me, all the more mystifying that 
we have not increased our funding for NIH and that, in fact, as 
you rightly say, if we do a BR--what is it? DPI? That is right. 
I will get it right.
    Dr. Varmus. BRDPI. BRDPI.
    Senator Warren. That is right; that if we do even a modest 
inflation adjustment, that we are down somewhere between 20 and 
25 percent in terms of spending since 2000.
    As I understand it, right now, NIH is able to fund, has the 
resources to fund, only one in six of the research 
applications, but I want to ask you, Dr. Varmus, just to tell 
us; are the other five applications not worth funding?
    What does this mean that we are now in a situation where 
only one is five research proposals----
    Dr. Varmus. At NCI, Senator, it is actually a little worse 
than that. We fund about 13 percent of the applications; that 
is, we turn down 87 percent.
    Now, historically, I would not sit here and say every one 
of those grants should be funded. Historically, the NIH seems 
to function very well when we fund about a third of our 
applications. I say that in part because, as someone who has 
sat in review and who has overseen large numbers of grant 
applications, we can tell the top third pretty well.
    When we have to dissect out of that top third the one out 
of three or so that actually get funded, we are in trouble.
    Moreover, that number is slightly deceptive because new 
proposals often--as opposed to renewals--do not do as well and 
in very hot fields of research, where a lot of progress is 
being made, the rate of success may be even lower because there 
are so many applications that are being looked at.
    I think it is just impossible, and there are data to 
support the idea that we are not very good at telling the top 
10 percent from the second tier, the second 10 percent, of our 
applications, and we know that we are missing important 
opportunities.
    We are seeing the ends of careers of people in whom the NIH 
has invested a lot of money because we generally paid for the 
training, either directly or through fellowships or through the 
support of students on grants, and, yet, people get to a 
certain stage in life, and then they are unable to get funded. 
The dean of the medical school does not like it when you do not 
get funding, and careers terminate in appropriately.
    We are extremely concerned about the issues you are 
raising.
    Senator Warren. If the Chairman will indulge me for one 
more question, I would just like to ask Dr. Sellers if he would 
weigh in a little bit on the impact of underfunding the NIH and 
other medical research on the development of new therapies, new 
approaches, a more comprehensive approach to treatment in the 
cancer area.
    Dr. Sellers?
    Dr. Sellers. One of the consequences of the exceedingly 
painful pay lines is that it promotes scientists who are in the 
business of science, right?
    If you do not get your grants, the dean is mad; you are not 
going to keep your lab going.
    To push for really boring incremental steps, we do not have 
time for that, right?
    We need bold thinking. We need innovation. We need people 
to take some changes.
    Not everything should be mad, crazy, out there, but we are 
doing such obvious next steps, incremental steps, because that 
is what the study sections have gravitated to--well, we know 
this will work; if we have got X amount of dollars to invest, 
we want to make sure that we get something out of it.
    I think that is absolutely stifling the biomedical 
community.
    I agree with Dr. Varmus's comment that you do not want to 
fund all of them, but we have gone to the other end of the 
spectrum, and we are funding incremental science rather than a 
nice balanced portfolio where we are swinging for the fences 
some of the times.
    Senator Warren. Well, I appreciate it very much.
    Thank you, Mr. Chairman, for letting me go over my time.
    I want to say thank you again to Mr. Kennett and Ms. Harper 
for getting out there and being advocates on behalf of better 
funding for NIH.
    We can do more. We can do so much more, but we are all 
going to have to pull together on this and follow Senator 
Collins's leadership and the leadership of others on it.
    Thank you.
    The Chairman. Senator Ayotte.
    Senator Ayotte. I want to, first of all, thank the Chairman 
and Ranking Member for holding such an incredibly important 
hearing. This is an issue I think that has touched everyone's 
life at some point.
    I am just honored to be here with my friend, Chip Kennett, 
and his wife, Sheila. They are incredible people. They come 
from New Hampshire, my home state, and Chip grew up in Conway.
    His family is just an incredible family, who has been so 
involved in New Hampshire's Mount Washington Valley, and just 
talk about courage. Talk about just a role model for other 
people, to be here for your advocacy, Chip, but, you know, you 
meet some people in your lives that touch you, and Chip is one 
of those people, so it is great to have you, Chip.
    I want to say the same thing for you, Ms. Harper. It was 
really inspiring to hear you talk about your battle with 
cancer. Thank you for being here.
    I wanted to ask--let me just add the support that I have 
for my colleagues. This issue of investing in NIH and 
biomedical research is a bipartisan issue, and it is an 
incredibly important issue because this is an issue in terms of 
cancer, of finding a cure for cancer of all types that, again, 
hits Republicans, Independents, every--Democrats. 
Unfortunately, everyone gets touched with cancer, and this is 
something we all need to work together on.
    I am honored to be here with my colleagues who I know are 
very committed to this issue as well, but one thing I wanted to 
ask you, Dr. Varmus, is I know that with the investment that is 
being made under NIH through your institute there are also 
research dollars that we are putting on other places like DoD, 
and how is the coordination among those research dollars, and 
what is your view on how--what should we be doing there?
    Should we be continuing also to fund the DoD research or 
putting all those dollars under NIH?
    Is that communication line good?
    I was just thinking, making sure that we are maximizing our 
opportunities in terms of the research that we are doing.
    Dr. Varmus. Thank you, Senator Ayotte.
    We, of course, are in touch with our colleagues at DoD, and 
we welcome research money that comes through a variety of 
channels. In fact, in addition to money that comes to cancer 
research through DoD, there is money that comes through other 
institutes of the NIH, through the Department of Energy and 
through many private and industrial channels as well.
    If you look at the entire national cancer program, the NCI, 
of course, is the lead player, but there are many other private 
and public sources of money from states and other places, and 
we do pay a great deal of attention to all of these other 
channels.
    In particular, of course our federal colleagues work 
closely with us, and we are well aware of what is going on at 
the Department of Defense through their breast cancer and 
prostate and other initiatives, just as my colleagues at the 
neurological institute at NIH are aware of the investments made 
through the DoD in neurological diseases.
    I do not see a problem with this. I think it is important 
to keep track of it. Many of our scientists who are supported 
by NCI are also supported by the Department of Defense, and we 
welcome that co-funding because we are underfunding our 
investigators.
    As I mentioned, science has gotten very expensive--and to 
run a very productive lab that uses our so-called high through-
put intense technologies and make use of mouse models and do 
research with human subjects. The research is very expensive, 
and it may cost half a million to a million dollars or more for 
a laboratory to be productive and doing imaginative things.
    Senator Ayotte. Yes, I do not dispute that. I think that is 
incredibly important, that we invest more money in research.
    I think what I wanted to make sure is that if we are 
investing at DoD that you are also coordinating that so that we 
are----
    Dr. Varmus. The coordination goes on not only at the 
administrative level, if I may interrupt. Scientists are aware 
of what other scientists are doing. They go to meetings. They 
exchange. They read the literature, which is quite open these 
days. I think there is a higher degree of interaction than some 
people often think.
    Senator Ayotte. Good. Well, that is really good to know.
    The other issue is, obviously, Dr. Sellers, I heard you 
talk about 400 clinical trials that are ongoing at the Moffitt 
Center, and also, I know we have Mr. Kennett here who has been 
really participating in a number of clinical trials.
    Do you feel that in terms of the approval process on the 
FDA that you are getting the support you need there to make 
sure that in these clinical trials that you are being able to 
really get things to trial that need to get to trial, that you 
are getting the type of cooperation you need on the FDA end, to 
make sure that we are not delaying getting life-saving drugs to 
market, that we are not delaying getting people who need to get 
in trials, in trials?
    Just as I heard you talk about it, I just wanted to hit 
that issue, to see what the experience has been and what your 
thoughts are on that issue.
    Dr. Sellers. It takes longer than any of us would like to 
have a trial approved. You heard earlier about an example with 
the ALK inhibitors that was a success. When you have that 
compelling evidence, it is not burdened by the FDA to delay the 
approval.
    There was recent approval of a combination treatment for 
melanoma, probably the most dramatic effect that we have seen 
for an incurable disease when metastatic, just in the past 
year.
    The challenge is the running time it takes from the time of 
a discovery to the time it gets--we have a target--to clinical 
trial to completion; it has taken a long time.
    To follow up on the example of the ALK inhibitors, what we 
are learning now because of the genetics of cancer is that it 
is not one size fits all, and so, if you were going to do a 
trial of lung cancer, if only five percent carry that mutation, 
that trial would be a failure.
    You really need to focus on the patient population that has 
the target for which that therapy will work, and that is where 
the work needs to be done right now--and the opportunity for 
us. We have the technologies to do the profiling.
    I was shocked when--and your statistics were spot-on. Lung 
cancer is the number one killer.
    The head of our thoracic oncology program says, Tom, lung 
cancer is a rare disease.
    I said, Dr. Antonio, what are you talking about?
    He said, when you think about it molecularly, we have got 
all of these different subsets, and the ALK inhibitors are not 
going to work for a lung cancer that does not have that 
particular marker.
    That is where we need to do the science, to identify what 
are those driver mutations, get the right patients enrolled in 
the trial, and, when we can do that, we see that the approval 
goes very quick because the signal of benefit is much more 
evidence.
    Dr. Varmus. Can I just amplify a couple of points?
    First of all, it is incredibly important to emphasize this 
notion that lung cancer is not one disease; it is many 
different diseases that happen to arise in the lung, in 
different cells, with different mutations.
    Secondly, the FDA has a difficult problem. In my view, 
Richard Pazdur, who runs the oncology division, and his 
colleagues have been incredibly responsive to the changes in 
science that require considerations of companion diagnostic 
tests. The possibility of doing clinical trials as the NCI is 
now planning are inherently different in character because we 
do genetic testing first and then put patients into certain 
arms of the trial.
    Third, to consider the use of two unapproved drugs in a 
combination trial.
    These are new challenges for the FDA, which I believe they 
are responding to extremely well.
    Senator Ayotte. Thank you.
    The Chairman. Senator Whitehouse.
    Senator Whitehouse. Thank you, Chairman.
    Thank you, Ranking Member Collins.
    Dr. Varmus, welcome.
    All of you, thank you for your advocacy and for your work 
in this area.
    You will recall, Dr. Varmus, we had a long ordeal getting 
through the Pancreatic Cancer Research and Education Act, which 
then ultimately morphed into the Recalcitrant Cancer Research 
Act, and that finally passed in 2012. It required that you all 
develop a scientific framework for a series of cancers that 
were not getting particular attention and that had not 
responded to the sort of general treatments that had been 
successful and, therefore, were deemed recalcitrant.
    In February, you reported out the scientific framework for 
pancreatic cancer, and I want to thank you very much for that 
accomplishment.
    You indicated in the framework that you planned to pursue 
four targeted research initiatives. Can you tell us a little 
bit more about the four targeted research initiatives.
    Dr. Varmus. Absolutely. Thank you, Senator, for both your 
advocacy for the work we do and for the question.
    As Senator Whitehouse indicated, I would only quarrel 
slightly with the idea that we were ignoring pancreatic cancer 
when, in fact, the budget for pancreatic cancer research has 
gone up quite quickly over the first decade of the 21st 
Century.
    Moreover, as you and I have discussed, a large amount of 
work we do on certain kinds of cancer genes and certain basic 
attributes of cancer are highly applicable to pancreatic 
cancer.
    I recognize what a terrible disease this is. Indeed, 
today's New York Times has the obituary of a close friend of 
mine who died of pancreatic cancer three weeks after diagnosis.
    I am totally with you in curing this.
    Senator Whitehouse. Thank you.
    Dr. Varmus. The first thing that we noticed in the workshop 
that we held to define the framework was a surprising 
phenomenon, that many patients who had been diagnosed with type 
1 diabetes, within a year, developed--a significant number, 
higher than expected percentage, developed pancreatic cancer.
    We are always looking for ways to diagnose this cancer at 
an earlier stage, and we have been--we are about to release, or 
we are considering and will expect to release, a request for 
proposals to study that relationship between diabetes and 
pancreatic cancer.
    Secondly, at our workshop, we recognized that there are a 
lot of risk factors for pancreatic cancer that have been 
underappreciated--some rare genetic mutations that are 
inherited, cysts of certain kinds that predispose to pancreatic 
cancer, and we are setting up an activity which is not yet 
fully formed to try to pursue that more effectively.
    Third, we are interested in doing more work on the immune 
response to pancreatic cancer, and there are many things that 
are in the works now, including some recent publications, that 
show the activity in this area that we are pursuing.
    Fourth, we discussed the importance of a mutation in 
another gene that has not yet been described here, a gene 
called the K-Ras gene, which is mutated in over 95 percent of 
pancreatic cancers and is a powerful driver of pancreatic 
carcinogenesis.
    Moreover, that gene is mutated in a very large number of 
other kinds of cancers, including lung adenocarcinoma at 30 
percent and in colon cancer, where 50 percent of patients have 
that gene mutated.
    We have reengineered our budget at the Frederick National 
Lab for Cancer Research out in Frederick, Maryland and 
recruited an outstanding scientist, who used to be the director 
of the Comprehensive Cancer Center funded by the NCI at 
University of California-San Francisco, to lead an 
international effort, which is now well underway, to try to 
understand this gene.
    If we could make progress against this so-called K-Ras 
gene, which has been implicated in pancreatic cancer for 30 
years, we would have a tremendous impact, I believe, on 
treatment of many kinds of cancer.
    This activity, which is both housed and centralized at 
Frederick but also engaging scientists all around the world in 
a six-pronged effort that I could describe to you in more 
detail, I think has a great chance of changing the landscape in 
this important area.
    Senator Whitehouse. Thanks.
    One last question. You came in ahead of the statutory 
deadline. I appreciate that.
    Dr. Varmus. We were--right.
    Senator Whitehouse. You came in, in February, and it was 
not required until July of 2014.
    There was a statutory requirement for benchmarks for 
progress by July 2014. Do you think you will meet the deadline 
for the benchmarks for progress by the deadline?
    Dr. Varmus. Yes, we will make that deadline.
    We will also make the deadline for reporting to you on a 
second difficult cancer--small cell lung cancer, a lung cancer 
but, again, different from the lung cancers we have been 
talking about, one that has a really very dismal outlook and we 
do not understand very well.
    It has been my view, because it has been difficult to study 
this kind of lung cancer, there has not been enough investment 
in it. Sometimes these things are not willfulness on the part 
of NCI leadership. It is a question of where the scientific 
opportunities are, which scientists are willing to work on 
these problems as opposed to another problem that is more 
accessible.
    Senator Whitehouse. Yes.
    Dr. Varmus. We think we see some new ways to pursue small 
cell lung cancer, and I am hopeful we will have a report as 
effective as our pancreatic cancer report to you by the next 
deadline.
    Senator Whitehouse. Terrific. Well, we are thrilled with 
your work and applaud your successes and would like to urge you 
forward in more meaningful ways than just urging you forward.
    Dr. Varmus. We would appreciate that, Senator. Thank you 
very much.
    Senator Whitehouse. We hope we can put the dollars behind 
our enthusiasm.
    The Chairman. Senator Whitehouse was very kind, along with 
Senator Blumenthal, to have a regional hearing for us up in 
Connecticut over the issue of insurance companies dropping 
providers--namely, doctors, hospitals--from their plans.
    This happened to Dr. Sellers at the Moffitt Cancer Center. 
An insurance provider under Medicare Advantage, which is HMOs 
for Medicare--that is an insurance company, an HMO--dropped 
them as a provider.
    Obviously, the impact on the patient in a treatment, to 
suddenly find out that you have lost your doctor or you have 
lost, in this particular case, an entire research clinic is 
devastating.
    What did you learn, Dr. Sellers, about the impact on the 
patient when the insurer tells them that they cannot continue 
going to the same doctors for their cancer treatment?
    Dr. Sellers. That was the most unfortunate experience. It 
caught us, as an institution, a little bit by surprise when 
this happened.
    The patients were not happy. They happen to have a very 
strong relationship with their doctors and their care 
providers. People love our nurses at Moffitt.
    I think it is Nurses Week or Nurses Month or something, so 
we need to give a shout-out for the nurses.
    It is a challenge, and it is unfortunately a symptom, I 
think, of the health care environment--the moving target.
    In our understanding, it was an expensive program for that 
insurance company to offer, so they were very clear that was 
something they did not wish to continue.
    The Chairman. Some of them came back, and some of them did 
not come back; is that right?
    In the meantime, the toll, emotionally, physically--that 
aspect of hope that you talked about, Ms. Harper.
    Dr. Sellers. I think when a cancer patient is in a battle, 
that is the last thing that you need--is the distraction of an 
insurance company saying, no, you cannot see your doctor 
anymore, but that is something we absolutely should not allow.
    The Chairman. Years ago, Ms. Harper, in her show, was in 
the portrayal of entry of women into the workforce. Now women, 
in the meantime, have made tremendous strides in their 
professional careers and the workforce, and, yet, some studies 
have shown that women in the workforce with cancer face 
employment issues years later after their diagnosis, and so put 
that in context for us, Ms. Dempsey. You have dealt with that.
    Ms. Dempsey. As I sit here, I am trying to sit quiet 
because I just want to hit this button and respond to every 
single one of you.
    Not to lessen your question, but may I say--and this could 
be a leaving remark, so you can put it on the end--that perhaps 
we should adopt Amanda Dempsey's mantra, which is one step at a 
time, one day at a time and keep moving forward?
    We ran into clinical trials that were not quite available 
constantly as mom had recurrences, and it was very frustrating 
because mom would have accepted the clinical trials regardless 
of them being FDA-approved.
    I am hearing a lot of the same difficulties, so it is very 
enlightening.
    I think we just need to keep moving forward and do it 
together.
    The Chairman. All right. In the Journal of Cancer, 
researchers at the University of Michigan found that women 
diagnosed with breast cancer, who eventually go on to receive 
chemotherapy, face a higher likelihood of unemployment over 
time.
    Anybody want to comment on that? [no response]
    Okay, Dr. Sellers, Moffitt's work on geriatric oncology. 
You have made quite a few contributions. What can be done to 
encourage more geriatricians to engage in this research 
activity?
    Dr. Sellers. Well, I think that the geriatricians are aware 
of cancer as a problem and they are going to be more involved.
    We need to get better coordinated care to have the 
geriatricians who are able to do the functional assessment--
what is the patient able to do, their nutritional status, their 
mental status, their functional abilities, can they walk, can 
they move heavy weight.
    Getting them working carefully with the rest of the medical 
team that would deal with the cancer--it has to be a 
partnership, and that is something that I think is the reason 
why our Senior Adult Oncology Program is where it is. It is 
because we work in a multidisciplinary team and take that into 
consideration.
    The Chairman. Ms. Harper--first of all, Dr. Varmus.
    Dr. Varmus. No, I am happy to let Ms. Harper go first.
    Ms. Harper. No, answer.
    The Chairman. Do you have a response to that?
    Dr. Varmus. I do because there are a number of ways in 
which the NIH is trying to foster exactly what you have 
espoused; that is, getting people who study aging to think more 
about the effects of aging on cancer.
    We have a very close relationship with the National 
Institute on Aging. We are part of what they call their 
GeroSciences Group. We have a number of clinical trials that 
are specifically focused to aspects of aging and cancer.
    We are trying to understand one interesting phenomenon--
that cancer incidence often falls at very advanced ages. What 
is it about the aging human being that may result in some 
decrement in cancer incidence?
    Then there are questions about the basic biology of aging--
mutation rates, the failure of the immune system in aging, and 
the changes in the hormonal and environmental atmosphere that 
surrounds cells that are potentially targets for cancer-causing 
processes that influence the frequency with which cancer arises 
in older people.
    We do believe that the traditional bread and butter of this 
Committee, studying the aging process, is very closely 
intertwined with what we are trying to learn about cancer.
    The Chairman. Thank you.
    Ms. Harper, in your testimony, you talked about alternative 
medical options.
    I have a good friend who was going through the traditional 
medical route and then went very successfully with the 
alternative route and is now back on the medical route.
    You want to--how did those treatments work together to be 
healthy for you?
    Ms. Harper. My doctor----
    The Chairman. Push the microphone.
    Ms. Harper. Chairman Nelson, thank you for that question 
because every cancer patient is different. That is what I have 
learned--and when the doctor said there are many kinds of lung 
cancer.
    My doctor, Natale, Ron Natale, he is a wonderful clinician 
and also a researcher. He said, you know, the acupuncture and 
the idea of taking traditional Chinese medicine, granules or 
tea; he said, that is fine with me, and then I asked him about 
another thing for growing hair. I was losing a little. I have 
been lucky so far, and he said, no, no, do not do that. It 
contains a hormone that might not go with what you are taking.
    I say do everything within your own reason.
    I have received so many letters and texts and 
prescriptions.
    Most recently, I was having--it had to be canned asparagus, 
ripped up three times a day in a blender, and I was to drink 
that. My husband, who is very healthy, said, why wouldn't it be 
fresh asparagus?
    I mean, honestly.
    There was some mud I was supposed to take from an Indian 
reservation, put it into a capsule and take that, and it is 
loving, and I appreciate it, and I get what they want--me to be 
well, but you really have to watch.
    The Chairman. Understood.
    Ms. Harper. Yeah. I stayed with--my oncologists are 
fabulous, and Natale has told me. He said, Valerie, what you 
have I have never seen in 30 years, which is leptomeningeal so 
active without it in any other part of your body.
    I am going the traditional medicine way. It has worked, and 
when my, you know, three-month to six-month happened--the 
diagnosis was in January of 2013--I can only say maybe it is 
the meridians opened by the ancient Chinese; maybe it is the 
pills I am taking, which are wonderful.
    They were just developed four years ago--the drug I am on. 
I am on two, and, no more chemo. My doctor does not do it.
    I have kind of been working. I think that is what people 
have to do--listen to their own heart and sense, but also do 
try it. Try what might keep you alive.
    Yes, please.
    Dr. Varmus. I just want to emphasize one important part of 
your story--that you talked to your doctor about what you were 
doing.
    Ms. Harper. Oh, yes.
    Dr. Varmus. At my days as head of Memorial Sloane 
Kettering, the things that were often conducive to side effects 
of drugs that were being taken through conventional medicine 
were the surreptitious taking of other kinds of things.
    Ms. Harper. Yes, absolutely.
    Dr. Varmus. If you do things that are alternative, I would 
just emphasize to all cancer patients----
    Ms. Harper. Oh, yeah.
    Dr. Varmus. [continuing]. To talk to their oncologist to be 
sure we do not have an intermingling of substance that result 
in toxicities that are very difficult to explain without 
information.
    Ms. Harper. You have to take responsibility for your own 
health and keeping your hope up and saying live in the moment. 
If you are worrying about dying, you have missed the moment.
    I miss her beautiful coral jacket if I am here saying I am 
going to die in a month; do you know?
    I just picked that out, Senator Collins, because there is 
so much joy and beauty and many wonderful things in life.
    If you are living, do not go to the funeral until the day 
of the funeral, and we are all terminal, and this young man is 
spectacular. He touches my heart so deeply because of the 
courage and the forward motion of his life, not just for 
himself but for his children and his wife, and what you said 
was great. The hope is very important; also, active engagement 
in the fight.
    I am sorry I talk too long.
    Ms. Dempsey. Because you are living with cancer.
    Ms. Harper. Yes.
    Ms. Dempsey. You are living every day.
    Ms. Harper. Yes, you live while you----
    Ms. Dempsey. Living forward.
    Ms. Harper. Yes, exactly.
    I hope I answered your question.
    The Chairman. Thank you.
    Ms. Harper. Good.
    The Chairman. I hate to bring this to a close, but within a 
few moments we are going to have to leave to vote because a 
vote has been in progress already for six minutes.
    Dr. Varmus, I want to end up with asking you; we are 
worried, as we have studied the effects of the ACA, about a 
physician shortage. Now how is that going to affect you in 
oncology physicians and researchers? How are we going to able 
to provide the numbers?
    Dr. Varmus. Well, there are a couple of questions. I am not 
an expert in medical economics, but I can tell you a few things 
that are obvious.
    One is that the number of cancer cases is rising. Even 
though the incidence, when age-adjusted, is going down, the 
burgeoning of the older population, as I mentioned earlier, is 
accounting for a big increase in the number of cases, so we are 
going to need more oncologists.
    Secondly, we are going to need--if we are going to treat 
people more effectively and treat them more--and try to drive 
down cancer rates and cancer mortality rates, we are going to 
need more cancer research, and we have had a long discussion 
already today about how the funding of biomedical research is 
going to affect our ability to recruit the best people to work 
on that problem.
    Then, of course, the economics of the marketplace are going 
to be influential in determining where the most talented 
physicians go to practice, and I think we need to be aware of 
how those rates will influence people in the future.
    We are hoping that by providing much more effective ways to 
treat patients, we not only benefit patients, but we attract 
much better physicians to come into the field of oncology 
because right now, I think, is just one of the most exciting 
things to do because it is changing all the time.
    When I hear Chip Kennett's story, I see layer after layer 
of new opportunity for finding new ways to treat his disease, 
and that cannot be anything but exciting for a physician who is 
trying to take care of you and do what you want, which is to 
have a good outcome. We are trying to provide through science 
the hope and the opportunity to make that outcome a good one.
    The Chairman. I want to, just before we close out, put the 
backdrop to this whole thing of the discovery of these wonder 
drugs. A three to six-year period of drug discovery and pre-
clinical, and then a six to seven-year period of phase one 
through three of the clinical trials, and then the FDA review, 
and then the approved drug, and that is another half-year to 
two-year period--so we are talking about a long continuum of 
time.
    Senator Whitehouse.
    Senator Whitehouse. I yield to Senator Collins.
    The Chairman. Okay, Senator Collins.
    Senator Collins. As some of my colleagues know, I have 
never missed a vote, so this is making me very nervous as this 
vote ticks on, but, for the record, I am going to submit some 
additional questions because I am really interested in Ms. 
Dempsey's comments on how it was to find clinical trials for 
her mother.
    I would love to know the experience of Ms. Harper and Mr. 
Kennett in how did you locate the kinds of treatment that has 
been successful for you because I think that is really 
difficult for a lot of patients who do not have your expertise 
or your persistence or your hope or your contacts, so that is 
something I am going to submit for the record.
    To Dr. Sellers and Dr. Varmus, I am going to submit 
questions to you on whether we have too many silos in our 
research or whether there is good sharing. The reason that I 
want to hear your opinion on this in writing is I have always 
thought that if the Federal Government is financing it, boy, it 
ought to be shared.
    Maybe I am naive about that. Maybe there is more to this, 
but I do not want there to be silos.
    I want to make sure that researchers get the advantages of 
other researchers' work if it is federally funded. If we are 
all paying for it, let's make sure that it is shared.
    Most of all, I want to thank each and every one of you for 
being here today, for giving me hope and for your extraordinary 
testimony. It really was a wonderful hearing.
    I thank you, Mr. Chairman.
    I am now going to run to the Senate floor. Thank you.
    The Chairman. You have three minutes to vote.
    Senator Whitehouse.
    Senator Whitehouse. I will be extremely quick.
    I just wanted to thank you for raising this question of the 
provider networks with Dr. Sellers. There are obviously very 
good reasons for limiting provider networks--in order to build 
a network of coordinated care, of linked HIT support, of 
accountability, to quality metrics and outcomes metrics. It is 
all terrific.
    There are also some bad reasons to do it, like for 
negotiating leverage. If you will not give me a good price, I 
will cut you out of my network. Even worse, you have a lot of 
expensive patients; so I do not want you in my network, and, 
until we can work on making sure that these insurance companies 
are being transparent about why they are doing it, we are going 
to continue to have problems. I hope it is something we can 
continue to work on, and thank you for raising it.
    The Chairman. We can have a hearing on just that subject, 
because we have got to race out of here to vote, we give you 
our love; we give you our appreciation, and we thank you for a 
most illuminating hearing.
    The Committee is adjourned.
    [Whereupon, at 4:01 p.m., the Committee was adjourned.]    
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                                APPENDIX

    
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                      Prepared Witness Statements

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                        Questions for the Record

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                       Statements for the Record

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                             [all]