[Senate Hearing 116-537]
[From the U.S. Government Publishing Office]




                                                        S. Hrg. 116-537
 
                    PANCREATIC CANCER: FIGHTING THE
                       WORLD'S TOUGHEST CANCER IN
                         ALABAMA AND NATIONALLY

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

                                HEARING

                               BEFORE THE

                       SPECIAL COMMITTEE ON AGING

                          UNITED STATES SENATE

                     ONE HUNDRED SIXTEENTH CONGRESS


                             FIRST SESSION

                               __________

                          BIRMINGHAM, ALABAMA

                               __________

                           NOVEMBER 15, 2019

                               __________

                           Serial No. 116-16

         Printed for the use of the Special Committee on Aging
         
         
         
         
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                           ______                       


               U.S. GOVERNMENT PUBLISHING OFFICE 
47-057PDF            WASHINGTON : 2022        
        
        
        
                       SPECIAL COMMITTEE ON AGING

                   SUSAN M. COLLINS, Maine, Chairman

TIM SCOTT, South Carolina            ROBERT P. CASEY, JR., Pennsylvania
RICHARD BURR, North Carolina         KIRSTEN E. GILLIBRAND, New York
MARTHA McSALLY, Arizona              RICHARD BLUMENTHAL, Connecticut
MARCO RUBIO, Florida                 ELIZABETH WARREN, Massachusetts
JOSH HAWLEY, Missouri                DOUG JONES, Alabama
MIKE BRAUN, Indiana                  KYRSTEN SINEMA, Arizona
RICK SCOTT, Florida                  JACKY ROSEN, Nevada
                              ----------                              
            Sarah Khasawinah, Majority Acting Staff Director
                 Kathryn Mevis, Minority Staff Director
                 
                         C  O  N  T  E  N  T  S

                              ----------                              

                                                                   Page

Opening Statement of Senator Doug Jones..........................     1

                           PANEL OF WITNESSES

Hillery Head, Lost Loved One to Pancreatic Cancer, Birmingham, 
  Alabama........................................................     4
Lynette F. Nall, Lost Loved One to Pancreatic Cancer, Pleasant 
  Grove, Alabama.................................................     5
Steve Cook, PanCAN Advocate, Lost Loved One to Pancreatic Cancer, 
  Huntsville, Alabama............................................     7
J. Bart Rose, MD, MAS, Director, Pancreatobiliary Disease Center, 
  University of Alabama, Birmingham, Alabama.....................     9

                                APPENDIX
                      Prepared Witness Statements

Hillery Head, Lost Loved One to Pancreatic Cancer, Birmingham, 
  Alabama........................................................    25
Lynette F. Nall, Lost Loved One to Pancreatic Cancer, Pleasant 
  Grove, Alabama.................................................    28
Steve Cook, PanCAN Advocate, Lost Loved One to Pancreatic Cancer, 
  Huntsville, Alabama............................................    31
J. Bart Rose, MD, MAS, Director, Pancreatobiliary Disease Center, 
  University of Alabama, Birmingham, Alabama.....................    34


                    PANCREATIC CANCER: FIGHTING THE

                       WORLD'S TOUGHEST CANCER IN

                         ALABAMA AND NATIONALLY

                              ----------                              


                       FRIDAY, NOVEMBER 15, 2019

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 9:33 a.m. (CT), 
at University of Alabama at Birmingham, West Pavilion, 
Conference Room E, 615 18th Street South, Birmingham, Alabama, 
Hon. Doug Jones presiding.
    Present: Senator Jones.

            OPENING STATEMENT OF SENATOR DOUG JONES

    Senator Jones. This hearing will come to order. Good 
morning, and welcome to a field hearing, an official U.S. 
Senate field hearing, Pancreatic Cancer: Fighting the World's 
Toughest Cancer in Alabama and Nationally.
    I am pleased to once again have the opportunity to bring 
the work of the U.S. Senate here to Alabama, the Special 
Committee on Aging, of which I am a member.
    I would like to extend my thanks to the Chairwoman of the 
Committee, Susan Collins of Maine, and the Ranking Democrat, 
Bob Casey from Pennsylvania, and all of their staffs for help 
in getting this hearing and facilitating this hearing today. 
Also, it is appropriate because we are here during Pancreatic 
Cancer Awareness Month. I see a lot of purple around here, a 
lot of purple ties, purple shirts, purple T-shirts, and purple 
ribbons.
    I also want to thank our witnesses that we have with us 
today. Whether by profession or circumstance, each of our 
witnesses have become somewhat of experts on pancreatic cancer. 
I am grateful for your willingness to share your stories, 
unique perspectives with the Aging Committee, and hope that our 
conversation today will help bring awareness as well as bring 
us closer to a cure.
    As too many of us in this room know firsthand, pancreatic 
cancer takes a devastating toll on families and communities 
across the State and the Country. So many lives are touched by 
cancer in general, but in particular, pancreatic cancer is a 
deadly disease.
    Last year, although my family has had run-ins with 
different forms of cancer over the years, last year I became 
one of the millions who lost a loved one to pancreatic cancer 
when my dear friend Giles Perkins lost his life to this 
terrible disease. I am grateful to have Giles' wife and also a 
dear friend, Hillery Head, with us today to honor his memory.
    As Hillery will describe in detail, Giles fought pancreatic 
cancer for almost 3 years. During this time, he continued to 
serve as one of the State's most successful attorneys. He 
served as a community leader, a devoted father and husband, and 
all the while during the months of the latter part of 2017, 
running my campaign as the campaign manager and director. 
Throughout his life and even after his death, Giles has 
continued to make Alabama a better place.
    It is fitting that today's hearing is held only blocks away 
from Railroad Park, one of his greatest contributions to this 
City and State. His tough-love approach and ability to see a 
bigger picture made me a better person, a better candidate, and 
now a better United States Senator. He was such a force in my 
life and throughout my campaign that I harken back to my days 
of Star Wars fan-ship and began calling him ``Yoda.'' I will be 
forever grateful for his friendship, and today in my office in 
Washington, DC, we have one of our conference rooms named after 
Giles Perkins with a Yoda doll sitting in the corner.
    Unfortunately, Giles is one of many Americans and 
Alabamians who have lost their lives to pancreatic cancer. This 
year, more than 56,000 Americans will be diagnosed with 
pancreatic cancer. The disease has one of the lowest survival 
rates of any form of cancer, with less than 9 percent of 
patients surviving 5 years after the initial diagnosis. In 
2019, this disease is expected to claim nearly 46,000 lives 
across the County and over 700, approximately 770, in Alabama.
    Like all cancers, the earlier you catch pancreatic cancer, 
the better your odds of survival. Unfortunately, pancreatic is 
extremely difficult to identify in its early stages.
    As our witnesses will describe, most patients present few 
early stage symptoms, and there are currently no early 
detection test for this disease.
    Research is critical to improving our understanding of this 
disease, creating new screening and diagnostic tools, and 
developing better treatments for patients.
    That is why I have continued to advocate not only for 
increased funding for the National Institutes of Health and 
National Cancer Institute, but also for dedicated pancreatic 
cancer research funding within the Department of Defense.
    Most folks do not know that the Department of Defense 
performs medical research. However, the DoD's congressionally 
directed medical research program is one of the most innovative 
and impactful research programs in the Federal Government.
    Here at UAB, it is funded groundbreaking research into 
breast cancer and other diseases. Given pancreatic cancer's 
significant impact and dismal survival rate, it is critical 
that some of these dollars are directed toward pancreatic 
cancer research.
    We have got a lot to do in order to develop better 
treatments, diagnostics, and ultimately a cure for pancreatic 
cancer. However, with the exciting research occurring here at 
UAB and across the Country and our States' inspiring community 
of family and patient advocates, there are also a lot of 
reasons to be hopeful.
    With this hearing, I hope to honor our loved ones and 
explore the current opportunities and challenges in pancreatic 
cancer treatment and research. I look forward to hearing each 
of the perspective and insights from our witnesses.
    I want to turn this over now to our witnesses. I will 
introduce them and then let them talk for a little bit.
    By the way, we will be able after the conclusion of this 
hearing to have any comments or questions from the audience. 
What I will end up doing is gaveling the official hearing to a 
close, and then we can open that up to questions or comments 
from members of the audience.
    First, we are going to hear from my dear friend, Hillery 
Head. As I mentioned, Hillery's husband, Giles, was a prominent 
community activist in Birmingham. He was diagnosed with stage 
IV pancreatic cancer in the spring of 2016, just weeks after 
experiencing his first symptoms, and he passed away last 
December.
    As CEO of Ram Tool Construction Company and the mother of 
three, Hillery continues Giles' legacy of leadership and 
service.
    Next, we will hear from Ms. Lynette Nall. Ms. Nall is a 
retired telecommunications staff manager from Pleasant Grove. 
She lost her daughter, Letisha Nall Palm, to pancreatic cancer 
this past January. After months of discomfort, Tish was 
diagnosed with stage IV cancer in June 2017 at the age of 45.
    Ms. Nall will share with us her daughter's story and 
discuss the importance of improving treatments and diagnostic 
tools.
    I am also grateful to have Mr. Steve Cook here with us from 
Huntsville. Mr. Cook became involved with the Pancreatic Cancer 
Action Network, also known as PanCAN, just weeks after his 
wife, Marqueta, was diagnosed with stage IV pancreatic cancer. 
Since his wife's passing in 2018, he has become a fierce 
advocate for increased Federal funding for pancreatic cancer 
research, which he will discuss today.
    I also have known Steve in his other capacity working for 
Dynetics in Huntsville and part of our military defense 
operations that we have, so we see each other on a regular 
basis.
    Last but not least, we are going to hear from Dr. Bart 
Rose, the director of UAB's Pancreatobiliary. I do not know how 
in the world to pronounce that, to be honest with you.
    Dr. Rose. You are pretty close.
    Senator Jones. Okay. All right.
    The disease center was established in 2018. The center 
links medical professionals from UAB and Alabama to ensure that 
patients with pancreatic cancer and other conditions affecting 
the pancreas, gallbladder, and bile ducts receive appropriate 
and modern care.
    Today Dr. Rose will discuss the current State of pancreatic 
cancer treatment and research.
    Thank you all so much for being here, and I will turn it 
over to each of you now.
    Hillery?

           STATEMENT OF HILLERY HEAD, LOST LOVED ONE 
           TO PANCREATIC CANCER, BIRMINGHAM, ALABAMA

    Ms. Head. Thank you, Senator Jones, members, and staff. 
Thank you for the opportunity to share my family's story.
    As Doug just said, my name is Hillery Head, and I am a 
mother, a businesswoman, and a native Alabamian. I am also a 
widow from pancreatic cancer.
    In the spring of 2016, my husband, Giles Perkins, began 
feeling under the weather. His health declined rapidly, and 
none of the antibiotics he took seemed to help. I urged him to 
see my primary care physician, who ran him through a battery of 
tests and diagnosed him with stage IV pancreatic cancer. It was 
the day before our eldest child graduated from high school.
    Of course, we were stunned. The only reason I believed the 
diagnosis was that it offered an explanation of how Giles had 
gone from an active and vibrant 48-year-old to a jaundiced 
invalid in a matter of weeks.
    Always realists, Giles and I faced the fact that our family 
had to learn how to live with cancer quickly. In the same 
manner we had approached problems throughout our 25-year 
marriage, we weighed what was in our favor and what was not.
    There is no doubt we had a terrible diagnosis, but we had 
also a number of things in our favor. We had three healthy, 
grounded children. Two of our children were old enough to drive 
and help out. We had supportive friends and family close by.
    UAB's O'Neal Comprehensive Cancer Center, world renowned, 
was only 2 miles from our home. Dr. Selwyn Vickers, a renowned 
pancreatic cancer specialist, was at UAB and helping us.
    We both worked jobs that allowed flex time. We had very 
little personal debt. We had first-class health insurance, and 
we knew it would remain in place throughout the course of the 
disease.
    In many ways, we faced this terrible diagnosis with the 
world in our favor, and we were acutely aware of how lucky this 
was, and so we started down the path of living with cancer. 
Chemo started, and Giles responded well. With our children, we 
made a conscious decision to live each day as a gift and not to 
mourn Giles until he was truly gone from us.
    Fighting the disease was very difficult. Chemotherapy is 
poison, and the effects of the poison, while it drove back the 
cancer--and I was so thankful for that--it took away Giles' 
ability to hear. It caused debilitating pain in his hands and 
legs and made mobility an issue for a previously active 48-
year-old.
    The stress and trauma of watching Giles battle this illness 
took a toll on him, on me, and on our three children. Again, we 
had the luxury of support through counselors, spiritual 
leaders, good friends, and family. We had the luxury of 
connection to our children's schools, to Giles' doctors, and to 
the community. People knew what was going on, and people cared, 
and so the fight continued for 3 years. When known chemo 
stopped working, we moved on to more experimental combinations, 
and when those did not work, we moved into the stage of 
managing pain. ``Managing pain'' is a benign term for a 
terrible situation. The pain is so debilitating that Giles 
could not think or function without massive amounts of pain 
medication. For those of you who do not know, to watch someone 
you love in pain, it is suffocating.
    Again, we took stock of what was in our favor. The UAB 
palliative care group was 2 miles from our house. The 
palliative care group was available to talk 24/7. We hired 
wonderful caregivers to help Giles while I continued to work. 
Giles could tolerate high doses of pain medication, and he 
continued to work from home, sometimes more actively than we 
wanted him to.
    His brain continued to be sharp, his spirits remained high, 
and he continued to want to live and to want to contribute. As 
Doug said, he wanted to make Alabama a better place.
    Despite all that was in our favor, on December 2d of last 
year, Giles passed away. He died in our home, surrounded by 
friend, family, and people who loved him. He fought this 
disease from beginning to end with every fiber of his being. He 
knew, and I knew, how very lucky we were that in the midst of 
this great misfortune, he could still do what he felt was his 
life's work, and so I leave you with these thoughts. Cancer 
does not care how young you are, how educated you are, how good 
your job is, how much money you have, what religion you have, 
how many marathons you have run, how much your children need 
you, how much you have left to do on this earth. Cancer does 
not care, and so it is up to us to care. It is up to us to 
support, to fight, to fund, to help, to love, and to live every 
day like it is a gift from God. It is up to us to support 
families facing this same disease and, most importantly, find a 
cure.
    Thank you for listening to my family's story.
    Senator Jones. Thank you, Hillery. Thank you.
    Ms. Nall?

           STATEMENT OF LYNETTE F. NALL, LOST LOVED 
       ONE TO PANCREATIC CANCER, PLEASANT GROVE, ALABAMA

    Ms. Nall. Yes. I am Lynette Nall, and I am going to tell 
Letisha's story. We called her ``Tish.''
    Tish was my firstborn child, born February 5th, 1972. She 
was a healthy child, growing up, only to see the doctor for 
annual physical exams each year. As she grew into adulthood, 
she was still healthy, eating healthy, exercising on a regular 
basis. She was a devout Christian, married with three children: 
Kirsten, 23; Dexter, 21; and Selice, 9.
    In February, Tish, as we called her, started having trouble 
getting comfortable when laying down, and that was February 
2017. She said no matter how she would lie down, she could not 
get comfortable and had trouble sleeping. Tish had light pain 
in her lower back. She went to see her primary care physician, 
but he could not find anything wrong. She went on with the 
light suffering for about 3 months.
    In May 2017, my husband Ronald, Letisha, Kirsten, Selice, 
and myself took Kirsten to Iowa for a summer job and to attend 
the University of Iowa. Tish was still uncomfortable but 
tolerated the pain. We stayed in Iowa 3 days. Upon our return 
back, Tish's pain got a little worse. She got extremely 
nauseated, and we had to stop on the side of the road. The 
nausea was the worst I had ever seen. It just appeared that 
everything inside of her came out in that car. We proceeded on 
the road trip but stopped at the next exist at a CVS and picked 
up three nausea medications--one for the hand, two for the 
mouth--to try to control it. We made the trip home without 
another nausea episode.
    On June 23, 2017, Tish dropped Selice off at my home, as 
she did every Friday. She did not look well but said that 
something she smelled at the church made her sick. She said she 
would go home and rest, but the next call we received was from 
St. Vincent's emergency room. She drove herself to the 
hospital. She left the house and went straight to the emergency 
room.
    I told my husband to go to the hospital and that I would 
come in the morning to relieve him. Ronald called later in the 
night to let me know she would be admitted to the hospital and 
would be on the oncology floor. That was something I did not 
expect to hear.
    A biopsy was performed in June 26, 2017. The diagnosis on 
June 27th was pancreatic cancer stage IV. All of us were 
devastated. Dr. Ira Gore was the oncologist assigned to Tish's 
case. However, she was suffering from some mental abuse from 
her husband, causing her much stress. She moved in with my 
family until her death in January 2019.
    On July 12th, 2017, Dr. Gore started her on Gemzar and 
Abraxane cocktail chemotherapy, 3 weeks on and one off, and 
that treatment regimen lasted until November. Tish had the 
month off for December, but her blood counts were low, and she 
needed a break from treatment. Her tumor marker went from over 
80,000 to around 1,000. It was better but far from normal. Tish 
appeared to be improving, and she was sweet, strong-spirited, 
and very positive. Her faith was strong.
    In January 2018, tumor markers went up again. Tish was also 
having severe back pain, nausea, and constipation. She was 
highly fatigued. Meds were used to resolve those issues. So Dr. 
Gore decided to try immunotherapy: Keytruda. The pain worsened 
with the Keytruda. Pain meds were increased. Keytruda stopped 
after two treatments. Tish started feeling pain under her rib 
cage that Dr. Gore contributed to the cancer that had spread to 
her liver.
    In March 2018, Dr. Gore changed the treatment to 5-FU. This 
regimen continued until September 2018. By this time, her tumor 
markers had gone over 184,000. She was also extremely tired and 
weak. Her blood counts were low.
    In October 2018, Dr. Gore changed the treatment regimen to 
Xelodal 2 weeks on, 1 week off. He also referred Tish to Dr. 
Shaib, the Emory Winship Cancer Institute in Atlanta. Dr. Shaib 
qualified her for a trial but wanted to wait and see if the 
Xelodal would work. He did state that the Keytruda would have 
probably worked had she stayed on it longer. He advised that 
the Keytruda causes the cancer to swell. It gets better; hence, 
that is why she had an increase in her pain. Visits to Atlanta 
were done monthly.
    In December 2018, Tish was very short of breath. Dr. Shaib 
requested to take her to Emory ER. She had fluid on her lungs 
that had to be drawn off by the pulmonary. She had a 
thoracentesis. This fluid drainage had to be done twice more in 
January. She also started retaining fluid in her abdomen. That 
had to be drained as well, a paracentesis. Tish was also in 
intensive care for several days for blood clots on her lungs. 
She was released in the care of hospice.
    On January 30th, 2019, after a few days at home, Tish 
succumbed to the disease in bed early that morning. Needless to 
say, there should be early detection for this disease. Tish's 
first visit to the doctor should have resulted in some test 
that could have saved her life, with all the trials that have 
been done and still going on for this cancer. The trial and 
error methods were frustrating for Tish and for our family that 
allowed her to suffer more than necessary.
    In closing, Tish was a healthy person. She was a sweet 
person, and she held her faith until the end.
    Pancreatic cancer and any other diagnosis that was 
detrimental to her health was unacceptable due to her healthy 
past. Early detection could have saved her life, given her 
early treatment options to extend her life. Any tools, 
diagnostic tools, should have been given her to increase her 
lifespan, affording her the opportunity for life-saving trials.
    I cannot say it enough. Early diagnosis is the key to 
survival. Our survival depends on it.
    Thank you.
    Senator Jones. Mr. Cook?

           STATEMENT OF STEVE COOK, PANCAN ADVOCATE,

              LOST LOVED ONE TO PANCREATIC CANCER,

                      HUNTSVILLE, ALABAMA

    Mr. Cook. Senator Jones, good morning, and welcome to 
everybody here this morning.
    On behalf of the Pancreatic Cancer Action Network, or 
PanCAN, I want to thank you for convening this important 
hearing today to highlight this just terrible disease, and I 
can say that I feel very much the same way as Ms. Nall and Ms. 
Head in the things that they went through and the things that 
they experienced, and it is something we need to solve. We have 
got to solve and beat this problem back.
    The importance of Federal support for pancreatic cancer 
research is incredibly important, and I will talk some more 
about that.
    I am here today because my first wife, Marqueta, died from 
pancreatic cancer, and I am also honored to represent the 
pancreatic cancer community, including pancreatic cancer 
patients, families, and researchers from across the country.
    PanCAN is a leading patient advocacy organization focused 
on pancreatic cancer, with a goal to dramatically improve 
patient outcomes.
    When Marqueta was diagnosed with stage IV pancreatic cancer 
on Father's Day weekend of 2017, my family and I were 
dumfounded. It felt like we had been hit with a Mack Truck. It 
is not something you could ever imagine coming when you went in 
for one particular diagnosis, thinking it was something, and 
then learning actually accidentally in the hallway overhearing 
a nurse talk about it in the hall.
    At that point, we just did not quite know what we were 
going to do, but we also quickly realized this was going to be 
the fight of her life, and we all had to rally around it. We 
had wonderful friends, our church. Most importantly, we had a 
relationship with God that strengthened us and got us through 
this.
    As an engineer, I like to solve problems, and I knew that I 
needed to learn more about this terrible disease, so I reached 
out to several resources, including PanCAN. Our doctor told my 
then student son, engineering student son, and I to help 
engineer a solution, and so we dove in and looked up all the 
research that was going on, what was happening, and asked many, 
many, many questions. Probably her doctor got tired of hearing 
the questions.
    As she continued to battle the disease and we began 
learning more about pancreatic cancer, I realized that funding 
for research was a core challenge. Recognizing that one of the 
strongest weapons that we have in fighting this disease is 
Federal research funding. Marqueta encouraged me to take the 
message to our leaders in Washington, DC.
    I attended my first PanCAN Advocacy Day in 2018, about 2 
weeks after she died, just 12 months after her initial 
diagnosis. Truth be told, I considered not going, but I knew 
she had wanted me to go. She told me she did, and I am really 
glad that I did. This disease can render you hopeless, but 
taking a unified message to the Hill with hundreds of others 
was inspiring. We all had a shared bond, as we all do here this 
morning.
    My story is unfortunately far too common. Sixty-five 
percent of patients die in their first year of diagnosis. This 
year alone, the numbers are up. 57,000 will be diagnosed with 
pancreatic cancer, including an estimated 910 from this great 
State. Pancreatic cancer is currently the third leading cause 
of cancer-related death in the United States and expected to 
become the second leading cause of cancer death by 2030.
    While survival rates for many other cancers have improved--
and thank the Lord for that--the 5-year survival rate for 
pancreatic cancer is only 9 percent.
    Thanks in large part to the step Congress took in 
addressing pancreatic cancer, the National Cancer Institute is 
making progress and providing new research opportunities for 
pancreatic cancer. While there has been a slow increase in the 
Federal investment in pancreatic cancer, the research funding 
remains disproportionate to its severity.
    Along with the NCI, the Department of Defense is an 
important source of funding for cancer research. The Department 
of Defense focuses on high-risk, high-reward research, an 
important complement to the work that NCI does, and it is 
critically important for a disease like pancreatic cancer.
    Veterans have also had several risk factors that show up 
for pancreatic cancer from things like environmental factors 
that they run into.
    Thank you, Senator, to you and to your colleagues, over the 
last few years, Congress has provided funding annually for 
pancreatic cancer research through the Peer Reviewed Cancer 
Research Program at the Department of Defense. This funding has 
provided a small but important amount of support for this 
innovative and competitive cancer research. However, only a 
very few ever make it through this competitive process, and so 
only a few grants get through each year. In fact, in Fiscal 
Year 2018, out of the 80 cancer grant applications for 
pancreatic cancer, only five got recommended for funding. We 
can do better than that, and we must do better than that.
    A more focused pancreatic cancer research effort at the DoD 
is desperately needed. We all believe a positive step forward 
is the creation of a new and dedicated DoD research program for 
pancreatic cancer.
    In June, the House took an important step when it approved 
its version of the Fiscal Year 2020 Defense Appropriations Act. 
Thanks to bipartisan leadership, the House bill now includes $6 
million for a new dedicated pancreatic cancer research program.
    As you know, the Senate version of the bill marked up by 
the Appropriations Committee in September does not today 
include any funding for this new pancreatic cancer research 
program.
    As a result, due to the complicated budget situation that I 
know you are very well familiar with, it appears that our best 
approach moving forward is to increase the House-approved 
amount to $10 million in the final conferenced versions of the 
Defense Appropriations Act.
    Sir, I hope that you will continue to champion that request 
and work with your colleagues on the House and Senate 
Appropriations Committees to make sure that the new Pancreatic 
Cancer Research Program is approved at $10 million. I am 
extremely appreciative of the work that you have done and your 
leadership on behalf of this request.
    As has been noted, pancreatic cancer does not discriminate. 
Notable figures of recent notoriety like Alex Trebek, the game 
show host, and very recently Supreme Court Justice Ruth Bader 
Ginsburg have been diagnosed with this disease.
    This is not a blue or a red issue. We tend to get all tied 
up, particularly in Washington, DC, with Democrats versus 
Republicans, and it is incredibly unfortunate. No, this is not 
blue or red. This is literally purple. This is a purple issue.
    I found myself crying and praying in the office of a 
Senator with different political views than me. I noted earlier 
going through this disease bonds you with others, you become 
part of a community, a community that is committed to saving 
lives, and that is why I am here today. The time is now.
    Senator Jones, on behalf of PanCAN and the thousands of 
American families who just like me have lost a loved one to 
pancreatic cancer, I want to thank you again for holding this 
hearing today. We look forward to continuing to work with you 
and your team to change the lives of those in Alabama, across 
our country, around the world with those and families who have 
been diagnosed with this deadly cancer.
    Thank you.
    Senator Jones. Thank you, Steve.
    Dr. Rose?

         STATEMENT OF J. BART ROSE, MD, MAS, DIRECTOR,

                PANCREATOBILIARY DISEASE CENTER,

           UNIVERSITY OF ALABAMA, BIRMINGHAM, ALABAMA

    Dr. Rose. Thank you very much, Senator Jones, for having me 
today and to the Special Committee on Aging for setting up this 
hearing and to the audience for being here today.
    I again would like to thank you for the opportunity for 
testifying on the State of pancreatic adenocarcinoma, or 
pancreas cancer, care in the United States in 2019.
    Pancreatic adenocarcinoma is a leading cause of cancer-
related death in the United States. Depending on the source, it 
is the third or the fourth most common cancer-related death, 
causing death in the United States, but it is projected, as we 
heard before, to be the second by 2020 due to a rising 
incidence of nearly 2 to 3 percent per year over the last 
decade and this has been pretty consistent.
    We have seen, unfortunately, a stagnant rate of 5-year 
survival of about 9 percent. This is due in large part to the 
fact that over half of patients, unfortunately, will present 
with metastatic disease or disease that spread to another organ 
when we find it, and treatment options there, as we have heard, 
are rather limited.
    At this time, this advanced disease is very difficult to 
treat, and most patients will succumb to their cancer.
    Within in the State of Alabama, we predicted 910 new cases 
of pancreas cancer will be diagnosed this year, and 
unfortunately, about 770 people will lose their lives to this 
disease.
    Alabama has a higher death rate related to pancreas cancer 
than would be predicted. Our State has the ninth highest 
pancreatic cancer death rate in the United States, even though 
it only ranks as the 21st highest rate for new cases.
    Among the health care workers who have had the privilege of 
helping patients with pancreas cancer, improving survival from 
pancreas cancer is our top priority.
    The poor survival in Alabama compared to other States may 
be due to disparities in cancer outcomes seen between Caucasian 
Americans and African Americans. We know that African Americans 
with pancreas cancer have up to a 3 percent increased risk of 
death over a Caucasian patient. Since African Americans 
comprise nearly 27 percent of Alabamians, our State is more 
diverse than most other States, which means that this 
difference in pancreas cancer survival is compounded compared 
to other more northern States with less African American 
representation.
    We know that of the 25 percent of patients who are eligible 
for an operation to remove their pancreas cancer, only 40 
percent are ever offered this potentially lifesaving operation. 
This is a huge opportunity to help Alabamians with pancreas 
cancer, as surgery is generally the only option for cure in 
combination with chemotherapy and sometimes radiation. This 
disparity in access to lifesaving operations is even worse for 
African Americans.
    To make any significant impact in the survival of this 
devastating disease, we need to address a number of 
deficiencies in its care.
    Number one: as the majority of patients will present with 
pancreas cancer that cannot be removed, we need better 
treatments for advanced-stage disease and the ability to detect 
disease at an earlier stage. Both of these require investment 
in medical research. In 2019, the National Cancer Institute was 
budgeted by Congress $6.1 billion. While seemingly an 
improvement over prior years, when adjusted for inflation, this 
has been stagnant for over a decade. Only $221 million or 
approximately 4 percent of the NCI budget was awarded to study 
pancreas cancer, which again remember is the fourth leading 
cause of cancer-related death, only 4 percent. Private society 
funding like PanCAN is wonderful but is limited research in 
this disease compared to other cancers of higher incidence. 
There are much more societies that offer research funding for 
some cancers like breast cancer or colorectal cancer. As a 
pancreatic cancer researcher, I can state without question that 
investment in this area is desperately needed. The only way 
that we are going to move the needle forward in improving 
overall survival beyond the currently unacceptable 9 percent is 
by having better therapy for advanced disease and earlier 
detection.
    Number two: we need to improve our outreach efforts into 
the community and encourage patients to be seen by qualified 
surgeons and cancer doctors to discuss potentially lifesaving 
operations. As a medical community, we need to break the 
unfortunately nihilistic perception of pancreas cancer and 
spread our message of hope. Primary care providers need to be 
informed this can be a curable disease.
    Number three: we need to address disparities within health 
care, including those within pancreatic cancer. In the Deep 
South where we celebrate our diversity with a large proportion 
of African Americans, this disparity is particularly relevant. 
Additional money should be made available to study and reverse 
these disparities.
    At the University of Alabama in Birmingham, we are trying 
to address many of these above-stated issues. We have a number 
of basic and translational science projects dedicated to 
advancing the study of this disease as well as focusing on 
dipartites present in the Deep South. We are the largest 
treatment center in this region for pancreatic cancer and are 
focused on providing modern multidisciplinary care through our 
dedicated Pancreatobiliary Disease Center.
    We would like again to thank the Committee for the 
opportunity to testify. Thank you.
    Senator Jones. Thank you, Dr. Rose. Thank you all to our 
panelists. Thank you.
    Dr. Rose, I want to come back to you first because we keep 
hearing that pancreatic cancer is going to be soon the second 
leading cause, and I am always truck how a cancer continues to 
go up the ladder a little bit. Is there research or is there 
any promising research about the causes of pancreatic cancer 
that we are seeing more and more of these days?
    Dr. Rose. Yes. I think there is a number of risk factors 
that we have identified for pancreas cancer. Most of them are 
causes of inflammation in the pancreas, and I think that we are 
seeing a rising incidence of some of those risk factors--
diabetes, obesity. Unfortunately smoking, it seems to be rising 
again. I think that may be contributing to the rising incidence 
and then the other thing that is causing it to climb up that 
list being the most deadly cancers is actually good news in 
that we are getting better treating some of the other top 
cancers, so, as their survival improves, we jump up the list 
because we are not, and I think that is just where that funding 
needs to come in to advance the basic science to tackle new 
treatments and diagnostic therapies.
    Senator Jones. All right. We will come back to that.
    Mr. Cook, you mentioned after your wife's diagnosis, you 
reached out to PanCAN, and I am sure all of you may have 
reached out for other resources. What resources did you find 
that were especially helpful for you and your family, and are 
there other resources out there? PanCAN is obviously a 
wonderful one. Are there other resources?
    This was really to all three of you. What are other 
resources out there just in helping dealing with this?
    Mr. Cook. Senator, thank you.
    One of the first calls I did place, once we were diagnosed 
with the cancer--notice I say ``we'' because this becomes a 
family fight. This is everybody in this when you get on top of 
this, and one of the things she did when she said, ``I am not 
going to have the energy. I need you to go do the research,'' 
my son and I and my daughter all dove in and looked at that.
    One of the things that I would encourage people not to do 
is just go off and do a random Google search because when you 
do that, you pull up some data that--I mean, it is wrong. It is 
already a difficult enough disease, but to pull up all the 
things that you pull up out there, I do not think it is helpful 
at all.
    I will talk about PanCAN first and then talk about a couple 
others. PanCAN was one of the first calls. They have a call 
center out in California. I have actually been there, walked 
through there last year, and I will tell you they are trained 
professionals that know that most of the calls they get are 
from people in many areas in the rural community that their 
doctors are not very familiar with this. They know that you 
just got a death sentence handed to you, and sometimes that is 
actually what is told to the patients by their physicians. They 
are there to help understand, ``Hey, this is what your options 
are. Here is the resources we can provide,'' incredibly caring 
people, and you have somebody on the other end of the phone, 
which is really nice to hear especially when you are going 
through something like that. Then they have a lot of resources 
on the website.
    Another group that is very active and has some very good 
resources is the Lustgarten Foundation, and they are very 
active as well in battling pancreatic cancer. I would recommend 
them.
    Then there is the medical research. If you want to dive in 
on the latest there--and the physicians can help you get access 
to this. You can get access for 30 days for free from your 
physician. It is a service called UpToDate, and it is something 
I am sure the doctor uses. You can get in and get as much 
information as you want and search it and read the latest 
research that is literally going on that is out there.
    All of those kinds of things helped because both from an 
emotional perspective and from an information perspective, they 
were all very useful.
    Senator Jones. Great.
    Hillery, I want to ask you something because I want to come 
back to a more personal level now. You emphasized how important 
it was for Giles to stay active, and I know that that helped 
him. It helped the family. It was fortuitous, to some extent, I 
think, that he was able to get back into one of his--well, his 
second love, besides you and his family--into politics because 
of a U.S. Senate race that was popping up. The last part 
through 2017, Giles was enmeshed in my campaign, and then 
immediately upon election, he helped put together the staff and 
stayed so engaged.
    Can you describe that a little bit and how important it is 
for those that are diagnosed with this disease to find 
something to continue to, for lack of a better term, live for.
    Ms. Head. Yes, yes. He did love the politics, Doug, and 
loved the State of Alabama. It was so important for him to 
remain active, and that was one of the hardest things about 
this disease because it robs you of your time, and it robs you 
of your energy, and it robs you emotionally. It is so draining.
    We made a conscious--I made a conscious decision to help 
support him and let him focus on the things that he thought he 
could really change in his remaining time on this earth, and 
that had a lot to do with our children and spending time with 
our children.
    Once you get beyond the family, to look and see sort of a 
greater goal for him--and his brain was always very active. 
Even when physically he was not able to get up and move around 
or do things like that, people would come to our home, you 
remember.
    Senator Jones. Oh, yes.
    Ms. Head. He would be on the phone all the time, and that 
gave him hope. The hope was really, really important because 
this disease can be so all-consuming.
    Also, I keep feeling like I am plugging UAB, but you have 
to have UAB, and all the resources here are so close to our 
house and just a phone call away. That sort of support, I just 
cannot emphasize what a godsend that was for us.
    Senator Jones. Well, it was important to a lot of people.
    I will say on a little bit lighter note, I could always 
tell when Giles was undergoing chemotherapy because my phone 
would just be on fire with text messages and things I was not 
doing right. He was constantly telling me that I needed to do 
something better or different all the time, and I just have to 
put it down and leave it alone.
    Senator Jones. He stayed that way right up until the end.
    Ms. Nall, for about 3 months or so, you all had a difficult 
time. You just did not know. How difficult was it to try to 
figure out where your daughter should seek help and what was 
wrong with her? Any advice for people on that?
    Ms. Nall. Well, at the time, the 3 months, we really did 
not--again, we never thought that it was anything close to 
pancreatic cancer. I would say today that if that were to 
happen again that I would seek a second opinion because I think 
even though she was healthy, she had a complaint. She had a 
problem, and that problem was not resolved and it should have 
been, and if not, to move on.
    Tish was the kind of person that she was so caring, and she 
just trusted in her primary care physician. She trusted in her 
oncologist. I know what you are saying about UAB. She was at 
St. Vincent's. We tried to get her to change, but she wanted to 
stay with Dr. Gore. She trusted him.
    It was hard, and it is the most dreadful disease that I had 
ever seen. It was hard to watch my daughter, who was so active, 
to all of a sudden kind of lose all that.
    I would seek a second opinion, and I would also--I really 
learned a lot from the Cancer Center in Atlanta, Emory Winship, 
and Dr. Shaib was just--he was very kind, very open. She loved 
him. Actually, we did not go back to Dr. Gore until she went in 
the hospital. She had to see a local physician, and we did not 
want to change.
    I got a lot of material there, and he discussed everything 
in detail in a way that we could understand. He brought the 
whole family in, all of her sisters and brothers, and that made 
it a good experience. It is just that she just kept going down. 
It was so much to deal with for her and for us as well.
    Senator Jones. Well, thank you.
    Dr. Rose, back to you. We have talked about funding for 
NIH, for the National Cancer Center, and we talk about cures 
for cancer. Everybody likes to say, ``When are we going to get 
a cure for cancer?'' I assume part of that is early diagnosis. 
That is what we keep hearing. One of the reasons why this 
disease--and there are some others too that are as deadly 
because of the inability to diagnose early enough.
    Can you give us some hope? What is being done? What are we 
seeing there as possibilities on the horizon for the early 
diagnosis which can then lead to a cure or either the 
significantly longer extensions of life?
    Dr. Rose. Yes. I think there are certain types of cancer 
that early diagnosis is really the linchpin of being able to 
cure the patient, and the reason is that we just do not have 
good systemic or chemotherapy to treat it. We can keep it at 
bay, but it does not generally cure it.
    The option for cure is being able to remove it, and you can 
only remove something if it is in a few spots. If it has spread 
throughout the body, it is just not possible, and that is where 
the kind of systemic therapy or chemotherapy comes into play, 
because we do not have good chemotherapy that can cure diseases 
spread throughout the body, we are relying on operations, and 
those are more likely to be possible for an early stage cancer.
    In order to catch these cancers, we have to catch them in 
that period before they spread. There has been some really 
interesting studies that Johns Hopkins Group has really been 
pioneering this, looking at how long does it take a pancreas 
cancer to develop, and it turns out that it is not as fast as 
we think. It is probably closer like 20 years. When the cell 
first makes that genetic mutation that triggers the cancer, it 
is about another 17 years or so before we actually can 
recognize the tumor and then maybe another 5 years on average 
until the patient passes. It is somewhere between 20 and 23 
years before that cancer starts and when it actually takes your 
life. There is this period in there that we can maybe catch 
this early.
    I think looking at things, it would be tumor markers would 
be nice. People are looking at circulating tumor cells, cell-
free DNA, or some of these things that you can sample patient's 
blood and look for evidence of a cancer before there is 
necessarily a mass.
    The problem with that is that we are not quite at the level 
where we are certain that what we are measuring is what we are 
measuring, and that it is inexpensive enough that it could be 
done on a wide scale.
    I think that plays into also that, thankfully, this is a 
relatively, compared to other cancers, rare cancer, and so that 
any kind of screening option we have to have, we have to 
recognize that we are only going to pick up 50,000 people a 
year. It has to be inexpensive enough that we could test all 3 
million people in the United States to catch 50 million people. 
I think that is the other kind of realistic problem that we are 
dealing with.
    Senator Jones. You mentioned disparities in funding for 
research. Is that because of the rarity of the cancer that 
there are not as many people? How is that funding decided?
    Dr. Rose. That is a great question, and I would have to 
defer to the NCI directors for that.
    You know, I think that it has traditionally been because of 
the rarity of the disease, and so they wanted to kind of 
allocate money to where they had the most bang for the buck, so 
to speak.
    As we are getting better treating some of these other 
cancers--and we are seeing this kind of rise in the severity in 
the rank of deadly cancers--I am hoping that they kind of 
reallocate money toward that where we can make some real big 
impact on some people. That amount of money, I think, is 
disproportionate to how severe the disease is, so I would like 
to see that increase.
    Just, in general, funding at the NIH, I would like to see 
increased too because the payline or the percent of people that 
actually get their grant funded in the Cancer Institute is 
extremely low compared to the other institutes. I think it is 
the lowest institute in all of the NIH. It is somewhere around 
6 percent get funded. That is six out of a hundred grants 
actually get funding, which is sad.
    Senator Jones. Thank you.
    Steve, you and Hillery, I believe Giles participated in a--
did he participate in any clinical trials?
    Ms. Head. They were not official clinical trials, but there 
was a lot of different variety of drugs and combination of 
drugs that he was trying in an effort to drive back the cancer.
    After that initial--he had initial chemotherapy that really 
helped, and then that kept the cancer at bay for about a year. 
Then it started to come back, and so he did try the Keytruda. 
You know, there were others that he tried.
    Senator Jones. Right.
    Ms. Head. They were not official clinical trials.
    Senator Jones. Okay. Steve?
    Mr. Cook. Yes. Before I hop on that, I want to just jump on 
a point that the doctor just made----
    Senator Jones. Sure.
    Mr. Cook [continuing]. and to your previous question, the 
importance of that early screening. I will give you a real 
example of that, and that is, when she was diagnosed that 
Father's Day weekend, about 5 months prior, she had been in and 
had a kidney stone and had a full CAT scan done of her abdomen. 
As standard practice, they do not do a contrasted scan because 
they are looking for a stone, and it cost extra money to do 
that. If they had done a contrasted scan, they would have 
picked that cancer up at probably stage I versus at stage IV.
    Senator Jones. Wow.
    Mr. Cook. Just a few months earlier--and her doctors went 
back, pulled the scans, and looked, ``Did we miss something?'' 
They did not miss anything because there was no way to see that 
without that.
    Let me say if you go in for an abdomen, some sort of an 
abdomen CT scan, pay the extra money, if your insurance will 
not do it. It is a couple hundred dollars, and it is well worth 
it to get that contrasted scan.
    I will tell you, I have been by that room, and I will tell 
you it is just an eerie feeling when you go by there. You are 
like, ``You know what? We could have caught it right then and 
there.''
    I will say also I think it is important for those that have 
had families that have had pancreatic cancer and even for 
others to have cancer screening, genetic cancer screening done. 
The HudsonAlpha Institute in Huntsville uses that, does that 
service. There are other providers through PanCAN, others you 
can get that done to see if this has been passed down. We want 
to know if this is passed to our children or not, speaking of 
genes.
    Now to your question, we did a lot of research. We went up 
to Johns Hopkins, met with them, decided, all right, what was 
the right path. We ended up settling on doing a clinical trial 
run out of a cancer institute affiliated with Vandy in 
Tennessee. We got lined up to do that. You have to go through a 
certain set of things to get off the chemo to start that. As we 
did that, she had a secondary issue pop up, had to have 
surgery, had to get off the chemo. When you pulled that foot 
off the gas, which you had to do, then the cancer just got 
really, really aggressive. By the time she came out of that, 
she was no longer eligible for the trial, and she only lived 
for a couple months.
    Senator Jones. Wow.
    Dr. Rose, back to you for a moment. You talked a little bit 
about racial disparities that we have seen. I know UAB, in 
general, has been working on cancer, in general, and the racial 
disparities with cancer, which I really appreciate.
    Has research thus far identified any factors that might 
contribute to a higher prevalence of pancreatic cancer in 
minorities?
    Dr. Rose. Yes, I think it is unclear. We do know that some 
of those preexisting--or those risk factors are a little bit 
more prevalent in some of the minority populations, diabetes 
and obesity, and so since those are a little bit higher, they 
may be contributing to it.
    We have started to look at that within pancreatic cancer 
here at UAB, and when we look at patients who actually receive 
treatment and have an operation to remove their cancer, 
actually their outcomes are the same. There is no difference.
    I think the big area to focus on is identifying it early 
and getting people referred to centers that are familiar with 
treating this rare disease, and as long as we can get people 
educated in the local communities kind of on the ground with 
their primary care doctors and again just focusing on referral 
and not on this concept of this being a death sentence, that 
this is either treatable and sometimes potentially curable, 
that you need to see somebody to talk about this in more depth.
    Senator Jones. The access is always a problem. Access is a 
problem because there is also a disparity generally with rural 
and urban. We have got folks here that had UAB right at the 
door or St. Vincent's right at the door, but folks in rural 
areas have a harder time getting that and we are losing rural 
hospitals, and we are losing health care providers.
    What can the State do or what can the Federal Government do 
to better give folks in those rural communities access to the 
care, access to the clinical trials? Is there specific things 
that we could do?
    Dr. Rose. Yes. I think that is a very important point. To 
speak on that, we have also looked at that too, and it is the 
same story that if they get their care at a high-volume center, 
they actually do as well as people who live within 30 miles of 
the center. It is really about getting people to the right 
experts.
    I think that some of that is that the cost of them 
traveling and the cost of them staying locally to get their 
treatment is all shouldered by the patient, and if there was 
some sort of cost offset where they could be housed or provided 
transport that was not out of their own pockets, something that 
either was covered by insurance or by a government voucher 
program, then I think that maybe we would see more people 
willing, but some of it is people just feel comfortable in 
their communities, and they do not want to come up to the big 
city. They do not want to deal with traffic, and they do not 
want to deal with parking, and it is just uncomfortable for 
them.
    Then I think maybe funding outreach satellite clinics where 
we can go to them--and we are looking at doing that here in UAB 
going down to the south and out to the west side of the State 
at least once a month and running pancreas cancer clinics and 
letting people come to us, instead of having them drive all the 
way here. I think there are some innovative ways of achieving 
that.
    People who have limited means, it is hard to expect them to 
travel 5 hours on their own dime to get to see somebody.
    Senator Jones. Hillery, you are obviously a businesswoman. 
Giles was a successful lawyer. You had not only UAB next door; 
you had the resources that a lot of people do not have. Can you 
just imagine what it would have been like had you not had those 
resources?
    Ms. Head. I cannot, and after spending so much time here at 
UAB talking to other people, realizing the distances they 
traveled and the hurdles that they had to go overcome in order 
to come and get the treatment, it is an overwhelming disease 
anyway on its own.
    Senator Jones. Steve, you mentioned the Department of 
Defense. I would like to go back to that a little bit. It was 
one of the issues, one of the things that we tried to get, as 
you know, in the Senate version and could not quite make it. I 
do not know where it will end up in our conference with the 
NDAA, but we are still working.
    That Department of Defense, I do not think people fully 
appreciate the fact that they do some amazing medical research, 
and what would you like to see in that Department of Defense? 
You mentioned it briefly, but let us go over it again because 
this is an official Senate hearing, and it is on the record for 
all of my colleagues to see and hear.
    Mr. Cook. No pressure.
    Mr. Cook. Well, very specifically, we would like to see 
pancreatic cancer established in its own dedicated research 
line in a congressionally Directed Medical Research Program for 
cancer, CDMRP, get a $10 million line for pancreatic cancer in 
there.
    Right now, it has to compete within the broader program, 
and because of that, again, as we talked about earlier, only 
about 6 percent make it through that process. That $10 million 
of funding, we got $6 million in the House line, and so we 
would like to get it to 10 in the conference process. It is 
critically important because we are leaving so much research on 
the table.
    Twenty years ago, there was effectively no pancreatic 
cancer research field. In 1999, there was only a handful of 
researchers even studying pancreatic cancer. What we found out 
is that the work that the DoD does is very complementary. Some 
people say, ``Well, why are we funding the DoD?'' Number one, 
it is a complementary program focused on high-risk cancers, 
fits there. There is a higher incidence rate among our veterans 
of pancreatic cancer, so it fits there and it is not an overlap 
of what goes on over at the National Cancer Institute today.
    They have done some great programs at DoD. They have been 
looking at targeting the gene, the KRAS gene, which is a 
critical one, biomarkers to detect pancreatic cancer earlier, 
how do we activate the immune system, how do we take advantage 
of metabolic differences in people, and a lot of other novel 
therapeutic approaches.
    This particular cancer is not going to be--we are not going 
to get the rates down, I do not personally believe, but with 
chemotherapy. Almost all the things that were mentioned up here 
today, they are very difficult. I mean, they are 7-hour 
sessions, some of them to be every couple of weeks, and it just 
wipes the person out as you go through that process. It is 
going to have to be engineered. We have got an engineered 
solution.
    I would kind of simplify it and say it this way. It is very 
similar to cars driving down the road, and you do not have any 
brakes, and the pedal is pushes to the floor, but you got to 
stop the car, and that is what we have to figure out ways to 
do. Well, there is all kinds of other ways you could stop a car 
from the outside, and that is the creativity we need to get 
researches to apply. They are doing it in other areas, but this 
is one of the toughest cancers to unlock because of the way it 
is--not just because of its diagnosis issues, but because of 
the genetics associated with it.
    I am an engineer. I have built launch vehicles, and I sent 
payloads to space. If we can do that as a Country, we can 
absolutely do this.
    Senator Jones. Great. Thank you.
    Dr. Rose, anything? We are going to kind of wind up so we 
can open it up, if anybody in the audience wants to, but do you 
got any final thoughts, something that we did not cover that 
you would like to say or do or implore us to do in the Senate 
or the House?
    Dr. Rose. I think we have, obviously, covered the kind of 
dearth in funding, and that is a big thing.
    I think outreach is, again, very important, and I would 
like to see kind of a public health campaign stressing the fact 
that this is not an untreatable and uncurable disease, as many 
people think. I think, again, there has been multiple studies 
now and a followup 10 years later that showed that people with 
potentially curable stage I pancreas cancer, only 40 percent of 
those people are ever being referred to a surgeon. That is 
really the chance for a cure there, and it is a huge missed 
opportunity for a number of patients. There may be any number 
of reasons for that, but it does not seem to be health-related. 
It seems to be just this nihilistic thought that this is a 
death sentence, and I think we just really need to stress that 
in 2019, that is not always the case. I would like to see more 
public awareness of that, especially within the medical 
community.
    Senator Jones. All right. Thank you.
    Ms. Nall, any final comments?
    Ms. Nall. The tumor marker, I know you discussed that a 
little bit, but I was wondering if that could be part of--you 
know, we go to get a physical every year. Why not have that 
part of the CDC or whatever they call it? I think the number 
was between what? Zero and 35?
    Dr. Rose. For normal.
    Ms. Nall. My daughter is way off the chart. If they had 
done that test, the CA 19-9, the tumor marker, then maybe that 
would have been an indication, indication to do something 
different.
    Dr. Rose. That is a wonderful thought. The CA 19-9, which 
is the tumor marker I think you are talking about is 
problematic for a number of reasons.
    About 10 to 12 percent of people do not even make that 
marker, and so they could have metastatic or stage IV pancreas 
cancer, and it would be unmeasurable, which is we cannot use it 
to track them.
    It can be high for reasons that are not cancer. Then that 
leads to a lot of unnecessary testing and worry.
    Then the actual number itself does not really correlate 
with how bad the disease is. It may not even start getting high 
until they have already spread, and so for those reasons, it 
just has not, unfortunately, panned out to be very useful, 
other than if you have a number and you can watch it on 
treatment, what happens to it? Is it going up? Is it going 
down? Then that can give you a sense of how you are responding 
to treatment and whether or not maybe the tumor is coming back 
because it was low and now it is going high again. It is useful 
for tracking it but not for diagnosing it, and we just do not 
have anything better yet.
    Ms. Nall. It should be part of the research.
    Dr. Rose. Absolutely.
    Senator Jones. Thank you, Ms. Nall.
    Hillery, any final thoughts?
    Ms. Head. No.
    Senator Jones. All right. Well, thank you. I want to thank 
all of the panelists and witnesses today. It is just an amazing 
group, an emotional group for all of us.
    Committee members--as I said, this is an official Senate 
Aging Committee hearing. Committee members, other Senators, 
will have until Monday, November the 25th, to submit additional 
questions for the record, so it is possible that you could get 
additional questions, so we are going to conclude the official 
part of this hearing so that we can talk to some of you if you 
are willing to do that.
    With that, the hearing is adjourned. Thank you.
    [Whereupon, at 10:39 a.m., the Committee was adjourned.]


      
      
      
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                                APPENDIX

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                      Prepared Witness Statements

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