[Congressional Record Volume 164, Number 84 (Tuesday, May 22, 2018)]
[House]
[Pages H4349-H4355]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
CHILDHOOD CANCER SURVIVORSHIP, TREATMENT, ACCESS, AND RESEARCH ACT OF
2018
Mr. BURGESS. Mr. Speaker, I move to suspend the rules and pass the
bill
[[Page H4350]]
(S. 292) to maximize discovery, and accelerate development and
availability, of promising childhood cancer treatments, and for other
purposes.
The Clerk read the title of the bill.
The text of the bill is as follows:
S. 292
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. SHORT TITLE; TABLE OF CONTENTS.
(a) Short Title.--This Act may be cited as the ``Childhood
Cancer Survivorship, Treatment, Access, and Research Act of
2018'' or the ``Childhood Cancer STAR Act''.
(b) Table of Contents.--The table of contents for this Act
is as follows:
Sec. 1. Short title; table of contents.
TITLE I--MAXIMIZING RESEARCH THROUGH DISCOVERY
Subtitle A--Caroline Pryce Walker Conquer Childhood Cancer
Reauthorization Act
Sec. 101. Children's cancer biorepositories and biospecimen research.
Sec. 102. Improving Childhood Cancer Surveillance.
Subtitle B--Pediatric Expertise at NIH
Sec. 111. Inclusion of at least one pediatric oncologist on the
National Cancer Advisory Board.
Sec. 112. Sense of Congress regarding pediatric expertise at the
National Cancer Institute.
Subtitle C--NIH Reporting on Childhood Cancer Activities
Sec. 121. Reporting on childhood cancer research projects.
TITLE II--MAXIMIZING DELIVERY: CARE, QUALITY OF LIFE, SURVIVORSHIP, AND
CAREGIVER SUPPORT
Sec. 201. Cancer survivorship programs.
Sec. 202. Grants to improve care for pediatric cancer survivors.
Sec. 203. Best practices for long-term follow-up services for pediatric
cancer survivors.
Sec. 204. Technical amendment.
TITLE I--MAXIMIZING RESEARCH THROUGH DISCOVERY
Subtitle A--Caroline Pryce Walker Conquer Childhood Cancer
Reauthorization Act
SEC. 101. CHILDREN'S CANCER BIOREPOSITORIES AND BIOSPECIMEN
RESEARCH.
Section 417E of the Public Health Service Act (42 U.S.C.
285a-11) is amended--
(1) in the section heading, by striking ``research and
awareness'' and inserting ``research, awareness, and
survivorship'';
(2) by striking subsection (a) and inserting the following:
``(a) Children's Cancer Biorepositories.--
``(1) Award.--The Secretary, acting through the Director of
NIH, may make awards to an entity or entities described in
paragraph (4) to build upon existing research efforts to
collect biospecimens and clinical and demographic information
of children, adolescents, and young adults with selected
cancer subtypes (and their recurrences) for which current
treatments are least effective, in order to achieve a better
understanding of the causes of such cancer subtypes (and
their recurrences), and the effects and outcomes of
treatments for such cancers.
``(2) Use of funds.--Amounts received under an award under
paragraph (1) may be used to carry out the following:
``(A) Collect and store high-quality, donated biospecimens
and associated clinical and demographic information on
children, adolescents, and young adults diagnosed with cancer
in the United States, focusing on children, adolescents, and
young adults with cancer enrolled in clinical trials for whom
current treatments are least effective. Activities under this
subparagraph may include storage of biospecimens and
associated clinical and demographic data at existing
biorepositories supported by the National Cancer Institute.
``(B) Maintain an interoperable, secure, and searchable
database on stored biospecimens and associated clinical and
demographic data from children, adolescents, and young adults
with cancer for the purposes of research by scientists and
qualified health care professionals.
``(C) Establish and implement procedures for evaluating
applications for access to such biospecimens and clinical and
demographic data from researchers and other qualified health
care professionals.
``(D) Provide access to biospecimens and clinical and
demographic data from children, adolescents, and young adults
with cancer to researchers and qualified health care
professionals for peer-reviewed research--
``(i) consistent with the procedures established pursuant
to subparagraph (C);
``(ii) only to the extent permitted by applicable Federal
and State law; and
``(iii) in a manner that protects personal privacy to the
extent required by applicable Federal and State privacy law,
at minimum.
``(3) No requirement.--No child, adolescent, or young adult
with cancer shall be required under this subsection to
contribute a specimen to a biorepository or share clinical or
demographic data.
``(4) Application; considerations.--
``(A) Application.--To be eligible to receive an award
under paragraph (1) an entity shall submit an application to
the Secretary at such a time, in such manner, and containing
such information as the Secretary may reasonably require.
``(B) Considerations.--In evaluating applications submitted
under subparagraph (A), the Secretary shall consider the
existing infrastructure of the entity that would allow for
the timely capture of biospecimens and related clinical and
demographic information for children, adolescents, and young
adults with cancer for whom current treatments are least
effective.
``(5) Privacy protections and informed consent.--
``(A) In general.--The Secretary may not make an award
under paragraph (1) to an entity unless the Secretary ensures
that such entity--
``(i) collects biospecimens and associated clinical and
demographic information only from participants who have given
their informed consent in accordance with Federal and State
law; and
``(ii) protects personal privacy to the extent required by
applicable Federal and State law, at minimum.
``(B) Informed consent.--The Secretary shall ensure
biospecimens and associated clinical and demographic
information are collected with informed consent, as described
in subparagraph (A)(i).
``(6) Guidelines and oversight.--The Secretary shall
develop and disseminate appropriate guidelines for the
development and maintenance of the biorepositories supported
under this subsection, including appropriate oversight, to
facilitate further research on select cancer subtypes (and
their recurrences) in children, adolescents, and young adults
with such cancers (and their recurrences).
``(7) Coordination.--To encourage the greatest possible
efficiency and effectiveness of federally supported efforts
with respect to the activities described in this subsection,
the Secretary shall ensure the appropriate coordination of
programs supported under this section with existing federally
supported cancer registry programs and the activities under
section 399E-1, as appropriate.
``(8) Supplement not supplant.--Funds provided under this
subsection shall be used to supplement, and not supplant,
Federal and non-Federal funds available for carrying out the
activities described in this subsection.
``(9) Report.--Not later than 4 years after the date of
enactment of the Childhood Cancer Survivorship, Treatment,
Access, and Research Act of 2018, the Secretary shall submit
to Congress a report on--
``(A) the number of biospecimens and corresponding clinical
demographic data collected through the biospecimen research
efforts supported under paragraph (1);
``(B) the number of biospecimens and corresponding clinical
demographic data requested for use by researchers;
``(C) barriers to the collection of biospecimens and
corresponding clinical demographic data;
``(D) barriers experienced by researchers or health care
professionals in accessing the biospecimens and corresponding
clinical demographic data necessary for use in research; and
``(E) recommendations with respect to improving the
biospecimen and biorepository research efforts under this
subsection.
``(10) Definitions.--For purposes of this subsection:
``(A) Award.--The term `award' includes a grant, contract,
or cooperative agreement determined by the Secretary.
``(B) Biospecimen.--The term `biospecimen' includes--
``(i) solid tumor tissue or bone marrow;
``(ii) normal or control tissue;
``(iii) blood and plasma;
``(iv) DNA and RNA extractions;
``(v) familial DNA; and
``(vi) any other sample relevant to cancer research, as
required by the Secretary.
``(C) Clinical and demographic information.--The term
`clinical and demographic information' includes--
``(i) date of diagnosis;
``(ii) age at diagnosis;
``(iii) the patient's sex, race, ethnicity, and
environmental exposures;
``(iv) extent of disease at enrollment;
``(v) site of metastases;
``(vi) location of primary tumor coded;
``(vii) histologic diagnosis;
``(viii) tumor marker data when available;
``(ix) treatment and outcome data;
``(x) information related to specimen quality; and
``(xi) any other applicable information required by the
Secretary.''; and
(3) in subsection (c), by striking ``(42 U.S.C. 202
note)''.
SEC. 102. IMPROVING CHILDHOOD CANCER SURVEILLANCE.
(a) In General.--Section 399E-1 of the Public Health
Service Act (42 U.S.C. 280e-3a) is amended--
(1) in subsection (a)--
(A) by striking ``shall award a grant'' and inserting ``may
make awards to State cancer registries''; and
(B) by striking ``track the epidemiology of pediatric
cancer into a comprehensive nationwide registry of actual
occurrences of pediatric cancer'' and inserting ``collect
information to better understand the epidemiology of cancer
in children, adolescents, and young adults''; and
(C) by striking the second sentence and inserting ``Such
registries may be updated to include each occurrence of such
cancers within a period of time designated by the
Secretary.'';
(2) by redesignating subsection (b) as subsection (d);
[[Page H4351]]
(3) by inserting after subsection (a) the following:
``(b) Activities.--The grants described in subsection (a)
may be used for--
``(1) identifying, recruiting, and training potential
sources for reporting childhood, adolescent, and young adult
cancer cases;
``(2) developing practices to ensure early inclusion of
childhood, adolescent, and young adult cancer cases in State
cancer registries through the use of electronic reporting;
``(3) collecting and submitting deidentified data to the
Centers for Disease Control and Prevention for inclusion in a
national database that includes information on childhood,
adolescent, and young adult cancers; and
``(4) improving State cancer registries and the database
described in paragraph (3), as appropriate, including to
support the early inclusion of childhood, adolescent, and
young adult cancer cases.
``(c) Coordination.--To encourage the greatest possible
efficiency and effectiveness of federally supported efforts
with respect to the activities described in this section, the
Secretary shall ensure the appropriate coordination of
programs supported under this section with other federally
supported cancer registry programs and the activities under
section 417E(a), as appropriate.''; and
(4) in subsection (d), as so redesignated, by striking
``registry established pursuant to subsection (a)'' and
inserting ``activities described in this section''.
(b) Authorization of Appropriations.--Section 417E(d) of
the Public Health Service Act (42 U.S.C. 285a-11(d)) is
amended--
(1) by striking ``2009 through 2013'' and inserting ``2019
through 2023''; and
(2) by striking the second sentence.
Subtitle B--Pediatric Expertise at NIH
SEC. 111. INCLUSION OF AT LEAST ONE PEDIATRIC ONCOLOGIST ON
THE NATIONAL CANCER ADVISORY BOARD.
Clause (iii) of section 406(h)(2)(A) of the Public Health
Service Act (42 U.S.C. 284a(h)(2)(A)) is amended--
(1) by striking ``Board not less than five'' and inserting
``Board--
``(I) not less than 5'';
(2) by inserting ``and'' after the semicolon; and
(3) by adding at the end the following:
``(II) not less than one member shall be an individual
knowledgeable in pediatric oncology;''.
SEC. 112. SENSE OF CONGRESS REGARDING PEDIATRIC EXPERTISE AT
THE NATIONAL CANCER INSTITUTE.
It is the sense of Congress that the Director of the
National Cancer Institute should ensure that all applicable
study sections, committees, advisory groups, and panels at
the National Cancer Institute include one or more qualified
pediatric oncologists, as appropriate.
Subtitle C--NIH Reporting on Childhood Cancer Activities
SEC. 121. REPORTING ON CHILDHOOD CANCER RESEARCH PROJECTS.
The Director of the National Institutes of Health shall
ensure that childhood cancer research projects conducted or
supported by the National Institutes of Health are included
in appropriate reports to Congress, which may include the
Pediatric Research Initiative report.
TITLE II--MAXIMIZING DELIVERY: CARE, QUALITY OF LIFE, SURVIVORSHIP, AND
CAREGIVER SUPPORT
SEC. 201. CANCER SURVIVORSHIP PROGRAMS.
(a) Pilot Programs To Explore Model Systems of Care for
Pediatric Cancer Survivors.--
(1) In general.--The Secretary of Health and Human Services
(referred to in this section as the ``Secretary'') may make
awards to eligible entities to establish pilot programs to
develop, study, or evaluate model systems for monitoring and
caring for childhood cancer survivors throughout their
lifespan, including evaluation of models for transition to
adult care and care coordination.
(2) Awards.--
(A) Types of entities.--In making awards under this
subsection, the Secretary shall, to the extent practicable,
include--
(i) small, medium, and large-sized eligible entities; and
(ii) sites located in different geographic areas, including
rural and urban areas.
(B) Eligible entities.--In this subsection, the term
``eligible entity'' means--
(i) a medical school;
(ii) a children's hospital;
(iii) a cancer center;
(iv) a community-based medical facility; or
(v) any other entity with significant experience and
expertise in treating survivors of childhood cancers.
(3) Use of funds.--Funds awarded under this subsection may
be used--
(A) to develop, study, or evaluate one or more models for
monitoring and caring for cancer survivors; and
(B) in developing, studying, and evaluating such models, to
give special emphasis to--
(i) design of models of follow-up care, monitoring, and
other survivorship programs (including peer support and
mentoring programs);
(ii) development of models for providing multidisciplinary
care;
(iii) dissemination of information to health care providers
about culturally and linguistically appropriate follow-up
care for cancer survivors and their families, as appropriate
and practicable;
(iv) development of psychosocial and support programs to
improve the quality of life of cancer survivors and their
families, which may include peer support and mentoring
programs;
(v) design of systems for the effective transfer of
treatment information and care summaries from cancer care
providers to other health care providers (including risk
factors and a plan for recommended follow-up care);
(vi) dissemination of the information and programs
described in clauses (i) through (v) to other health care
providers (including primary care physicians and internists)
and to cancer survivors and their families, where appropriate
and in accordance with Federal and State law; and
(vii) development of initiatives that promote the
coordination and effective transition of care between cancer
care providers, primary care physicians, mental health
professionals, and other health care professionals, as
appropriate, including models that use a team-based or multi-
disciplinary approach to care.
(b) Workforce Development for Health Care Providers on
Medical and Psychosocial Care for Childhood Cancer
Survivors.--
(1) In general.--The Secretary shall, not later than 1 year
after the date of enactment of this Act, conduct a review of
the activities of the Department of Health and Human Services
related to workforce development for health care providers
who treat pediatric cancer patients and survivors. Such
review shall include--
(A) an assessment of the effectiveness of supportive
psychosocial care services for pediatric cancer patients and
survivors, including pediatric cancer survivorship care
patient navigators and peer support programs;
(B) identification of existing models relevant to providing
medical and psychosocial services to individuals surviving
pediatric cancers, and programs related to training for
health professionals who provide such services to individuals
surviving pediatric cancers; and
(C) recommendations for improving the provision of
psychosocial care for pediatric cancer survivors and
patients.
(2) Report.--Not later than 2 years after the date of
enactment of this Act, the Secretary shall submit to the
Committee on Health, Education, Labor, and Pensions of the
Senate and Committee on Energy and Commerce of the House of
Representatives, a report concerning the findings and
recommendations from the review conducted under paragraph
(1).
SEC. 202. GRANTS TO IMPROVE CARE FOR PEDIATRIC CANCER
SURVIVORS.
(a) In General.--Section 417E of the Public Health Service
Act (42 U.S.C. 285a-11), as amended by section 101, is
further amended by striking subsection (b) and inserting the
following:
``(b) Improving Care for Pediatric Cancer Survivors.--
``(1) Research on pediatric cancer survivorship.--The
Director of NIH, in coordination with ongoing research
activities, may continue to conduct or support pediatric
cancer survivorship research including in any of the
following areas:
``(A) Outcomes of pediatric cancer survivors, including
within minority or other medically underserved populations
and with respect to health disparities of such outcomes.
``(B) Barriers to follow-up care for pediatric cancer
survivors, including within minority or other medically
underserved populations.
``(C) The impact of relevant factors, which may include
familial, socioeconomic, and other environmental factors, on
treatment outcomes and survivorship.
``(D) The development of indicators used for long-term
follow-up and analysis of the late effects of cancer
treatment for pediatric cancer survivors.
``(E) The identification of, as applicable--
``(i) risk factors associated with the late effects of
cancer treatment;
``(ii) predictors of adverse neurocognitive and
psychosocial outcomes; and
``(iii) the molecular basis of long-term complications.
``(F) The development of targeted interventions to reduce
the burden of morbidity borne by cancer survivors in order to
protect such cancer survivors from the late effects of
cancer.
``(2) Balanced approach.--In conducting or supporting
research under paragraph (1)(A)(i) on pediatric cancer
survivors within minority or other medically underserved
populations, the Director of NIH shall ensure that such
research addresses both the physical and the psychological
needs of such survivors, as appropriate.''.
SEC. 203. BEST PRACTICES FOR LONG-TERM FOLLOW-UP SERVICES FOR
PEDIATRIC CANCER SURVIVORS.
The Secretary of Health and Human Services may facilitate
the identification of best practices for childhood and
adolescent cancer survivorship care, and, as appropriate, may
consult with individuals who have expertise in late effects
of disease and treatment of childhood and adolescent cancers,
which may include--
(1) oncologists, which may include pediatric oncologists;
(2) primary care providers engaged in survivorship care;
(3) survivors of childhood and adolescent cancer;
[[Page H4352]]
(4) parents of children and adolescents who have been
diagnosed with and treated for cancer and parents of long-
term survivors;
(5) nurses and social workers;
(6) mental health professionals;
(7) allied health professionals, including physical
therapists and occupational therapists; and
(8) others, as the Secretary determines appropriate.
SEC. 204. TECHNICAL AMENDMENT.
(a) In General.--Section 3 of the Hematological Cancer
Research Investment and Education Act of 2002 (Public Law
107-172; 116 Stat. 541) is amended by striking ``section
419C'' and inserting ``section 417C''.
(b) Effective Date.--The amendment made by subsection (a)
shall take effect as if included in section 3 of the
Hematological Cancer Research Investment and Education Act of
2002 (Public Law 107-172; 116 Stat. 541).
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Texas (Mr. Burgess) and the gentleman from New Jersey (Mr. Pallone)
each will control 20 minutes.
The Chair recognizes the gentleman from Texas.
General Leave
Mr. BURGESS. Mr. Speaker, I ask unanimous consent that all Members
may have 5 legislative days in which to revise and extend their remarks
and insert extraneous materials into the Record on the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Texas?
There was no objection.
Mr. BURGESS. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, today, we are here to debate the Childhood Cancer
Survivorship, Treatment, Access, and Research Act, also known as the
Childhood Cancer STAR Act.
Each of us knows someone who has suffered from cancer, whether it is
a family member, friend, patient, or loved one. It is especially heart-
wrenching to watch children go through a cancer diagnosis and cancer
treatment.
The bill we are considering today is for our children, the future of
our Nation. I would like to acknowledge and thank my fellow Texan,
Congressman Michael McCaul, for leading our work to deliver hope to
America's youngest cancer patients.
Congress has done remarkable work to pass legislation such as the
21st Century Cures Act, which provided Americans with great hope that
increased investment in biomedical research would lead to treatment and
even cures for our most devastating diseases.
The 21st Century Cures Act authorized over $4.5 billion in new
funding for the National Institutes of Health, including nearly $2
billion for the Cancer Moonshot.
The Childhood Cancer STAR Act builds upon the mission of 21st Century
Cures but focuses on empowering the National Institutes of Health and
the Centers for Disease Control and Prevention to increase the amount
of research and surveillance for cancer in children, adolescents, and
young adults.
Groundbreaking discoveries rely on robust and reliable investment in
research, and this requires robust and reliable dollars for research.
This bill authorizes $30 million a year through fiscal year 2023 for
the National Childhood Cancer Registry, which will provide grant
funding for the purpose of collecting information to better understand
the epidemiology of cancer in children, adolescents, and young adults.
The bill also authorizes the National Cancer Institute at the
National Institutes of Health to make awards that will support
childhood cancer biorepositories, giving physicians and researchers
tools to better understand these diseases.
Mr. Speaker, it is vital that physicians and their teams can provide
comprehensive and coordinated care for pediatric cancer patients. The
bill allows the Secretary of the Department of Health and Human
Services to make grants to establish pilot programs to develop, study,
or evaluate model systems to improve the quality and the efficiency of
care for childhood cancer survivors.
It also provides for greater efficiency and coordination of care for
those survivors as they transition into adulthood and for the Secretary
to work with experts to identify best practices.
Similarly, this bill gives the National Institutes of Health Director
the authority to make grants to programs that conduct or support
research relating to pediatric cancer survivors.
As I have said, this legislation is for our children. It is for the
families that are building our Nation's future. If we can ensure that
these young patients receive treatment and cures for childhood cancer,
they may grow up to become biomedical researchers who will find the
next generation of cures; they may write the next great American
classic; they may become prima ballerinas, Olympic athletes, or all of
the above.
This legislation is for kids like Sadie. Sadie was diagnosed with
ALL, acute lymphoblastic leukemia, on February 25, 2015. She was just 7
years old at the time. This young north Texan fought through
infections, blood transfusions, and rare side effects. She missed out
on second grade and she missed out on third grade as she underwent
weekly chemotherapy sessions.
Today, it is my great joy to share that Sadie beat the odds and Sadie
survived leukemia. She received her last chemotherapy treatment May 26,
2017. Now, at 10 years old, Sadie is able to live the life of a normal
kid.
I would like to thank Sadie and her family for their willingness to
share their story and for their advocacy in support of this important
legislation.
Mr. Speaker, I met Sadie in my office last spring, and I was inspired
by her story. She started a nonprofit, the Sadie Keller Foundation, to
raise money to help other kids who are facing cancer. Her mission is
pretty simple. It is to put a smile on the faces of children fighting
cancer all over the country and to remind them to keep fighting.
So, today, I urge Members of Congress to support this important
bipartisan legislation. In sending this bill to the President's desk,
we will help Sadie achieve her mission of putting a smile on the faces
of children fighting cancer. We will provide families across this
country with hope for a better tomorrow.
Mr. Speaker, I reserve the balance of my time.
Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I rise today in support of S. 292, the Childhood Cancer
Survivorship, Treatment, Access, and Research Act.
I want to particularly thank our lead Democratic sponsor, Mr.
Butterfield of North Carolina, for promoting this bill.
Nearly 16,000 children are diagnosed with cancer in the U.S. each
year. Those children are forced to bravely battle a disease and carry
burdens that no one their age should. The Childhood Cancer STAR Act
gives those children and their families hope by encouraging improved
research as well as survivorship programs for children with cancer.
This legislation urges the National Institutes of Health to find new
opportunities to expand research into pediatric cancer and
survivorship, such as supporting the collection of biospecimens, as
well as supporting research on the causes of health disparities in
pediatric cancer survivorship.
The bill also allows the Centers for Disease Control and Prevention
to award funding to help States strengthen their infrastructure to
track the epidemiology of pediatric cancer.
{time} 1530
This improves childhood cancer surveillance and helps to guide public
health decisionmaking as well as research inquiry.
Finally, this bill recognizes that expanding research that leads to
treatments and cures is only part of the equation in improving the
experience of children diagnosed with this disease. We must ensure that
quality care is available to meet their needs for the remainder of
their lives.
Unfortunately, the battle with pediatric cancer extends beyond
beating the disease. As many as two-thirds of pediatric cancer
survivors suffer from long-term effects of their disease and treatment,
including secondary cancers and organ damage.
That is why this bill allows the Secretary of Health and Human
Services to establish a pilot program to develop, study, or evaluate
model systems for monitoring and caring for childhood cancer survivors
through their lifespan, as well as to develop best practices for long-
term followup services for pediatric cancer survivors.
I will continue to support efforts like this to improve outcomes for
cancer
[[Page H4353]]
patients and survivors. However, unlike with this legislation, such
efforts should proceed through the regular order process.
Mr. Speaker, I urge my colleagues to support this bill, and I reserve
the balance of my time.
Mr. BURGESS. Mr. Speaker, I yield as much time as he may consume to
the gentleman from Oregon (Mr. Walden), the chairman of the full
committee.
Mr. WALDEN. Mr. Speaker, I would thank my colleagues on both sides of
the aisle, and our staffs, who worked so hard on this legislation.
I rise to offer my strong support for S. 292, the Childhood Cancer
Survivorship, Treatment, Access, and Research Act of 2018, simply known
as the Childhood Cancer STAR Act. The House version of this important
legislation was spearheaded by several, including my colleague
Representative Michael McCaul of Texas, the chairman of the House
Committee on Homeland Security. I would like to thank the gentleman for
his leadership on this bipartisan initiative.
Being told your child has cancer is probably every parent's worst
nightmare. Even though childhood cancer is rare, it is still the second
leading cause of death in children aged 1 to 14. In the last Congress
we passed the 21st Century Cures Act. This landmark legislation
modernized the Nation's biomedical and innovation infrastructure, and
it streamlined the process for how drugs and medical devices are
approved so we can get new treatments to patients faster.
And we have invested heavily in the National Institutes of Health
through the appropriations process--then and now--recently increasing
their budget by $3 billion in the 2018 spending bill, which I
supported. The STAR Act builds on these investments and expands the
reach of the 21st Century Cures legislation by focusing critical
resources to advance both research and treatments for pediatric cancer.
By reauthorizing and modifying the National Childhood Cancer
Registry; supporting childhood cancer biorepositories; improving the
tracking of cancer in children, adolescents, and young adults; and
supporting efforts to improve the pediatric cancer survivorship care,
the STAR Act will improve both treatment of children currently battling
cancer and the quality of life for the young survivors who have beaten
this terrible disease.
So I want to thank my colleagues on both sides of the aisle. This is
good work we are doing here today in a bipartisan way in the United
States House of Representatives. We will save lives. We will help
families. Especially, we will help these children who are suffering
mightily.
Mr. PALLONE. Mr. Speaker, I yield 3 minutes to the gentleman from
North Carolina (Mr. Butterfield), the lead Democratic sponsor, who is
always out front on so many important healthcare issues.
Mr. BUTTERFIELD. Mr. Speaker, I thank Mr. Pallone for his friendship
and leadership on the committee. He has been an extraordinary leader in
the healthcare space, and I want to publicly thank the gentleman for
his work. As well as to Dr. Burgess: I have been on the committee now
for more than 10 years, and I have watched him and Mr. Walden, Mr.
Barton, and others engage in debate. I know that all of them are
seriously and totally committed to improving health outcomes in this
country, and I thank them all for their leadership.
Mr. Speaker, I rise today to urge my colleagues to support S. 292,
the Childhood Cancer Survivorship, Treatment, Access, and Research Act,
commonly referred to as the STAR Act. Along with Mr. McCaul, Jackie
Speier, and Mike Kelly, I introduced H.R. 820, which is the House
companion to S. 292.
Over 85 percent of the House has cosponsored this bill. It is,
therefore, my great honor to serve as cochair of the bipartisan House
Childhood Cancer Caucus. Through the work of this caucus, I have had
the opportunity to work closely with pediatric patient groups and
stakeholders to promote legislation that can help save and improve the
lives of young people.
Passage of the STAR Act has long been a goal of those patients and of
the Childhood Cancer Caucus, and I am grateful that the House is poised
to send this important piece of legislation now to the President's desk
for his signature.
Mr. Speaker, 16,000--16,000--children in the United States are
diagnosed with cancer every year. Many of those have limited treatment
options. The STAR Act, Mr. Speaker, is an important piece of
legislation that will expand the opportunities for childhood cancer
research, improve efforts to identify and track childhood cancer, and
enhance the quality of life of childhood cancer survivors.
Childhood cancer remains the leading cause of death in American
children. As many as two-thirds of childhood cancer survivors suffer
from late effects of their disease or treatment, including secondary
cancers or organ damage. That is why passage and enactment of this
legislation is so important.
The bill enhances research on the late effects of childhood cancers,
improves collaboration among providers so that doctors are better able
to care for survivors as they age, and explores innovative models of
care for childhood cancer survivors.
When enacted, S. 292 will help to advance pediatric cancer research
and child-focused cancer treatments while also improving childhood
cancer surveillance and providing enhanced resources for survivors.
This bill, Mr. Speaker, is the most comprehensive childhood cancer
legislation ever slated to be passed by this Congress.
The STAR Act will give young cancer patients and their families
better access to life-saving treatments and the support they need even
after beating cancer. I strongly urge my colleagues to support this
legislation. Mr. Speaker, I thank all of the leaders of the committee
for their work.
Mr. BURGESS. Mr. Speaker, I yield 2 minutes to the gentleman from New
Jersey (Mr. Lance), vice chairman of one of our subcommittees.
Mr. LANCE. Mr. Speaker, I rise today in strong support of the
Childhood Cancer STAR Act, one of the most comprehensive pieces of
childhood cancer legislation ever taken up by the Congress and another
major bipartisan accomplishment of the House Committee on Energy and
Commerce. I certainly congratulate Dr. Burgess.
It is heartbreaking when a child is stricken with one of these life-
threatening diseases. I have met with families who have faced these
terrible circumstances, and I have been touched by their stories of
perseverance and hope.
There is more work to be done. We need to improve Federal services
for the pediatric cancer community, from research and access to
treatment and survivorship. Federal healthcare and research entities
must do all they can. The Childhood Cancer STAR Act delivers more
resources and reform to make sure we are winning the fight against
pediatric cancer by expanding grants for promising and expanded
programs.
Last week I stopped by the Hunterdon County Relay for Life event in
Ringoes, New Jersey. The event brought together cancer patients,
survivors, and their families. The crowd was large and enthusiastic in
the fight against these terrible diseases.
We owe it to those participants to ensure that federally supported
research entities are doing all that they can do in this area. The
Energy and Commerce Committee has made the cause of Cures a centerpiece
of our work. This bill provides greater hope for all of the Nation's
youngest patients and their loved ones.
Mr. Speaker, I urge a ``yes'' vote.
Mr. PALLONE. Mr. Speaker, I yield 2 minutes to the gentlewoman from
Florida (Ms. Castor), the vice ranking member of the House Committee on
Energy and Commerce.
Ms. CASTOR of Florida. Mr. Speaker, I thank the gentleman for his
leadership and for yielding the time.
Mr. Speaker, we simply must do more for pediatric cancer and the
children and families who are impacted by it. That is why I urge
adoption of S. 292. It is also H.R. 820. I would like to thank my
colleagues--Congressman McCaul, Congresswoman Speier, Congressman
Butterfield, and Congressman Kelly--for leading the charge on this. It
has broad bipartisan support.
Mr. Speaker, I mostly want to thank the families and the parents
across America who have helped educate us--folks like Bonnie Woodworth;
her husband, Scott; and kids Joe, Delaney, and Piper--who have educated
me and
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many policymakers across the Tampa Bay area. See, they lost their
daughter and sister, Tatum, in 2012 to pediatric cancer.
On behalf of so many families who often are held back by the pain of
losing a child or dealing with childhood cancer, they channeled their
energy into making things better for other families. They have educated
me and others, along with Mary Ann Massolio with the 1Voice Foundation,
back in the Tampa Bay area.
I am so happy that it is paying off today. What they have explained
is that, after you suffer this diagnosis, it is very isolating. America
doesn't do a lot of research on pediatric cancer. It is not coordinated
very well, and the resources just are not there to help bring families
together to get through these kinds of varied diagnoses.
The STAR Act hopefully will make things better because we are going
to ask the Centers for Disease Control to do more with States to track
pediatric cancer. We are going to do a little more research on how it
is best to care for survivors. We are going to try to endeavor to do
better in coordination of care for kids with pediatric cancer, do more
on research, and also, help folks in the minority community who often
don't have the resources dedicated to them that they need.
Hopefully this will bring great relief to the families, and I urge a
swift adoption.
Mr. BURGESS. Mr. Speaker, I yield 5 minutes to the gentleman from
Texas (Mr. McCaul), chairman of the House Committee on Homeland
Security, fellow Texan, and the principal author of the bill that we
have before us today.
Mr. McCAUL. Mr. Speaker, I want to thank my good friend Dr. Burgess
for shepherding this bill through the Energy and Commerce Committee and
taking us to the point where we are today on the floor.
Mr. Speaker, I rise in support of this bill, the Childhood Cancer
STAR Act. The bill addresses 4 major concerns facing the pediatric
cancer community: survivorship, treatment, access, and research.
I was proud to introduce this bill with Ms. Jackie Speier, with G.K.
Butterfield, and Mr. Mike Kelly of Pennsylvania. This is the most
comprehensive childhood cancer bill ever considered before this House.
This bill passed the House in 2016, and I encourage the support of all
Members today so we can finally send it to the President's desk for his
signature. I am proud to say that today is the day. I know a lot of the
advocates have been waiting for this day for quite some time.
Childhood cancer, unfortunately, remains the deadliest killer of our
children. At some point we, as a Congress and as a Nation, must say
enough is enough. In short, the STAR Act elevates and prioritizes the
fight against childhood cancer at the NIH. Specifically, STAR places a
pediatric oncologist on the board at the National Cancer Institute, so
childhood cancer will now have a voice at the table when funding
decisions are made.
It also expands opportunities to childhood cancer research, allowing
doctors to better understand and track how cancer develops in children.
Finally, we must also address the needs of the nearly 500,000 survivors
of childhood cancer. Due to their treatments using chemotherapy, a
World War I chemical agent, two-thirds of these survivors will face
serious, lifelong medical conditions.
When I think about what this means, I think of my friend Sadie
Keller. She is perhaps the strongest person I know. Sadie underwent
over 2 years of chemotherapy at the age of 7 after being diagnosed with
leukemia. She has been, at her young age, perhaps the most relentless
advocate for this cause, this bill here on Capitol Hill, and throughout
the childhood cancer community.
I just want to refer to this picture of little Sadie and myself when
she was going through remission, on the Speaker's balcony, looking out
over The Mall, with a vision towards the future, a future where
children will no longer have to go through this disease, looking at the
dark clouds but the sunlight coming through. That is what this bill
represents is sunlight for the children who have been afflicted with
this terrible disease.
{time} 1545
While now her cancer is in remission, that does not mean her medical
challenges are over. We must do more as a Nation to care for these
survivors. To that end, the STAR Act will improve collaboration among
providers so doctors are better able to care for survivors as they age.
I want to close by thanking Sadie, but I also want to thank people
like Danielle Leach and the Alliance for Childhood Cancer team for
their relentless advocacy on the Hill and work on this bill. I also
want to thank Nancy Goodman and Kids v. Cancer and the entire childhood
cancer advocacy community for standing up and getting us to the point
where we are today.
They are the voice of these children. They made this event possible
here today. And I want to thank them from the bottom of my heart.
I urge passage of this life-altering piece of legislation.
Mr. PALLONE. Mr. Speaker, I yield 2 minutes to the gentleman from
Virginia (Mr. Connolly).
Mr. CONNOLLY. Mr. Speaker, I thank my good friend, the ranking
member, the gentleman from New Jersey (Mr. Pallone).
I rise today in support of the Childhood Cancer STAR Act.
Thanks to research funded by the National Institutes of Health, the
private sector, and philanthropic funds, we have made progress in the
study and treatment of childhood cancers. However, every year, 16,000
children and their families receive that terrible, nightmarish news
that their child has been diagnosed with cancer.
My constituent Allison Easter-Lara was diagnosed with stage IV
neuroblastoma when she was about 2 years old. Throughout her fight, she
endured some of the harshest cancer treatments there are, with
chemotherapy and stem cell transplants.
Allison's dad, Keith, visited my office earlier this year, and he
shared a remarkable update. Allison is beating the odds. She is
currently in remission and in a phase two drug trial.
We must pass the STAR Act because we need more good outcomes like
Allison's. This bill will expand childhood cancer research
opportunities at the NIH, improve our understanding of cancer as a
disease, and work to enhance the quality of life for all survivors.
It may be a moonshot, but I believe we can find new treatments and
eventually a cure for childhood cancer.
Mr. BURGESS. Mr. Speaker, I yield 2 minutes to the gentleman from
Tennessee (Mr. Roe).
Mr. ROE of Tennessee. Mr. Speaker, I thank Dr. Burgess.
Mr. Speaker, I rise today in strong support of S. 204, the Right to
Try Act.
I am a physician and scientist with almost 40 years of experience in
treating patients, and far too many of them, Mr. Speaker, have been
diagnosed with cancer.
A little over 3 years ago, my beloved wife, Pam Roe, who was a nurse,
died of stage IV colon cancer, 5 weeks to the day after she was
operated on. Pam would have liked the right to try.
Less than 2 months after that, one of the best friends I will ever
have in my life, Phil Street, a Vietnam veteran, Air Force veteran,
died of cancer related to Agent Orange. Phil would have liked to have
had the right to try.
My senior partner in medical practice, a year later, good friend, Dr.
Bill Bone, was diagnosed with brain cancer. Bill died. He would have
liked to have had the right to try.
Shortly after that, Linda Baines, a scrub nurse that I operated with
hundreds of times in my medical practice, was diagnosed with brain
cancer and died shortly after that. Linda would have liked to have had
the right to try.
Currently, I have three friends at this moment who are being treated
with stage IV cancer. If those treatments don't work, they would like
to have the right to try.
Mr. Speaker, my first pediatric rotation in medical school was at St.
Jude Children's Hospital, where, at that time, 80 percent of children
died of their disease. I can still see many of those children's faces
today, and that was almost 50 years ago. Those children, today, have an
80 percent chance of living, but, as was stated, 16,000 parents have to
face that this year.
I have had the misfortune of having to look patients in the eye and
say: Your life is not in my hands anymore;
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it is in God's hands. In that moment, I will tell you this: all that
these patients want and deserve is a right to try.
Please support this legislation.
Mr. PALLONE. Mr. Speaker, I just want to urge support for this
legislation. The support is obviously bipartisan, and I urge all my
colleagues to support it.
Mr. Speaker, I yield back the balance of my time.
Mr. BURGESS. Mr. Speaker, I, too, want to express my strong support
for S. 292, the Childhood Cancer Survivorship, Treatment, Access, and
Research Act of 2018, Childhood Cancer STAR Act.
And, once again, I want to thank my colleague, the gentleman from
Texas (Mr. McCaul), for spearheading this effort.
I urge all my colleagues to support the legislation.
Mr. Speaker, I yield back the balance of my time.
Ms. SPEIER. Mr. Speaker, I rise today in support of the Childhood
Cancer Survivorship, Treatment, Access & Research (STAR) Act, a bill
that will touch many lives affected by childhood cancer. This has been
a true example of bipartisanship. I particularly want to thank my
colleague Congressman McCaul for his leadership on this critical bill
and my other fellow co-chairs of the Congressional Childhood Cancer
Caucus, Congressmen Butterfield and Kelly. I also want to thank our
Senate partners, Senators Reed, Moore Capito, Van Hollen, and Isakson.
And to all children and families affected by childhood cancer, this is
their victory. It is because of their tireless advocacy that this
landmark legislation will be sent to the President's desk and signed
into law.
With the STAR Act, we have won a battle in our long-fought war
against childhood cancer. This bill creates an arsenal of tools for the
National Institutes of Health to promote vital research into childhood
cancer, such as the establishment of National Biorepositories. It also
improves the quality of life for survivors, including by funding models
of long-term care to help monitor the progress of survivors as they
age.
Mr. Speaker, I want to take a moment to recognize two of my
constituents who have personally inspired my work on this important
bill. The first is Christie Chaudry, who after surviving childhood
cancer grew up to become a pediatric oncology nurse practitioner. For
the last seven years, Christie has helped run the inpatient
chemotherapy unit at Lucile Packard Children's Hospital at Stanford--
the same hospital where she was treated as a child.
The second is Andrea Church, a childhood cancer advocate from San
Carlos, California, who set a goal to have San Francisco City Hall lit
up in gold in honor of Childhood Cancer Awareness Month. Andrea's
daughter, Riley, passed away at age 14 due to an inoperable brain
tumor. In her daughter's honor, Andrea reached and surpassed her goal
two years ago. Not only did San Francisco City Hall go gold, so did
Oakland City Hall, AT&T Park--the home of the San Francisco Giants--and
the Oakland Coliseum--the home of the Oakland A's.
Mr. Speaker, the STAR Act opens the door to numerous opportunities
for research and innovation in the treatment of childhood cancer. It
addresses critical gaps in the care of childhood cancer survivors, and
it creates a holistic approach to studying the disease. With the
passage of this legislation, we are moving closer to a future where
children and their families may one day live cancer-free. I thank my
colleagues for their support.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Texas (Mr. Burgess) that the House suspend the rules and
pass the bill, S. 292.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill was passed.
A motion to reconsider was laid on the table.
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