CHILDHOOD CANCER SURVIVORSHIP, TREATMENT, ACCESS, AND RESEARCH ACT OF 2018
(House of Representatives - May 22, 2018)

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[Congressional Record Volume 164, Number 84 (Tuesday, May 22, 2018)]
[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

[[Page H4354]]

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;

[[Page H4355]]

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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