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Fred U.
Republican MI 6

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  • Gabriella Miller Kids First Research Act

    by Representative Fred Upton

    Posted on 2013-12-11

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    UPTON. Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 2019) to eliminate taxpayer financing of presidential campaigns and party conventions and reprogram savings to provide for a 10-year pediatric research initiative through the Common Fund administered by the National Institutes of Health, and for other purposes, as amended.



    The Clerk read the title of the bill.

    The text of the bill is as follows: H.R. 2019 Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled, SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Gabriella Miller Kids First Research Act''.

    SEC. 2. TERMINATION OF TAXPAYER FINANCING OF POLITICAL PARTY CONVENTIONS; USE OF FUNDS FOR PEDIATRIC RESEARCH INITIATIVE.

    (a) Termination of Payments for Conventions; Use of Funds for Pediatric Research.--Section 9008 of the Internal Revenue Code of 1986 is amended by adding at the end the following new subsection: ``(i) Termination of Payments for Conventions; Use of Amounts for Pediatric Research Initiative.--Effective on the date of the enactment of the Gabriella Miller Kids First Research Act-- ``(1) the entitlement of any major party or minor party to a payment under this section shall terminate; and ``(2) all amounts in each account maintained for the national committee of a major party or minor party under this section shall be transferred to a fund in the Treasury to be known as the `10-Year Pediatric Research Initiative Fund', which shall be available only for the purpose provided in section 402A(a)(2) of the Public Health Service Act, and only to the extent and in such amounts as are provided in advance in appropriation Acts.''.

    (b) Continuation of Priority of Payments From Accounts Over Payments to Candidates.-- (1) Availability of payments to candidates.--The third sentence of section 9006(c) of such Code is amended by striking ``section 9008(b)(3),'' and inserting ``section 9008(i)(2),''.

    [[Page H7654]] (2) Availability of payments from presidential primary matching payment account.--The second sentence of section 9037(a) of such Code is amended by striking ``section 9008(b)(3)'' and inserting ``section 9008(i)(2)''.

    (c) Conforming Amendments.-- (1) Elimination of reports by federal election commission.--Section 9009(a) of such Code is amended-- (A) by adding ``and'' at the end of paragraph (2); (B) by striking the semicolon at the end of paragraph (3) and inserting a period; and (C) by striking paragraphs (4), (5), and (6).

    (2) Elimination of penalties.--Section 9012 of such Code is amended-- (A) in subsection (a)(1), by striking the second sentence; (B) in subsection (c), by striking paragraph (2) and redesignating paragraph (3) as paragraph (2); (C) in subsection (e)(1), by striking the second sentence; and (D) in subsection (e)(3), by striking ``, or in connection with any expense incurred by the national committee of a major party or minor party with respect to a presidential nominating convention''.

    SEC. 3. 10-YEAR PEDIATRIC RESEARCH INITIATIVE.

    (a) Allocation of NIH Funds in Common Fund for Pediatric Research.--Paragraph (7) of section 402(b) of the Public Health Service Act (42 U.S.C. 282(b)) is amended to read as follows: ``(7)(A) shall, through the Division of Program Coordination, Planning, and Strategic Initiatives-- ``(i) identify research that represents important areas of emerging scientific opportunities, rising public health challenges, or knowledge gaps that deserve special emphasis and would benefit from conducting or supporting additional research that involves collaboration between 2 or more national research institutes or national centers, or would otherwise benefit from strategic coordination and planning; ``(ii) include information on such research in reports under section 403; and ``(iii) in the case of such research supported with funds referred to in subparagraph (B)-- ``(I) require as appropriate that proposals include milestones and goals for the research; ``(II) require that the proposals include timeframes for funding of the research; and ``(III) ensure appropriate consideration of proposals for which the principal investigator is an individual who has not previously served as the principal investigator of research conducted or supported by the National Institutes of Health; ``(B)(i) may, with respect to funds reserved under section 402A(c)(1) for the Common Fund, allocate such funds to the national research institutes and national centers for conducting and supporting research that is identified under subparagraph (A); and ``(ii) shall, with respect to funds appropriated to the Common Fund pursuant to section 402A(a)(2), allocate such funds to the national research institutes and national centers for making grants for pediatric research that is identified under subparagraph (A); and ``(C) may assign additional functions to the Division in support of responsibilities identified in subparagraph (A), as determined appropriate by the Director;''.

    (b) Funding for 10-Year Pediatric Research Initiative.-- Section 402A of the Public Health Service Act (42 U.S.C. 282a) is amended-- (1) in subsection (a)-- (A) by redesignating paragraphs (1) through (3) as subparagraphs (A) through (C), respectively, and moving the indentation of each such subparagraph 2 ems to the right; (B) by striking ``For purposes of carrying out this title'' and inserting the following: ``(1) This title.--For purposes of carrying out this title''; and (C) by adding at the end the following: ``(2) Funding for 10-year pediatric research initiative through common fund.--For the purpose of carrying out section 402(b)(7)(B)(ii), there is authorized to be appropriated to the Common Fund, out of the 10-Year Pediatric Research Initiative Fund described in section 9008 of the Internal Revenue Code of 1986, and in addition to amounts otherwise made available under paragraph (1) of this subsection and reserved under subsection (c)(1)(B)(i) of this section, $12,600,000 for each of fiscal years 2014 through 2023.''; and (2) in subsections (c)(1)(B), (c)(1)(D), and (d), by striking ``subsection (a)'' each place it appears and inserting ``subsection (a)(1)''.

    (c) Supplement, Not Supplant; Prohibition Against Transfer.--Funds appropriated pursuant to section 402A(a)(2) of the Public Health Service Act, as added by subsection (b)-- (1) shall be used to supplement, not supplant, the funds otherwise allocated by the National Institutes of Health for pediatric research; and (2) notwithstanding any transfer authority in any appropriation Act, shall not be used for any purpose other than allocating funds for making grants as described in section 402(b)(7)(B)(ii) of the Public Health Service Act, as added by subsection (a).

    The SPEAKER pro tempore. Pursuant to the rule, the gentleman from Michigan (Mr. Upton) and the gentleman from New Jersey (Mr. Pallone) each will control 20 minutes.

    The Chair recognizes the gentleman from Michigan.

    General Leave Mr. UPTON. Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days to revise and extend their remarks and insert extraneous materials in the Record on the bill.

    The SPEAKER pro tempore. Is there objection to the request of the gentleman from Michigan? There was no objection.

    Mr. UPTON. Mr. Speaker, I yield myself 3 minutes.

    Mr. Speaker, I rise today in support of the Gabriella Miller Kids First Research Act of 2013. H.R. 2019, authored by my colleague, Gregg Harper, is a bill that will help countless kids and families across the country.

    The Gabriella Miller Kids First Research Act would prioritize funding for the research of pediatric diseases and disorders such as cancer, autism, and Fragile X. It would eliminate taxpayer financings of party conventions, political money, and use these funds instead to expand pediatric research at the NIH Common Fund through their common fund. This bill certainly does put kids first.

    You know, Gabriella Miller was a little warrior in the battle against childhood cancer. At only 10 years of age, she had the courage miles beyond her years. A frying pan and a walnut is all you need to understand her brave outlook on life.

    When she was diagnosed with brain cancer, she was told that the size of that tumor was about like a walnut; and from then on, Gabriella traveled with her trusty frying pan squashing countless walnuts along the way all over the world.

    That is the kind of courage and outlook on life that she had. Advancing health research for millions of young patients who suffer from rare and genetic diseases has got to be a priority. While we have made great strides in the country in finding cures and treatments, we certainly have a great amount of work to do. Included in the work is pushing for research that is going to help uncover cures for pediatric diseases.

    In order for clinical trials and other advancements to meet their full potential, adequate resources have got to be directed for pediatric research. The legislation is an example of how much can be accomplished by ending wasteful spending and redirecting those funds towards national priorities like pediatric research.

    This effort is going to help families like the Kennedys in Mattawan, Michigan, my constituents. Eric and Sarah have two wonderful little girls, Brooke and Brielle, who have the rare disease called spinal muscular atrophy. Those two little angels, who are fighting SMA with the same vigor and sunny outlook exhibited by Gabriella, are decorated little generals in the effort to boost research for rare diseases and serve as inspiration for every one of us.

    The sad reality is that it is often difficult to conduct research into rare diseases due to the small number of individuals with those diseases; but we are working to change that--yes, we are--and provide families with greater hope for a cure and in advances of treatment.

    This bill has over 150 cosponsors and is supported by a long list of patient advocacy groups including Autism Speaks, Juvenile Diabetes Research Foundation, Leukemia and Lymphoma Society, and FightSMA.

    I wholeheartedly agree with the bill's Democrat sponsor, Peter Welch from Vermont, who recently said last night on CNN: Can we just put the battle axes down for a while and take a step forward? He thinks we can. We need to.

    With all of us today with so many diseases, we need to pass this bill.

    I reserve the balance of my time.

    Angelman Syndrome Foundation, Aurora, IL, July 5, 2013.

    Hon. Eric Cantor, Majority Leader, House of Representatives,United States Capitol, Washington, DC.

    Hon. Gregg Harper, House of Representatives, Cannon House Office Building, Washington, DC.

    Dear Leader Cantor and Congressman Harper: On behalf of the Angelman Syndrome Foundation, ASF, I write in strong support for H.R. 2019, the Kids First Research Act. This important legislation will [[Page H7655]] expand pediatric medical research activities at the National Institutes of Health, NIH, by approximately $130 million. Pediatric research should be a national priority, and ASF applauds Congressman Harper for his leadership on this issue. This legislation has the potential to develop treatments and unlock the cure for thousands of impacted children, including those with Angelman Syndrome.

    Angelman syndrome is a single-gene neurodevelopmental disorder that is related to autism. Continued research for pediatric neurodevelopmental disorders, such as Angelman syndrome, will lead to effective treatments that will help combat the autism epidemic in the U.S. The Angelman Syndrome Foundation's mission is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.

    On behalf of ASF, thank you again for your leadership and for supporting the Kids First Research Act.

    Sincerely, Eileen Braun, Executive Director.

    ____ ASCO, July 10, 2013.

    Hon. Gregg Harper, House of Representatives,Cannon House Office Building, Washington, DC.

    Dear Representative Harper: On behalf of the American Society of Clinical Oncology (ASCO), thank you for the introduction of The Kids First Research Act of 2013 (H.R. 2019). In this difficult budget environment, we are pleased to see any amount of available funds transferred to vital medical research and offer our endorsement of the legislation. We commend this bipartisan effort in acknowledging that medical research should be a priority for federal spending.

    ASCO is the national organization representing more than 30,000 physicians and other health care professionals specializing in the treatment and research of both pediatric and adult cancers. Through its support of research leading to breakthrough improvements in cancer treatment, the NIH consistently provides a dramatic return on investment, both in the form of lives saved and economic growth. Our members witness first hand on a daily basis the high risk, high reward research that begins with NIH funding and results in safer, more effective treatment options for cancer patients.

    Given its track record of unmatched successes, we are truly alarmed by the impact of recent budget cuts to the NIH and the National Cancer Institute (NCI). Budget stagnation in the last few fiscal years now compounded by cuts due to sequestration has led to the lowest number of new grants being funded at NIH since 1998. This is a devastating blow to the pace of medical research progress especially since it is occurring at a time of unprecedented basic and clinical science discoveries that point to rapid progress against many cancers. It has put life-saving discoveries on hold, stalled the careers of the young medical scientists who would be developing cures, and slowed one of our nation's areas of historical technology leadership that is also a key economic driver. Given the human and economic costs of these cuts, ASCO calls on Congress to repeal sequestration and return to regular order in budget negotiations. It is urgent that we prevent the $19 billion in sequestration cuts to the NIH expected over the next ten years and return the NIH to a priority position in federal budget negotiations.

    The Kids First Research Act is a great step in the right direction to put the NIH back on a plan for reasonable growth and can make a difference. Through NIH's time-tested peer review process, this infusion of $130 million over the next ten years will turn available dollars into new hope for the health of America's children and all of our citizens. But it is important to note that it will not compensate for the larger cuts in this area of investment that have already happened and are on track to worsen.

    ASCO stands ready to help in your efforts to support medical research at the NIH. If you have any questions or would like assistance from ASCO on any issue involving cancer research, please do not hesitate to contact Amanda Schwartz at Amanda .schwartz@asco.org or 571-483-1647.

    Sincerely, Clifford A. Hudis, MD, FACP, President, American Society of Clinical Oncology.

    ____ Bear Necessities, Pediatric Cancer Foundation, Chicago, IL, July 3, 2013.

    Re: Kids First Research Act of 2013 (H.R. 2019) Hon. Gregg Harper, House of Representatives, Cannon House Office Building, Washington, DC.

    Dear Congressman Harper: On behalf of the countless children waging their courageous battle against pediatric cancer, we strongly and respectfully urge you to support the Kids First Research Act of 2013 (H.R. 2019).

    This measure will provide much needed additional federal support to complement ongoing research supported by substantial private funding from national non-profit childhood cancer organizations, as well as by the National Institute of Health and National Cancer Institute. Passage of this bill will ensure that the investments of both public and private resources reach their fullest potential by enabling a critical mass of research and discovery required to culminate into promising medical treatments that are ``safe and effective'' for many childhood diseases, including childhood cancer.

    As you may know, one in every 330 children in the United States develops cancer before the age of nineteen. The incidence of cancer among children is increasing. Each school day, enough children are diagnosed with cancer to empty two classrooms. Depending on the type of cancer and the development upon diagnosis, approximately 2,300 children will die from cancer in any given year. The number of children diagnosed with cancer in the U.S. each year puts more potential years of life at risk than any single type of adult cancer. Cancer remains the number one disease killer of America's children.

    There are more than 360,000 childhood cancer survivors of all ages in the United States. Unfortunately, 74% of childhood cancer survivors have chronic illnesses, and some 40% of childhood cancer survivors have severe illnesses or die from such illnesses. Survivors are at significant risk for secondary cancers later in life. Current cancer treatments can affect a child's growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed. Radiation therapy to a child's brain can significantly damage cognitive function, especially if given at a very young age. While currently there is very little in terms of ``safe and effective'' cures for any particular type of childhood cancer, the underlying genetics of the disease and recent research breakthroughs make such treatments foreseeable.

    Bear Necessities Pediatric Cancer Foundation thanks you for sponsoring the Kids First Research Act of 2013 (H.R. 2019) and we applaud your ongoing commitment to improving the lives of thousands of children diagnosed with life-threatening diseases and sparing families from the devastation that these types of diagnoses cause. We look forward to working with you to pass this important bill to help ensure a brighter future for America's children.

    Sincerely, Kathleen A. Casey, CEO and Founder.

    ____ March of Dimes Foundation, Office of Government Affairs, Washington, DC, July 17, 2013.

    Hon. Gregg Harper, House of Representatives, Washington, DC.

    Hon. Tom Cole, House of Representatives, Washington, DC.

    Hon. Peter Welch, House of Representatives, Washington, DC.

    Dear Representatives Harper, Cole and Welch: On behalf of the March of Dimes, a unique collaboration of over 3 million volunteers affiliated with 51 chapters representing every state, the District of Columbia and Puerto Rico, I would like to express our support for H.R. 2019, the Kids First Research Act. This legislation would provide a welcome infusion of resources directed to pediatric research at the National Institutes of Health, NIH.

    Our nation must commit to a sustained investment in pediatric research to build our future by improving the health of the next generation of children. As one example, over 500,000 infants are born preterm in the U.S. each year. Among those who survive, one in five faces health problems that persist for life such as cerebral palsy, intellectual disabilities, chronic lung disease, and deafness. Research breakthroughs that allow us to reduce the rates of preterm birth would lead to significant declines in infant mortality and save millions in healthcare and special education costs.

    The March of Dimes takes no position on H.R. 2019's elimination of the Presidential Election Campaign Fund, but if this step is pursued, we strongly support directing the resultant funds to pediatric research. In addition, we urge Congress and the Administration to work together to find a balanced approach to deficit reduction that ensures the necessary resources are available to fund lifesaving research across the federal health agencies.

    Thank you again for your leadership in introducing the Kids First Research Act. We look forward to working with you to make pediatric research a national priority.

    Sincerely, Dr. Jennifer L. Howse, President.

    ____ Brooke's Blossoming Hope for Childhood Cancer Foundation, December 10, 2013.

    Hon. Blake Farenthold, House of Representatives, Washington, DC.

    Dear Mr. Farenthold: As a medical research organization working to accelerate the development of promising medical discoveries or cures for cancers common to children, adolescents, and young adults, we write to express our strong support for your legislation, the Kids First Research Act of 2013 (H.R. 2019).

    This measure provides much needed additional federal support to complement ongoing research supported by substantial private funding from national non-profit childhood cancer organizations, as well as by the National Institute of Health and National Cancer Institute. Passage of this bill will ensure that the investments of both public and private resources reach their fullest potential by enabling a critical mass of research [[Page H7656]] and discovery required to culminate into promising medical treatments that are ``safe and effective'' for many childhood diseases, including childhood cancer.

    As you know, one in every 330 children in the United States develops cancer before the age of nineteen. The incidence of cancer among children is increasing. Each school day, enough children are diagnosed with cancer to empty two classrooms. Depending on the type of cancer and the development upon diagnosis, approximately 2,300 children will die from cancer in any given year. The number of children diagnosed with cancer in the U.S. each year puts more potential years of life at risk than any single type of adult cancer. Cancer remains the number one disease killer of America's children.

    There are more than 360,000 childhood cancer survivors of all ages in the United States. Unfortunately, 74% of childhood cancer survivors have chronic illnesses, and some 40% of childhood cancer survivors have severe illnesses or die from such illnesses. Survivors are at significant risk for secondary cancers later in life. Current cancer treatments can affect a child's growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed. Radiation therapy to a child's brain can significantly damage cognitive function, especially if given at a very young age. While currently there is very little in terms of ``safe and effective'' cures for any particular type of childhood cancer, the underlying genetics of the disease and recent research breakthroughs make such treatments foreseeable.

    Brooke's Blossoming Hope for Childhood Cancer Foundation thanks you for sponsoring the Kids First Research Act of 2013 (H.R. 2019) and we applaud your ongoing commitment to improving the lives of thousands of children diagnosed with life-threatening diseases and sparing families from the devastation that it causes. We look forward to working with you to pass this important bill to help ensure a brighter future for America's children.

    Sincerely, Jessica Hester, M.A. Ed., Chief Executive Officer and Founder.

    ____ Rally Foundation, Sandy Springs, GA, December 10, 2013.

    Hon. Gregg Harper, House of Representatives, Cannon House Office Building, Washington, DC.

    Dear Mr. Harper: As a non-profit organization that exists to fund childhood cancer research, the Rally Foundation for Childhood Cancer Research, we write to express our strong support for your legislation, the Kids First Research Act of 2013 (H.R. 2019).

    This measure provides much needed additional federal support to complement ongoing research supported by substantial private funding from national non-profit childhood cancer organizations, as well as by the National Institute of Health and National Cancer Institute. Passage of this bill will ensure that the investments of both public and private resources reach their fullest potential by enabling a critical mass of research and discovery required to culminate into promising medical treatments that are ``safe and effective'' for many childhood diseases, including childhood cancer.

    As you know, one in every 330 children in the United States develops cancer before the age of nineteen. The incidence of cancer among children is increasing. Each school day, enough children are diagnosed with cancer to empty two classrooms. Depending on the type of cancer and the development upon diagnosis, approximately 2,300 children will die from cancer in any given year. The number of children diagnosed with cancer in the U.S. each year puts more potential years of life at risk than any single type of adult cancer. Cancer remains the number one disease killer of America's children.

    There are more than 360,000 childhood cancer survivors of all ages in the United States. Unfortunately, 74 percent of childhood cancer survivors have chronic illnesses, and some 40 percent of childhood cancer survivors have severe illnesses or die from such illnesses. Survivors are at significant risk for secondary cancers later in life. Current cancer treatments can affect a child's growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed. Radiation therapy to a child's brain can significantly damage cognitive function, especially if given at a very young age. While currently there is very little in terms of ``safe and effective'' cures for any particular type of childhood cancer, the underlying genetics of the disease and recent research breakthroughs make such treatments foreseeable.

    The Rally Foundation thanks you for sponsoring the Kids First Research Act of 2013 (H.R. 2019) and we applaud your ongoing commitment to improving the lives of thousands of children diagnosed with life-threatening diseases and sparing families from the devastation that it causes. We look forward to working with you to pass this important bill to help ensure a brighter future for America's children.

    Sincerely, Dean Crowe, Founder and CEO.

    ____ Solving Kids' Cancer, December 10, 2013.

    Hon. Gregg Harper, House of Representatives, Cannon House Office Building, Washington, DC.

    Dear Representative Harper: On behalf of Solving Kids' Cancer, I am writing to express our strong support for your legislation, the Kids First Research Act of 2013 (H.R. 2019), which would supply critical funds to the National Institutes of Health for pediatric medical research.

    As you know, cancer kills more kids in the U.S. than any other disease. Each school day, enough children are diagnosed with cancer to empty two classrooms. We at Solving Kids' Cancer believe that Every Kid Deserves to Grow Up. For kids with the deadliest childhood cancers, including neuroblastoma, sarcomas and brain tumors, their chances of ever living long enough to be able to cast their first ballot are less than 50 percent. This is unacceptable.

    Children with cancer need new treatment options today. As we enter a new era in cancer research with advances in immunotherapy, innovative clinical trials that harness a child's own immune system to fight cancer will help change the future of childhood cancer. But without the necessary funding, children battling cancer will be left behind, with limited treatment options.

    Solving Kids' Cancer is proud to lend our support of the Kids First Research Act of 2013 (H.R. 2019). On behalf of the families and children with cancer, thank you for turning awareness into action and for helping to change the world for children.

    Sincerely, Scott Kennedy, MBA, Co-founder and Executive Director.

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