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  • Gabriella Miller Kids First Research Act

    by Representative Tom Cole

    Posted on 2013-12-11

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    COLE. I thank my friend for yielding.



    Mr. Speaker, I want to begin by praising my friend Gregg Harper and my friend Peter Welch, who come to this floor with a very worthy purpose, and that is to redirect government funding toward something that is not particularly important toward something that is very important--medical research for children.

    The question when you have a worthy goal is always: How do you pay for it? Where will you actually get the resources? For many years, I have brought to this floor legislation that would eliminate public funding for political party [[Page H7662]] conventions and Presidential campaigns. I could go into debate ad infinitum. The President has never used any public funding--didn't feel the need for it--in either of his two campaigns. Neither did Mr. Romney. On the political conventions, both political parties this year actually did take the money.

    I can tell you as a former chief of staff on the Republican National Committee who put on the convention in 2000, they do not need it. They absolutely do not need it. They can raise all the money they need from private sources, just as their nominees raised money from private sources.

    That bill has actually passed this House on multiple occasions with a bipartisan vote. I was prepared to do that again and I got a call from Leader Cantor. He said: Tom, I know you have been working on this problem for a long time. I know you are concerned about it. What if we redirected that money towards something that is a better purpose, a better use of public dollars? And he mentioned Gregg's bill. I couldn't agree with him more.

    So for those of you that are looking for something sinister or trying to link this to something it is not connected to, like the sequester, it is simply a modest step in the right direction. It takes money that we know is wasted and puts it to good use.

    For those of you that say it can't pass the other body, the other body in the last Congress on amendment voted 95-5 to take away public funding of political conventions. We still have a disagreement on Presidential campaigns. But funding political conventions really is more important than directing this money to a more worthy purpose? We are not even trying to take it out of the Federal budget. I just think that kind of logic defies imagination.

    This is a good-faith effort to do something that ought to bring us together instead of pull us apart. It is a modest step. I would be the first to admit that. But let's take the modest step in the right direction, take public dollars that we are now wasting on political conventions, give them to researchers, and let them do their work. That is just simply a better use of the public purse in a time of limited means.

    So I urge support for my friends' bill, H.R. 2019, Mr. Harper and Mr. Welch. I want to thank Leader Cantor. This was his idea of bringing two ideas together. I think it is a good one. I hope this House embraces it in a bipartisan fashion.

    I want to thank my friend, the chairman of Energy and Commerce, for his effort to bring this forward and advance it.

    Everylife Foundation for Rare Disease, Novato, CA, June 10, 2013.

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

    Dear Congressman Harper: The EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy.

    We are writing to support the Kids First Research Act of 2013 (H.R. 2019). This bipartisan bill would eliminate taxpayer financing of presidential campaigns and party conventions and reprogram those savings to provide for a 10- year pediatric research initiative through the Common Fund administered by the National Institutes of Health.

    During these trying fiscal times, we are pleased to see efforts that would increase funds for pediatric research. Unfortunately, pediatric rare diseases and cancer is terribly underfunded and largely overlooked by drug companies and research institutions. Public funding is essential to help spur the development of treatments for these children.

    We are pleased to express our strong support for H.R. 2019, and believe this legislation will help to bring increased funding and awareness to pediatric medical research. We look forward to working with you and your staff to ensure this bill is enacted into law.

    Sincerely, Emil D. Kakkis, M.D., Ph.D., President.

    ____ June 27, 2013.

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

    Dear Rep. Harper: On behalf of United for Medical Research (UMR), a coalition of leading research institutions, patient and health advocates, and private industry joined together in support of medical research funded by the National Institutes of Health (NIH), we write to thank you for the introduction of the Kids First Research Act (H.R. 2019). We strongly support increased funding for NIH, and appreciate your identification of medical research as a priority in a time of deficit reduction and fiscal austerity.

    The lifesaving research funded by NIH has already yielded extraordinary benefits to human health and serves as a beacon of hope for those still suffering from disease or disability, including the families of children afflicted with heartbreaking conditions. NM also plays a role in sustaining the U.S. economy, supporting over 400,000 jobs and generating nearly $60 billion in nationwide economic output in 2012 alone. Unfortunately, recent cuts to the NIH budget threaten both our ability to improve human health and our worldwide leadership in medical research. UMR believes it is critical to renew our commitment to funding NIH, and we are grateful for your effort to find creative solutions to support medical research.

    To ensure continued success in our quest for treatments and cures to our most devastating childhood and adult diseases, as well as continuing to reap the substantial return on investment to our economy, it is imperative that funding for NIH be sustained through regular, annual increases in appropriations. The Kids First Research Act is an important step in mitigating the loss of funding caused by a decade of reduced budgets, we thank you for it, and we look forward to working with you to reinvigorate our investment in the life sciences.

    Sincerely, United for Medical Research.

    ____ Just-In-Time Neuroblastoma Foundation, Inc., Greenwood Village, CO, June 28, 2013.

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

    Dear Mr. Harper: As a non-profit organization working to promote awareness of childhood cancer, 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% 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.

    The Just-In-Time Neuorblastoma 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 children diagnosed with life-threatening diseases and spearing 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, Katrina M. Brohman, Co-Founder & Vice President.

    ____ The Nicholas Conor Institute, San Diego, CA, June 17, 2013.

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

    Dear Mr. Harper: 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. 1724).

    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 [[Page H7663]] 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.

    The Nicholas Conor Institute for Pediatric Cancer Research thanks you for sponsoring the Kids First Research Act of 2013 (H.R. 1724) and we applaud your ongoing commitment to improving the lives of thousands children diagnosed with life-threatening diseases and spearing families from the devastation that is causes. We look forward to working with you to pass this important bill to help ensure a brighter future for America's children.

    Sincerely, Beth Anne Baber, Ph.D., M.B.A., Chief Executive Officer and Co-founder.

    ____ Pulmonary Hypertension Association, Silver Spring, MD, June 21, 2013.

    Hon. Joe Pitts, Chairmen, Subcommittee on Health Energy & Commerce Committee, Cannon House Building.

    Hon. Kevin Brady, Chairmen, Subcommittee on Health Ways & Means Committee, Cannon House Building.

    Hon. Frank Pallone, Ranking Member, Subcommittee on Health Energy & Commerce Committee, Cannon House Building.

    Hon. Jim McDermott, Ranking Member, Subcommittee on Health Ways & Means Committee, Longworth House Building.

    Dear Chairmen and Ranking Members: I write you today on behalf of the Pulmonary Hypertension Association (PHA) to ask for your support of the public health goals of the Kids First Research Act (H.R. 2019). Please work to advance this legislation through the legislative process so that its provisions establishing a new pediatric research initiative at the National Institutes of Health (N111) might be enacted.

    The pulmonary hypertension (PH) community understands the value of investing in critical pediatric medical research. PH is a disabling and often fatal progressive condition where the blood pressure in the lungs rises to dangerously high levels. In PH patients, blood flow between the heart and lungs is blocked or constricted. As a result, the heart must pump harder causing it to enlarge and ultimately fail. PH can be idiopathic, and occur without a known cause, or be secondary to other conditions, such as, scleroderma, lupus, blood clots, and sickle cell. PH impacts individuals of all races and ages, including children. Similar to other disease states, pediatric research into PH lags behind adult research. While there are nine FDA-approved treatments available for adults with PH, none are approved for children.

    PHA supports a pediatric research program to improve the lives of children impacted by PH and we are pleased that Congress is interested in supporting pediatric research at NIH. In the interest of improving care for PH patients, PHA also engages in advocacy activity, including advocating for the Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073), budget neutral legislation designed to improve diagnosis of PH before the condition reaches an advanced stage. We hope you will continue to support and advance legislative efforts focused on bolstering research activities and improving care for patients with PH, such as H.R. 2019 and H.R. 2073.

    Sincerely, Rino Aldrighetti, President & CEO.

    ____ Foundation for Angelman Syndrome Therapeutics, Hon. Eric Cantor, Majority Leader, House of Representatives, United States Capitol, Washington, DC.

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

    Dear Leader Cantor and Congressmen Harper: On behalf of the Foundation for Angelman Syndrome Therapeutics (FAST), I am pleased to offer this letter of support for H.R. 2019, the Kids First Research Act. This legislation will expand pediatric medical research activities administered through the Common Fund at the National Institutes of Health. By prioritizing resources for pediatric research, this bill will provide much needed funding to bolster FAST's commitment to find treatments, and eventually a cure for Angelman Syndrome.

    The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy. Angelman Syndrome (or AS) is a neurodevelopmental disorder affecting approximately 1 in 15,000 live births. Although the cause of AS is known, there are currently no treatments available for this disorder. FAST is committed to assisting individuals living with Angelman Syndrome realize their full potential and quality of life.

    On behalf of FAST, I thank you for your leadership and for supporting this important legislation. If you have any questions, please feel free to contact me.

    Sincerely, Paula Evans, Chairperson.

    ____ Brain Injury Association of America, Vienna, VA, June 26, 2013.

    Hon. Joseph R. Pitts, Committee on Energy and Commerce, Subcommittee on Health, Rayburn House Office Building, Washington, DC.

    Dear Chairman Pitts: The Brain Injury Association of America (BIAA) is the nation's oldest and largest brain injury patient advocacy organization. BIAA supports H.R. 2019, the Kids First Research Act. Thank you for introducing this very important legislation. The Kids First Research Act will ensure important pediatric research is funded at the National Institutes of Health (NIH).

    Traumatic brain injury (TBI) is a misdiagnosed, misunderstood, under-funded neurological disease affecting at least 1.7 million children and adults in the U.S. each year. Depending on type and severity, brain injuries can lead to physical, cognitive, and psychosocial or behavioral impairments ranging from balance and coordination problems to loss of hearing, vision or speech. Fatigue, memory loss, concentration difficulty, anxiety, depression, impulsivity and impaired judgment are also common after brain injury. Even so-called ``mild'' injuries can have devastating consequences that require intensive treatment and long-term care. Often called the ``silent epidemic,'' brain injury affects people in ways that are invisible. The injury can lower performance at school and at work, interfere with personal relationships and bring financial ruin.

    Thank you for supporting pediatric research at NIH. Please contact Amy Colberg, BIAA's Director of Government Affairs with any questions.

    Sincerely, Susan H. Connors, President/CEO.

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