This tab is devoted to current proposed legislative initiatives that will have an impact on the childhood cancer community. Click on any of the legislative bills below that interest you to get all the information you need. Take action by contacting your legislators and speak up for the children. We strongly encourage everyone to write their Representative and/or Senators and voice your opinion on the legislation that affects you and/or our childhood cancer community. You are their voice. Speak loudly. Speak often.
The petition urges President Biden to include a comprehensive strategy to end pediatric cancer as part of his national plan to, in his words, “end cancer as we know it”; 2) requests that President Biden include in his plan an initiative for the U.S. government to partner with the pharmaceutical industry to incentivize and require more aggressive development of pediatric cancer drugs; and 3) urges Congress to increase overall government research funding for pediatric cancer and pass the bipartisan Gabriella Miller Kids First Research Act 2.0.
In 2014, Congress passed The Gabriella Miller Kids First Pediatric Research Act. The act was intended to be a 10-year program. With the $126 million in funding provided in the original 10 year Act, the National Institutes of Health (NIH) Common Fund established the very successful Gabriella Miller Kids First Pediatric Research Program (Kids First). The Gabriella Miller Kids First Research Act 2.0 (HR 623) will reauthorize Kids First at $125 million for a five year period and will be able to expand a truly comprehensive SHARED-DATA resource for scientists researching the majority of pediatric cancers and rare disease, and will continue to support development of computational tools to analyze very large, complex genomic, and clinical data sets. Show your support to have this bill cross the finish line this year.
The Give Kids A Chance Act, introduced by Congrssmen McCaul and G.K. Butterfield in the House, and was accepted and passed as an amendment into HR 7667 Food and Drug Amendments 2022. Now we turn our attention to the Senate. Senator Marco Rubio (FL) and and Senator Michael Bennet (CO) introduced the the bill as S. 4215. When passed, it will pave the way for cutting-edge research and child-focused cancer treatments by authorizing the FDA to require pediatric cancer trials study not just one drug, but a combination of drugs so these drugs together can beat relapsed cancers. Studying combination drugs will improve outcomes for children and families across the country. Currently, almost all pediatric cancer trials are conducted on kids with relapsed cancer. FDA is only authorized to require pediatric cancer trials of one drug. Unfortunately, children with relapsed cancer are rarely cured by one-drug treatments because their cancers are so advanced. Senate Bill S.4215 Give Kids a Chance Act authorizes the FDA to require pediatric cancer trials study not just 1 drug, but a combination of drugs so that these drugs together can beat relapsed cancers.
This bipartisan, bicameral ( HR 3089 / S. 1544) legislation led by Congresswomen Katherine Clark (D-MA) and Jaime Herrera Beutler (R-WA) and Senators Michael Bennet (D-CO) and Charles Grassley (R-IA) was recently introduced and will speed up care for many children with cancer by removing duplicative screening processes. It will help ensure children on Medicaid or the Children’s Health Insurance Program (CHIP) who require care from providers located outside of their home states will not face unnecessary delays in accessing such time-sensitive and essential care. Children’s Hospital Association has provided a detailed explanation of the benefits of this legislation and talking points.
A House Resolution that expresses support for the designation of DIPG Awareness Day. DIPG is diffuse intrinsic pontine glioma, a terminal childhood brain cancer. This resolution raises awareness for DIPG and pediatric brain cancer, the most prevalent and deadliest form of childhood cancer, and the need for greater federal funding support for research into cures for children with cancer.
Originally designed for families caring for an aging senior, it is backed by the AARP and the Home Care Association of America, BUT this legislation will work for those that are caregivers for children disabled by cancer. Please support this bill that allows an eligible caregiver a tax credit of up to $5,000 for 30% of the cost of long-term care expenses that exceed $2,000 in a taxable year. The bill defines eligible caregiver as an individual who has earned income for the taxable year in excess of $7,500 and pays or incurs expenses for providing care to a spouse or other dependent relative with long-term care needs. Family caregivers incur significant expenses while supporting their loved ones -$7000 per year on average. This bill will provide these caregivers, with financial relief to help offset some of the expenses they incur.
“The Cancer Patient Equity Act, introduced by Congressment G.K. Butterfield and Gus Bilirakis, will give patients access to cutting-edge, next-generation molecular diagnostic tests that can help identify an individual’s specific type of cancer and can inform treatment protocols. Determining whether a patient’s cancer is rare or whether it has traits that make it more or less responsive to available treatments can be a game-changer for patients. Too often patients do not have access to these tests unless their cancer reoccurs, at which point it may be too late. This bill will help ensure that patients and their physicians are empowered with actionable information from the beginning of their treatment. Medicare and Medicaid already reimburse molecular diagnostics for recurrent and metastatic cancers, and this Act extends that coverage to all new cancer patients at the time of diagnosis.
Senator Joni Ernst R-IA, on April 22, 2021 S. 1357 introduced a bill The PACT Act of 2021 to amend the Public Health Service Act to authorize the Director of the National Institutes of Health to make awards to outstanding scientists, including physician-scientists, to support researchers focusing on pediatric research, including basic, clinical, translational, or pediatric pharmacological research, and for other purposes. Congressman John Joyce, Representative for Pennsylvania’s 13th congressional district, sponsored HR 3773, PACT Act of 2021, a matching bill in the House or Representatives onJun 8, 2021.
Each year, the Department of Defense appropriates funding for research for specifically for Cancers in Children, Adolescents and Young Adults within the DOD Congressionally Directed Medical Research Program. Each year 85,000 children, adolescents and young adults are diagnosed with cancer which is the #1 disease killer of this population. 86% of U.S. ACTIVE military are 39 years or younger. The funding is to be used to research for rare, unmet medical needs that affect military personnel and their families. A summary of funding is provided for years 2017 through 2020.
Congress has a 66 member Congressioanal Caucus to address Childhood Cancer Issues. The mission is: The bipartisan Childhood Cancer Caucus is to serve as a clearinghouse for information on pediatric cancer and a forum to aid Members of Congress in working together to address pediatric cancer. The Caucus will strive to raise awareness about pediatric cancer, advocate in support of measures to prevent the pain, suffering and long-term effects of childhood cancers, and work toward the goal of eliminating cancer as a threat to all children. If your member of Congress is not a member, please ask them to join. The more members we have improves our voice in Congress: CLICK HERE
The Creating Hope Act Passed!
The House and Senate passed a four year reauthorization and this bill on 12/22/20. Thanks to the hard work and relentless effort of childhood cancer and rare pediatric dieases advocates all across America. Thank You! This Act has produced 30 drugs for pediatrics diseases and four of the six cancer drugs we have today that were developed for children only. We need to make this ACT permanent. It is the best tool we have to encourage developers to produce better, non-toxic, cancer drugs for children. Whenever you see or speak to a legislator, it’s a good idea to let them know how much you appreciate their support on this in the past, but we need to make this valuable tool permanent.