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.
When they are in their district office is a great time for you to make an impact on your legislators by putting a face on childhood cancer and showing how all children, adolescents and young adults can benefit from current and proposed legislative initiatives.
The new Gabriella Miller Kids First Research Act 2.0 would redirect penalties levied against pharmaceutical, cosmetic, supplement, and medical device companies by the U.S. Securities and Exchange Commission (SEC) for violating the Foreign Corrupt Practice Act (FCPA) towards the Kids First Pediatric Research Program (Kids First) at the National Institutes of Health (NIH). There have been consistent and large civil sanctions leveraged against pharmaceutical companies since 2013 – hundreds of millions from six violations. With this legislation, the penalties redirected to childhood cancer research will be substantial and will have a huge impact.
Senator Joni Ernst R-IA, on April 22, 2021 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. She was joined by Senators Bob Casey D-PA, Michael Bennet D-CO, Chris Coons D-DE, Cindy Hyde-Smith R-MS and Roger Wicker R-MS.
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.
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 bills 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.