This tab is devoted to current and proposed legislative initiatives that will have an impact on the childhood cancer community. 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. 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. You are their voice. Speak loudly. Speak often.
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..
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!
After the House passed the bill on September 30, 2020, it was critical that the Senate reauthorize it by December 20, 2020. If the program did not get reauthorized, drug development for rare pediatric disease and childhood cancer would have been severely and permanently deminished. Without the non-taxpayer funded incentives provided in this bill, drug developers would no longer be inspired to produce new, non-toxic drugs so that children with serious illnesses can have hope for new therapies, better health and even possibly cures.
CLINICAL TREATMENT Act HR 913 Passed on 12/21/2020
The CLINICAL TREATMENT Act HR 913 amends title XIX of the Social Security Act to promote access to life-saving therapies for Medicaid enrollees by ensuring coverage of routine patient costs for items and services furnished in connection with participation in qualifying clinical trials, and for other purposes. Read Text
GOOD NEWS: Look at what the childhood cancer community has been able to get done! The Childhood Cancer STAR Act has been fully funded! The DoD CDMRP for children, adolescents, and young adults cancers was also budgeted for 2021! The Creating Hope Act was approved for 4 more years. Title XIX of the Social Security Act was ammended to promote access to life-saving therapies for Medicaid enrollees by ensuring coverage of routine patient costs for items and services furnished in connection with participation in qualifying clinical trials, and for other purposes. The student loan payments deferment while receiving cancer treatment bill IS now a law! THANK YOU! You and your calls, emails, letters, and tweets made this happen! We are stronger when we collaborate and we are mighty when we speak with one voice! THANK YOU! 1/27/2021