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 Senator 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 Representative and speak up for the children. You are their voice. Speak loudly. Speak often.
Click on any bill’s name below to get more detailed information.
H.R. 820 and S. 292: The Childhood Cancer Survivorship, Treatment, Access, and Research Act (STAR) – The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, enhance the quality of life for childhood cancer survivors, and ensure publicly accessible expanded access policies that provide hope for patients who have run out of options.
The STAR Act has passed in the Senate and the House of Representatives. Today, June 5, 2018 It was signed into law. What should you do now?
Celebrate, celebrate, celebrate, and CELEBRATE!
“Thank You’s” are just as important as requests. Don’t forget to thank your Representative (https://www.house.gov), and Senators (https://www.senate.gov/ and the President (https://www.whitehouse.gov/contact/).
Check back in a few days and we will give suggestions on what you can do to make sure the bill funded as it was intended. It will not be easy, but we can do it.
Congress should incentivize the repurposing of potentially life-saving approved drugs for rare diseases and pediatric cancers. Similar incentives have been critical in the development of new medicines for underserved patient populations and could lead to hundreds of safe, effective and affordable rare disease treatments within the next five years.
The OPEN ACT would establish a six-month marketing exclusivity extension, providing an incentive to a sponsor to repurpose an already approved therapy for a rare disease. The sponsor company would need to demonstrate that the repurposed therapy is safe and effective in treating the rare disease and obtain a rare disease indication from FDA on the drug label. The OPEN ACT is modeled on the highly successful Best Pharmaceuticals for Children Act (2002) that has led to more than 500 labeling changes for pediatric populations.
H.R. 2976 Deferment for Active Cancer Treatment Act is a commonsense solution that provides adolescents and young adults with a small amount of financial relief while they take time off from work or school typically without pay to receive cancer care, adding to the 11.2% national delinquency rate on student loans.
Once treatment is over, these young Americans can get back on their feet faster; returning to work or school with the expectation of being a contributing member of society. The Deferment for Active Cancer Treatment Act will enable individuals who are diagnosed with cancer to defer payments on public student loans while actively receiving treatment without interest accruing during the deferment period. This bill does not seek to change the terms of the public loan agreement between lender and borrower beyond placing a pause in repayments while cancer treatment is underway.
The Kids First Research Act 2.0 (H.R. 2008) would redirect approximately $300 million in existing, reserved and unused government funds from the Presidential Election Campaign Fund to the Gabriella Miller Kids First Pediatric Research Program. Under the direction of the National Institutes of Health, the funds would be used to develop a comprehensive shared-data resource for scientists researching hundreds of different pediatric cancers and structural birth defects and support the development of computational tools to analyze these large, complex genomic and clinical data sets.
Research to Accelerate Cures and Equity (RACE for Children Act) The RACE for Children Act passed the House of Representatives by a voice vote on 7/12/2017. It was made part of H.R. 2430 – the FDA Reauthorization Act of 2017. It now moves to the Senate for passage. Senator Marco Rubio will try to get it passed before this August recess.
RACE was reintroduced for 2017. It will reform PREA so that the law meets up with today’s advances in science. RACE for Children will close the loopholes and improve the drug development process for childhood cancer. In 2017, there is a revolution in cancer treatment with new, targeted therapies that are curing certain terminal cancer patients. Today, instead of targeting certain organs, cancer drugs are developed by molecular target, and these molecular targets are present in both adult and pediatric cancers, but kids with cancer are not the first patients to get these drugs. Under today’s system, they are the last to get the drugs. In the last 6 years, 77 drugs were developed for adult cancer and only two were developed childhood cancers.
Author: Joe Baber