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.
HR 820: The Childhood Cancer Survivorship, Treatment, Access, and Research Act (STAR) of 2015 – The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (formerly HR331) 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.
While the STAR Act passed the House of Representatives on December 6, 2016 and went to the Senate, the Star Act is now officially reintroduced for 2107. While it was disappointing that last year it passed the House but did not pass the Senate in time to voted on, it has been reintroduced as HR. 820 and S 292. Actually our efforts last year gained a lot of new support and we expect passage should come in the first quarter of 2017. What should you do now? Contact your Representatives and Senators and ask them to cosponsor the STAR Act, HR 820 (House of Representatives) and S 292 (Senate). We have made it easy to contact them. Just click HERE.
Research to Accelerate Cures and Equity (RACE for Children Act) Has been 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.
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.