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This page 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.

The Race for Children Act to Boost Pediatric Cancer Research 2016 -U.S. Senators Michael Bennet (D-CO) and Marco Rubio (R-FL), along with Representatives Michael T. McCaul (R-TX-10), G. K. Butterfield (D-NC-01), Sean Duffy (R-WI-07), and Chris Van Hollen (D-MD-08), today introduced the RACE for Children Act (the Research to Accelerate Cures and Equity for Children Act) to support the development of novel and promising cancer drugs for children.

HR 3381: The Childhood Cancer Survivorship, Treatment, Access, and Research Act (STAR) of 2015 – 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.

Advancing Hope Act replaces the expiring Creating Hope Act. Creating Hope was signed into law by President Obama in 2012 as part of the PDUFA reauthorization, it CreatingHope_edited-2expanded the cost-neutral Food and Drug Administration (FDA) priority review voucher (PRV) program, allowing pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare diseases. The bill helped to ease the process of drug development for rare diseases by incentivizing and fast-tracking much-needed pediatric drugs to market. However, the bill only provided three vouchers to be used to expedite treatments for rare diseases through the FDA approval process. The award of the third pediatric voucher for a neuroblastoma drug triggered a little-known sunset clause contained in the 2012 law which authorized the voucher program and will cause the Creating Hope Act to expire on March 17, 2016.

The Kids Innovative Drugs (KIDS) Initiative will reform PREA so that the law meets up with today’s advances in science. KIDS will close the loopholes and improve the drug development process for childhood cancer. In 2015, 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.

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The Purple Society website is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.

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