Advances in childhood cancer are NOT enough!
Childhood Cancer Summit 2018:
As described below we have made many advances in childhood cancer. BUT it is not enough!
At the summit a teenager, with cancer, asked Dr. Ned Sharpless, The Director of The National Cancer Institute, the famous 4% question? She asked why the percentage of NCI dollars for pediatric cancer has not increased above 4%? He responded saying that the actual dollars allocated to pediatric cancer have increased in proportion to the increase in NCI dollars but had no answer to the 4% question other than to revisit it again next year.
OUR KIDS DESERVE MORE!
The STAR Act was signed into law in June 2018. The STAR act is the most comprehensive childhood cancer act ever enacted.Now, we need Congress to fund it. We are asking for $30 million per year for 5 years.During the caucus a huge round of applause was heard throughout the halls of the Capital as Rep. Michael McCaul announced that he had literally just received notice that The Senate approved funding of the STAR Act and that it was on its was to the House of Representatives.
The RACE for Children Act was signed into law in August 2017.
It requires companies developing targeted cancer drugs for adults to also develop those drugs for children with cancer.By August 2019 the FDA is required to publish guidance on the Race Act.By August 2020 the requirements of the RACE Act will be enforced.Although passage of the RACE Act will change the landscape for children with cancer it will not be enforced for 3 years after it was passed.
Gabriela Miller Kids First Act:
Gabriela was a girl who died of cancer in 2013. While she was ill she was an activist and raised support for research. In 2014, Congress appropriated $12.6 million for research for each of the first 4 years. The 4 years have passed. Advocates are asking Congress to fully fund the research act for each of the 10 years, as originally authorized and to ensure that the funds are dedicated specifically to pediatric cancer.
The Kids First Research Act 2.0The Act proposes to redirect approximately $320 million in existing, reserved and unused government funds from the Presidential Election Campaign to a research fund to be used to develop a comprehensive shared data resource to support the development of computational tools to analyze large complex genomic and clinical databases.No action has been taken since the Act was introduced in the House in April 2017.