KIDS V CANCER promotes pediatric cancer research by identifying structural impediments at key junctures in the research process – new drugs, tissue donation and access to funding – and developing strategies to address them. Since Nancy Goodman formed Kids v Cancer in 2009:
CREATING HOPE ACT
We authored and championed the Creating Hope Act, which was passed into law in 2012 as part of the 2012 FDA Safety and Innovation Act, 21 U.S.C. 360ff. The Creating Hope Act provides a market-based incentive to spur pediatric cancer drug development in the form of pediatric priority review vouchers.
Under the Creating Hope Act, several vouchers have been awarded, including Unituxin for neuroblastoma. In 2015, a voucher sold for $350 million. Since 2012, about $1 billion in vouchers have been sold.
The Creating Hope Act was reauthorized in 2015 and will sunset in September, 2016. We are working on a new reauthorization.
RESEARCH TO ACCELERATE CURES AND EQUITY FOR CHILDREN ACT (RACE FOR CHILDREN)
Pediatric cancer researchers have a difficult time getting access to promising cancer drugs before approval, because companies are reluctant to begin pediatric trials, and after approval because the pediatric cancer researchers can’t afford the premium prices of cancer drugs.
We authored the RACE for Children Act to update the Pediatric Research Equity Act (PREA) to help kids with cancer get access to the most promising therapies available.
COMPASSIONATE USE NAVIGATOR
We assist physicians and families of children with cancer applying for compassionate use access to unapproved drugs.
AUTOPSY TISSUE DONATION PROGRAM
We have an autopsy tissue donation program to facilitate post mortem pediatric CNS tumor tissue to science.
Kids v Cancer successfully requested that September be declared as National Childhood Cancer Awareness Month for each year starting 2010.
Kids v Cancer is working with Imagine for Margo and a team of European regulators, industry, scientists and advocates to propose incentives for pediatric cancer drug development under European Union law.