Legislative Initiatives
CCCA's Priority Policy Issues:
Drug Development: CCCA will be monitoring the FDA's implementation of the FDA Safety and Innovation Act (FDASIA), which passed in July 2012 and included permanent reauthorization for the Best Pharmaceuticals for Children Act (BPCA) and Pediatric Research Equity Act (PREA). Among CCCA's advocacy efforts, we will be working with the FDA on the legislatively-mandated public meeting on drug development for pediatric rare diseases that must take place by January 2014 and advocating for one day of this meeting to be devoted to childhood cancer issues.
Survivorship: CCCA will be working in the 113th Congress to develop an omnibus bill on childhood cancer research, treatment and survivorship care that includes current scientific and medical recommendations. Survivorship has been a key focus of CCCA's advocacy efforts since our founding, led by the expertise of CCCA's president Susan Weiner, PhD.
Health Care Reform: Since the passage of the Affordable Care Act (ACA) in March 2010, CCCA has monitored the law's implementation and advised policymakers about its impact on children with cancer. During this Congress, CCCA will be involved with two key aspects of the law's continued implementation:
- Health Insurance Exchanges: Monitoring the creation of state and federal insurance marketplaces to ensure that children with cancer have access to the care they need;
- Essential Health Benefits (EHB): Working to ensure that the unique needs of children with cancer are addressed in the defining of EHB.
Federal Funding for Childhood Cancer Research: Faced with the reality of a deficit crisis and sequestration, CCCA will work closely with Congress to minimize the damage of cuts in federal spending to the pediatric oncology research and treatment systems responsible for the treatment and care of the over 350,000 childhood cancer patients and survivors in the United States.
CCCA's Priority Policy Issues: including an overview of the problem, a summary of proposed legislation and CCCA's advocacy role