Policy & Legislation

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Legislative Initiatives

CCCA continues to fight for better policies for children with cancer in the 113th Congress. The Children’s Cause is working with the TOVIA-trained advocates and our coalition partners on the following policy priorities:

 Research Expansion

The Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act is bipartisan legislation that would expand the research of childhood cancers, improve efforts to identify and track childhood cancer incidences, and identify opportunities to expand the development of drugs necessary to treat the 13,500 children diagnosed with cancer in the U.S. every year. 

The Children’s Cause, working with Congress since late 2012, helped sponsors and colleagues understand the importance of reauthorizing the Caroline Pryce Walker law. The bill was endorsed by 19 organizational members of the Alliance for Childhood Cancer and the 150 childhood cancer advocates discussed this bill with their senators and representatives during the 2013 Childhood Cancer Action Days.

The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 passed unanimously in the House and Senate and was signed into law by President Bush five years ago. This reauthorization would build upon, expand, and improve the law's efforts for childhood cancer and continue the federal government's commitment to improving the future for children with cancer.

  • Take action on the House reauthorization, H.R.2607, introduced by Representatives Chris Van Hollen (D-MD) and Michael McCaul (R-TX).
  • Take action on the Senate reauthorization, S.1251, introduced by Sens. Jack Reed (D-RI) and Deb Fischer (R-NE).
  • Blog, September 2013: Legislative Update

 Survivorship

CCCA continues to advocate for the Childhood Cancer Survivors’ Quality of Life Act(H.R.2058), introduced by Rep. Jackie Speier (D-CA) and the co-chairs of the Congressional Childhood Cancer Caucus, Rep. Michael McCaul (R-TX) and Chris Van Hollen (D-MD).  

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. This legislation would improve childhood cancer survivors’ care, research, and treatment. Specifically, it would create pilot programs to evaluate model systems of care for survivors; support research to identify and track late effects of childhood cancer treatments; establish long-term survivorship clinics; and emphasize the psychosocial needs of survivors. 


 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.

As open enrollment begins through the new healthcare exchanges, we are committed to ensuring access to high quality care for childhood cancer patients, survivors and families. In the coming months, there will likely be kinks to work out and gaps may remain in the system. To help us advocate for improved policies, benefits and coverage options, we need to hear your story about how the new system is impacting your family.


 Federal Funding for Childhood Cancer Research

Faced with a deficit crisis, sequestration, and a government shutdown, CCCA is working 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 360,000 childhood cancer patients and survivors in the United States.


 Drug Development

CCCA is 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 will take place in January 2014.


 

Below is information about some of our work during the 112th Congress, from 2011-2012.

 Drug Shortages 

 Survivorship

 Drug Development

 Health Care Implementation