The Children’s Cause for Cancer Advocacy (CCCA) is the leading national advocacy organization working to achieve access to less toxic and more effective pediatric cancer therapies; to expand resources for research and specialized care; and to address the unique needs and challenges of childhood cancer survivors and their families. CCCA leads efforts to ensure that these needs and perspectives of children with cancer are integrated into the highest deliberations on health care and cancer policy at the Federal level.
The Children’s Cause for Cancer Advocacy (CCCA), founded in 1999 as The Children’s Cause, Inc., was established to take a leadership role in advocacy and training on national issues affecting childhood cancer.
Our mission is to accelerate availability and access to innovative therapies that are safer and more effective in the treatment, prevention and follow-up of childhood cancer. As families, survivors and consumers, we act as a catalyst to stimulate pediatric drug discovery and development and to help ensure care for survivors of childhood and adolescent cancer, a population expected to reach 500,000 by 2020.
We work closely with leaders in the National Cancer Institute, the Food and Drug Administration, Congress and the pharmaceutical industry to make a difference in the pace and efficiency of getting new treatments to children. We fill a strategic national gap, by advancing policy and system improvements with a sense of urgency from families and survivors that childhood cancer must be eradicated.
CCCA is dedicated to monitoring, advocating and disseminating information about vital national issues facing children with cancer and their families. CCCA is supported by corporate and foundation grants, and by caring friends and families. Our efforts focus on the day when childhood cancer will no longer be the leading disease killer of our children.
16+ Years of policy progress
• Collaborated with Congressional staff and other stakeholders to draft the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act, which was introduced in 2013. Fought for funding for the original Caroline Pryce Walker program during its initial authorization period.
• Developed strong principles of quality health care for children with cancer and advanced those principles during the Congressional debate on the Affordable Care Act. Children’s Cause principles included elimination of pre-existing conditions exclusions and lifetime caps and annual limits on coverage; prohibiting excessive waiting periods for care, especially for clinical trials; and increasing the age for dependent coverage.
• Advanced provisions in the 2012 FDA Safety and Innovation Act (FDASIA) to speed the development of treatments for children with cancer through incentives for companies, to reauthorize the pediatric subcommittee of the Oncologic Drugs Advisory Committee on a permanent basis, and to increase the focus on pediatric rare diseases, especially cancer.
• Championed a definition of essential health benefits that reflected the special needs of children with cancer and survivors, as part of the standard-setting process that occurred during Affordable Care Act implementation.
• Helped organize Childhood Action Days to take advantage of advocates traveling to Capitol Hill and those who could advocate in their own communities, a community event that now takes place annually.
• Convened five in-depth workshops on research and care for patients and survivors.
• Developed and disseminated a range of educational materials including an advocacy tool kit for survivors, a brochure for social workers, and web materials including a bulletin and blog.
• Launched an advocacy training program, composed of in-person workshops and monthly conference calls and/or webinars
"The complex challenges of developing new therapies for children with cancer, and emerging knowledge about the harmful effects of current therapies were the founding ideas behind the Children’s Cause for Cancer Advocacy. In 1999, families’ and survivors’ urgency and perspectives on the need for new treatments and the struggles of survivors seemed to be absent in national cancer policy debates.
We’ve come so far. Over the past decade and a half, we have seen the results of our work. We’ve labored nationally to give childhood cancer friends, families and survivors the knowledge and skills to become informed responsible advocates. We’ve helped create a vibrant, collaborative, action-ready national community. We’ve been a catalyst for national recognition of childhood cancer concerns as founding members of the Alliance for Childhood Cancer and the Coalition Against Cancer Advocacy.
Working with partners on Capitol Hill, in federal agencies and in other childhood cancer organizations, we’ve achieved legislative victories in pediatric drug development, survivorship support, and meaningful health care reform for survivors.
But we have much more work to do.
Childhood cancer remains the leading cause of death by disease for our nation’s children, and the health and well being of childhood cancer survivors remains too fragile. The Children’s Cause will continue to press for progress for national policies that can give our children access to the most effective therapies and can normalize their lives as they grow.
We hope you will join us as we work together to reach these goals for each child struggling with cancer."
- CCCA Founder Susan Weiner