Our thanks to CCCA for TOVIA and providing this Guest Column......

The Children’s Cause for Cancer Advocacy convened heads of childhood cancer groups from across the county for an intensive two-day public policy training in October.  The workshop, Translating Our Voices Into Action (TOVIA), provided nonprofit leaders concerned with state and federal cancer policy with a foundation to help strengthen the cadre of advocates for children with cancer. 

TOVIA participants learned how general state and federal cancer and health care policies can have a direct impact on children with cancer, including health care reform, federal research funding, the Food and Drug Administration’s role in new drug development and drug shortages, childhood cancer survivorship, and others.  Leaders in federal policy, state legislative advocacy, and pediatric oncology spoke to the group about expanding and improving these laws and regulations for children with cancer.

TOVIA’s rigorous policy and advocacy analysis helped enhance the participants’ skills and expertise in order to be more effective advocates for children with cancer at the state and federal levels.  Attendees are better prepared to serve as educational resources to legislators and knowledgeable representatives for advisory boards and agency panels that provide input on government’s role in the care of children with cancer.  Participants’ advocacy work continues beyond the workshop itself, as attendees elected at the end of the conference to form ongoing “working groups” on federal research funding and state health reform issues that demand continued attention and advocacy from the childhood cancer community.  

The Children’s Cause thanks the St. Baldrick’s Foundation for their primary support for the TOVIA workshop. 

To follow up, the participants had a conference call with a leader in federal health care funding policy to discuss the “fiscal cliff” and its potential impacts on childhood cancer.  Following that discussion, advocates organized and sent a letter to Congress signed by more than 30 childhood cancer organizations encouraging Congress and the Administration to find a balanced approach to deficit reduction that does not harm childhood cancer funding.  The participants have also sent individual letters to Members of Congress and are contacting their local media outlets to talk about the potential harm to childhood cancer research and treatment if proposed NIH spending cuts are enacted.

The working group will have a discussion in the near future to discuss implementation of the Affordable Care Act to ensure public and private insurance plans adequately cover childhood cancer treatment and follow-up services.  Advocates have also expressed interest in continuing to work together on policies related to childhood cancer survivorship, drug shortages and new drug development.  The groups will continue to meet via conference call on a regular basis to strategize and collaborate on advocacy activities. 

The Children’s Cause has been proud to bring together this dedicated group of individuals to expand and intensify childhood cancer advocacy and to work together to improve the future for children with cancer; however, this impressive group represents only a subset of organizations concerned about childhood cancer.  We welcome other interested leaders to participate in these activities in order to build a stronger community of advocates for children with cancer.  We can all accomplish so much more together than any individual parent, advocate, or organization can accomplish alone.

Much advocacy remains to be done to ensure every child with cancer has the treatments and services he or she needs.  If your organization is interested in taking part in these efforts or being included in future advocacy opportunities, please contact Kristen Mizzi, Director of Public Policy at the Children’s Cause for Cancer Advocacy, at kmizzi@childrenscause.org.

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