National Brain Tumor Society Public Policy and Advocacy Update
Vol. 4, No. 9
- Childhood Cancer Awareness Month Activities
- Fiscal Year 2015 Congressional Budget Process
Childhood Cancer Awareness Month Activities
In mid-September, the National Brain Tumor Society was invited to attend a number of meetings and forums regarding pediatric cancer. This included a presentation by Dr. Francis Collins, Director of the National Institutes of Health (NIH), as part of the Childhood Cancer Caucus Summit, as well as a keynote address by Dr. Harold Varmus, Director of the National Cancer Institute (NCI), as part of a larger pediatric cancer advocacy meeting at the White House.
The meeting with Dr. Varmus and others marked the first time pediatric cancer advocates were invited to the White House by an administration. National Brain Tumor Society is appreciative of the acknowledgement by the NIH and NCI in the meeting that advances are desperately needed in the field of pediatric brain tumors, and more must be done. We were grateful for the opportunity to engage with leaders in medical research in the United States, and look forward to continuing to work with them to increase medical research discoveries and advance the development of effective treatments for pediatric brain tumor patients.
In addition to the Childhood Cancer Caucus Summit and the White House meeting, National Brain Tumor Society staff joined with other members of the pediatric cancer community for a Public Policy Roundtable to set goals for the field and determine the best public policy strategies to reach those goals. The discussion was very productive and, in the coming months, will continue as a vehicle to channel the passion of the pediatric cancer community into concrete action.
More than 4,000 children are diagnosed with a brain tumor each year and malignant brain tumors are the second most common form of childhood cancer. National Brain Tumor Society is working to overcome the key barriers to better treatments for children with pediatric brain cancer through our integrated initiative, Project Impact, and commit at least a third of our research dollars to pediatric brain tumor research efforts.
Fiscal Year 2015 Congressional Budget Process
On September 18, brain tumor advocates and staff from the National Brain Tumor Society joined hundreds of advocates in Washington, DC on behalf of more than 300 individual organizations and institutions as part of the Rally for Medical Research, organized by the American Association for Cancer Research.
We would like to quickly thank our Maryland and Virginia advocates who attended in person, as well as the brain tumor advocates across the country who joined virtually by sending a message to their members of Congress asking that they prioritize investment in the NIH in the Fiscal Year 2015 federal budget.
Although there is support in Congress for NIH and the NCI, the budget process is a cause for concern. This year, Congress continued the tradition of recent years by forgoing the full budget process in favor of a temporary spending bill, known as a continuing resolution, or CR. The CR will extend government spending from Fiscal Year 2014 until December of this year, when Congress will either pass a full budget or an additional CR.
Because some spending for new initiatives was included in the recently passed CR, there was an overall cut across the board of 0.0554%, therefore slightly decreasing the funding available for NIH and NCI.
Research funded by, or taking place at, NIH and NCI is critical to advancing treatments for brain tumor patients. Together, these institutes are the largest funders of brain tumor research in the country, and their grantees are working to discover new ways to slow the growth and destroy brain tumors. However, biomedical research is complicated and takes many years as well as consistent and reliable funding streams.
Temporary spending measures that fund the government a few months at a time, such as the CR, are detrimental to researchers who are now not able to plan ahead as they worry about the availability of funding for the life of their projects. Therefore, the National Brain Tumor Society will be joining with the patient advocacy community to ask Congress to pass a full budget for Fiscal Year 2015 so that NIH and NCI can continue supporting critical research with confidence. Stay tuned throughout the coming months for ways to take action and contact your Members of Congress.
As always, thank you for your support. Together, we are making a difference in the fight against brain tumors.
David F. Arons
Chief Public Policy and Advocacy Officer