Your Role in Childhood Cancer Research Funding


As advocates in the childhood cancer community know all too well, funding for research is largely dependent on federal funding from the National Cancer Institute (NCI), which supports academic researchers and much of the clinical trials infrastructure that treats and cares for our kids. 
The amount that NCI is able to devote to those programs – and other cancer programs -  is, in turn, dependent on what Congress determines in its annual appropriations process. And much of that is determined by how hard advocates - like you – push their members of Congress to make it a priority.

In the past few years Congress has provided the NCI with some healthy increases: $293 million in FY 2018, and $179 million in FY 2019, along with some supplemental money from 21st Century Cures and the Cancer Moonshot Initiative. 
With the passage of the milestone Childhood Cancer STAR Act last year, NCI could be provided with an additional $30 million annually — though that is dependent on annual funding.  With those dollars made available this year, NCI has already issued a grant solicitation on survivorship and - more recently - begun a coordination effort on biorepositories. The community was heartened to hear the President propose an additional $50 million annually, and the NCI leadership has indicated any money provided for that purpose would be used to more comprehensively collect patient data for research.  

The operative question is whether childhood cancer funding would receive that funding in addition to the STAR Act funding, or whether it - or other programs - might be cut to accommodate it.  Advocates across the community have been seeking those assurances and much will depend on how vocal we are.

For fiscal year 2020, which begins on October 1, the process began with a dismal request from the President, suggesting a 17% cut at the National Institutes of Health (NIH), which would translate to a $897 million cut for the NCI. Of course: that’s not likely to happen. This was a starting point. And support for medical research is one area in which there is broad bipartisan agreement. The Alliance for Childhood Cancer and the rest of the cancer community is calling for at least a $378 million increase to NCI, for a total budget of $6.522 billion. 
Beyond the NCI’s research agenda, progress in childhood cancer treatment is also dependent on the Food & Drug Administration (FDA) and its ability to review and approve new drugs. With the passage of the RACE Act last year, FDA now has the authority to require companies who are seeking approval for adult treatments to conduct clinical trials in children if the molecular method of action is similar. With disease increasingly defined by genetic markers, this is potentially groundbreaking for childhood cancer.

In FY 19, Congress committed more than $1.6 billion to support drugs, devices, biologics and other medical product elements of the FDA’s mission. This year, the patient community is asking for an additional $316 million to support the scientific capabilities of the agency.  

As of this writing, the FY 2020 funding discussions are weaving through some arcane budget mechanics involving budget caps, the debt ceiling and priority setting. The good news is that the House Appropriations Committee has approved a $2 billion increase for NIH, including a $300 million increase for NCI and $50 million for childhood cancer research.  The Senate, however, has not acted and probably won’t until later this summer.  The final number will be determined when they negotiate a compromise.

This is where you come in.  Members of Congress are now home for the Memorial Day recess. They will be at community events and holding meetings with constituents. This is your opportunity to tell your story and urge them to put childhood cancer research at the top of their agenda. Check their web site for events and availability and use our tools to prepare and make your pitch:

After your meeting, please take a moment to share with us here how it went. This information will remain confidential within Children's Cause staff and serves to help us improve our advocacy and refine our own work with these offices.

If you can’t meet with them, send a message using the action alert form provided here to urge them to support research funding.
If we all stick together and make our voices heard we’ll increase research, improve treatments, save lives and improve the outcomes for survivors.