Posts in Policy
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.

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Which Way for Childhood Cancer Funding?

Last month childhood cancer advocates were encouraged – and somewhat surprised – when President Trump announced a childhood cancer research initiative at the State of the Union address, proposed at some $500 million over ten years – or $50 million a year. 

The promise of that extra funding and any new initiatives was thrown into doubt this week with the release of the Administration’s budget proposal.  It recommended that the National Cancer Institute (NCI) be cut by 17% or $897 million; theoretically dwarfing any increase in childhood cancer funding. 

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ACA Ruling in Texas v US : What does it mean?

We have been closely watching and following the aftermath of the recent ruling by a federal district court judge (Texas v US) that declared the Affordable Care Act unconstitutional.

As a member of the Cancer Leadership Council, we signed on to a joint statement about this ruling and its potential impact on people with cancer and cancer survivors. But we want to emphasize this key point:  The Affordable Care Act remains in place pending appeal.

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Managing the Financial Stress of Childhood Cancer

Results were presented at this month’s ASCO Quality Care Symposium from a joint survey conducted last year by the Children's Cause and the Patient Advocate Foundation (PAF). The survey sought to identify financial challenges in access to care, such as insurance barriers, coverage limitations and denials, high copays and extraordinary out-of-pocket costs.

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Authorization to Appropriation: Next Steps for STAR Act

Earlier this month, President Donald Trump signed the Childhood Cancer STAR Act into law, authorizing $30 million annually from 2019-2023 for programs and research to combat childhood cancer through the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). 

Now, we work to get the STAR Act fully funded -- and all indications suggest this process is off to a good start! On Thursday, the Senate Appropriations Committee approved a fiscal year 2019 spending bill that includes funding for implementation of STAR.

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STAR Act Becomes Law: $30 million per year authorized to combat childhood cancer

President Donald Trump signed the Childhood Cancer STAR Act into law yesterday, June 5th, authorizing $30 million annually from 2019-2023 for programs and research to combat childhood cancer through the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). 

Now, we move on to the next step in the process:  securing full funding for the STAR Act. Please join us in thanking Congress for passing STAR and in requesting that the authorized funding be fully appropriated.

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