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NCI Funding: Childhood cancer advocates were encouraged – and somewhat surprised – when President Trump announced a childhood cancer research initiative in his 2019 State of the Union address, proposed at some $500 million over ten years – or $50 million a year.

But the promise of that extra funding and any new initiatives was thrown into doubt 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.

It’s imperative that our community stand shoulder-to-shoulder with other cancer groups to ensure that total NCI funding is increased.  A rising tide lifts all boats.  At the same time, our community needs to stress the urgent need that the promise of the STAR Act be fulfilled and that the President’s promise of childhood cancer is met – so that no child is left behind.

The CLINICAL TREATMENT Act (now H.R. 913) has been reintroduced by Rep. Ben Ray Lujan (NM-3) and Rep. Gus Bilirakis (FL-12). This bill would federally require Medicaid to cover routine costs associated with enrollment in approved clinical trials for those with life threatening conditions.

At least one-third of childhood cancer patients depend on Medicaid coverage for their care. Most children are treated in the context of clinical trials, and their routine care is covered by insurance while the research costs of a trial are covered by a sponsor (most often the National Cancer Institute).  Families would suffer exorbitant expenses for care if Medicaid did not cover routine medical care as children are treated. 

To protect families and children’s care, Children’s Cause supports the Clinical Treatment Act, which would require states’ Medicaid plans to cover these costs.

The ACE Kids Act would improve care for approximately two million children with medical complexities in the Medicaid program. The bill would provide more consistency for children with medical complexity as they often need to travel across state lines for care, which currently results in coverage issues since Medicaid coverage may differ from state to state. We are honored to join the nation’s leading children’s hospitals, along with the Children’s Hospital Association, in supporting this legislation.

The ACE Kids Act works to create a patient-centered, pediatric-focused delivery system for this unique population of children; it is an important step in fixing the current fragmented system for children with complex medical conditions, ensuring ready access to care, and reducing the burden on their families.

DIPG Awareness Resolution: H.Res.114 designates May 17 as National DIPG Awareness Day, to raise the profile of this devastatingly terminal childhood brain tumor.

Nothing has changed for DIPG in the last 40 years in standard treatment nor in its terminal prognosis. DIPG is responsible for most of the pediatric brain tumor deaths each year, the leading cause of death in kids with cancer.