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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 Palliative Care & Hospice Education and Training Act (H.R.647) would expand access to palliative care and improve the quality of life for millions of Americans, including children suffering from cancer.

Palliative care is team-based care that helps children with cancer live as comfortably as possible by managing the harsh side effects of their cancer or treatment.

The VACCINES Act of 2019 (H.R.2862) is a critical step in combating vaccine hesitancy and misinformation and ensuring that there is continued public awareness of the importance of vaccinations.

A family battling pediatric cancer faces many unavoidable health challenges, but they should never have the life of their child threatened by a disease that could have been prevented if only their peers had been appropriately vaccinated.

Henrietta Lacks Enhancing Cancer Research Act of 2019 (S. 946/H.R. 1966) is intended to help clinicians and policymakers better understand the reasons for unequal access to cancer trials by minorities, low income people, and those who live in rural areas, via a comprehensive GAO review.

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.

Charitable Giving Tax Deduction Act: H.R.651 would allow charitable deductions to be universal and "above-the-line," giving everyone the authority to deduct charitable donations from their taxes whether or not they itemize.

The 2017 tax law - while retaining the charitable deduction - made structural changes to the tax code that eliminate the incentive to give for about 21 million taxpayers. These changes included increasing the standard deduction and repealing personal exemptions. There is strong consensus from charitable research experts like Independent Sector that this will decrease giving by billions of dollars per year.