Stories about: legislation

Why we’re glad the Cures Act passed: Its provisions benefit children

Cures Act children
Via @POTUS

Amy Judge DeLong is manager of Federal Government Relations at Boston Children’s Hospital.

In the midst of a seismic shift in Presidential administrations and anticipation of the incoming Congress, a landmark medical research bill with several provisions important to children cleared the lame duck session of Congress. The 21st Century Cures Act (Cures) is the end result of nearly three years of bipartisan Congressional activity. Last week, it was signed into law.

Cures includes scores of provisions aimed at strengthening National Institutes of Health funding for medical research and accelerating review efforts at the Food and Drug Administration. The law cleared Congress with overwhelming majorities, an example of bipartisanship that may be challenged in the months ahead.

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The 21st Century Cures Act: Addressing unmet needs in children with rare disease

21st Century Cures Act and children
Among its other provisions, the Cures Act would advance implementation of the 2013 National Pediatric Research Network Act, boosting therapeutic development for rare childhood diseases.

Medical solutions often require countless hours of investigation, months of testing and monitoring, years of post-trial and market analysis and billions of dollars of investment — with no certainty of success.

Last year, after years of groundwork, the U.S. House of Representatives passed the 21st Century Cures Act. A companion measure is being developed in the Senate, and stakeholders are optimistic that agreement on a package — even a slimmed down bill — could happen this year.

While Congress has addressed research and medical product regulatory needs before, the Cures Act has been unique in its comprehensive approach, looking at all elements of the research spectrum — from basic discovery science to translational research to regulatory review. It would upgrade the National Institutes of Health’s research capabilities and update the Food and Drug Administration’s approval policies to get new drugs and devices to the clinic sooner.

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Toward better care models for medically complex children

boy with cerebral palsyThe start of what promises to be a lengthy, multi-part endeavor has begun unfolding on Capitol Hill. It’s an attempt to reform the Medicaid program so that children with medical complexity (those with a single, serious medical condition, or multiple chronic conditions) can receive higher quality care with fewer emergency department visits and fewer hospital admissions.

When you think of medically complex children, think of children living with conditions such as spina bifida or cerebral palsy, children dependent on ventilators or feeding tubes, or children with genetic disorders. They represent just 6 percent of the 43 million children on Medicaid—yet they account for about 40 percent of Medicaid’s spending on children. Their care is often fragmented and poorly coordinated.

The reform effort, led by more than 60 participating pediatric hospitals and supported by the Children’s Hospital Association (CHA), focuses on Medicaid because it’s the single largest insurance provider for children. The backdrop is a cost-conscious Congress that’s the most politically polarized ever, passing the fewest bills ever.

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