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Kids With Rare Disease Win in US Budget Deal

U.S. Congress ups Children’s Health Insurance Program funding extension to 10 years.

Image of Washington, D.C.

Originally published January 29, 2018

Updated February 19, 2018

Weeks after agreeing to a six-year extension of funding for the Children’s Health Insurance Program, the U.S. Congress tacked on four additional years to the plan, upping the total extension to a decade.

The program covers nearly nine million children and 375,000 pregnant women in the U.S. CHIP has drawn special attention from the rare disease community since half of the estimated 30 million people with a rare disease in the U.S. are children, according to Global Genes.

After last month’s six-year extension announcement, CSL Behring Senior Director of Healthcare Policy and External Affairs Patrick Collins called the deal “an important step in protecting children's access to health insurance.

“Without the program, millions of additional children would be uninsured, including children with rare and chronic conditions reliant on therapies developed and produced by CSL Behring,” he said.

Before last month’s six-year extension, the future of CHIP had been in limbo since October of last year, when funding officially expired. While the program was kept afloat through a temporary infusion of cash from Congress in December, many states had indicated that they were on the verge of having to freeze enrollment and possibly discontinue their programs in the coming weeks as reserve funding was running out. CHIP is largely a federally funded program with some financial participation by states, but it’s managed at the state level.

The deal brokered in Washington earlier this month keeps CHIP funded through 2027.