NORD lauds debt ceiling deal but says it limits rare disease research

Deal protects access to Medicaid coverage for low-income patients in the US

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The National Organization for Rare Disorders (NORD) is applauding the recent deal to raise the debt ceiling in the U.S., which would protect access to insurance for people with rare diseases like Lambert-Eaton myasthenic syndrome (LEMS).

However, NORD has raised concerns that the debt ceiling bill (HR 3746) — which was recently passed in the Senate and signed by President Joe Biden into law on June 3 — might limit the amount of funding that’s available for rare disease research.

“The Debt Ceiling Deal protects vital access to Medicaid coverage, ensuring individuals and families with rare diseases continue to have the comprehensive health care they need to survive and thrive; but it threatens the future of lifesaving biomedical research,” Peter L. Saltonstall, president and CEO of NORD, said in a statement.

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Medicaid is a government-funded program that provides health insurance to low-income people in the U.S. and many of the more than 25 million Americans living with a rare disease, such as LEMS, “rely on Medicaid for primary or supplemental health coverage,” Saltonstall said.

NORD likes that the new debt ceiling deal does not include so-called work requirements that would prohibit people from accessing insurance through Medicaid unless they meet certain employment criteria.

“Work requirements have proven to be both ineffective and inconsistent with the Medicaid program’s purpose, while jeopardizing healthcare coverage for millions of Americans,” Saltonstall said, adding that NORD is “grateful Congress protected the integrity of this vital program and applaud the federal commitment shown to patients and families impacted by rare disease.”

However, the advocacy organization also expressed concern that the deal limits funding of future rare disease research — specifically, so-called “other health spending” is frozen at its current level for the coming fiscal year, with room for a 1% increase the following year.

As most of the more than 7,000 rare diseases remain without an approved treatment in the U.S., these health funding limits may have a considerable impact on the lives of many rare disease patients.

“Federal funding is critical to sustain rare disease research and vital for bringing more safe and effective therapies to the millions of Americans who urgently need them, including many children and adolescents who will not be able to live full and healthy lives without this research,” Saltonstall said.

“We urge Congress to continue to prioritize rare disease patients and families, and to not jeopardize research into lifesaving therapies through funding cuts,” he added.