NORD Cheers New US ‘Inflation Reduction Act’ for Healthcare

Legislation will help ensure care for rare disease patients, nonprofit says

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by Mary Chapman |

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NORD cheers healthcare legislation | AADC News | illustration of US capitol

The Inflation Reduction Act of 2022 (HR 5376) will help individuals with rare diseases — such as aromatic l-amino acid decarboxylase (AADC) deficiency — to continue to receive safe and effective care, the National Organization for Rare Disorders (NORD) said in a statement lauding the new U.S. healthcare legislation.

According to NORD, a U.S.-based nonprofit that advocates for people with rare diseases, the new law will support those who struggle to pay for medications.

President Joe Biden signed the sweeping healthcare, tax, and climate legislation into law Aug. 16th. NORD is an independent umbrella advocacy organization that represents U.S. patients and families who are affected by rare diseases. It has more than 330 disease-specific member organizations.

“The Inflation Reduction Act is a significant step forward in helping ensure that individuals and families with rare diseases have access to the comprehensive healthcare they need to survive and thrive,” Peter L. Saltonstall, NORD’s president and CEO, said in a press release following the legislation’s passage.

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“The extension of enhanced Advanced Premium Tax Credits for three years will keep quality health insurance accessible to millions of Americans, and the creation of an annual out-of-pocket cap on prescription drug costs for Medicare beneficiaries will provide a vital protection to patients who struggle to afford their medications,” Saltonstall said.

Capping healthcare costs

Under the law, the cost of prescription medicines will drop for some 5–7 million Medicare beneficiaries, due to a provision that permits the federal health insurance program to negotiate the cost of prescription medicines. For another 50 million Americans with Medicare Part D, pharmacy costs are now capped at $2,000 annually. That provision is expected to benefit about 1.4 million individuals each year, according to The White House.

“That means that if you’re on Medicare, you’ll never have to pay more than $2,000 a year no matter how many prescriptions you have, whether it’s for cancer or any other disease. No more than $2,000 a year. And you all know it because a lot of you come from families that need this,” Biden said in remarks at the legislation’s signing.

NORD also lauded what is not in the Act: modifications to the Orphan Drug Tax Credit (ODTC), which incentivizes life sciences companies to develop therapies for rare diseases. Of the approximately 7,000 known rare conditions, some 95% have no approved treatment.

“We advocated tirelessly on behalf of the over 25 million Americans with a rare disease to preserve this critical incentive when significant changes to the ODTC were considered by Congress last fall,” Saltonstall said in the NORD statement. “We are grateful the current 25% tax credit for clinical trial testing services remains unchanged and believe it is a critical tool to help foster robust rare disease drug development. We applaud the federal commitment shown to ensure access to safe and effective treatment for rare disease populations is maintained, and future research efforts for new therapies are incentivized by protecting the ODTC.”

The organization said that while the new law includes planks that are vital to rare-disease patients and families, it will work with legislators and the Biden Administration on implementation  “and on future efforts to improve the lives of people living with rare disorders.”