RARE Daily

NORD Annual State Report Card Show Progress, but Areas of Concern

March 7, 2024

Rare Daily Staff

The National Organization for Rare Disorders released its annual State Report Card as it noted improvements, but also warned of disparities across state lines.

“Many states made tangible progress to help people living with rare diseases and their families in 2023. However, states can and should be doing more,” said Heidi Ross, vice president of policy and regulatory affairs at the National Organization for Rare Disorders. “It is unacceptable for such disparities to persist across state lines.”

The report, which has been issued annually since 2015, examined states’ performance on nine areas of state policies that can benefit or jeopardize health care coverage, access, and affordability for rare disease patients.

The report gave half of U.S. states failing grades on state-regulated insurance due to permitting broad access to inadequate short-term, limited-duration health plans to patients. It said these plans offer inadequate coverage, typically fail to provide essential health benefits required by the Affordable Care Act and can deny coverage based on pre-existing conditions.

Idaho, Nevada, and Pennsylvania earned failing grades for providing no out-of-pocket prescription drug costs. Some 22 states received C grades indicating they only have one patient out-of-pocket prescription drug cost protection policy in place. These protections are important for people living with rare diseases because they can help enable access to new, innovative treatments.

A total of 10 states have still not expanded Medicaid eligibility for adults. However, Georgia and North Carolina expanded patient access to their state Medicaid programs last year, enabling more adults living with rare diseases to access necessary doctors and treatments.

The report noted that Delaware, Indiana, and Maryland in 2023 created a Rare Disease Advisory Council, a means that has become a conduit for addressing state-level policies that can address barriers and improve care for people with rare diseases. A total of 27 states have established Rare Disease Advisory Councils, although these are concentrated on the east coast.

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