RARE Daily

NORD Issues State Report Cards on Policy Issues Critical to Rare Disease Patients

January 28, 2021

Rare Daily Staff

The National Organization for Rare Disorders and its Rare Action Network published its annual report card rating each state and Washington, DC on the most important issues directly affecting more than 25 million Americans living with rare diseases and showing progress in many states on newborn screening, step therapy, Rare Disease Advisory Councils, and other key policies.

The organization said states need to take additional steps to address out-of-pocket prescription drug costs for rare disease patients and to protect patient access to affordable, comprehensive health care services.

The report provides detailed analysis across eight major policies, grading each state on its performance in Medicaid financial eligibility, medical nutrition, newborn screening, prescription drug out-of-pocket costs, protecting patients in state Medicaid programs, protecting patients in state-regulated insurance, rare disease advisory councils, and step therapy.

“Our hope is that patients, advocates and policymakers find the new State Report Card site a useful tool in their work on policies to best meet the needs of rare patients and families,” said Peter Saltonstall, president and CEO of NORD.

The report found many states increased the number of heritable conditions for which they screen in 2020. It also saw an increase in rare disease advisory councils with Massachusetts, New York, Ohio, Tennessee, Utah, and West Virginia enacting Rare Disease Advisory Council legislation to elevate the rare disease community’s voice in state government. There are now 16 states that have Rare Disease Advisory Councils.

In 2020, Oklahoma and Missouri moved to expand eligibility for their state Medicaid programs. That brought the number of states (including Washington, D.C.) to 41 that have opted to extend access to Medicaid.

And the report noted that two states—New Jersey and Georgia—took steps to protect patients from rising out-of-pocket expenses. New Jersey capped the out-of-pocket costs for patients at $150 per month per drug. Georgia banned copay accumulator programs. Nevertheless, still more than half of states received a failing grade in this area.

Photo: Peter Saltonstall, president and CEO of NORD

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