NORD grades all 50 states on rare disease policy issues

By The Science Advisory Board staff writers

February 23, 2022 -- The National Organization for Rare Disorders (NORD) published the latest edition of its annual State Report Card, which rates all 50 states and Washington, D.C., on the most important issues affecting the more than 25 million Americans living with a rare disease.

The State Report Card was compiled using data through November 2021 and provides detailed analysis in grading each state on its performance on nine major policies of importance to the rare disease community such as newborn screening, Medicaid eligibility, and prescription drug out-of-pocket cost protections.

Key takeaways from the new report include, only six states received an A grade on protecting patients from increasingly high prescription drug out-of-pocket costs. Despite the critical importance of telehealth during the COVID-19 pandemic, 18 states received a failing grade when it comes to removing barriers for patient access to out-of-state providers via telehealth. Short-term limited-duration insurance continues to be unregulated in many states, as only 11 states received an A grade for their oversight and regulation of these plans, which fail to offer the comprehensive health care coverage vital to rare disease patients.

A total of 21 states have signed legislation into law creating a Rare Disease Advisory Council, including six in 2021 alone. These councils give rare disease patients a unified voice in state government and act as an advisory body to government leaders.

NORD is the leading independent advocacy organization representing all patients and families affected by rare diseases in the U.S.

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