For the last eight years, the National Organization for Rare Disorders (NORD) has developed a State Report Card; the goal of this project is to evaluate the effectiveness of states in managing rare diseases and serving community members living with a rare disease. The State Report Card examines a variety of issues, such as insurance and medical nutrition, within every state (and Washington, D.C.). In a news release from February 2023, NORD announced that its newest iteration of the Report Card was now available. Data included in this Report Card was collected as recently as November 2022 (but may have also been collected prior to that throughout the entirety of 2022).

NORD’s Rare Disease State Report Card

In particular, this year’s Report Card focuses on nine policy areas relating to rare disease: Medicaid financial eligibility, medical nutrition, newborn screening, rare disease advisory councils, protecting patients in state Medicaid programs, protecting patients in state-regulated insurance, telehealth, prescription drug out-of-pocket costs, and step therapy (fail first). Findings from this most recent Report Card include:

• 12 states improved healthcare accessibility for vulnerable populations by expanding Medicaid eligibility.
• 6 states had a failing grade in providing robust medical nutrition coverage for patients in need. Conditions requiring medical nutrition coverage include food protein-induced enterocolitis syndrome (FPIES), maple syrup urine disease, and short bowel syndrome.
• Telehealth has been beneficial for patients living with a rare disease, especially during the coronavirus pandemic, allowing them to receive care as needed from home. Unfortunately, 14 states had a failing grade. These states did not join the Interstate Medical Licensure Compact, preventing those with a rare disease from speaking to doctors from out-of-state. Since many individuals with a rare disease travel for specialist care, this could inhibit them from connecting with necessary care.
• Only one state (South Dakota) holds a C grade in newborn screening due to issues with funding and dried blood spot use. The remaining 49 states all have either B or A grades.
• Four states created Rare Disease Advisory Councils in 2022, bringing the total number to 24 across the country.
• New step therapy legislation in four states contributed to improved medication access.

If you would like to examine your state’s specific Report Card, you may visit NORD’s State Report Card website and click on the issue that is of greatest interest to you.

An Overview of NORD

As described on the Patient Worthy Partner Page, the National Organization for Rare Disorders (NORD) is a nonprofit organization dedicated to serving the rare disease community through education, research, and patient advocacy. Through targeting patient organizations, medical personnel, and researchers trying to develop new diagnostics and treatments, NORD supports all parts of this community to ultimately improve the lives of patients and families affected by rare diseases. After all, alone we are rare, but together we are strong®. Learn more about NORD.