NORD Issues Annual State Report Cards on Rare Policy Issues

The National Organization for Rare Disorders published its annual State Report Card, which rates all 50 states and Washington, DC on nine policy issues relating to rare diseases including newborn screening, Medicaid eligibility, and prescription drug out-of-pocket cost protections.

Photo: Heidi Ross, acting vice president of policy and regulatory affairs for NORD.

“When NORD launched the State Report Card project in 2015, our goal was to create an easy-to-use resource to evaluate how effectively states were serving individuals and families living with rare diseases, provide insight into the advances being made across the country, and identify where we still need to work together and focus our attention,” said Heidi Ross, acting vice president of policy and regulatory affairs for NORD.

The report found only six states received an A grade on protecting patients from increasingly high prescription drug out-of-pocket costs. Out-of-pocket costs include their expenses for medical care that are not reimbursed by their insurance.

Telehealth, which allows patients to receive medical care without being in the same room as a doctor, grew in popularity during the pandemic. Prior to the pandemic, nearly 40 percent of patients in a NORD survey reported traveling more than 60 miles for their medical care. The report found that even with that greater emphasis on delivering care this way, 18 states received a failing grade for patient access to out of state providers via telehealth.

The report also found that a total of 21 states have enacted legislation to create a Rare Disease Advisory Council. Six of those states did so in 2021. These councils give rare disease patients a unified voice in state government and act as an advisory body to government leaders.