Patient access to care and services improved across key policy areas in 2022, but challenges remain for the rare disease community
February 7, 2023, Washington, D.C. – The National Organization for Rare Disorders (NORD®) today published the latest edition of its annual State Report Card, which for the past eight years has rated all 50 states and the District of Columbia on important issues affecting the more than 25 million Americans living with a rare disease.
This year’s State Report Card was compiled using data through November 2022 and provides a detailed analysis of each state’s performance on nine major policy areas of importance to the rare disease community such as newborn screening, Medicaid eligibility, and prescription drug out-of-pocket cost protections.
“NORD’s State Report Card is an important tool for highlighting progress and identifying remaining barriers for rare disease patients from coast to coast,” said Heidi Ross, NORD’s Vice President of Policy and Regulatory Affairs. “This easy-to-use resource shows how effectively states are serving individuals and families living with rare diseases, highlights advances being made across the country, and identifies where we still need to work together and focus our attention.”
Key takeaways from the new report include:
- Despite the continued importance of telehealth for rare disease patients and important gains in access during the COVID-19 pandemic, 14 states received a failing grade because they have not joined the Interstate Medical Licensure Compact, which can improve telehealth access to out-of-state physicians.
- In 2022, four states passed step therapy laws, which will allow more rare disease patients to gain timely access to the prescription medication recommended by their health care provider. In addition, several states passed prescription drug related copay legislation, leading to reduced out-of-pocket costs for patients.
- Twelve states expanded Medicaid eligibility, giving more children and low-income rare disease patients access to necessary medical care.
- A total of 24 states have now signed legislation into law creating a Rare Disease Advisory Council, including four states in 2022 alone. These councils give rare disease patients a unified voice in state government and act as an advisory body to government leaders.
“This year’s report showcases some important improvements,” Ross said. “But it also shows just how far we still need to go to create policies that ensure people with rare diseases can thrive.”
You can view and download the full state-by-state report cards — including maps, patient stories, and resources — by visiting: https://bit.ly/State-Report-Cards.
To learn more about NORD’s policy work, visit: https://bit.ly/Policy-Issues.
About the National Organization for Rare Disorders (NORD)
With a 40-year history of advancing care, treatments and policy, the National Organization for Rare Disorders (NORD) is the leading and longest-standing patient advocacy group for the more than 25 million Americans living with a rare disease. NORD, a 501(c)(3) nonprofit, is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 330 patient organization members, is committed to improving the health and well-being of people with rare diseases by driving advances in care, research and policy. For more information, please visit https://rarediseases.org/.
