In 2015, the launch of NORD’s inaugural State Policy Report altered the landscape for rare disease advocates by empowering them to analyze and advocate for health care policy decisions determined at the state level that impact their daily lives. The 2015 report called attention to the lack of policies to ensure access to care for rare disease patients in many states. The policies we focused on in the report were: prescription drug out-of-pocket protections, access to medical nutrition, newborn screening, and Medicaid eligibility.
In the latest edition of NORD’s State Policy Report Card we are seeking to expand our analysis to more issues that affect the rare disease community while also providing a more targeted analysis of policies analyzed in previous editions of the report. For example, the latest report has grown to cover several emerging issues, such as the enactment of work requirements within Medicaid programs.
Below are some key policies that are important to the rare disease community.
CLICK HERE to download the full report.