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 co-insurance, medical foods access, newborn screening, and Medicaid eligibility.
In this third 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. In terms of the expansion, the 2018 report has grown to cover several emerging issues, such as the enactment of work requirements within Medicaid programs and state adoption of “Right-to-Try” laws.
Below lists key policies that are important to the rare disease community. NORD recognizes that while the issues represented in the report are critical, there may be other important topics that may not be covered. In future iterations of this report, we plan to incorporate policies concerning genetic testing and medical child abuse. These issues were not included in this release partly because NORD’s policy position on these matters is not yet fully developed (we want to make sure we get it right before recommending to states how to act).