To Top

Jan. 27, 2021

TOPIC: Press Releases, Featured News, Advocacy, State Report Card, Medicaid

NORD State Report Card Grades States on Policy Issues Critical to Rare Disease Patients

Posted by Valaree DonFrancesco

Washington, DC, January 27, 2021Today, the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™) published the 6th Edition of the State Report Card, the annual report rating each state and Washington, DC on the most important issues directly affecting more than 25 million Americans living with rare diseases. Despite a year marked by devastating impacts from the COVID-19 pandemic, the State Report Card demonstrates that progress was made in many states on newborn screening, step therapy, Rare Disease Advisory Councils and other key policies. The report also notes the need for states to take additional steps to address out-of-pocket prescription drug costs for rare disease patients and to protect patient access to affordable, comprehensive health care services. 

“The State Report Card provides insight into the advances being made at the state level in supporting Americans living with rare diseases, and identifies where we still need to focus attention,” said NORD President and CEO, Peter L. Saltonstall. “For almost 40 years, NORD has served as the voice of the rare disease community, and we are committed to fighting for rare disease patients and policy changes that will make a difference in their lives. Our hope is that patients, advocates and policymakers find the new State Report Card site useful tool in their work on policies to best meet the needs of rare patients and families. 

The 6th Edition of the State Report Cardcompiled using data current as of November 2020, is presented in a new digital formatproviding improved accessibility to the information contained in previous editions, as well as additional resources. The report provides detailed analysis across eight major policiesgrading each state on its performance in those areas. Takeaways from the new report include: 

  • Newborn screening: Many states increased the number of heritable conditions for which they screen in 2020. Across the country, more families were able to receive a diagnosis for their child as early as possible and grant other families peace of mind about their child’s health. NORD advocates for robust, well-funded newborn screening programs in every state. 


  •  Rare Disease Advisory Councils (RDACs): Massachusetts, New York, Ohio, Tennessee, Utah and West Virginia successfully enacted Rare Disease Advisory Council legislation to elevate the rare disease community’s voice in state government, bringing the total number of RDACs to 16. NORD launched Project RDAC in November 2020 with a goal of optimizing the existing 16 RDACs and helping more states to enact RDAC legislation. 


  •  MedicaidIn 2020, Oklahoma and Missouri moved to expand eligibility for their state Medicaid programsjoining 39 states (including Washington DC) that have opted to extend access to this vital safety net. However, several states also pursued harmful policies that could inhibit the ability of rare disease patients to access care, such as the elimination of retroactive eligibility or limits to prescription drug coverage. NORD supports the ability of eligible rare disease patients to receive Medicaid services without unnecessary and harmful barriers.   


  •  Step Therapy: Louisiana, North Carolina and South Dakota passed new patient protections for step therapy protocols in 2020, adding to the growing list of 31 states with comprehensive step therapy protections. NORD supports policies to reform step therapy and protect patients by requiring that protocols are based on clinical criteria, clear exceptions processes exist, and certain automatic exceptions are outlined and respected.  


  •  Out-of-Pockets Costs: Two states took action in 2020 to help protect patients from rising out-of-pocket costs. New Jersey successfully capped out-of-pocket costs for patients at $150 per month per drug and Georgia banned copay accumulator programs. Still, more than half of states received a failing grade in this crucial policy area. NORD recognizes the direct impact high drug costs have on patients and advocates for policies to lower patient out-of-pocket expenses and maximize access to needed therapies. 

For more information and to view the state-by-state report cards, maps, patient stories, resources and to download a full copy of the State Report Card, visit To learn more about NORD’s policy work, visit: