The National Organization for Rare Disorders (NORD) recently released their 6th State Report Card, which evaluates how effectively states are serving patients with rare diseases. Here are a few key takeaways.
Founded to advocate for the passage of the Orphan Drug Act of 1983, NORD works to ensure the voices of patients with rare diseases are “front and center” in federal and state policymaking.
“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,” says NORD.
Notably, there are now 16 states with Rare Disease Advisory Councils (RDACs), with Massachusetts, New York, Ohio, Tennessee, Utah, and West Virginia successfully enacting legislation in 2020.
However: “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.”
Regarding Medicaid, Oklahoma and Missouri moved to expand eligibility for state Medicaid programs in 2020. 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,” says NORD.
The 6th edition of NORD’s State Report Card, compiled using data current as of November 2020, is presented in a digital format providing improved accessibility to previous editions and additional resources.
Oshman’s Overture: We are excited to share the work NORD is doing on behalf of the more than 25 million Americans who live with a rare disease. BIO looks forward to working with NORD and other patient advocacy groups to ensure all patients’ voices are heard in the policymaking process, during the COVID-19 crisis and beyond. – Michele Oshman, BIO’s VP of External Affairs and Executive Director of the Council of State Bioscience Associations
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