Rare Disease State Report Card Identifies Opportunities for Policy Improvement

A report card published by the National Organization for Rare Disorders (NORD) issued grades to each state for 7 categories of rare disease policies. It indicates that progress in these areas has been slow, with many states offering inadequate policy solutions to reduce the burden of illness for these patients.

NORD, an advocacy group representing the 30 million Americans living with rare diseases, first issued a state-by-state policy report last year that “called attention to the lack of policies to ensure access to care for rare disease patients in many states.” The policies examined in that report were prescription drug co-insurance, medical foods access, newborn screening, and Medicaid eligibility. The newly released 2016 report includes 3 additional policy categories: biosimilar prescriber communication, step therapy protection, and state rare disease councils. The format of grading each state from A to F in each of these 7 categories is also new to this year’s report.

The improvement from 2015 to 2016 was minimal. No states expanded Medicaid eligibility for residents or passed new laws to protect patients from high out-of-pocket costs, and very few added new disorders to their newborn screening programs. The report pointed to some positive findings, such as the new bills introduced in several states or the work of advocates to spread awareness of rare diseases.

For some categories, a wide range of grades were seen across the nation. After analysis of coverage and access to medical foods, 29 states were awarded an A or B, 8 states received a C or D, and 13 states failed. All states got an A for screening newborns for a list of core conditions, but less than half scored an A or B for their coverage of secondary condition screening. Just 9 states earned an A or B for their patient protections around the use of step therapy, which according to NORD “can delay appropriate treatment,” while 3 scored a D and the rest failed.

Other categories had a more polarized distribution of grades across states, which “either scored highly or poorly with no real middle ground.” For prescription drug cost sharing, just 9 states received an A or B while the remaining 41 states earned an F. With no significant changes from last year, 32 states scored an A or B on Medicaid expansion, while the rest scored a D or an F. Sufficient laws regarding communication among prescribers of biosimilars were adopted by 30 states, while all but 1 of the remaining states failed due to their lack of such policies. Finally, just 4 states have implemented a rare disease advisory council.

While some of these grades may seem disheartening, the NORD report emphasized that some areas could potentially improve in 2017 through new legislative efforts, including proposed laws to ensure biosimilar prescriber communication and the creation of rare disease advisory councils. Raising awareness of these policy deficiencies is essential to enacting change, according to the press statement that accompanied the report’s release.

“The ultimate purpose of this report is to educate and empower advocates to effect change in their state,” Tim Boyd, associate director of state policy at NORD,said in the statement. “Our team is committed to working with advocates and legislators until ideal policies are achieved in all 50 states and the District of Columbia.”