New Report Finds States Fall Short on Policies to Help People with Rare Diseases

Rare Daily Staff

States across the nation are failing to address the burden of rare diseases through legislative solutions, according to a new report from the National Organization for Rare Disorders Rare Action Network.

Thirty-six states earned a grade of “F” for failing to enact prescription drug cost-sharing limits. Another 15 states scored a failing grade for not mandating adequate coverage of medicinal foods. The report also found that half of all states fail to meet federal recommendations for newborn screening.

The 2018 State Report Card scores states on their policies across a range of issues relevant to people with rare diseases. It evaluates states on the strength of policies regarding the coverage of medical foods and newborn screening, prescription drug cost-sharing limits, policies supporting biosimilar prescriber communications, protections against step therapy protocols, and the establishment of rare disease advisory councils.

This year, the report has been expanded to also include a number of new policy areas including Medicaid 1115 Waivers, storage and research consent for dried blood spot samples used in newborn screening, and state Right-to-Try laws.

“The numbers are astonishing,” said Peter Saltonstall, president and CEO of NORD. “The latest State Report Card shows that state laws are not sufficiently representing millions of citizens. State lawmakers play an important role in determining individual access to health care and the report indicates that in several states, laws are failing rare disease patients.”

NORD launched its State Report Card report in 2015 to provide a roadmap for rare disease advocates and provide them with an understanding of how the various states fare with regards to policies that affect the daily lives of people with rare diseases.

“The intent with this report is to share valuable information that will enable advocates to affect change in their state,” said NORD Director of State Policy, Tim Boyd. “Our goal is to provide actionable steps for states that will improve people’s lives, so the report presents findings as well as tools for individuals to act on.”

March 20, 2018
Photo: Peter Saltonstall, president and CEO of NORD