The National Organization for Rare Disorders Rare Action Network (NORD RAN) recently released a report indicating that the majority of states are not meeting legislative solutions to reduce the impact of rare diseases, which affect approximately 30 million Americans.
The report, titled “State Report Card: A Roadmap to Improve the Lives of People with Rare Diseases,” shows the progression of a number of areas relating to health policy is slow.
"The statistics on rare diseases demand our attention as a public health issue: there are 7,000 rare diseases that, combined, affect 30 million Americans -- or one in 10 people," NORD President and CEO Peter Saltonstall said. "State lawmakers play an important role in determining individual access to health care and the NORD RAN State Report Card indicates that states' laws are failing their constituents."
The State Report Card is the second annual edition. It rates states based on how strong their policies that include coverage of medical foods and newborn screenings are, in addition to prescription drug cost-sharing limits.
This year’s report sees new features, which include the examination of policies supporting biosimilar prescriber communications, step therapy protocol protections and establishment of rare disease advisory councils.
