Rare Disease Council pushes state bills, prioritizes emergency-protocol legislation amid ER outsourcing concerns

The Rare Disease Advisory Council (RDAC) on April 22 reviewed pending state legislation the council is following and urged members to contact legislators to press for support on several priority bills, including one that would require medical personnel to follow patient-specific emergency protocols for people with rare diseases.

The council cochair, Leslie Bennett, said the legislation would ask “physicians, nurses, physician assistants, and everybody else to follow patient specific emergency protocols for those with rare diseases and special health care needs.” Bennett described the measure as a way to prevent incorrect, protocol-driven treatments when a patient’s condition requires an expert-approved, individualized plan.

Why it matters: Council members said enforcement of patient-specific emergency protocols could reduce preventable hospital stays and medical errors for people with rare conditions. At the same time, several bills the council supports carry large fiscal notes that make passage uncertain this year.

Details and council priorities - HB 6919: would add Duchenne muscular dystrophy to the newborn screening panel. Bennett said federal funding for the test is unlikely and that “the fiscal note for it is in excess of $300,000 per year,” making its…