Rare Disease Advisory Council presses legislators on waivers, emergency protocols and 504 protections

The Rare Disease Advisory Council reviewed legislative priorities during its meeting, focusing on patient-specific emergency protocols (HB6920), funding authority for the council (HB6978), changes to the state definition of intellectual disability (H7108) and other bills that members say affect access to waivers, newborn screening and 504 plan protections.

Council co-chair Leslie Bennett, the patient advocate for rare diseases and meeting chair, summarized the council’s agenda and emphasized outreach to legislators. "We addressed mostly our legislative priorities, which are funding, emergency protocols, waivers, sickle cell, ensuring access to orphan drugs and rare disease treatments," Bennett said. Bennett also noted that the council could not vote on minutes because it did not have a quorum.

The meeting devoted substantial time to H7108, the bill that would change the state’s definition of intellectual disability and remove reliance on an IQ cutoff. Mary Caruso, a caregiver and chair of the advocacy subcommittee, said families fear that a broader definition would overwhelm existing…