Connecticut RDAC spotlights patient-specific emergency protocols, urges stakeholder meeting on House Bill 6920
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Summary
A public commenter and RDAC members urged state action on patient-specific emergency medical protocols and listed related legislative priorities, including newborn screening expansion and Medicaid coverage for prescribed medical foods; the public health committee will convene stakeholders to pursue next steps.
James Coyne, a Connecticut resident living with complex congenital conditions, told the Connecticut Rare Disease Advisory Council that standardized approaches in emergencies can be dangerous for patients with rare, complex medical histories and urged support for House Bill 6920 to create patient-specific emergency medical care protocols. "Patient specific emergency protocols would ensure EMS providers have access to critical information, including known medical conditions, necessary accommodations, and treatment plans tailored to the patient's unique physiology," Coyne said during public comment.
The council chair, Leslie Bennett, summarized RDAC's 2026 legislative priorities after a recent meeting with the public health committee. Bennett said the priorities include patient-specific emergency protocols, compassionate waivers for children with severe terminal conditions, expansion funding for newborn screening (RUSP additions), Medicaid/Husky coverage of prescribed over-the-counter medications, supplements and medical foods, improved accessibility equipment (for example hydraulic lifts) in outpatient settings, state-level actions on supplemental liquid oxygen reimbursement, and renewed efforts to ensure sickle cell trait results are communicated to affected individuals.
Carolyn Sheridan of the National Organization for Rare Disorders provided federal context, noting the House's passage of a package containing measures such as the Accelerating Kids Access to Care Act and the Give Kids a Chance reauthorization; she cautioned that national developments may delay Senate action and said NORD will engage on state-level implementation issues tied to HR 1. Bennett said the public health committee will arrange a meeting with stakeholders in the state to work through patient-specific protocol design and implementation details and asked members to help identify the appropriate state contacts.
The council did not adopt policy during this meeting; Bennett said the public health committee will convene stakeholders to "bang out" details and return recommendations to RDAC. The next procedural steps are for RDAC members to provide contact suggestions to staff and for the public health committee to schedule the stakeholder convening.
