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Advisory council urges action on emergency protocols and medication access for rare-disease patients
Summary
Council cochair Leslie Bennett told members that rare-disease medications "are not stocked by hospitals or emergency services," urging a work group with the public health committee and hospital association to address EMS/ED protocol risks and medication availability.
The Rare Disease Advisory Council pressed state and health-system stakeholders to address gaps in emergency care for people with rare diseases, saying standard symptom-based protocols and limited hospital stocking of medications can harm patients.
Cochair Leslie Bennett said the council will meet tomorrow with the CGA public health committee and members of the hospital association (CHIME) to discuss emergency protocols and medication access. "They're not stocked by hospitals or emergency services," Bennett said, describing patients who keep a…
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