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RDAC advocacy updates: conditional waivers, emergency protocols, meeting schedule and NORD conference representation
Summary
The RDAC advocacy committee reported growth and plans to pursue conditional waivers and emergency-protocol recognition for rare conditions; the council set August as a virtual meeting and scheduled an in-person meeting for Dec. 9 and discussed sending one or both chairs to the NORD conference in October.
Mary Caruso, caregiver representative and lead of the RDAC—s advocacy subcommittee, said the committee has grown to about 10 members and plans to meet in mid-August to prepare legislative and advocacy guidance. The committee identified two carryover issues from the prior year: emergency medical protocols for people with rare conditions and a conditional or compassionate waiver for children born with devastating progressive disorders.
Leslie said the council must meet with DPH—s emergency medical officials and with DDS to pursue conditional-waiver language. "We can get these emergency protocols certified by physicians so that, when you go into an emergency room or EMS picks you up, it's a physician order," Leslie said. Mary described a historical conditional waiver that used to be applied to severely affected children until age-based testing clarified eligibility; advocates said that process is now rarely used and creates a gap between age 3 and the time of formal intellectual testing.
The council discussed logistics for upcoming RDAC meetings. Emily and Melia arranged an in-person meeting in September at Yale-New Haven Hospital (YNC/"Yukon" in the record) on Sept. 30, and the October meeting was planned at a Berring Ingelheim site. The group had been unable to secure an August host; Leslie proposed making the August meeting virtual and moving the in-person meeting to Dec. 9. Leslie moved the proposal; Mary seconded the motion. Members indicated assent by reaction and verbal confirmation, and the council agreed to: hold the August meeting virtually at the usual hour, and schedule the in-person meeting for Dec. 9 with location to be determined.
The RDAC also discussed membership terms and appointments. Leslie reviewed current term lengths and asked two-year appointees whether they intended to seek reappointment. Gary Smart, representing the Sickle Cell Disease Association of Connecticut, said he would serve through the September meeting and was willing to be formally appointed and considered for a second term. Leslie said she would contact legislative appointing authorities (including Senator Summers) to request formal reappointment where appropriate.
Under new business, Leslie said the National Organization for Rare Disorders (NORD) will fund two RDAC leaders to attend its October conference; she asked interested RDAC leaders and committee chairs to volunteer by Aug. 1 to fill those slots. Members discussed coverage for the conference and availability.
The council did not take formal votes on policy issues during this update but took the motion and consensus action on the meeting schedule and recorded plans to pursue agency meetings and waiver work.
