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Rare Disease Advisory Council reports legislative wins, launches statewide resource map and moves September meeting
Summary
Mary Caruso, an RDAC patient-advocate member, told the council four of six legislative priorities passed this session, including funding for the council and a Katie Beckett provision, while emergency-protocol and Duchenne newborn-screening proposals were tabled.
The Rare Disease Advisory Council reviewed a series of committee updates, legislative outcomes and calendar changes during its meeting.
Mary Caruso, a patient-advocate member of the council, summarized the council’s legislative results: “Four of the six legislative priorities passed,” she said, naming funding for the RDAC, the Katie Beckett provision, a sickle cell measure and insurance coverage for a biomarker as successes. Caruso said two items were tabled: proposed emergency protocols and a proposal to add Duchenne muscular dystrophy to the newborn screening panel; she noted the group was watching related federal developments.
Council members said the RDAC’s funding measure passed and that staff will coordinate with the Department of Public Health on next steps. Leslie Bennett, RDAC cochair, said the executive team will meet with DPH after a staff member’s return in late June to discuss funding implementation and options. Bennett said one option on the table is forming or identifying a nonprofit to collect funds for the council.
Colleen Brunetti, who leads the awareness committee’s mapping work, reported the committee has about six core volunteers compiling an inventory of roughly 100 patient groups, hospitals, research organizations and companies for a statewide resource map. “Our first project is to create a map of rare disease resources in Connecticut,” Brunetti said. The committee aims to complete the map before December and to use it in the council’s annual report to the Connecticut General Assembly.
The council took one formal vote to change its calendar: because the previously scheduled September meeting conflicted with Rosh Hashanah, members voted to move that meeting back one week to Sept. 30. Colleen Brunetti made the motion; Mary Caruso seconded it. The motion carried with an affirmative roll call and no recorded opposition.
Council members also discussed appointment and term confirmations. Bennett said she will send letters to appointing legislators asking them to confirm whether earlier nominations were intended as three- or two-year terms; council members did not object to that approach.
Members reviewed invitations to external events. The National Organization for Rare Disorders offered two funded slots for RDAC members to attend its October meeting in Washington; Global Genes planned a Sept. 3 meeting in Boston and may provide partial support through a biopharma partner. Members were asked to notify council staff if they wished to use either opportunity.
Council leadership reported the death of member Jim Rawlings. Bennett said she would contact the sickle cell community to learn whether the family preferred memorials or donations and noted the council planned a group donation to Michelle House in his honor if the family and community supported that approach. Mary Caruso volunteered to coordinate collection of any donations on behalf of the council.
No new statutory changes were adopted at the meeting. Several items discussed — including funding implementation, conditional waivers for progressive neurogenetic disorders and possible short-term DDS waivers for affected children — will require further agency discussions and likely additional council work over the summer and fall.
