Human Services staff revise draft advisory council duties, pare meeting schedule

Human Services staff met April 30 to revise draft 1.1 of a bill that would establish an advisory council focused on rare disease issues and related screening, discussing changes to make key duties discretionary, remove one proposed duty, consolidate others, and reduce the council's meeting schedule, staff said.

The Department of Health told staff that requiring the health department and the advisory council to perform a long list of duties without additional funding would be difficult to absorb in existing budgets. A recommendation discussed by staff was to "change 'shall' to 'may' in the lead-in language" describing the advisory council's duties so the council's activities would be discretionary rather than mandatory, a staff member said.

Staff and participants agreed to eliminate one subsection of duties that the Department of Health said overlaps with existing work and to combine several related items (described in the draft as items B, D and E) into a single task phrased to support timely patient access and relevant diagnostic and treatment services. Staff discussed directing the advisory council to "consult with experts" and to identify conditions to recommend to the existing Newborn Screening Advisory Committee for inclusion in screening, rather than directing the new council to identify conditions for screening itself.

Participants noted existing bodies within the Department of Health already handle some functions in the draft. Dr. Natalie Marks was cited in the discussion as noting that items under consideration include equity in the health care system; staff discussed reducing overlap with the Newborn Screening Advisory Committee to avoid duplication.

On budget, staff said a fiscal note will be prepared once the bill text is finalized; an early estimate mentioned in the meeting was about $10,000, though staff said the final figure may be lower because the proposed council would meet quarterly (four meetings) rather than monthly (12 meetings) and only a small number of members—three people, as discussed—would be eligible for a stipend.

Next steps listed in the meeting: staff will revise the draft (staff asked "Katie" to update the language), send the revised draft to the Department of Health for review, and place the item on a future agenda when the draft and scheduling allow. No formal vote or ordinance adoption occurred at the April 30 meeting.

Less central details from the meeting: participants confirmed draft 1.1 is posted on the project's webpage, said some changes discussed earlier that week were not yet incorporated, and agreed that subsection C in the duties section should be removed because it duplicates existing programs or exceeds advisory capacity.