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Committee advances bill to create Rare Disease Advisory Council, leaves per‑diem funding unspecified
Summary
The committee passed H46 to establish a Rare Disease Advisory Council made up of experts, individuals with lived experience and a parent or guardian; the bill includes per‑diem/reimbursement for non‑professional participants (up to 40 days annually) but does not specify a funding source.
The Senate Appropriations Committee advanced H46 on April 23, a bill to establish a Rare Disease Advisory Council and provide resources for long COVID education for primary care providers and patients.
A committee presenter explained H46 would create a council composed of various rare‑disease experts, two individuals with lived experience, a parent or guardian of someone with a rare disease and a representative of the health equity advisory commission; the bill limits pay‑eligible meetings for participants who are not acting in a professional capacity to no more than four meetings annually for the council, and it provides for per‑diem/reimbursement for non‑professional participants for up to 40 days annually. The presenter said the bill text does not specify a funding source for those per‑diem payments.
Why it matters: proponents said the council would bring together clinical expertise and lived experience to advise on rare‑disease policy and improve resources for conditions such as long COVID; committee members flagged the absence of an identified appropriation for participant payments and suggested that a departmental budget or technical assistance might cover administrative support.
Committee action: a motion to pass H46 was made and the committee recorded affirmative votes. Several members asked technical questions about membership, whether the council would be housed in the Department of Health and where per‑diem payments would originate; the presenter said the bill does not specify a funding source and said staff would follow up.
Next step: H46 advances from the committee and will proceed through the legislative process; staff indicated amendments could be filed if committee members want the funding source or other clarifications changed.
