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Senate hears personal testimony for rare-disease advisory council and addresses fiscal staffing needs

Utah Senate · March 12, 2019
AI-Generated Content: All content on this page was generated by AI to highlight key points from the meeting. For complete details and context, we recommend watching the full video. so we can fix them.

Summary

Senators shared personal testimony in support of a Rare Disease Advisory Council (HB 211), which would be staffed by the Department of Health and carries an approximate $38,000 fiscal note for minimum staff; the bill was moved to third reading but tabled for fiscal handling.

Senator Escamilla presented House Bill 211 to create a Rare Disease Advisory Council within the Department of Health to gather and provide information to the legislature, state agencies and the public about rare diseases and access to treatment.

Floor testimony included personal accounts: Senator Maine spoke in favor citing a nephew with a progressive disease who…

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