Members Present: Rep. Brad M. Daw, Chair Rep. Kelly B. Miles, Vice Chair Rep. Stewart E. Barlow Rep. Jennifer Dailey-Provost Rep. Steve Eliason Rep. Sandra Hollins Rep. Marsha Judkins Rep. Paul Ray | Rep. Rex P. Shipp Rep. Norman K. Thurston Rep. Raymond P. Ward Members Absent: Rep. Robert M. Spendlove Staff Present: Ms. Karin M. Rueff, Policy Analyst Ms. Karen C. Allred, Committee Secretary |
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Note: A copy of related materials and an audio recording of the
meeting can be found at www.le.utah.gov.
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Motion passed.passed with a vote 10-0-2. | |||
Yeas - 10 | Nays-0 | Abs-2 | |
Rep. S. Barlow Rep. J. Dailey-Provost Rep. B. Daw Rep. S. Eliason Rep. S. Hollins Rep. M. Judkins Rep. K. Miles Rep. P. Ray Rep. R. Shipp Rep. R. Ward | Rep. R. Spendlove Rep. N. Thurston |
Chair Daw called the meeting to order at 3:46 p.m. |
MOTION: Rep. Miles moved to approve the minutes of the February 6, 2019 meeting. The motion passed with a vote of 8-0-4. | |||
Yeas - 8 | Nays-0 | Abs-4 | |
Rep. S. Barlow Rep. B. Daw Rep. S. Hollins Rep. M. Judkins Rep. K. Miles Rep. P. Ray Rep. R. Shipp Rep. N. Thurston | Rep. J. Dailey-Provost Rep. S. Eliason Rep. R. Spendlove Rep. R. Ward |
1. H.B. 211 Rare Disease Advisory Council (Perry, L.) |
Rep. Lee B. Perry presented the bill with the assistance of Ms. Gina Szajnuk, Co-Founder, Rare and Undiagnosed Network, and Ava Szajnuk. |
Ms. Justine Case, Co-Ambassador, Rare Action Network, spoke in favor of the bill. |
MOTION: Rep. Ray moved to replace H.B. 211 with 1st Substitute H.B. 211. The motion passed with a vote of 9-0-3. | |||
Yeas - 9 | Nays-0 | Abs-3 | |
Rep. S. Barlow Rep. J. Dailey-Provost Rep. B. Daw Rep. S. Eliason Rep. S. Hollins Rep. M. Judkins Rep. K. Miles Rep. P. Ray Rep. R. Shipp | Rep. R. Spendlove Rep. N. Thurston Rep. R. Ward |
MOTION: Rep. Barlow moved to amend 1st Substitute H.B. 211 with Amendment #1. The motion passed with a vote of 10-0-2. | |||
Amendment 1
1st Sub. H.B. 211 46 (ii) at least the following individuals: 47 (A) a representative from the department; 48 (B) researchers and { 49 (C) two individuals who are the patient, parent , or caregiver of an individual with a rare disease; 50 and 51 (D) two representatives from rare disease patient organizations that operate in the state. |
Yeas - 10 | Nays-0 | Abs-2 | |
Rep. S. Barlow Rep. J. Dailey-Provost Rep. B. Daw Rep. S. Eliason Rep. S. Hollins Rep. M. Judkins Rep. K. Miles Rep. P. Ray Rep. R. Shipp Rep. R. Ward | Rep. R. Spendlove Rep. N. Thurston |
MOTION: Rep. Ray moved to pass 1st Substitute H.B. 211 out favorably. The motion passed with a vote of 10-0-2. | |||
Yeas - 10 | Nays-0 | Abs-2 | |
Rep. S. Barlow Rep. J. Dailey-Provost Rep. B. Daw Rep. S. Eliason Rep. S. Hollins Rep. M. Judkins Rep. K. Miles Rep. P. Ray Rep. R. Shipp Rep. R. Ward | Rep. R. Spendlove Rep. N. Thurston |
2. H.B. 261 Office of Quality and Design (Hawkins, J.) |
Rep. Jon Hawkins presented the bill with the assistance of Mr. Justin Naylor, Director, Office of Quality and Design. |
MOTION: Rep. Ray moved to pass H.B. 261 out favorably. The motion passed with a vote of 8-0-4. | |||
Yeas - 8 | Nays-0 | Abs-4 | |
Rep. J. Dailey-Provost Rep. B. Daw Rep. S. Eliason Rep. M. Judkins Rep. K. Miles Rep. P. Ray Rep. R. Shipp Rep. R. Ward | Rep. S. Barlow Rep. S. Hollins Rep. R. Spendlove Rep. N. Thurston |
MOTION: Rep. Ray moved to adjourn. The motion passed with a vote of 8-0-4. | |||
Yeas - 8 | Nays-0 | Abs-4 | |
Rep. J. Dailey-Provost Rep. B. Daw Rep. S. Eliason Rep. M. Judkins Rep. K. Miles Rep. P. Ray Rep. R. Shipp Rep. R. Ward | Rep. S. Barlow Rep. S. Hollins Rep. R. Spendlove Rep. N. Thurston |
Chair Daw adjourned the meeting at 4:34 p.m. |