MINUTES OF THE
HOUSE HEALTH AND HUMAN SERVICES STANDING COMMITTEE
Monday, February 11, 2019 • 3:40 p.m. • 210 Senate Building


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

Note: A copy of related materials and an audio recording of the meeting can be found at www.le.utah.gov.

Motion passed.passed with a vote 10-0-2.
Yeas - 10Nays-0Abs-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 - 8Nays-0Abs-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 - 9Nays-0Abs-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
1.        Page 2, Lines 46 through 51: 
46                 (ii) at least the following individuals:
47                 (A) a representative from the department;
48                 (B) researchers and { health care practitioners } physicans who specialize in rare diseases , including at least one representative from the University of Utah ;
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 - 10Nays-0Abs-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 - 10Nays-0Abs-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 - 8Nays-0Abs-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 - 8Nays-0Abs-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.