Kentucky Governor Vetoes Bill to Create Rare Disease Council

Rare Daily Staff

Kentucky Governor Matthew Bevin vetoed a bill that would promote research, treatment, and education about rare diseases.

SB 7, sponsored by Republican Julie Adams, would have established a Kentucky Rare Disease Advisory Council and Trust Fund. The bill called for the governor would appoint the members of the council. The rare disease trust fund would be administered by the Cabinet for Health and Family Services to finance the operation of the council and support rare disease research and treatment. The bill included a sunset clause of December 1, 2028 for the council.

Both houses of the Kentucky legislature passed the bill on a unanimous vote in March.

“While the intent behind Senate Bill 7 is laudable, it is an unnecessary expansion of bureaucracy. State employees ultimately do most of the work by such “volunteer” advisory councils, for which Senate Bill 7 does not provide funding,” the governor said in a veto statement. “The Kentucky Department for Public Health does not currently have the expertise to support activities in the specialized field of rare diseases. Under these circumstances, the objectives of the Kentucky Rare Disease Advisory Council would be difficult to fulfill.”

April 5, 2018
Photo: Governor Matthew Bevin in 2016 by Gage Skidmore