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SB-247 Rare Disease Advisory Council.(2021-2022)

Senate:
Int
1st
Cmt
2nd
3rd
Pass
Pass
Veto
Assembly:
1st
Cmt
2nd
3rd
Pass
Bill Status
SB-247
Eggman (S)
-
Bates (S) , Fong (A) , Grove (S) , Hurtado (S) , Laird (S) , Levine (A) , Newman (S) , Rubio (S)
Rare Disease Advisory Council.
02/24/21
An act to add Part 4.6 (commencing with Section 124965) to Division 106 of the Health and Safety Code, relating to rare diseases.
Senate
09/07/21
05/20/21

Type of Measure
Active Bill - In Floor Process
Majority Vote Required
Non-Appropriation
Fiscal Committee
Non-State-Mandated Local Program
Non-Urgency
Non-Tax levy
Last 5 History Actions
Date Action
10/05/21 In Senate. Consideration of Governor's veto pending.
10/05/21 Vetoed by the Governor.
09/09/21 Enrolled and presented to the Governor at 1 p.m.
09/02/21 In Senate. Ordered to engrossing and enrolling.
09/02/21 Read third time. Passed. (Ayes 77. Noes 0. Page 2687.) Ordered to the Senate.
Daily File Status
File File Date Item
Sen Governor's Vetoes 01-24-2022 15
Governor's Veto Message
To the Members of the California State Senate:

I am returning Senate Bill 247 without my signature.

This bill seeks to establish the Rare Disease Advisory Council in the California Health and Human Services (CHHS) Agency, to research and determine the most appropriate methods to collect data on rare diseases, identify priorities relating to treatment and services, and identify best practices for rare disease care. The Council would also be tasked with coordinating statewide research, acting as an advisory body to the state Legislature and other state agencies, guiding research into rare diseases, assisting in the creation and financing of a Rare Disease Fund, and adopting regulations.

While it is important for the public, providers, state agencies, and private partners to have access to information on rare diseases, the purpose and duties of the Advisory Council as would be required by SB 247 are extensive and costly. Bills with a significant fiscal impact, such as this measure, should be considered in the annual budget process. For this reason, I cannot sign this bill.


Sincerely,





Gavin Newsom