Rare Disease Advisory Council.
Do you support it?
Want to know if it passes?
We'll email you when AB 1016 moves — a committee vote, a floor vote, or a signature. Nothing else.
Free forever · unsubscribe in one click.
Your answer was recorded either way.
Which district are you in?
Your ZIP is all we need to match you to your own representatives — so we can tell you how they voted on AB 1016.
You're tracking AB 1016
We'll email you the moment it moves.
AB 1016 — Rare Disease Advisory Council.
Last action — From committee: Filed with the Chief Clerk pursuant to Joint Rule 56.
No card. One bill, free forever — alerts when it moves.
-
✓Introduced
-
2In Committee
-
3Passed Assembly
-
4Passed Senate
-
5To Executive
-
6Enacted
This bill died with 2019-2020 Regular Session. It reached “In Committee” and never advanced before the session ended, so it can no longer move — a new version would have to be reintroduced in the current session.
This bill is no longer active — its legislative session has ended, so there is no live prognosis. It would have to be reintroduced in the current session to move again.
Summary
Existing law establishes the California Health and Human Services Agency, which includes the State Department of Public Health, among other state departments charged with the administration of health, social, and other human services. Under existing law, the State Department of Public Health has authority over various programs promoting public health, including genetic disease testing and newborn screenings. This bill would establish the Rare Disease Advisory Council within the agency for specified purposes, including, among others, coordinating statewide efforts for the study of the incidence of rare diseases within the state, and acting as the advisory body on rare diseases to the Legislature and state and private agencies that provide services to persons with rare diseases. Under the bill, the duties of the advisory council would include, among others, researching and determining the most appropriate method to collect data on rare diseases, and identifying best practices for rare disease care. The bill would specify the composition of the advisory council, whose members would be appointed by the Secretary of California Health and Human Services and the State Public Health Officer. Before any appointments are made, the bill would require the agency to research and report to the Legislature on existing sources of funding that may be used to finance the formation and operation of the advisory council. The bill would require the advisory council to apply for, and accept, any grant of funds from the federal government, private foundations, or other sources, as specified. The bill would require the advisory council to meet at least 3 times annually and to report to the agency and the Legislature every 2 years on its activities, findings, and recommendations.
Bill Text
- Amended 03/25/19 - Amended Assembly Current pdf March 25, 2019
- Introduced 02/21/19 - Introduced pdf February 21, 2019
- AB1016 View text html
Action History
-
From committee: Filed with the Chief Clerk pursuant to Joint Rule 56.
-
Died pursuant to Art. IV, Sec. 10(c) of the Constitution.
-
In committee: Held under submission.
-
In committee: Set, first hearing. Referred to APPR. suspense file.
-
From committee: Do pass and re-refer to Com. on APPR. (Ayes 15. Noes 0.) (April 23). Re-referred to Com. on APPR.
-
Re-referred to Com. on HEALTH.
-
From committee chair, with author's amendments: Amend, and re-refer to Com. on HEALTH. Read second time and amended.
-
Referred to Com. on HEALTH.
-
From printer. May be heard in committee March 24.
-
Read first time. To print.
Sponsors
- Maienschein · Primary
Sponsorship breakdown
Export CSV (upgrade) →1 sponsors · 0 co-sponsors · 121 not signed on
Sponsors (1)
- Maienschein
Co-sponsors (0)
None.
Not signed on (121)
121 members have not signed on to this bill.
Show all 121 →"Not signed on" means a member has not sponsored or co-sponsored this bill — it does not imply opposition. Members flagged Voted No have a recorded No vote on this bill.
Votes
| Party | Yea | Nay | Present | Not Voting |
|---|---|---|---|---|
| Unaffiliated | 9 | 0 | 0 | 0 |
| Democratic | 5 | 0 | 0 | 0 |
| Republican | 1 | 0 | 0 | 0 |
| Total | 15 | 0 | 0 | 0 |
| % of votes cast | 100% | 0% | 0% | 0% |
How each member voted (15)
| Member | Party | Vote |
|---|---|---|
| Burke | — | Yea |
| Wood | — | Yea |
| Rodriguez | — | Yea |
| Santiago | — | Yea |
| Mayes | — | Yea |
| Bigelow | — | Yea |
| McCarty | — | Yea |
| Waldron | — | Yea |
| Nazarian | — | Yea |
| Aguiar-Curry, Cecilia M. | Democratic | Yea |
| Bonta, Mia | Democratic | Yea |
| Carrillo, Juan | Democratic | Yea |
| Limón, Monique | Democratic | Yea |
| Ramos, James C. | Democratic | Yea |
| Flora, Heath | Republican | Yea |
Subjects
Frequently asked questions
- What does AB 1016 do?
- Existing law establishes the California Health and Human Services Agency, which includes the State Department of Public Health, among other state departments charged with the administration of health, social, and other human services. Under existing law, the State Department of Public Health has authority over various programs promoting public health, including genetic disease testing and newborn screenings. This bill would establish the Rare Disease Advisory Council within the agency for specified purposes, including, among others, coordinating statewide efforts for the study of the incidence of rare diseases within the state, and acting as the advisory body on rare diseases to the Legislature and state and private agencies that provide services to persons with rare diseases. Under the bill, the duties of the advisory council would include, among others, researching and determining the most appropriate method to collect data on rare diseases, and identifying best practices for rare disease care. The bill would specify the composition of the advisory council, whose members would be appointed by the Secretary of California Health and Human Services and the State Public Health Officer. Before any appointments are made, the bill would require the agency to research and report to the Legislature on existing sources of funding that may be used to finance the formation and operation of the advisory council. The bill would require the advisory council to apply for, and accept, any grant of funds from the federal government, private foundations, or other sources, as specified. The bill would require the advisory council to meet at least 3 times annually and to report to the agency and the Legislature every 2 years on its activities, findings, and recommendations.
- Who sponsors AB 1016?
- AB 1016 is sponsored by Maienschein.
- What is the current status of AB 1016?
- This bill died with 2019-2020 Regular Session. It reached “In Committee” and never advanced before the session ended, so it can no longer move — a new version would have to be reintroduced in the current session.
- Where can I track AB 1016?
- Track AB 1016 free on One Click Politics — get push/email alerts when it moves.
Make your voice heard on AB 1016
Find the representatives who decide this bill and tell them where you stand — for yourself, or mobilize your whole list in one click with One Click Politics advocacy software.
Stay ahead of AB 1016
Last checked for changes 3 months ago · updated continuously
One Click Politics tracks every bill in Congress and all 50 states.
Track this bill →