Florida 2021 Regular Session Status: In Committee

HB 1373 — Rare Disease Advisory Council

Last action — Laid on Table; companion bill(s) passed, see CS/CS/SB 272 (Ch. 2021-122)

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  1. ✓
    Introduced
  2. 2
    In Committee
  3. 3
    Passed House
  4. 4
    Passed Senate
  5. 5
    To Executive
  6. 6
    Enacted

This bill died with 2021 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This bill is no longer active — its legislative session has ended, so there is no live prognosis.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

Rare Disease Advisory Council; Creates Rare Disease Advisory Council; specifies purpose of council; provides for staff & administrative support; prescribes composition of council; provides for initial appointments to council; provides organizational & other meeting requirements for council; prescribes duties & responsibilities of council.

Bill Text

What changed in the latest version

105 added · 90 removed

105 line(s) added, 90 removed.

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F L O R I D A H O U S E O F R E P R E S E N T A T I V E S HB 1373 2021 A bill to be entitled An act relating to the Rare Disease Advisory Council;
F L O R I D A H O U S E O F R E P R E S E N T A T I V E S CS/HB 1373 2021 A bill to be entitled An act relating to the Rare Disease Advisory Council;
20.03(7), is created adjunct to the Department of Health for the purpose of providing recommendations on ways to improve health outcomes for individuals residing in this Page 1 of 5 CODING:
20.03(7), is created adjunct to the Department of Health for the purpose of providing recommendations on ways to improve health outcomes for individuals residing in the state Page 1 of 5 CODING:
hb1373-00 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S HB 1373 2021 state who have a rare disease.
hb1373-01-c1 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S CS/HB 1373 2021 who have a rare disease.
(2) The advisory council is composed of the following members appointed by the Governor:
(2) The advisory council is composed of the following members:
(a) A representative of the Department of Health.
(a) As appointed by the Governor:
(b) A representative of the Agency for Health Care Administration.
1.
(c) A representative of the Office of Insurance Regulation.
A representative of the Department of Health.
(d) A representative of the Department of Education.
2.
(e) Two representatives from academic research institutions in this state which receive any grant funding for research regarding rare diseases.
A representative of the Agency for Health Care Administration.
(f) One geneticist practicing in this state.
3.
(g) One registered nurse or advanced practice registered nurse who is licensed and practicing in this state with experience treating rare diseases.
A representative of the Office of Insurance Regulation.
(h) Two physicians who are licensed and practicing in this state with experience treating rare diseases.
4.
(i) One hospital administrator from a hospital in this Page 2 of 5 CODING:
A representative of the Department of Education.
5.
One geneticist practicing in the state.
6.
One registered nurse or advanced practice registered nurse who is licensed and practicing in the state with experience in treating rare diseases.
7.
One hospital administrator from a hospital in the state which provides care to individuals diagnosed with rare diseases.
8.
A pharmacist who is licensed and practicing in the state who has experience with drugs that are used in the treatment of rare diseases.
9.
A representative of the biotechnology industry.
Page 2 of 5 CODING:
hb1373-00 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S HB 1373 2021 state which provides care to individuals diagnosed with rare diseases.
hb1373-01-c1 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S CS/HB 1373 2021 10.
(j) Two individuals who are 18 years of age or older who have a rare disease.
A representative of health insurance companies.
(k) Two individuals who are caregivers of an individual with a rare disease.
(b) As appointed by the President of the Senate:
(l) Two representatives of organizations operating in this state which provide care or other support for individuals with rare diseases.
1.
(m) A pharmacist who is licensed and practicing in this state who has experience with drugs that are used to treat rare diseases.
A representative from an academic research institution in the state which receives grant funding for research regarding rare diseases.
(n) A representative of the biotechnology industry.
2.
(o) A representative of health insurance companies.
A physician who is licensed under chapter 458 or chapter 459 and practicing in the state with experience in treating rare diseases.
Any vacancy on the advisory council shall be filled in the same manner as the original appointment.
3.
(3) The initial members of the advisory council shall be appointed by September 1, 2021.
An individual who is 18 years of age or older who has a rare disease.
Each member shall be appointed to a 4-year term of office.
4.
However, in order to achieve staggered terms, the initial members appointed pursuant to paragraphs (2)(a)-(i) shall be appointed to a 2-year term.
An individual who is a caregiver of an individual with a rare disease.
The Governor shall designate a chair and vice chair of the advisory council from among its membership.
5.
The advisory council shall meet for its initial meeting by October 1, 2021.
A representative of an organization operating in the state which provides care or other support to individuals with rare diseases.
Thereafter, the Page 3 of 5 CODING:
(c) As appointed by the Speaker of the House of Representatives:
1.
A representative from an academic research institution in the state which receives grant funding for research regarding rare diseases.
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2.
A physician who is licensed under chapter 458 or chapter 459 and practicing in the state with experience in treating rare diseases.
3.
An individual who is 18 years of age or older who has a rare disease.
Page 3 of 5 CODING:
hb1373-00 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S HB 1373 2021 advisory council may meet upon the call of the chair or upon the request of a majority of its members.
hb1373-01-c1 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S CS/HB 1373 2021 4.
An individual who is a caregiver of an individual with a rare disease.
5.
A representative of organizations in the state which provide care or other support to individuals with rare diseases.
81 Any vacancy on the advisory council must be filled in the same manner as the original appointment.
(3) The initial members of the advisory council must be appointed by September 1, 2021.
Each member must be appointed to a 4-year term of office.
However, in order to achieve staggered terms, each of the initial members appointed pursuant to paragraph (2)(a) must be appointed to a 2-year term.
The Governor shall designate a chair and vice chair of the advisory council from among its membership.
The advisory council shall meet for its initial meeting by October 1, 2021.
Thereafter, the advisory council may meet upon the call of the chair or upon the request of a majority of its members.
(a) Consult with experts on rare diseases and solicit public comment to assist in developing recommendations on improving the treatment of rare diseases in this state.
(a) Consult with experts on rare diseases and solicit public comment to assist in developing recommendations on improving the treatment of rare diseases in the state.
(b) Develop recommended strategies for academic research institutions in this state to facilitate continued research on rare diseases.
(b) Develop recommended strategies for academic research Page 4 of 5 CODING:
Words stricken are deletions;
words underlined are additions.
hb1373-01-c1 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S CS/HB 1373 2021 institutions in the state to facilitate continued research on rare diseases.
(e) By July 1 of each year, beginning in 2022, submit a report to the Governor and the State Surgeon General which Page 4 of 5 CODING:
(e) By July 1 of each year, beginning in 2022, submit a report to the Governor and the State Surgeon General which describes the activities of the advisory council in the past year and its findings and recommendations regarding rare disease research and care.
Words stricken are deletions;
words underlined are additions.
hb1373-00 F L O R I D A H O U S E O F R E P R E S E N T A T I V E S HB 1373 2021 describes the activities of the advisory council in the past year and its findings and recommendations regarding rare disease research and care.
hb1373-00
hb1373-01-c1
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Action History

  1. Laid on Table; companion bill(s) passed, see CS/CS/SB 272 (Ch. 2021-122)

  2. Added to Second Reading Calendar

  3. Bill released to House Calendar

  4. Reported out of Health & Human Services Committee

  5. Favorable by Health & Human Services Committee

  6. Added to Health & Human Services Committee agenda

  7. Now in Health & Human Services Committee

  8. Reported out of Health Care Appropriations Subcommittee

  9. Favorable by Health Care Appropriations Subcommittee

  10. Added to Health Care Appropriations Subcommittee agenda

  11. Now in Health Care Appropriations Subcommittee

  12. Referred to Health & Human Services Committee

  13. Referred to Health Care Appropriations Subcommittee

  14. 1st Reading (Committee Substitute 1)

  15. CS Filed

  16. Laid on Table under Rule 7.18(a)

  17. Reported out of Professions & Public Health Subcommittee

  18. Favorable with CS by Professions & Public Health Subcommittee

  19. Added to Professions & Public Health Subcommittee agenda

  20. Now in Professions & Public Health Subcommittee

  21. Referred to Health & Human Services Committee

  22. Referred to Health Care Appropriations Subcommittee

  23. Referred to Professions & Public Health Subcommittee

  24. 1st Reading (Original Filed Version)

  25. Filed

Sponsors

  • DuBose · Primary

Sponsorship breakdown

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1 sponsors · 0 co-sponsors · 163 not signed on

Sponsors (1)

  • DuBose

Co-sponsors (0)

None.

Not signed on (163)

163 members have not signed on to this bill.

Show all 163 →

"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.

Whip count is in markup. Polling the chamber and every recorded vote this session. Only the first open is slow. It’s instant for you after this. Calling the roll · Tallying · Engrossing

Votes

Favorable (Health & Human Services Committee)

Passed 20 Yea · 0 Nay · 1 Other
Party YeaNayPresentNot Voting
Republican 11000
Democrat 4001
Unaffiliated 5000
Total 20001
% of votes cast 95%0%0%5%
How each member voted (21)
Member Party Vote
Altman — Yea
Benjamin — Yea
Caruso — Yea
Duran — Yea
Grant — Yea
Davis, Tracie Democrat Not Voting
Rayner, Michele K. Democrat Yea
Robinson, Felicia Simone Democrat Yea
Skidmore, Kelly Democrat Yea
Tant, Allison Democrat Yea
Botana, Adam Republican Yea
Burton, Colleen Republican Yea
Garrison, Sam Republican Yea
Koster, Traci Republican Yea
Massullo, Ralph E., Jr. Republican Yea
Melo, Lauren Republican Yea
Persons-Mulicka, Jenna Republican Yea
Rizo, Alex Republican Yea
Robinson Jr., William Cloud "Will" Republican Yea
Sirois, Tyler I. Republican Yea
Yarborough, Clay Republican Yea

Official roll call →

Favorable (Health Care Appropriations Subcommittee)

Passed 13 Yea · 0 Nay · 2 Other
Party YeaNayPresentNot Voting
Unaffiliated 4000
Republican 6002
Democrat 3000
Total 13002
% of votes cast 87%0%0%13%
How each member voted (15)
Member Party Vote
Altman — Yea
Brown — Yea
Duran — Yea
Harding — Yea
Driskell, Fentrice Democrat Yea
Skidmore, Kelly Democrat Yea
Smith, Carlos Guillermo Democrat Yea
Barnaby, Webster Republican Yea
Robinson Jr., William Cloud "Will" Republican Not Voting
Salzman, Michelle Republican Yea
Sirois, Tyler I. Republican Not Voting
Snyder, John Republican Yea
Trabulsy, Dana Republican Yea
Vacant Republican Yea
Yarborough, Clay Republican Yea

Official roll call →

Favorable With Committee Substitute (Professions & Public Health Subcommittee)

Passed 18 Yea · 0 Nay · 1 Other
Party YeaNayPresentNot Voting
Republican 9000
Democrat 6001
Unaffiliated 3000
Total 18001
% of votes cast 95%0%0%5%
How each member voted (19)
Member Party Vote
Fernandez-Barquin — Yea
Killebrew — Yea
Rommel — Yea
Arrington, Kristen Aston Democrat Yea
Eskamani, Dr. Anna V. Democrat Yea
Gottlieb, Michael "Mike" Democrat Not Voting
Hart-Lowman, Dianne "Ms Dee" Democrat Yea
Rayner, Michele K. Democrat Yea
Skidmore, Kelly Democrat Yea
Smith, Carlos Guillermo Democrat Yea
Andrade, Robert Alexander "Alex" Republican Yea
Garrison, Sam Republican Yea
Maggard, Randall Scott "Randy" Republican Yea
Maney, Patt Republican Yea
McClain, Stan Republican Yea
Rizo, Alex Republican Yea
Robinson Jr., William Cloud "Will" Republican Yea
Sirois, Tyler I. Republican Yea
Tuck, Kaylee Republican Yea

Official roll call →

Subjects

healthcare
Cross-referencing the record. Reading this bill against every other bill in the corpus by meaning, not keywords. Only the first open is slow. It’s instant for you after this. Matching · Ranking · Engrossing

Frequently asked questions

What does HB 1373 do?
Rare Disease Advisory Council; Creates Rare Disease Advisory Council; specifies purpose of council; provides for staff & administrative support; prescribes composition of council; provides for initial appointments to council; provides organizational & other meeting requirements for council; prescribes duties & responsibilities of council.
Who sponsors HB 1373?
HB 1373 is sponsored by DuBose.
What is the current status of HB 1373?
This bill died with 2021 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 HB 1373?
Track HB 1373 free on One Click Politics — get push/email alerts when it moves.

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Last checked for changes 3 months ago · updated continuously

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