- Summary
- Actions
- Committee Votes
- Floor Votes
- Memo
- Text
- LFIN
- Chamber Video/Transcript
A05762 Summary:
BILL NO | A05762 |
  | |
SAME AS | SAME AS S04497 |
  | |
SPONSOR | Paulin |
  | |
COSPNSR | Sayegh, Englebright, Griffin, Fahy, Simon, Barclay, Crouch, DeStefano, Jacobson, Schmitt, Ortiz, Arroyo, Cook, Steck, Raia, Thiele, McDonald, Benedetto, Otis |
  | |
MLTSPNSR | Jean-Pierre |
  | |
Add Art 27-L §2799-u, Pub Health L | |
  | |
Establishes the rare disease advisory council; advise and consult on policy matters relating to rare disease; twenty-one appointed members. |
A05762 Actions:
BILL NO | A05762 | |||||||||||||||||||||||||||||||||||||||||||||||||
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02/19/2019 | referred to health | |||||||||||||||||||||||||||||||||||||||||||||||||
04/02/2019 | reported referred to ways and means | |||||||||||||||||||||||||||||||||||||||||||||||||
05/14/2019 | reported | |||||||||||||||||||||||||||||||||||||||||||||||||
05/16/2019 | advanced to third reading cal.350 | |||||||||||||||||||||||||||||||||||||||||||||||||
05/22/2019 | passed assembly | |||||||||||||||||||||||||||||||||||||||||||||||||
05/22/2019 | delivered to senate | |||||||||||||||||||||||||||||||||||||||||||||||||
05/22/2019 | REFERRED TO FINANCE | |||||||||||||||||||||||||||||||||||||||||||||||||
06/04/2019 | SUBSTITUTED FOR S4497 | |||||||||||||||||||||||||||||||||||||||||||||||||
06/04/2019 | 3RD READING CAL.864 | |||||||||||||||||||||||||||||||||||||||||||||||||
06/04/2019 | PASSED SENATE | |||||||||||||||||||||||||||||||||||||||||||||||||
06/04/2019 | RETURNED TO ASSEMBLY | |||||||||||||||||||||||||||||||||||||||||||||||||
12/17/2019 | delivered to governor | |||||||||||||||||||||||||||||||||||||||||||||||||
12/20/2019 | signed chap.719 | |||||||||||||||||||||||||||||||||||||||||||||||||
12/20/2019 | approval memo.66 |
A05762 Committee Votes:
Gottfried | Aye | Raia | Aye | ||||||
Schimminger | Aye | McDonough | Aye | ||||||
Galef | Aye | Ra | Aye | ||||||
Dinowitz | Aye | Garbarino | Aye | ||||||
Cahill | Aye | Byrne | Aye | ||||||
Paulin | Aye | Byrnes | Aye | ||||||
Cymbrowitz | Aye | Ashby | Aye | ||||||
Gunther | Excused | ||||||||
Rosenthal | Aye | ||||||||
Hevesi | Excused | ||||||||
Jaffee | Aye | ||||||||
Steck | Aye | ||||||||
Abinanti | Aye | ||||||||
Braunstein | Aye | ||||||||
Kim | Aye | ||||||||
Solages | Aye | ||||||||
Bichotte | Aye | ||||||||
Barron | Aye | ||||||||
Sayegh | Aye | ||||||||
Weinstein | Aye | Barclay | Aye | ||||||
Lentol | Aye | Crouch | Aye | ||||||
Schimminger | Aye | Fitzpatrick | Aye | ||||||
Gantt | Excused | Hawley | Aye | ||||||
Glick | Aye | Malliotakis | Aye | ||||||
Nolan | Aye | Montesano | Aye | ||||||
Pretlow | Aye | Ra | Aye | ||||||
Perry | Excused | Blankenbush | Aye | ||||||
Colton | Aye | Palmesano | Aye | ||||||
Cook | Aye | Norris | Aye | ||||||
Cahill | Aye | ||||||||
Aubry | Aye | ||||||||
Thiele | Aye | ||||||||
Cusick | Excused | ||||||||
Ortiz | Aye | ||||||||
Benedetto | Aye | ||||||||
Weprin | Aye | ||||||||
Rodriguez | Aye | ||||||||
Ramos | Aye | ||||||||
Braunstein | Aye | ||||||||
McDonald | Aye | ||||||||
Rozic | Aye | ||||||||
Simotas | Aye | ||||||||
Dinowitz | Aye | ||||||||
Miller | Aye | ||||||||
Go to top
A05762 Floor Votes:
Yes
Abbate
Yes
Crespo
ER
Gantt
Yes
LiPetri
Yes
Perry
Yes
Simon
Yes
Abinanti
Yes
Crouch
Yes
Garbarino
Yes
Lupardo
Yes
Pheffer Amato
Yes
Simotas
Yes
Arroyo
Yes
Cruz
Yes
Giglio
Yes
Magnarelli
Yes
Pichardo
Yes
Smith
Yes
Ashby
Yes
Cusick
Yes
Glick
Yes
Malliotakis
Yes
Pretlow
Yes
Smullen
Yes
Aubry
Yes
Cymbrowitz
Yes
Goodell
Yes
Manktelow
Yes
Quart
Yes
Solages
Yes
Barclay
ER
Davila
Yes
Gottfried
Yes
McDonald
Yes
Ra
Yes
Stec
Yes
Barnwell
Yes
De La Rosa
Yes
Griffin
Yes
McDonough
Yes
Raia
Yes
Steck
Yes
Barrett
Yes
DenDekker
Yes
Gunther
Yes
McMahon
Yes
Ramos
Yes
Stern
Yes
Barron
Yes
DeStefano
Yes
Hawley
Yes
Mikulin
Yes
Raynor
Yes
Stirpe
Yes
Benedetto
Yes
Dickens
Yes
Hevesi
Yes
Miller B
Yes
Reilly
Yes
Tague
Yes
Bichotte
Yes
Dilan
Yes
Hunter
Yes
Miller MG
Yes
Reyes
Yes
Taylor
Yes
Blake
Yes
Dinowitz
Yes
Hyndman
Yes
Miller ML
Yes
Richardson
Yes
Thiele
Yes
Blankenbush
Yes
DiPietro
Yes
Jacobson
Yes
Montesano
Yes
Rivera
Yes
Titus
Yes
Brabenec
Yes
D'Urso
Yes
Jaffee
Yes
Morinello
Yes
Rodriguez
Yes
Vanel
Yes
Braunstein
Yes
Eichenstein
Yes
Jean-Pierre
Yes
Mosley
Yes
Romeo
Yes
Walczyk
Yes
Bronson
Yes
Englebright
Yes
Johns
Yes
Niou
Yes
Rosenthal D
Yes
Walker
Yes
Buchwald
Yes
Epstein
Yes
Jones
Yes
Nolan
Yes
Rosenthal L
Yes
Wallace
Yes
Burke
Yes
Fahy
Yes
Joyner
Yes
Norris
Yes
Rozic
Yes
Walsh
Yes
Buttenschon
Yes
Fall
Yes
Kim
Yes
O'Donnell
Yes
Ryan
Yes
Weinstein
Yes
Byrne
Yes
Fernandez
Yes
Kolb
Yes
Ortiz
Yes
Salka
Yes
Weprin
Yes
Byrnes
Yes
Finch
Yes
Lalor
Yes
Otis
Yes
Santabarbara
Yes
Williams
Yes
Cahill
Yes
Fitzpatrick
Yes
Lavine
ER
Palmesano
Yes
Sayegh
Yes
Woerner
Yes
Carroll
Yes
Friend
Yes
Lawrence
Yes
Palumbo
Yes
Schimminger
Yes
Wright
Yes
Colton
Yes
Frontus
Yes
Lentol
ER
Paulin
Yes
Schmitt
Yes
Zebrowski
Yes
Cook
Yes
Galef
Yes
Lifton
Yes
Peoples-Stokes
Yes
Seawright
Yes
Mr. Speaker
‡ Indicates voting via videoconference
A05762 Text:
Go to top STATE OF NEW YORK ________________________________________________________________________ 5762 2019-2020 Regular Sessions IN ASSEMBLY February 19, 2019 ___________ Introduced by M. of A. PAULIN, SAYEGH, ENGLEBRIGHT, GRIFFIN, FAHY, SIMON, BARCLAY, CROUCH, DeSTEFANO, JACOBSON, SCHMITT -- read once and referred to the Committee on Health AN ACT to amend the public health law, in relation to establishing the rare disease advisory council The People of the State of New York, represented in Senate and Assem- bly, do enact as follows: 1 Section 1. The public health law is amended by adding a new article 2 27-L to read as follows: 3 ARTICLE 27-L 4 RARE DISEASE ADVISORY COUNCIL 5 Section 2799-u. Rare disease advisory council. 6 § 2799-u. Rare disease advisory council. 1. There shall be established 7 within the department a rare disease advisory council to advise and 8 consult on policy matters relating to rare disease. For the purposes of 9 this section, rare disease shall mean any disease or condition that 10 affects less than 200,000 people in the United States. 11 2. The council shall be composed of twenty-one members consisting of: 12 seventeen members shall be appointed by the governor, two members shall 13 be appointed by the speaker of the assembly, and two members shall be 14 appointed by the temporary president of the senate. The governor shall 15 designate the commissioner, or his or her designee, as chair of the 16 council, and the superintendent of the department of financial services, 17 or his or her designee, as co-chair of the council. The council shall at 18 all times include in its membership the following, which shall be 19 appointed by the governor: two physicians licensed and practicing in the 20 state with experience researching, diagnosing, or treating rare 21 diseases; one registered nurse or advanced practice registered nurse 22 licensed and practicing in the state with experience treating rare 23 diseases; two hospital administrators from hospitals in the state that 24 provide care to persons diagnosed with a rare disease, one of whom must EXPLANATION--Matter in italics (underscored) is new; matter in brackets [] is old law to be omitted. LBD07491-01-9A. 5762 2 1 represent a hospital in which the scope of service focuses on rare 2 diseases of pediatric patients; three persons age eighteen or older who 3 either have a rare disease or are a caregiver of a person with a rare 4 disease; two representatives of a rare disease patient organization that 5 operates in the state; one pharmacist with experience with drugs used to 6 treat rare diseases; one representative of the biotechnology industry; 7 one representative of health insurance companies; one member of the 8 scientific community who is engaged in rare disease research; and one 9 genetic counselor with experience providing services to persons diag- 10 nosed with a rare disease or caregivers of those persons. 11 3. Members of the advisory council shall serve at the pleasure of the 12 appointing authority. Vacancies on the advisory council shall be filled 13 in the same manner as the original appointment. Members of the advisory 14 council shall receive no compensation for their services, but may be 15 reimbursed for necessary and actual expenses incurred in the performance 16 of their duties hereunder. 17 4. The advisory council shall meet at least three times in each calen- 18 dar year. The council shall meet at the request of its chairs. 19 5. The advisory council's duties may include, but are not limited to: 20 a. Convening public hearings, and receiving and considering reports 21 and testimony from individuals, the department, health care providers, 22 and public or private organizations recognized as having expertise in 23 rare diseases, as well as other interested parties, to assist the coun- 24 cil in developing recommendations under this section; 25 b. Studying the economic burden of the treatment of rare diseases with 26 regard to quality of care, health care coverage, and access to treatment 27 and services; 28 c. Developing recommendations pertaining to the impact of particular 29 health care coverage and the impact of particular coverage on the 30 provision of treatment and care services; 31 d. Identifying best practices for rare diseases that could improve 32 treatment of rare diseases in New York state; and 33 e. Developing a list of existing, publicly accessible resources on 34 research, diagnosis, treatment, coverage options, and education relating 35 to rare diseases, which shall be published on the department's website 36 upon completion. 37 6. The council shall prepare and submit a written report no later than 38 October first, two thousand twenty, and biennially thereafter, to the 39 governor, speaker of the assembly, and temporary president of the senate 40 that sets forth the findings and recommendations of the council on 41 matters within the scope of its duties as set forth in this section. 42 § 2. This act shall take effect immediately.