SCR 108: Rare Disease Day.
- Session Year: 2015-2016
- House: Senate
- Latest Version Date: 2016-05-04
This measure would proclaim February 29, 2016, as Rare Disease Day in California and would provide for the recognition of Rare Disease Day in California in subsequent years, as specified.
This measure would proclaim February 29, 2016, as Rare Disease Day in California and would provide for the recognition of Rare Disease Day in California in subsequent years, as specified.
This measure would proclaim February 29, 2016, as Rare Disease Day in California and would provide for the recognition of Rare Disease Day in California in subsequent years, as specified.
This measure would proclaim February 29, 2016, as Rare Disease Day in California and would provide for the recognition of Rare Disease Day in California in subsequent years, as specified.
This measure would proclaim February 29, 2016, as Rare Disease Day in California and provide for the recognition of Rare Disease Day in California in subsequent years, as specified.
WHEREAS, There are nearly 7,000 diseases and conditions that are considered rare, each affecting fewer than 200,000 Americans, according to the National Institutes of Health; and
WHEREAS, While each of these diseases may affect a small number of people, rare diseases as a group affect almost 30 million Americans; and
WHEREAS, Many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and
WHEREAS, While more than 450 drugs and biologics have been approved for the treatment of rare diseases, according to the United States Food and Drug Administration, millions of Americans still have rare diseases for which there is no approved treatment; and
WHEREAS, Individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services; and
WHEREAS, While the public is familiar with some rare diseases, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments; and
WHEREAS, Residents of California are among those affected by rare diseases because nearly one in 10 Americans have rare diseases; and
WHEREAS, Every year on the last day of February a nationwide observance of rare diseases is organized with patients, medical professionals, researchers, government officials, and companies developing treatments for rare diseases; and
WHEREAS, This years national Rare Disease Day observance will take place on February 29, 2016; now, therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature hereby proclaims February 29, 2016, as Rare Disease Day in California; and be it further
Resolved, That every year thereafter the Legislature shall recognize Rare Disease Day in California on the last day of February; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.
WHEREAS, There are nearly 7,000 diseases and conditions that are considered rare, each affecting fewer than 200,000 Americans, according to the National Institutes of Health; and
WHEREAS, While each of these diseases may affect a small number of people, rare diseases as a group affect almost 30 million Americans; and
WHEREAS, Many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and
WHEREAS, While more than 450 drugs and biologics have been approved for the treatment of rare diseases, according to the United States Food and Drug Administration, millions of Americans still have rare diseases for which there is no approved treatment; and
WHEREAS, Individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services; and
WHEREAS, While the public is familiar with some rare diseases, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments; and
WHEREAS, Residents of California are among those affected by rare diseases because nearly one in 10 Americans have rare diseases; and
WHEREAS, Every year on the last day of February a nationwide observance of rare diseases is organized with patients, medical professionals, researchers, government officials, and companies developing treatments for rare diseases; and
WHEREAS, This years national Rare Disease Day observance will take place on February 29, 2016; now, therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature hereby proclaims February 29, 2016, as Rare Disease Day in California; and be it further
Resolved, That every year thereafter the Legislature shall recognize Rare Disease Day in California on the last day of February; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.
WHEREAS, There are nearly 7,000 diseases and conditions that are considered rare, each affecting fewer than 200,000 Americans, according to the National Institutes of Health; and
WHEREAS, While each of these diseases may affect a small number of people, rare diseases as a group affect almost 30 million Americans; and
WHEREAS, Many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and
WHEREAS, While more than 450 drugs and biologics have been approved for the treatment of rare diseases, according to the United States Food and Drug Administration, millions of Americans still have rare diseases for which there is no approved treatment; and
WHEREAS, Individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services; and
WHEREAS, While the public is familiar with some rare diseases, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments; and
WHEREAS, Residents of California are among those affected by rare diseases because nearly one in 10 Americans have rare diseases; and
WHEREAS, Every year on the last day of February a nationwide observance of rare diseases is organized with patients, medical professionals, researchers, government officials, and companies developing treatments for rare diseases; and
WHEREAS, This years national Rare Disease Day observance will take place on February 29, 2016; now, therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature hereby proclaims February 29, 2016, as Rare Disease Day in California; and be it further
Resolved, That every year thereafter the Legislature shall recognize Rare Disease Day in California on the last day of February; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.
WHEREAS, There are nearly 7,000 diseases and conditions that are considered rare, each affecting fewer than 200,000 Americans, according to the National Institutes of Health; and
WHEREAS, While each of these diseases may affect a small numbers number of people, rare diseases as a group affect almost 30 million Americans; and
WHEREAS, Many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and
WHEREAS, While more than 450 drugs and biologics have been approved for the treatment of rare diseases, according to the United States Food and Drug Administration, millions of Americans still have rare diseases for which there is no approved treatment; and
WHEREAS, Individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services; and
WHEREAS, While the public is familiar with some rare diseases, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments; and
WHEREAS, Residents of California are among those affected by rare diseases because nearly one in 10 Americans have rare diseases; and
WHEREAS, Every year on the last day of February a nationwide observance of rare diseases is organized with patients, medical professionals, researchers, government officials, and companies developing treatments for rare diseases; and
WHEREAS, This years national Rare Disease Day observance will take place on February 29, 2016; now, therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature hereby proclaims February 29, 2016, as Rare Disease Day in California; and be it further
Resolved, That every year thereafter the Legislature shall recognize Rare Disease Day in California on the last day of February; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.
WHEREAS, There are nearly 7,000 diseases and conditions that are considered rare, each affecting fewer than 200,000 Americans, according to the National Institutes of Health; and
WHEREAS, While each of these diseases may affect small numbers of people, rare diseases as a group affect almost 30 million Americans; and
WHEREAS, Many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and
WHEREAS, While more than 450 drugs and biologics have been approved for the treatment of rare diseases, according to the United States Food and Drug Administration, millions of Americans still have rare diseases for which there is no approved treatment; and
WHEREAS, Individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services; and
WHEREAS, While the public is familiar with some rare diseases, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments; and
WHEREAS, Residents of California are among those affected by rare diseases because nearly one in 10 Americans have rare diseases; and
WHEREAS, Every year on the last day of February a nationwide observance of rare diseases is organized with patients, medical professionals, researchers, government officials, and companies developing treatments for rare diseases; and
WHEREAS, This years national Rare Disease Day observance will take place on February 29, 2016; now, therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature hereby proclaims February 29, 2016, as Rare Disease Day in California; and be it further
Resolved, That every year thereafter the Legislature shall recognize Rare Disease Day in California on the last day of February; and be it further
Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.
|
Date
|
Status
|
|---|---|
| Feb 12, 2016 | Introduced. Referred to Com. on RLS. |
| Feb 24, 2016 | From committee: Ordered to third reading. |
| Feb 29, 2016 | In Assembly. Held at Desk. |
| Feb 29, 2016 | Read. Adopted. (Ayes 40. Noes 0. Page 3146.) Ordered to the Assembly. |
| Feb 29, 2016 | Read. Adopted. (Ayes 40. Noes 0.) Ordered to the Assembly. |
| Apr 11, 2016 | Referred to Com. on RLS. |
| Apr 12, 2016 | From committee with author's amendments. Read second time and amended. Re-referred to Com. on RLS. |
| Apr 14, 2016 | From committee: Be adopted. Ordered to third reading. (Ayes 11. Noes 0.) (April 14). |
| Apr 25, 2016 | Read. Amended. Adopted. Ordered to the Senate. |
| Apr 25, 2016 | Read. Amended. Adopted. (Page 4502.) Ordered to the Senate. |
| Apr 26, 2016 | In Senate. Concurrence in Assembly amendments pending. |
| Apr 28, 2016 | Assembly amendments concurred in. (Ayes 37. Noes 0. Page 3708.) Ordered to engrossing and enrolling. |
| Apr 28, 2016 | Assembly amendments concurred in. (Ayes 37. Noes 0.) Ordered to engrossing and enrolling. |
| May 4, 2016 | Chaptered by Secretary of State. Res. Chapter 30, Statutes of 2016. |
| May 4, 2016 | Enrolled and filed with the Secretary of State at 3 p.m. |
|
Date
|
Description
|
Location
|
Votes
|
|
|---|---|---|---|---|
| Apr 28, 2016 | Unfinished Business SCR108 Monning Concurrence | Senate Floor |
Passed |
|
| Apr 14, 2016 | Be adopted. To third reading. | Assembly Standing Committee on Rules |
Passed |
|
| Feb 29, 2016 | Senate 3rd Reading SCR108 Monning | Senate Floor |
Passed |
This list shows positions taken on this bill by organizations on the date displayed, which is linked to the original source.
Positions by individuals are not included.
|
Organization
|
Position
|
Date
|
|---|---|---|
| Bayer | ** Support | Apr 25, 2016 |
| California Life Sciences Association | ** Support | Apr 25, 2016 |
| International Pemphigus Pemphigoid Foundation | ** Support | Feb 29, 2016 |
| National Organization for Rare Disorders | ** Support | Feb 29, 2016 |
Office of Senate Floor Analyses (916) 651-1520 Fax: (916) 327-4478 | SCR 108 |
UNFINISHED BUSINESS
Bill No: SCR 108
Amended: 4/25/16
SENATE FLOOR: 40-0, 2/29/16
AYES: Allen, Anderson, Bates, Beall, Berryhill, Block, Cannella, De León, Fuller, Gaines, Galgiani, Glazer, Hall, Hancock, Hernandez, Hertzberg, Hill, Hueso, Huff, Jackson, Lara, Leno, Leyva, Liu, McGuire, Mendoza, Mitchell, Monning, Moorlach, Morrell, Nguyen, Nielsen, Pan, Pavley, Roth, Runner, Stone, Vidak, Wieckowski, Wolk
ASSEMBLY FLOOR: Read and adopted, 4/25/16
DIGEST:
This resolution proclaims February 29, 2016, as Rare Disease Day in California.
Assembly Amendments make technical changes and add co-authors.
ANALYSIS: This resolution makes the following legislative findings:
- There are nearly 7,000 diseases and conditions that are considered rare, each affecting fewer than 200,000 Americans, according to the National Institutes of Health. While each of these diseases may affect a small number of people, rare diseases as a group affect almost 30 million Americans.
- Individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services.
- While the public is familiar with some rare diseases, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments.
- Residents of California are among those affected by rare diseases because nearly one in 10 Americans have rare diseases.
This resolution proclaims February 29, 2016, as Rare Disease Day in California, and provides that every year thereafter the Legislature shall recognize Rare Disease Day in California on the last day of February.
FISCAL EFFECT: Appropriation: No Fiscal Com.: No Local: No
Bayer
California Life Sciences Association
International Pemphigus Pemphigoid Foundation
National Organization for Rare Disorders
OPPOSITION: (Verified 4/26/16)
None received
Prepared by: Jonas Austin / SFA / (916) 651-1520
4/27/16 15:57:37
**** END ****
SENATE THIRD READING
STR Bill Id:SCR 108
Author:(Monning)
As Amended Ver:April 12, 2016
Majority vote
SENATE VOTE: 40-0
Committee | Votes | Ayes | Noes |
Rules | 11-0 | Gordon, Chang, Brough, Cooley, Gomez, Holden, Jones, Mullin, Quirk, Rodriguez, Waldron |
SUMMARY: Proclaims February 29, 2016, as Rare Disease Day in California and would provide for the recognition of Rare Disease Day in California in subsequent years, as specified. Specifically, this resolution makes the following legislative findings:
- There are nearly 7,000 diseases and conditions that are considered rare; and, rare diseases as a group affect almost 30 million Americans.
- Many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and, individuals and their families affected by rare diseases struggle with obtaining an accurate and timely diagnosis, few, if any treatment options, and problems related to accessing or being reimbursed for treatment.
- Nearly one in 10 Americans has a rare disease, Californians are among those affected by those diseases.
- Every year on the last day of February a nationwide observance of rare diseases is organized with patients, medical professionals, researchers, government officials, and companies developing treatments for rare diseases.
FISCAL EFFECT: None
Analysis Prepared by: Nicole Willis / RLS. / (916) 319-2800 FN: 0002745
Date of Hearing: April 14, 2016
ASSEMBLY COMMITTEE ON
, Chair
SBPCA Bill Id:
Author:() – As Ver:April 12, 2016
SENATE VOTE: 40-0
SUBJECT:
SUMMARY: Proclaims February 29, 2016, as Rare Disease Day in California and would provide for the recognition of Rare Disease Day in California in subsequent years, as specified. Specifically, this resolution makes the following legislative findings:
- There are nearly 7,000 diseases and conditions that are considered rare; and, rare diseases as a group affect almost 30 million Americans.
- Many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected; and, individuals and their families affected by rare diseases struggle with obtaining an accurate and timely diagnosis, few, if any treatment options, and problems related to accessing or being reimbursed for treatment.
- Nearly one in 10 Americans has a rare disease, Californians are among those affected by those diseases.
- Every year on the last day of February a nationwide observance of rare diseases is organized with patients, medical professionals, researchers, government officials, and companies developing treatments for rare diseases.
FISCAL EFFECT: None
REGISTERED SUPPORT / OPPOSITION:
Support
Bayer
California Life Sciences Association
Opposition
None on file
Analysis Prepared by:
Office of Senate Floor Analyses (916) 651-1520 Fax: (916) 327-4478 | SCR 108 |
THIRD READING
Bill No: SCR 108
Introduced: 2/12/16
SOURCE: National Organization for Rare Disorders
DIGEST:
This resolution proclaims February 29, 2016, as Rare Disease Day in California.
ANALYSIS: This resolution makes the following legislative findings:
- There are nearly 7,000 diseases and conditions that are considered rare, each affecting fewer than 200,000 Americans, according to the National Institutes of Health. While each of these diseases may affect small numbers of people, rare diseases as a group affect almost 30 million Americans.
- Individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services.
- While the public is familiar with some rare diseases, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments.
- Residents of California are among those affected by rare diseases because nearly one in 10 Americans have rare diseases.
This resolution proclaims February 29, 2016, as Rare Disease Day in California, and provides that every year thereafter the Legislature shall recognize Rare Disease Day in California on the last day of February.
FISCAL EFFECT: Appropriation: No Fiscal Com.: No Local: No
National Organization for Rare Disorders (source)
International Pemphigus Pemphigoid Foundation
OPPOSITION: (Verified 2/22/16)
None received
Prepared by: Jonas Austin / SFA / (916) 651-1520
2/24/16 15:59:37
**** END ****
Discussed in Hearing
View Older Hearings
Bill Author
Bill Co-Author(s):
