BILL ANALYSIS
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|SENATE RULES COMMITTEE | SJR 23|
|Office of Senate Floor Analyses | |
|1020 N Street, Suite 524 | |
|(916) 651-1520 Fax: (916) |Version: |
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UNFINISHED BUSINESS
Bill No: SJR 23
Author: Simitian (D), et al
Amended: 6/15/10
Vote: 21
SENATE HEALTH COMMITTEE : 9-0, 5/5/10
AYES: Alquist, Strickland, Aanestad, Cedillo, Cox, Leno,
Negrete McLeod, Pavley, Romero
ASSEMBLY FLOOR : 71-3, 8/2/10 - See last page for vote
SUBJECT : Mitochondrial disease: federal support for
research
SOURCE : Author
DIGEST : This resolution urges the President and Congress
of the United States to take action necessary to support
research for mitochondrial disease.
Assembly Amendments were technical and add co-authors.
ANALYSIS : Existing federal law establishes the National
Institutes of Health (NIH) within the United States
Department of Health and Human Services for the purposes of
conducting and supporting medical research.
Existing state law establishes the Department of Public
Health within the California Health and Human Services
Agency to, among other things, research various public
CONTINUED
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health problems, collect and manage relevant health data,
and award grants.
This resolution urges the President and Congress to take
action necessary to amend federal statutes to support
research for mitochondrial disease.
This resolution makes findings and declarations regarding
mitochondrial diseases.
Background
Mitochondrial disease . Mitochondria are cell components
that generate energy for the cell. Each cell in the body
contains anywhere from dozens to hundreds of mitochondria,
which are responsible for creating more than 90 percent of
the energy needed by the body to sustain life and support
growth. According to the NIH, mitochondrial diseases are
caused by abnormal genes that lead to flawed proteins or
other molecules in the mitochondria. When they fail, less
and less energy is generated within the cell. Cell injury
and cell death can follow.
Depending on which cells are affected, people with
mitochondrial diseases may have muscle weakness and pain,
digestive problems, heart disease, seizures and many other
symptoms. Hardest hit are organs and tissues that need a
lot of energy, like muscles, brain, heart, kidneys and
liver. When the energy supply slumps, cells can become
damaged or destroyed. There is no treatment or cure for
any of these rare diseases.
There are estimated to be tens of thousands of people
affected by mitochondrial disease in the United States.
Because the symptoms vary widely, mitochondrial diseases
are often mistaken for other conditions. There are dozens
of types of mitochondrial diseases, with each affecting
less than one in 1,500 people. The various types are
caused by alterations in different genes, leading to
worn-down cells in different parts of the body. These
diseases affect both children and adults, and sometimes
lead to early death.
Congressional legislation . H.R. 3502 (McDermott) was
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introduced in the United States House of Representatives in
July 2009, and seeks to amend the Public Health Service Act
to establish an Office of Mitochondrial Medicine (Office)
at the NIH. S. 2858 (Boxer) was introduced in the United
States Senate in December 2009, and is nearly identical to
H.R. 3502.
The purpose of the Acts is to promote research aimed at
improved understanding of mitochondrial disease and
dysfunction and the development of treatments for
mitochondrial disease. The Office would be responsible for
developing a plan to improve coordination of research
related to mitochondrial medicine among the national
research institutes and between the NIH and outside
researchers. The Office would provide training to
scientists, health professionals, and health care providers
on research and diagnosis of mitochondrial disease and
dysfunction, and will annually award a minimum number of
grants to further these purposes and to establish
Mitochondrial Medicine Centers of Excellence. The Office
would also establish a national registry for the
maintenance and sharing for research purposes of medical
information collected from patients with mitochondrial
disease and dysfunction, and a national biorepository to
collect tissues and DNA.
NIH . The NIH is the federal focal point for biomedical
research. The Office of Rare Diseases Research (ORDR) was
established in 1993 within the Office of the Director of
NIH to coordinate and support rare diseases research and to
provide information on rare diseases. A rare disease is
any disease or condition affecting fewer than 200,000
persons in the United States. According to the ORDR, there
are over 6,800 rare diseases known today affecting an
estimated 25 to 30 million people in the United States.
According to the Secretary of Health and Human Services,
many institutes at the NIH are currently supporting
research relevant to mitochondrial function and
dysfunction. NIH has committed to establish a
mitochondrial research initiative that would involve all
NIH institutes, and has awarded grant funding for
mitochondrial research.
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Comments
According to the author's office, the intent of this
resolution is to urge the President and Congress to
significantly expand support for mitochondrial research and
improve our understanding of mitochondrial dysfunction by
passing H.R. 3502 and S. 2858, related to mitochondrial
disease research and treatment.
FISCAL EFFECT : Fiscal Com.: No
SUPPORT : (Verified >)
>
OPPOSITION : (Verified >)
>
ARGUMENTS IN SUPPORT : >
ARGUMENTS IN OPPOSITION : >
ASSEMBLY FLOOR :
AYES: Adams, Ammiano, Arambula, Bass, Beall, Bill
Berryhill, Blakeslee, Block, Blumenfield, Bradford,
Brownley, Buchanan, Charles Calderon, Carter, Chesbro,
Cook, Coto, Davis, De La Torre, De Leon, Eng, Evans,
Feuer, Fletcher, Fong, Fuentes, Fuller, Furutani, Gaines,
Galgiani, Garrick, Gatto, Gilmore, Hagman, Hall, Harkey,
Hayashi, Hernandez, Hill, Huber, Huffman, Jeffries,
Jones, Lieu, Logue, Bonnie Lowenthal, Ma, Mendoza,
Miller, Monning, Nava, Nestande, Niello, Nielsen, V.
Manuel Perez, Portantino, Ruskin, Salas, Saldana, Silva,
Skinner, Solorio, Audra Strickland, Swanson, Torlakson,
Torres, Torrico, Tran, Villines, Yamada, John A. Perez
NOES: Anderson, Knight, Norby
NO VOTE RECORDED: Tom Berryhill, Caballero, Conway,
DeVore, Smyth, Vacancy
RJG:mw 8/3/10 Senate Floor Analyses
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SUPPORT/OPPOSITION: SEE ABOVE
SUPPORT/OPPOSITION: NONE RECEIVED
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