BILL ANALYSIS
SENATE HEALTH
COMMITTEE ANALYSIS
Senator Elaine K. Alquist, Chair
BILL NO: SJR 23
S
AUTHOR: Simitian
J
AMENDED: April 29, 2010
R
HEARING DATE: May 5, 2010
CONSULTANT:
2
Orr/cjt
3
SUBJECT
Mitochondrial disease: federal support for research
SUMMARY
Urges the President and Congress to amend federal statutes
to support research for mitochondrial disease.
CHANGES TO EXISTING LAW
Existing federal law:
Establishes the National Institutes of Health (NIH) within
the U.S. 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 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.
Makes findings and declarations regarding mitochondrial
diseases.
Continued---
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FISCAL IMPACT
This resolution is keyed nonfiscal.
BACKGROUND AND DISCUSSION
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.
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 U.S. 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 1 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.
STAFF ANALYSIS OF SENATE JOINT RESOLUTION 23 Page
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Current bills in Congress
H.R. 3502 (McDermott) was introduced in the U.S. 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 National Institutes of Health. S.
2858 (Boxer) was introduced in the U.S. 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.
National Institutes of Health
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 the 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 U.S. According to the ORDR, there are over 6,800
rare diseases known today, affecting an estimated 25 to 30
million people in the U.S.
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,
STAFF ANALYSIS OF SENATE JOINT RESOLUTION 23 Page
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and has awarded grant funding for mitochondrial research.
Prior legislation
ACR 25 (Miller), Chapter 15, Statutes of 2009, proclaims
the third week in September as Mitochondrial Disease
Awareness Week.
POSITIONS
Support: 384 individuals
Oppose: None
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