BILL ANALYSIS
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Date of Hearing: June 22, 2010
ASSEMBLY COMMITTEE ON HEALTH
William W. Monning, Chair
SJR 23 (Simitian) - As Amended: June 15, 2010
SENATE VOTE : 32-0
SUBJECT : Mitochondrial disease: federal support for research.
SUMMARY : Urges the President and Congress to support research
for mitochondrial disease and makes various findings and
declarations relating to mitochondrial disease.
EXISTING LAW :
1)Establishes the National Institutes of Health (NIH) within the
United States Department of Health and Human Services to
conduct and support medical research.
2)Establishes the state Department of Public Health to, among
other things, research various public health problems, collect
and manage relevant health data, and award grants.
FISCAL EFFECT : None
COMMENTS :
1)PURPOSE OF THIS RESOLUTION . According to the author, this
resolution is intended to urge the President and Congress to
significantly expand support for mitochondrial research and
improve public understanding of mitochondrial dysfunction by
complementing efforts at the federal level to draw attention
to mitochondrial disease research and treatment.
2)BACKGROUND . Mitochondria are specialized compartments present
in every cell of the body, except red blood cells, that are
responsible for creating most of the energy needed by the body
to sustain life and support growth. According to information
from the United Mitochondrial Disease Foundation,
mitochondrial disease results from failures of the
mitochondria to generate energy within the cell. If this
process is repeated throughout the body, whole systems begin
to fail, and the life of the person in whom this is happening
is severely compromised. Diseases of the mitochondria cause
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the most damage to cells of the brain, heart, liver, skeletal
muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss
of motor control, muscle weakness and pain, gastro-intestinal
disorders and swallowing difficulties, poor growth, cardiac
disease, liver disease, diabetes, respiratory complications,
seizures, visual or hearing problems, developmental delays,
and susceptibility to infection. The National Institute of
Environmental Health Sciences reports that half of those
affected by mitochondrial disease are children who show
symptoms before age five and approximately 80% of these
children will not survive beyond the age of 20. There is no
treatment or cure for any of these rare diseases.
3)NIH OFFICE OF RARE DISEASES RESEARCH . The Office of Rare
Diseases Research (ORDR) was established in 1993 within NIH to
coordinate and support research to respond to the needs of
patients who have any one of the more than 6,800 rare diseases
known today. Among other things, the ORDR advises NIH on an
agenda for conducting rare diseases research and reports to
Congress and the public about NIH-supported scientific rare
diseases research advances and future plans; identifies and
responds to scientific opportunities and builds international
research collaborations; supports a program to develop new
genetic tests that are made available to the public;
cosponsors the Genetic and Rare Diseases Information Center;
and, provides opportunities for patient support groups to
become partners with the NIH, to better understand NIH
research programs, and to gain better access to NIH research
opportunities. The NIH reports that many of its institutes
are currently supporting research relevant to mitochondrial
function and dysfunction; it has committed to establishing a
mitochondrial research initiative that would involve all NIH
institutes, and has awarded grant funding for mitochondrial
research.
4)RECENT FEDERAL ACTION . Two measures introduced in Congress in
2009, H.R. 3502 (McDermott) and S. 2858 (Boxer) seek to
establish a separate Office of Mitochondrial Medicine (Office)
at NIH. The Office would be tasked with developing a plan to
improve coordination of research related to mitochondrial
medicine among the national research institutes and between
the NIH and outside researchers. It would also be responsible
for providing training to scientists, health professionals,
and health care providers on research and diagnosis of
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mitochondrial disease and dysfunction. Additionally, the
Office would be required to annually award grants for these
purposes and establish Mitochondrial Medicine Centers of
Excellence. Lastly, the Office would be responsible for
creating a national registry to maintain and share medical
information collected from patients with mitochondrial disease
and dysfunction, and a national biorepository to collect
tissues and DNA from these patients for the purpose of
furthering research efforts.
5)PRIOR LEGISLATION . ACR 25 (Miller), Resolution Chapter 15,
Statutes of 2009, proclaims the third week of September as
Mitochondrial Disease Awareness Week.
6)SUPPORT . The Association of Regional Center Agencies writes
that it fully supports additional federal funds to conduct
more extensive research into the causes of mitochondrial
diseases and dysfunctions associated with such disorders as
Parkinson's, Alzheimer's and autism because additional
research could help stem the rise of these disorders.
REGISTERED SUPPORT / OPPOSITION :
Support
Association of Regional Center Agencies
Numerous individuals
Opposition
None on file.
Analysis Prepared by : Cassie Rafanan / HEALTH / (916)
319-2097