BILL ANALYSIS
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THIRD READING
Bill No: ACR 117
Author: Hill (D), et al
Amended: 2/25/10 in Assembly
Vote: 21
WITHOUT REFERENCE TO COMMITTEE OR FILE
ASSEMBLY FLOOR : Read and adopted, 2/18/10
SUBJECT : Rare Disease Day
SOURCE : California Healthcare Institute
DIGEST : This resolution proclaims February 28, 2010, as
Rare Disease Day.
ANALYSIS : This resolution makes the following
legislative findings:
1. There are nearly 7,000 diseases and conditions
considered rare (each affecting fewer than 200,000
Americans).
2. While each of these diseases may affect small numbers of
people, rare diseases as a group affect almost 30
million Americans.
3. Many rare diseases are serious and debilitating
conditions that have a significant impact on the lives
of those affected.
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4. While approximately 360 orphan drugs and biologics have
been approved for the treatment of rare diseases
affecting between 11 and 14 million people according to
the United States Food and Drug Administration, that
leaves well over 15 million Americans affected by rare
diseases with no treatment specific to their disease.
5. Individuals and families affected by rare diseases often
experience problems such as a sense of isolation,
difficulty in obtaining an accurate and timely
diagnosis, few treatment options, and problems related
to accessing or being reimbursed for treatment.
6. Some rare diseases, such as Lou Gehrig's disease and
Huntington's disease, are relatively well known, many
others are not known at all by the public, making
patients and their families bear a large share of the
burden for fundraising and research.
7. Because nearly one in 10 Americans have a rare disease,
Californians are among those affected by those diseases.
8. The National Organization for Rare Disorders is
organizing a nationwide observance of Rare Disease Day
on February 28, 2010, on which patients, medical
professionals, researchers, government officials, and
companies developing treatments for rare diseases will
join together to focus attention on rare diseases as a
public health issue.
This resolution proclaims February 28, 2010, as Rare
Disease Day in California.
FISCAL EFFECT : Fiscal Com.: No
SUPPORT : (Verified 8/2/10)
California Healthcare Institute (source)
CTW:mw 8/2/10 Senate Floor Analyses
SUPPORT/OPPOSITION: SEE ABOVE
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