BILL ANALYSIS Ó
AB 1559
Page 1
CONCURRENCE IN SENATE AMENDMENTS
AB 1559 (Pan)
As Amended August 21, 2014
Majority vote
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|ASSEMBLY: |79-0 |(May 28, 2014) |SENATE: |34-0 |(August 25, |
| | | | | |2014) |
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Original Committee Reference: HEALTH
SUMMARY : Requires the Department of Public Health (DPH) to
expand statewide screening of newborns to include screening for
adrenoleukodystrophy (ALD) as soon as the addition is approved
by the federal Recommended Uniform Screening Panel.
The Senate amendments specify that DPH will begin testing for
ALD upon federal approval.
EXISTING LAW : Requires DPH to establish a genetic disease unit
to coordinate all DPH programs in the area of genetic disease
that will promote a statewide program of information, testing,
and counseling services and to have the responsibility of
designating tests and regulations to be used in executing this
program and to have the responsibility of designating tests and
regulations to be used in executing the California Newborn
Screening Program (CNSP).
AS PASSED BY THE ASSEMBLY , this bill required DPH to expand
statewide screening of newborns to include screening for ALD as
soon as possible.
FISCAL EFFECT (as approved on August 14, 2014) :
1)One-time costs of about $2 million for technical and
administrative activities to add ALD to the newborn screening
program (Genetic Disease Testing Fund).
2)Annual screening costs of $4.7 million per year, covered by
fees (Genetic Disease Testing Fund). Adding ALD to the
newborn screening program would require DPH to raise the fee
charged for screening by $11 per birth.
3)Increased costs or about $2.6 million per year to the Medi-Cal
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program to pay the fees charged to support the newborn
screening program for births paid for by Medi-Cal (General
Fund and federal funds).
4)Increased costs of about $50,000 per year to California Public
Employees' Retirement System (CalPERS) to pay the fees charged
to support the newborn screening program for births paid for
by CalPERS (various funds).
5)Likely long-term savings due to improved clinical outcomes
from early testing and treatment (various funds). According
to information provided by physicians treating children with
ALD, clinical outcomes can be greatly improved by early
diagnosis and treatment. Without screening for ALD, a
diagnosis often is not made until serious symptoms have
occurred. At that point, treatment is much less effective and
the child is at high risk for death or permanent disability.
On the other hand, if treatment is provided at the first sign
that ALD is occurring (through a magnetic resonance imaging
diagnosis, before clinical symptoms are observed) long-term
outcomes are greatly improved.
COMMENTS : According to the author, ALD is an X-chromosome
genetic disorder that is passed down from mother to son and once
symptoms show, it progresses quickly and it is usually too late
to do anything meaningful to save the boy. The author further
states that our knowledge about and ability to combat the
disease has increased greatly in the last couple decades,
including treatments that can cure patients if caught early
enough and this makes it imperative, medically and morally, that
we catch the disease as early as humanly possible - which makes
ALD the perfect candidate for newborn screening.
In 1966, California began its CNSP with the testing of
phenylketonuria. Since its creation, the CNSP has been expanded
several times as new discoveries are made and tests developed
and now screens for more than 70 disorders. Diseases have been
added through regulation and legislation.
Currently only New York and Connecticut screen newborns for ALD.
However, on January 16, 2014, the federal Discretionary
Advisory Committee on Heritable Disorders in Newborns and
Children, which advises the Secretary of the United States
Department of Health and Human Services on the most appropriate
application of universal newborn screening tests, technologies,
policies, guidelines, and standards, approved ALD for review to
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add the disease as a core condition for recommended screening of
all newborns in the United States The review process should
take approximately two years before a final decision is made.
According to the California Department of Health Care Services,
between 2004 and 2013, the cost of treating 22 children with the
disease in the California Children's Services program was
slightly more than $100,000 per child, during that nine-year
period.
ALD is a rare X-chromosome genetic disorder (which affects
mostly boys) that can cause injury to the brain, nerves, and
adrenal glands. People with ALD do not generate enough of the
protein that breaks down very long chain fatty acids (VLCFA).
The myelin sheath, which acts as insulation around the nerves,
is made up of these fatty acids; buildup of the VLCFA prevents
the brain from communicating with the body. The first signs of
ALD are behavioral and it is often misdiagnosed as attention
deficit disorder, but it rapidly leads to a vegetative state and
ultimately death. The childhood form is the most severe and
affects boys between the ages of four and eight years old. The
slightly milder adult version affects men in their 20s and 30s.
Unless treated before symptoms show, children affected with ALD
will die within a few months to a few years. Early detection
and treatment provides dramatically better quality of life for
the affected individuals and their families. Cord blood and
bone marrow transplants performed at a very early stage in the
disease have proven to treat and heal the patient, enabling a
healthy and long life.
Analysis Prepared by : Lara Flynn / HEALTH / (916) 319-2097
FN: 0005374