BILL ANALYSIS Ó
SENATE COMMITTEE ON APPROPRIATIONS
Senator Ricardo Lara, Chair
2015 - 2016 Regular Session
SB 1095 (Pan) - Newborn screening program
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|Version: February 17, 2016 |Policy Vote: HEALTH 9 - 0 |
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|Urgency: No |Mandate: No |
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|Hearing Date: May 9, 2016 |Consultant: Brendan McCarthy |
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This bill meets the criteria for referral to the Suspense File.
Bill
Summary: SB 1095 would require the Department of Public Health
to expand the existing newborn screening program to include any
condition that has been adopted by the federal Recommended
Uniform Screening Panel.
Fiscal
Impact:
One-time costs of $2.4 million and ongoing costs of $4.3
million per year to screen for two diseases (MPS-1 and Pompe
disease) that have already been approved for inclusion in the
federal Recommended Uniform Screening Panel (Genetic Disease
Testing Fund). The ongoing costs above would cover initial
screening tests, follow up tests for positive results, and
initial case management for confirmed diagnoses. Adding these
two conditions would require an increase in the existing $113
fee charged for screening by about $9. Most health insurance,
including Medi-Cal, cover the costs of the screening fee.
Ongoing costs of about $2.5 million per year for coverage of
the increased screening fee by the Medi-Cal program (General
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Fund and federal funds). Medi-Cal covers the cost of the
screening exam and Medi-Cal pays for about 50% of the births
in the state.
Unknown future costs to include additional diseases in the
state's newborn screening program as they are added to the
federal Recommended Uniform Screening Panel (Genetic Disease
Testing Fund). The costs to include additional diseases will
vary depending on the specific costs for testing of that
disease. In recent years, anticipated costs to include
additional diseases in the state's newborn screening program
have generally been in the low millions per condition, per
year.
Likely long-term savings due to improved clinical outcomes
from early testing and treatment (various funds). When
considering whether to include additional diseases in the
Recommended Uniform Screening Panel, the federal advisory
committee considers issues such as the reliability of the
screening test, the availability of treatments, the benefits
of early diagnosis, and the anticipated impact on health
outcomes from additional screening. Specific information about
the long-term impacts on health outcomes or avoided health
care costs are often not available, because the diseases that
are considered for inclusion are rare and treatments are
evolving rapidly. However, new diseases are added when the
advisory panel finds that there are benefits from screening,
primarily the ability to avoid long-term health consequences
with early intervention. Therefore, it is reasonable to
believe that including additional diseases that have been
approved by the federal government will reduce state health
care spending in the long-run.
Background: The Department of Public Health operates the Genetic Disease
Testing Program, which screens all newborns in the state for
more than 70 inherited conditions. Both the federal government
and the Department have advisory committees that make
recommendations on new conditions that should be added to the
federal screening guidelines and the state screening program.
When a recommendation for including a new disease in newborn
screening is made by the federal advisory committee, that
recommendation is sent to the federal Secretary of Health Human
Services. If the Secretary approves the recommendation, that
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disease is added to the federal Recommended Uniform Screening
Panel. States are not obligated to follow the Recommended
Uniform Screening Panel, but most states generally do so. The
California Newborn Screening Program tests for all of the
diseases on the Recommended Uniform Screening Panel, except for
two conditions added in the last few years, MPS-1 and Pompe
disease.
The Genetic Disease Testing Program is funded by a fee assessed
by the Department. Current law requires health plans and health
insurers (including the state's Medi-Cal program) to cover the
cost of the fee. The current fee for newborn screening is set at
$112.70.
Proposed Law:
SB 1095 would require the Department of Public Health to
expand the existing newborn screening program to include any
condition that has been adopted by the federal Recommended
Uniform Screening Panel.
Related
Legislation:
AB 170 (Gatto) would require specific information to be
provided by the Department of Public Health to parents
regarding the Newborn Screening Program and would give
parents more oversight over how collected samples are
handled. That bill is pending in the Senate Health
Committee.
AB 1559 (Pan, Statutes of 2015) added ALD to the Newborn
Screening Program, upon federal inclusion in the
Recommended Uniform Screening Panel.
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