BILL ANALYSIS �
Senate Appropriations Committee Fiscal Summary
Senator Kevin de Le�n, Chair
SB 224 (Walters) - Newborn screening program.
Amended: As introduced Policy Vote: Health 9-0
Urgency: No Mandate: No
Hearing Date: May 23, 2013 Consultant: Brendan McCarthy
SUSPENSE FILE. AS PROPOSED TO BE AMENDED.
Bill Summary: SB 224 would require the Department of Public
Health to expand the existing newborn screening program to
include screening for two additional conditions - Hurler
Syndrome (MPS 1) and Krabbe disease.
Fiscal Impact:
One-time costs to the Department of Public Health to
upgrade information technology systems and adopt regulations
of about $210,000 (Genetic Disease Testing Fund).
Ongoing costs to expand newborn screening of about $880,000
per year, covered by fees (Genetic Disease Testing Fund).
Increased costs to Medi-Cal of $400,000 per year for
testing fees (50% General Fund, 50% federal funds).
Earlier diagnosis of infants covered by public health care
programs with one of these conditions may result in
increased costs, to the extent that ongoing treatments such
as enzyme replacement therapy begin earlier than they would
without screening for these conditions. The extent to which
this will actually increase costs is unknown.
Whether early screening and diagnosis will improve medical
outcomes and reduce future treatment costs to public
healthcare programs is unknown, given the limited
information available on treatment outcomes.
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
SB 224 (Walters)
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recommendations on new conditions that should be added to the
federal screening guidelines and the state screening program.
The Genetic Disease Testing Program is funded by fees assessed
on health plans and insurers (or the individual) for each birth
in the state. The current fee for newborn screening is set at
$112.70.
Proposed Law: SB 224 would require the Department of Public
Health to expand the existing newborn screening program to
include screening for two additional conditions - Hurler
Syndrome (MPS 1) and Krabbe disease. This additional screening
requirement would sunset on January 1, 2019.
Related Legislation:
SB 1072 (Strickland) of 2012 was identical to this bill.
That bill was held on this committee's Suspense File.
AB 395 (Pan) Chapter 461 of 2011 added severe combined
immunodeficiency to the newborn screening test.
Staff Comments: Under current law, the Department is authorized
to increase the fee associated with newborn screening to cover
the costs of the program. Based on staff estimates of potential
cost increases, the current fee would have to be raised by about
$7 per birth (with an additional increase of about $4 per birth
for the first three years to pay for information technology
upgrades). Medi-Cal and other public health care programs that
pay for labor and delivery costs would be required to pay the
additional fees.
At this time, the long-term efficacy of the available treatments
for these two conditions (including enzyme replacement therapy
and stem cell or bone marrow transplantation) is not well
documented. In addition, early screening for these conditions
will likely identify individuals that may only manifest symptoms
later in life. Therefore, it is not possible to determine
whether early diagnosis of these conditions will either improve
health outcomes or reduce overall health care costs.
Neither the advisory committee to the federal Health and Human
Services Agency nor the advisory committee to the Department of
Public Health have recommending including these conditions in
newborn screening programs at this time.
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Proposed author's amendments: would limit the bill to a pilot
project in one county.