BILL ANALYSIS Ó
AB 395
Page 1
Date of Hearing: May 4, 2011
ASSEMBLY COMMITTEE ON APPROPRIATIONS
Felipe Fuentes, Chair
AB 395 (Pan) - As Amended: April 7, 2011
Policy Committee: HealthVote:15-1
Urgency: No State Mandated Local Program:
No Reimbursable: No
SUMMARY
This bill adds Severe Combined Immunodeficiency (SCID) to the
list of genetic diseases screened for in California's Newborn
Screening (NBS) Program.
FISCAL EFFECT
1)Annual estimated screening costs to the Department of Public
Health NBS Program statewide of $5 million (special fund).
This test is estimated to cost $9.50 per child.
2)Annual estimated screening costs to the Medi-Cal program of
$2.2 million (50% General Fund (GF)). Medi-Cal pays for
approximately 45% of the births in the state, and reimburses
the NBS Program for screening costs associated with Medi-Cal
births. In addition, annual treatment costs to the Medi-Cal
program for babies diagnosed with SCID are estimated to be in
the range of $250,000 annually (50% GF).
3)Annual treatment cost savings to the Medi-Cal program from
early detection of SCID, potentially in the range of $1-2
million annually (50% GF). In the absence of early detection,
treatment costs for the handful of newborns in the Medi-Cal
program with SCID annually are highly variable and can be
significant, depending on the time of diagnosis, whether they
are diagnosed before succumbing to lethal opportunistic
infections, and whether and when treatment is attempted.
According to researchers familiar with SCID, there are
documented cases where a treatment costs for a single infant
diagnosed with SCID after 3.5 months exceeded $1 million.
AB 395
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COMMENTS
1)Rationale . According to the author, the purpose of this bill
is to add SCID to the NBS Program, making it the 30th disease
that is screened. The author argues that this bill is needed
to implement the recommendations of the Secretary's Advisory
Committee on Heritable Disorders in Newborns and Children
(SACHDNC) and brings the NBS Program into alignment with the
most up-to-date public health standards.
2)Newborn Screening . All states have established newborn
screening programs for congenital diseases that benefit from
early detection and treatment. California began its NBS
Program in 1966 with the testing for phenylketonuria (PKU).
The program has since been expanded several times, through the
budget process as well as through legislation directing the
department to add a specific disorder. California currently
screens for 29 of the 30 core conditions recommended by
SACHDNC, a national expert advisory body that evaluates and
makes recommendations on the application of universal genetic
screening tests. The only exception is SCID, which was added
to the list in May 2010.
3)SCID Screening Pilot . Begun in August 2010, DPH is
participating in a pilot project to test for SCID. The
project is funded through federal and private grants.
According to the March of Dimes, all babies born in California
since the pilot began have been screened. Out of 235,686
babies screened, seven have been identified as SCID babies.
The March of Dimes reports that all are being treated. Since
babies with SCID have severely impaired immune systems, early
detection and treatment (before the age of 3.5 months) offers
significantly increased survival rates and avoidance of
treatment for opportunistic infections that often prove lethal
for babies who are not diagnosed and treated.
Analysis Prepared by : Lisa Murawski / APPR. / (916) 319-2081