Senate Bill S8545

                                 
BILL NUMBER: S8545

SPONSOR: SUTTON
 
TITLE OF BILL:

An act to amend the public health law, in relation to newborn screening
for Gaucher disease

 
PURPOSE:

This bill would add Gaucher disease to the newborn screening panel for
NY state.

 
SUMMARY OF PROVISIONS:

Section 1 - Amends section 2500-a of the public health law by adding a
new paragraph 1, which would require the screening of newborns for
Gaucher disease.

Section 2 - Provides the effective date.

 
              

JUSTIFICATION:

Gaucher Disease is a serious, inherited lysosomal storage disorder that
can cause progressive organ enlargement, anemia and bleeding, painful
and damaging bone disease, and sometimes even neurological decline.
Early detection enables timely initiation of proven therapies and
prevents irreversible harm, improving long-term outcomes and quality of
life.

There will be minimal additional cost for hospitals, as they are already
required to perform many of the tests necessary to screen for Gaucher
-hospitals already screen for Pompe and MPS I, and glucocerebrosidase
(the enzyme for Gaucher) is part of that same platform. The Wadsworth
Center has been running the Gaucher test for the ScreenPlus pilot
program for almost 10 years, and expanding should require no additional
equipment.

While GD is pan-ethnic, incidence is substantially higher in Ashkenazi
Jewish communities, where approximately 1 in 450 births are affected and
up to 1 in 10 individuals are carriers. Universal screening ensures all
newborns, regardless of heritage, zip code, or access to specialists,
can access early diagnosis, treatment, and genetic counseling. New York
would not be alone: six states Illinois, Missouri, New Jersey, Tennes-
see, New Mexico, and Oregon - already screen for GD.

 
FISCAL IMPACT ON THE STATE:

To be determined.

 
LEGISLATIVE HISTORY:

New bill.

 
EFFECTIVE DATE:
This act shall take effect immediately.