SF 341 (LSB 2149XS (3) 87)

SENATE FILE 341

BY  LYKAM

A BILL FOR

An Act relating to expansion of the newborn metabolic screening to include lysosomal storage disorders.
BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF IOWA:

    Section 1.  NEW SECTION.  136A.5B  Newborn metabolic screening —— lysosomal storage disorders.
   1.  The department shall adopt rules pursuant to section 136A.8 to expand the newborn metabolic screening required under section 136A.5 to include screening for lysosomal storage disorders, including but not limited to all of the following:
   a.  Krabbe disease.
   b.  Pompe disease.
   c.  Gaucher disease.
   d.  Niemann-Pick disease.
   e.  Fabry disease.
   2.  An attending health care provider shall ensure that every newborn under the provider’s care receives the newborn screening that includes screening for lysosomal storage disorders in accordance with rules adopted by the department.
   3.  a.  In accordance with the duties prescribed in section 136A.3, the center for congenital and inherited disorders shall collaborate with state and local health agencies and other public and private organizations to develop and publish or approve and publish informational materials to educate and raise awareness of lysosomal storage disorders among women who may become pregnant, expectant parents, parents of newborns, attending health care providers, and others, as appropriate.
   b.  An attending health care provider shall provide to a pregnant woman during the first trimester of the pregnancy, the informational materials published under this subsection. The center for congenital and inherited disorders shall make the informational materials available to attending health care providers upon request.
   c.  The department shall publish the informational materials on its internet site.
   4.  This section does not apply if a parent objects to the screening. If a parent objects to the screening of a newborn, the attending health care provider shall document the refusal in the newborn’s medical record and shall obtain a written refusal from the parent and report the refusal to the department.
EXPLANATION
The inclusion of this explanation does not constitute agreement with
the explanation’s substance by the members of the general assembly.
   This bill directs the department of public health (DPH) to adopt rules to expand the newborn metabolic screening to include screening for lysosomal storage disorders, including but not limited to five such disorders as specified. 
   The bill requires an attending health care provider to ensure that every newborn under the provider’s care receives the newborn screening that includes screening for lysosomal storage disorders; directs the center for congenital and inherited disorders to collaborate with state and local health agencies and other public and private organizations to develop and publish or approve and publish informational materials to educate and raise awareness of lysosomal storage disorders among women who may become pregnant, expectant parents, parents of newborns, attending health care providers, and others, as appropriate; requires an attending health care provider to provide to a pregnant woman during the first trimester of the pregnancy, the informational materials published; requires the center for congenital and inherited disorders to make the informational materials available to attending health care providers upon request; and requires DPH to publish the informational materials on its internet site. The requirement for screening does not apply if a parent objects to the screening. If a parent objects to the screening of a newborn, the attending health care provider shall document the refusal in the newborn’s medical record and shall obtain a written refusal from the parent and report the refusal to the department.