House File 412 - Introduced HOUSE FILE 412 BY WINCKLER A BILL FOR An Act relating to expansion of the newborn metabolic screening 1 to include lysosomal storage disorders. 2 BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF IOWA: 3 TLSB 2149YH (4) 87 pf/nh

H.F. 412 Section 1. NEW SECTION . 136A.5B Newborn metabolic screening 1 —— lysosomal storage disorders. 2 1. The department shall adopt rules pursuant to section 3 136A.8 to expand the newborn metabolic screening required under 4 section 136A.5 to include screening for lysosomal storage 5 disorders, including but not limited to all of the following: 6 a. Krabbe disease. 7 b. Pompe disease. 8 c. Gaucher disease. 9 d. Niemann-Pick disease. 10 e. Fabry disease. 11 2. An attending health care provider shall ensure that 12 every newborn under the provider’s care receives the newborn 13 screening that includes screening for lysosomal storage 14 disorders in accordance with rules adopted by the department. 15 3. a. In accordance with the duties prescribed in section 16 136A.3, the center for congenital and inherited disorders shall 17 collaborate with state and local health agencies and other 18 public and private organizations to develop and publish or 19 approve and publish informational materials to educate and 20 raise awareness of lysosomal storage disorders among women who 21 may become pregnant, expectant parents, parents of newborns, 22 attending health care providers, and others, as appropriate. 23 b. An attending health care provider shall provide to a 24 pregnant woman during the first trimester of the pregnancy, 25 the informational materials published under this subsection. 26 The center for congenital and inherited disorders shall make 27 the informational materials available to attending health care 28 providers upon request. 29 c. The department shall publish the informational materials 30 on its internet site. 31 4. This section does not apply if a parent objects to 32 the screening. If a parent objects to the screening of a 33 newborn, the attending health care provider shall document the 34 refusal in the newborn’s medical record and shall obtain a 35 -1- LSB 2149YH (4) 87 pf/nh 1/ 2

H.F. 412 written refusal from the parent and report the refusal to the 1 department. 2 EXPLANATION 3 The inclusion of this explanation does not constitute agreement with 4 the explanation’s substance by the members of the general assembly. 5 This bill directs the department of public health (DPH) 6 to adopt rules to expand the newborn metabolic screening to 7 include screening for lysosomal storage disorders, including 8 but not limited to five such disorders as specified. 9 The bill requires an attending health care provider to 10 ensure that every newborn under the provider’s care receives 11 the newborn screening that includes screening for lysosomal 12 storage disorders; directs the center for congenital and 13 inherited disorders to collaborate with state and local health 14 agencies and other public and private organizations to develop 15 and publish or approve and publish informational materials to 16 educate and raise awareness of lysosomal storage disorders 17 among women who may become pregnant, expectant parents, parents 18 of newborns, attending health care providers, and others, 19 as appropriate; requires an attending health care provider 20 to provide to a pregnant woman during the first trimester 21 of the pregnancy, the informational materials published; 22 requires the center for congenital and inherited disorders 23 to make the informational materials available to attending 24 health care providers upon request; and requires DPH to 25 publish the informational materials on its internet site. The 26 requirement for screening does not apply if a parent objects 27 to the screening. If a parent objects to the screening of 28 a newborn, the attending health care provider shall document 29 the refusal in the newborn’s medical record and shall obtain a 30 written refusal from the parent and report the refusal to the 31 department. 32 -2- LSB 2149YH (4) 87 pf/nh 2/ 2