Bill Text: IA HF412 | 2017-2018 | 87th General Assembly | Introduced

Iowa House Bill 412 (Prior Session Legislation)

Introduced

Bill Title: A bill for an act relating to expansion of the newborn metabolic screening to include lysosomal storage disorders.

Spectrum: Partisan Bill (Democrat 1-0)

Status: (Introduced - Dead) 2017-02-23 - Introduced, referred to Human Resources. H.J. 456. [HF412 Detail]

Download: Iowa-2017-HF412-Introduced.html


House File 412 - Introduced




                                 HOUSE FILE       
                                 BY  WINCKLER

                                      A BILL FOR

  1 An Act relating to expansion of the newborn metabolic screening
  2    to include lysosomal storage disorders.
  3 BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF IOWA:
    TLSB 2149YH (4) 87
    pf/nh

PAG LIN



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