An Act To Protect Newborn Infants by Requiring Birthing Facilities To Screen for Congenital Heart Disease Using Pulse Oximetry
Maine Legislature, Session 126, LD 0460
Committee Amendment CA_A_H515 (House)
Amends: 22 MRSA §1532

COMMITTEE AMENDMENT '8" to H.P. 310, L.D. 460, Bill, "An Act To 
Protect Newborn Infants by Requiring Birthing Facilities To Screen for Congenital Heart 
Disease Using Pulse Oximetry" 
Amend the bill by striking out the title and substituting the following: 
'An Act To Protect Newborn Infants from Critical Congenital Heart Disease' 
Amend the bill by striking out everything after the title and before the summary and 
inserting the following: 
'Emergency preamble. Whereas, acts and resolves of the Legislature do not 
become effective until 90 days after adjournment unless enacted as emergencies; and 
Whereas, according to the United States Department of Health and Human Services' 
Secretary's Advisory Commi1tee on Heritable Disorders in Newborns and Children, 
congenital heart disease affects 7 to 9 of every 1,000 children born in the United States 
and Europe; and 
Whereas, the federal Centers for Disease Control and Prevention states that 
congenital heart disease is the leading cause of infant deaths due to birth defects; and 
Whereas, many newborn lives could be saved by earlier detection and treatment of 
congenital heart disease if birthing facilities in this State were required to perform 
screening for the presence of critical congenital heart disease by means of the most 
appropriate technology; and 
Whereas, each day that goes by without appropriate screening places infants at risk; 
and 
Whereas, in the judgment of the Legislature, these facts create an emergency within 
the meaning of the Constitution of Maine and require the following legislation as 
immediately necessary for the preservation of the public peace, health and safety; now, 
therefore, 
Be it enacted by the PeoplE~ of the State of Maine as follows: 
COMMITTEE AMENDMENT 
COMMITTEE AMENDMENT It,, to H.P. 310, L.D. 460 
Sec. 1. 22 MRSA §1532, as amended by PL 2009, c. 514, §2, is repealed and the 
following enacted in its place: 
§1532. Detection of serious conditions 
The department shall require hospitals, birthing centers and other birthing services to 
test newborn infants, or to cause them to be tested, by means of blood spot screening for 
the presence of treatable congenital, genetic or metabolic conditions that may be expected 
to result in subsequent cognitive disabilities, serious illness or death and by means of 
appropriate technology for the presence of critical congenital heart disease. 
1. Define requirement and methods; assistance. The department shall define the 
requirement under this section that a newborn infant must be te'sted for the presence of 
treatable congenital, genetic or metabolic conditions that may be expected to result in 
subsequent cognitive disabilities and the approved testing methods, materials, procedures 
and sequences. Reports and records of those making these tests may be required to be 
submitted to the department in accordance with departmental rules. The department may, 
on request, offer consultation, training and evaluation services to those testing facilities. 
2. Referrals. The department shall in a timely fashion refer newborn infants with 
confirmed treatable congenital, genetic or metabolic conditions or critical congenital 
heart disease to the Child Development Services System as defined in Title 20-A, section 
7001, subsection I-A. The department shall in a timely fashion refer a newborn infant to 
the Child Development Services System if at least 6 months have passed since an initial 
positive test result of a treatable congenital, genetic or metabolic condition without the 
specific nature of the condition having been confirmed. 
The department and the 
Department of Education shall execute an interagency agreement to facilitate all referrals 
made pursuant to this section. 
In accordance with the interagency agreement, the 
Department of Education shall offer a single point of contact for the Department of 
Health and Human Services to use in making referrals. Also in accordance with the 
interagency agreement, the Child Development Services System may make direct contact 
with the families who are referred. 
The referrals may be made electronically. For 
purposes of quality assurance and improvement, the Child Development Services System 
shall supply aggregate data to the department at least annually on the numbers of children 
referred to the Child Development Services System under this section who were found 
eligible and ineligible for early intervention services. The department shall supply data at 
least annually to the Child Development Services System on how many children in the 
newborn blood spot screening program as established by rule of the department under 
section 1533, subsection 2, paragraph G were screened and how many were found to have 
a disorder. 
3. 
Religious objection exemption. The requirement under this section that a 
newborn infant must be tested for the presence of treatable congenital, genetic or 
metabolic conditions that may be expected to result in subsequent cognitive disabilities or 
for the presence of critical congenital heart disease does not apply to a child if the parents 
of that child object on the grounds that the test conflicts with their religious tenets and 
practices. 
4. Report. A hospital, birthing center or other birthing service that tests a newborn 
infant pursuant to this section shall report to the department aggregate data on the testing, 
COMMITTEE AMENDMENT 
COMMITTEE AMENDMENT 'A" to H.P. 310, L.D. 460 
including but not limited to the number of infants born, the number tested for treatable 
congenital, genetic or metabolic conditions, the number screened for critical congenital 
heart disease, the results of the screening and testing and, for heart disease screening the 
type of screening tool used. 
Sec. 2. Review and report. The Department of Health and Human Services shall 
review options for making available to infants born other than in hospitals and birthing 
centers and through the assistance of other birthing services screening for critical 
congenital heart disease. The department shall report the results of the review to the Joint 
Standing Committee on Heal1h and Human Services by April 1,2014. The department 
shall perform its duties under this section and under the Maine Revised Statutes, Title 22, 
section 1532 within existing resources. 
Emergency clause. 
In view of the emergency cited in the preamble, this 
legislation takes effect when approved.' 
SU~RY 
This amendment is the majority report of the committee. 
This amendment changes the title and the emergency preamble and replaces the bill. 
This amendment adds screening for critical congenital heart disease to the mandatory 
newborn infant screening law. This amendment requires the entity responsible for the 
screening to report to the Department of Health and Human Services information on the 
testing, including but not limited to the number of infants born, the number screened, the 
type of screening tool used and the results of the screening. The amendment requires the 
Department of Health and Human 'Services to review, and report to the Joint Standing 
Committee on Health and Human Services by April 1, 2014 on, options for making 
available to infants born other than in hospitals, birthing centers and other birthing 
services screening for critical Gongenital heart disease. 
FISCAL ~OTE REQUIRED 
(See attached) 
COMMITTEE AMENDMENT 
Revised: 06/09/13 
~ac. 
LD460 
LR 757(02) 
An Act To Protect Newborn Infants by Requiring Birthing Facilities To Screen for Congenital Heart 
Fiscal Detail and Notes 
Disease Using Pulse Oximetry 
_ \ 
Fiscal Note for Bill as Amended by Committee Amendment ,A, eft -515~ 
Committee: Health and Human Services 
Fiscal Note Required: Yes 
Fiscal Note 
Current biennium cost increase - Other Special Revenue Funds 
The bill requires the Department of Health and Human Services to perform the duties required within existing 
resources. The impact on existing programs and resources cannot be determined. 
LR0757(02) - Fiscal Note - Page 1 of 1