Public Health - Newborn Screening Program - Metachromatic Leukodystrophy

EXPLANATION: CAPITALS INDICATE MATTER ADDED TO EXISTING LAW.
[Brackets] indicate matter deleted from existing law.
*hb1537*

HOUSE BILL 1537
J1 6lr3418

By: Delegate Amprey
Introduced and read first time: February 13, 2026
Assigned to: Health

A BILL ENTITLED

AN ACT concerning 1

Public Health – Newborn Screening Program – Metachromatic Leukodystrophy 2

FOR the purpose of requiring that the Maryland Department of Health’s newborn 3
screening system include screening for metachromatic leukodystrophy; and 4
generally relating to newborn screening. 5

BY repealing and reenacting, with amendments, 6
Article – Health – General 7
Section 13–111 8
Annotated Code of Maryland 9
(2023 Replacement Volume and 2025 Supplement) 10

SECTION 1. BE IT ENACTED BY THE GENERAL ASSEMBLY OF MARYLAND, 11
That the Laws of Maryland read as follows: 12

Article – Health – General 13

13–111. 14

(a) The Department shall establish a coordinated statewide system for screening 15
all newborn infants in the State for certain hereditary and congenital disorders associated 16
with severe problems of health or development, except when the parent or guardian of the 17
newborn infant objects. 18

(b) Except as provided in § 13–112 of this subtitle, the Department’s public health 19
laboratory is the sole laboratory authorized to perform t ests on specimens from newborn 20
infants collected to screen for hereditary and congenital disorders as determined under 21
subsection (d)(2) of this section. 22

(c) The system for newborn screening shall include: 23

2 HOUSE BILL 1537

(1) Laboratory testing and the reporting of test results; [and] 1

(2) Follow–up activities to facilitate the rapid identification and treatment 2
of an affected child; AND 3

(3) SCREENING FOR METACHROMATIC LEUKODYSTROPHY. 4

(d) In consultation with the State Advisory Council on Hereditary and Congenital 5
Disorders, the Department shall: 6

(1) Establish protocols for a health care provider to obtain and deliver test 7
specimens to the Department’s public health laboratory; 8

(2) Determine the screening tests that the Department’s public health 9
laboratory is required to perform; 10

(3) Maintain a coordinated statewide system for newborn screening that 11
carries out the purpose described in subsection (c) of this section that includes: 12

(i) Communicating the results of screening tests to the health care 13
provider of the newborn infant; 14

(ii) Locating newborn infants with abnormal test results; 15

(iii) Sharing newborn screening information between hospitals, 16
health care providers, treatment centers, and laboratory personnel; 17

(iv) Delivering needed clinical, diagnostic, and treatment 18
information to health care providers, parents, and caregivers; and 19

(v) Notifying parents and guardians of newborn infants that 20
laboratories other than the Department’s public health laboratory are authorized to 21
perform postscreening confirmatory or diagnostic tests on newborn infants for hereditary 22
and congenital disorders; and 23

(4) Adopt regulations that set forth the standards and requirements for 24
newborn screening for hereditary and congenital disorders that are required under this 25
subtitle, including: 26

(i) Performing newborn screening tests; 27

(ii) Coordinating the reporting, follow –up, and treatment activities 28
with parents, caregivers, and health care providers; and 29

(iii) Establishing fees for newborn s creening that do not exceed an 30
amount sufficient to cover the administrative, laboratory, and follow –up costs associated 31
with the performance of screening tests under this subtitle. 32
HOUSE BILL 1537 3

(e) (1) (i) The Department shall screen for each core condition listed in the 1
U.S. Department of Health and Human Services’ Recommended Uniform Screening Panel. 2

(ii) Subject to subparagraph (iii) of this paragraph, the Department 3
shall implement testing for a core condition within 1 year and 6 months after the core 4
condition is added to the Recommended Uniform Screening Panel. 5

(iii) 1. If the Department is unable to implement testing within 1 6
year and 6 months after a core condition is added to the Recommended Uniform Screening 7
Panel due to a delay in the procurement of equipment or supplies needed to implement the 8
testing, the Department shall report to the Senate Finance Committee and the House 9
Health and Government Operations Committee, in accordance with § 2 –1257 of the State 10
Government Article, within 1 year and 3 months after the addition of the core condition to 11
the Recommended Uniform Screening Panel and every 3 months thereafter until the 12
testing for the core condition is implemented. 13

2. A report required under subsubparagraph 1 of this 14
subparagraph shall in clude the reason for the delay and the anticipated timeline for 15
implementation. 16

(2) Notwithstanding any other provision of law, if the Secretary of Health 17
and Human Services issues federal recommendations on critical congenital heart disease 18
screening of newborns, the Department shall adopt the federal screening recommendations. 19

(3) The Department may screen for any condition recommended by the 20
Advisory Council and approved by the Secretary. 21

(f) (1) The Secretary shall pay all fees collected under the provisions of this 22
subtitle to the Comptroller. 23

(2) The Comptroller shall distribute the fees to the Newborn Screening 24
Program Fund established under § 13–113 of this subtitle. 25

SECTION 2. AND BE IT FURTHER ENACTED, That this Act shall take effect 26
October 1, 2026. 27