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HB 4730

Health: screening; Krabbe disease; include in list of disorders and diseases screened for at birth. Amends sec. 5431 of 1978 PA 368 (MCL 333.5431).

2025-2026 Regular Session Introduced by Noah Arbit and 8 co-sponsors

Adds Krabbe disease to Michigan's mandatory newborn screening panel, enabling earlier detection and treatment; the department may charge up to $53.71 per newborn.

bill electronically reproduced 07/15/2025
#health:children #health:diseases #health:screening #records:birth
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Bill Summary · HB 4730

Summary — HB 4730 (House Bill)

Title: Health: screening; Krabbe disease; include in list of disorders and diseases screened for at birth. (Amends MCL 333.5431)

At-a-glance

  • Purpose: Add Krabbe disease to Michigan’s required newborn blood-spot screening panel and retain/clarify existing procedural, reporting, fee, specimen-retention, and parental-notice provisions in section 5431 of the Public Health Code.
  • Sponsor/intro date: Rep. Samantha Steckloff; filed March 13, 2025 (introduced July 15, 2025).
  • Status (as of document): Passed the House May 8, 2025; rereproduced/introduced July 15, 2025 and referred to Committee on Health Policy.
  • Effective date: 90 days after enactment.

Key provisions

  • Adds Krabbe disease to the list of conditions for which a newborn must be screened at birth (explicit insertion of “Krabbe disease” into the statutory list).
  • Maintains current mandatory newborn screening for other listed conditions (phenylketonuria, galactosemia, hypothyroidism, maple syrup urine disease, biotinidase deficiency, sickle cell anemia, congenital adrenal hyperplasia, medium-chain acyl-CoA dehydrogenase deficiency, and other treatable disabling conditions designated by the department).
  • Informed consent requirements in sections 17020 and 17520 do not apply to these required newborn tests.
  • Tests must be administered and reported under department-prescribed timing/conditions; the department may perform tests itself.
  • Positive test-results reporting: must be reported to the infant’s parents/guardian/person in loco parentis; a “good-faith effort” to notify satisfies the requirement.
  • Fee authority: if the department performs one or more tests, it may charge up to $53.71 per newborn (amount to be adjusted annually by the state treasurer to reflect cumulative change in the Detroit-Warren-Dearborn Consumer Price Index). The department must offer a hardship waiver where appropriate.
  • Noncompliance is a misdemeanor.

Specimen retention, research, and parental option

  • Department must have (and follow) a schedule for retention and disposal of blood specimens that meets national accreditation standards, federal law, and specified disposal-record/witness requirements.
  • Stored specimens may be used for medical research consistent with federal human-subjects protections (45 CFR part 46).
  • Department pamphlet explaining the program must be updated when existing supplies are exhausted and must include descriptions of conditions screened, retention/disposal schedule, and information about research use.
  • Hospitals/clinicians may offer parents an additional preserved blood specimen (for identification/use by parents) at the time of newborn screening; preservation must not require special storage and the provider may charge only the actual cost.

Who is affected

  • Newborns and their parents/guardians.
  • Birth hospitals, birthing centers, midwives and health professionals responsible for newborn care and specimen collection.
  • Michigan Department of Health (oversight, testing, fee administration, retention/disposal policy).
  • Public health laboratories and clinical labs performing newborn screening.
  • Researchers (potential access to de-identified retained specimens under applicable rules).

Procedural/timeline notes

  • Filed March 13, 2025; multiple committee hearings and actions in April–May 2025; passed the House on May 8, 2025. Bill text electronically reproduced July 15, 2025 and referred to Health Policy Committee. If enacted, takes effect 90 days after the date of enactment.

Potential impacts/considerations

  • Clinical/public-health: Earlier identification of Krabbe disease could enable earlier interventions, surveillance, and referrals to specialty care.
  • Operational: Labs/hospitals may need to implement or expand testing capability or coordinate with the state lab; modest fee revenue and administrative burden for the department.
  • Privacy/research: Continued statutory framework for specimen retention and possible research use; parents offered option to retain additional specimen for family use.

Compiled from official sources — confirm details with the bill’s official record.

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