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HB 5495

AN ACT RELATING TO HEALTH AND SAFETY -- MATERNAL AND CHILD HEALTH SERVICES FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS

2025 Regular Session Introduced by Rebecca Kislak

Expands who may order newborn screening (physicians, midwives, NPs, PAs) and requires Rhode Island to match the federal RUSP, with rules on funding, privacy, and data use.

06/24/2025 Signed by Governor
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Bill Summary · HB 5495

Summary — HB 5495

AN ACT RELATING TO HEALTH AND SAFETY — MATERNAL AND CHILD HEALTH SERVICES FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS
Signed by Governor: June 24, 2025 (effective upon passage)
R.I. Gen. Laws amended: § 23-13-14 (Newborn screening program)

Purpose

To clarify and expand who may order newborn screening in Rhode Island, to align the state newborn screening panel with the federal Recommended Uniform Screening Panel (RUSP), and to establish rules governing fees, specimen storage/use, data confidentiality, and funding for the newborn screening program.

Key provisions

  • Authorizes the attending midwife, nurse practitioner, or physician assistant — as well as physicians — to cause newborns to be subject to required newborn screening tests and developmental-risk assessments.
  • Requires the Department of Health (DOH) to adopt rules for screening, diagnosis, and treatment consistent with accepted medical practice.
  • Mandates inclusion, at minimum, of all disorders on the current federal RUSP and requires DOH to add new disorders/conditions added to the federal RUSP within two years; the DOH director may extend that period if inclusion is impracticable for the shortest necessary time.
  • Preserves parental religious exemption for newborn screening tests.
  • Authorizes DOH to set a reasonable fee structure for the newborn screening and disease-control program (screening, diagnostic, treatment).
    • The program must be a covered, reimbursable benefit for health insurers (per § 27-38.2-2), excluding certain supplemental policies (e.g., disease-specific riders, hospital indemnity, Medicare supplements).
    • Department of Human Services (Medicaid) will pay when the patient is eligible for medical assistance.
    • Hospitals/healthcare facilities without a third‑party payor will bear charges but may bill the patient directly.
  • Establishes privacy and use rules:
    • DOH may promulgate requirements for storage, access, and use of residual newborn screening specimens and classify related data as protected health information.
    • Personally identifiable screening records are limited to program use (medical intervention, counseling).
    • De-identified data may be shared for qualified scientific/demographic/epidemiologic studies with written confidentiality agreements (HIPAA and state confidentiality law compliance).
    • Newborn screening specimens and related program records are not subject to subpoena or discovery and are inadmissible as evidence in legal proceedings.
  • Creates a restricted receipts “newborn screening account” in the general fund for program revenues and expenditures.

Who is affected

  • Newborns and their parents (including religious exemption holders)
  • Attending providers: physicians, midwives, nurse practitioners, physician assistants
  • Hospitals and birth facilities
  • Health insurers and Medicaid (Department of Human Services)
  • Department of Health (rulemaking, program administration)
  • Researchers (access to de-identified data under conditions)

Procedural timeline (selected)

  • Introduced: Feb 13, 2025 (Rep. Rebecca M. Kislak)
  • House passed: Mar 25, 2025
  • Senate concurrence: Jun 18, 2025; transmitted to Governor same day
  • Signed by Governor: Jun 24, 2025 — effective upon passage

Potential impacts / considerations

  • Expands provider capacity to order newborn screening (may increase screening access, especially in non-physician-attended births).
  • Ensures Rhode Island’s panel remains aligned with federal RUSP and that new conditions are added in a defined timeframe (with limited director discretion).
  • Establishes funding and insurer reimbursement pathways that may reduce direct costs to hospitals but preserves billing options where coverage is absent.
  • Strengthens privacy protections for specimens and data while enabling qualified research use of de-identified information.

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

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