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HB 2399

Minors; parental access to health records.

2025 Regular Session Introduced by Mark Earley and 5 co-sponsors

Establishes the Advance Universal Newborn Screening Program in Kansas, lets the health secretary add conditions, funds no-cost screening, follow-up, and limited treatment support.

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Bill Summary · HB 2399

HB 2399 — Advance Universal Newborn Screening Program (Kansas)

Status: Referred to Committee on Health and Human Services
Introduced: February 4, 2025

Purpose

HB 2399 modernizes and expands Kansas’ newborn screening statute by establishing an “Advance Universal Newborn Screening Program,” giving the Secretary of Health and Environment authority to specify conditions to be screened (rather than listing them in statute), aligning the law with current screening practice and national guidance, and extending an annual funding transfer to support the program.

Key provisions

  • Establishes the Advance Universal Newborn Screening Program to be administered by the Secretary of Health and Environment.
  • Replaces a statutory list of specific conditions with a flexible standard: the Secretary may identify conditions to be screened, including — but not limited to — those on the U.S. HHS Recommended Uniform Screening Panel.
  • Requires KDHE (or its designee) to perform initial laboratory screening tests for all infants born in the state at no charge.
  • Requires an intensive education program for physicians, hospitals, public health nurses and the public about screened conditions and early intervention.
  • Creates follow-up obligations: provide test results to clinicians, locate infants with abnormal results, and (with parental consent) monitor confirmatory testing and treatment; establishes a case registry to support follow-up and treatment.
  • Treatment and product support:
    • KDHE to provide necessary treatment products when not available through other state agencies and within appropriations.
    • Maple syrup urine disease explicitly included among diagnosed cases eligible for assistance.
    • Medicaid-eligible individuals receive coverage under the Medicaid state plan.
    • For non‑Medicaid families below 300% of the federal poverty level (FPL), KDHE may reimburse 50%–100% of product cost per rules; families above 300% FPL may receive reimbursement up to 50% (per rulemaking).
  • Food/treatment product reimbursement or provision:
    • Reimbursement option up to $1,500 per year per diagnosed child (age ≤18), subject to income eligibility (≤300% FPL).
    • KDHE may alternatively purchase and distribute medically necessary food treatment products up to $1,500 annually per child.
  • Billing and collections: KDHE may bill responsible persons a pro‑rata share per adopted rules.
  • Rulemaking: Secretary to adopt rules as needed and to require, to the extent funding allows, screening for specified treatable conditions.

Funding and fiscal impact

  • Authorizes an annual transfer of up to $5.0 million from the Health Maintenance Organization (HMO) privilege fee into the Kansas Newborn Screening Fund; the bill extends this transfer beyond the current statutory limit (current law limits transfers to FY 2024–2026).
  • Fiscal Note (Kansas Division of the Budget, March 4, 2025):
    • KDHE indicates the bill aligns statute with current practice; no fiscal effect is expected for FY 2026.
    • For FY 2027, the bill would increase program revenue by $2.5 million (program expenditures are not expected to exceed revenue).
    • The FY 2026 Governor’s Budget Report already includes the $5.0 million transfer as currently directed for FY 2026.

Who is affected

  • Infants born in Kansas and their families (screening, diagnoses, treatment access).
  • Physicians, hospitals, public health nurses (education, follow-up).
  • Kansas Department of Health and Environment (program administration, labs, rulemaking).
  • Medicaid and private insurers (coordination of benefits; KDHE pays after other benefits exhausted).
  • Health Maintenance Organizations (source of the privilege fee transfer).

Procedural/timeline notes

  • Introduced February 4, 2025; currently referred to the House Committee on Health and Human Services.
  • KDHE rulemaking authority will be required to implement reimbursement thresholds, eligibility standards, and condition lists (timing depends on rule promulgation and appropriations).

If enacted, HB 2399 both broadens statutory authority to add conditions (bringing Kansas law closer to federal screening recommendations) and secures ongoing funding authority (via HMO fee transfers) to support screening, follow-up, and limited treatment/reimbursement programs.

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

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