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SB 998

AN ACT REQUIRING HEALTH INSURANCE COVERAGE FOR MEDICAL FOODS FOR INDIVIDUALS DIAGNOSED WITH PHENYLKETONURIA.

2025 Regular Session Introduced by Cathy Osten

Connecticut would require health insurers to cover specialized medical foods for phenylketonuria patients, removing financial barriers to essential dietary management.

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Bill Summary · SB 998

Legislative bill overview

SB 998 would mandate that health insurance plans in Connecticut cover medical foods for patients diagnosed with phenylketonuria (PKU), a rare genetic metabolic disorder. The bill requires insurers to include these specialized therapeutic foods as covered benefits rather than treating them as optional or out-of-pocket expenses.

Why is this important

PKU requires strict dietary management starting in infancy to prevent severe intellectual disability and neurological damage. Medical foods for PKU management are expensive (often $10,000-20,000+ annually) and essential for health—without coverage mandates, families face crushing costs for medically necessary treatment. This bill addresses a coverage gap that affects a vulnerable population dependent on these foods for basic health maintenance.

Potential points of contention

  • Insurance cost impact: Insurers may argue this expands coverage costs, though PKU population is small enough that actuarial impact is likely minimal
  • Definition and scope: Questions about which specific medical foods qualify, whether all formulations are covered, and whether the mandate applies equally to all plan types
  • State vs. federal authority: Tension between state insurance mandates and federal health insurance regulations; may not apply to self-insured employer plans under ERISA
  • Precedent concerns: If approved, could face pressure to mandate coverage for other rare disease medical foods, expanding insurer obligations

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

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