Committee hears testimony supporting separate Medicaid payment for rapid whole-genome sequencing for infants in intensive care

The House Health Care & Wellness Committee heard testimony on House Bill 1444, which would require Medicaid to pay separately for rapid whole-genome sequencing for enrollees under age 1 who are receiving hospital services in an intensive care unit, neonatal unit or a high-acuity pediatric care unit and who meet the bill’s specified criteria.

Committee staff described current Medicaid practice: rapid whole-genome sequencing is covered as part of bundled inpatient payments. The bill would unbundle sequencing reimbursement so the test is reimbursed separately for eligible infants.

Representative (prime sponsor) introduced the bill as a measure to shorten the diagnostic odyssey for infants with suspected genetic conditions and to enable counseling and targeted care. She told the committee that advances in genomic testing have made rapid whole-genome sequencing more affordable and that separate reimbursement would ensure access and appropriate pre- and post-test counseling.

Families and clinicians testified in support with personal accounts of early diagnosis and clinical benefit. Lindsay Topping Shoots (testifying in place of a remote panelist) described receiving a prenatal genetic diagnosis at 27 weeks for her son and said that early diagnosis “saved both his life and mine,” while urging the legislature to extend access to others. She testified that while rare diseases are each uncommon, the community is large—testimony cited an estimate of roughly 780,000 Washingtonians affected by rare disease and about 520,858 children among them, with an assertion that 30% of affected children will not live to age five.

Michelle Hagerstrom, a nurse manager at Mary Bridge Children’s Hospital, said rapid genome sequencing can prevent invasive diagnostic procedures and enable earlier targeted interventions; she said studies show early diagnosis can offset initial sequencing costs through avoided procedures and improved outcomes. Sarah Tompkins, a rare-disease patient and advocate, described years of delayed diagnosis and multiple surgeries that could have been reduced with earlier genetic testing.

Proponents emphasized counseling before and after testing and argued unbundling would allow clinicians to order sequencing when medically indicated without the hospital absorption of test costs under bundled payments. No opposition was recorded in the hearing transcript; the committee closed the public hearing with no recorded vote.