A new bipartisan law in Connecticut will give critically ill infants access to genetic testing. Public Act 24-130 was unanimously passed in May and on Thursday legislators, activists and researchers announced the policy at UConn Health in Farmington.
“To most folks it was a no-brainer,” said Rep. Jillian Gilchrest (D, West Hartford) who led the efforts. “To not offer this test and not know what’s wrong with the child, you have medical providers trying all sort of things. In the end Medicaid would be paying more than they would if they just offered this test.”
The law requires Medicaid to cover rapid whole-genome sequence genetic testing when deemed medically necessary for critically ill infants in a neonatal intensive care unit (NICU).
“Any parent should have the answers they need, and it doesn’t matter what your economic background is,” said Gilchrest.
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According to the National Organization for Rare Disorders, half of rare disease patients are children and 80 percent of those diseases are genetic.
Ben King, a parent and advocate, shared his story to the room. His daughter Olivia was born in 2022 and spent weeks in the NICU with no diagnosis.
“It was agonizing, we knew something was being missed,” he said. “Every test imaginable was ordered, every specialist and subspecialist consulted on her.”
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His family finally got answers after his daughter underwent genetic testing. Oliva was diagnosed with a rare neurological disorder.
“Oliva lived only four months and the diagnosis changed everything for us,” he said. “We were able to enjoy having Olivia at home. She was smothered in love and affection.”
Now that same test is being made available to families in Connecticut on Medicaid.
“Rare disease does not discriminate,” said King. “In many ways those patients are overlooked, their families are overlooked, because people don’t know about them.”
Lawmakers say the policy change can set the precedent for non-state insurance companies.
“When we change Medicaid policy in the state of Connecticut, it often has a ripple effect and impacts the private market,” said Rep. Gilchrest. “Our hope is that insurance companies will take note.”
