New Connecticut law could help ill infants

HARTFORD, Conn. (WTNH) — If you have a critically ill infant, waiting for answers can feel like a lifetime.

That’s why the King family has pushed for a change that they hope will help other parents.

Ben King’s daughter, Olivia, was born in 2022 with a rare genetic condition.

“Every test imaginable was ordered,” he explained. “Every specialist and sub-specialist consulted on her.”

Genetic testing showed that she had a severe brain disease that didn’t have a cure. She died when she was 4 months old.

“She was smothered in love and affection by her brother, her cousins, her grandparents,” King said. “If she knew nothing else, she knows that she was loved.”

King went on to co-found Olivia’s Light , which makes broad genetic testing accessible to everyone. On Thursday, he joined a bipartisan group of Connecticut lawmakers who celebrated a new law that aims to do that.

“For some families in Connecticut, they had access to the whole genome sequencing,” state Rep. Jillian Gilchrest (D-District 18), House chair of the human services committee, said. “But for families who were on Medicaid, they did not.”

This law, which went into effect on July 1, requires medically necessary Medicaid coverage for rapid whole genome sequencing for certain critically ill infants.

“What this testing does is zoom on our genes and look to see if there’s any spelling mistakes or errors,” said Alex McClellan, the clinical research project manager at the Jackson Laboratory. “Instead of other tests, that pick out a few genes to look at — and say is there a spelling error here, or not — this looks at it all.”

The testing delivers an accurate diagnosis within a few short days, helping families and medical teams make a plan when seconds count.

“Approximately 25-30 million people in the US have one of the 7,000 rare diseases,” Dr. Juan Salazar, physician-in-chief at Connecticut Children’s, said. “Which are responsible for 25% of pediatric hospitalizations.”

These lawmakers said the hope with this law is to expand access and shatter boundaries to care.

“When Medicaid can do it, then hopefully all the other insurances will follow as well, “state Sen. Saud Anwar (D-District 3),  Senate chair of the public health committee, said.

State Rep. Martin Foncello (R-District 107) who co-sponsored of the legislation, said, “Let’s go forward and do bigger and better things for our communities.”

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