New Push for More Insurers and States to Cover Breakthrough Genetic Test for Children

By Consumers for Quality Care, on November 8, 2023

A quick test for children with rare genetic diseases could help many each year, but many private and public health insurers refuse to cover these tests because of its cost, according to KFF Health News.

One family is crediting this test, a rapid “whole-genome sequencing,” for saving their newborn, Layla Babayev. Layla was just two weeks old when she developed meningitis, spending more than a month in neonatal intensive care in three different hospitals while doctors attempted to determine why she was so ill. Her parents, Dmitry and Corrina, decided to enroll her in a rapid whole-genome sequencing clinical trial that would sequence Layla’s entire genome and provide answers in a matter of days. The results determined that baby Layla had a rare genetic disorder that compromised her immune system and caused major gastrointestinal problems.

Dmitry credited the rapid whole-genome sequencing with saving his daughter’s life. “It is why we believe Layla is still with us today,” he said.

Whole-genome sequencing is offering new hope to families like the Babayevs, but because of its cost, few infants and children with undiagnosed illnesses can benefit from this breakthrough. The testing costs between $4,000 and $8,000, an amount that most private and public health insurers won’t cover.

Now, a new coalition of genetic testing companies, drugmakers, children’s hospitals, and medical providers is urging states to increase Medicaid coverage for whole-genome sequencing. In just a few years, eight states have added rapid whole-genome sequencing to their Medicaid coverage, with four more states considering coverage. 

 “This is an extraordinary, powerful test that can change the trajectory of these children’s diseases and our own understanding,” said Jill Maron, Chief of Pediatrics at Women & Infants Hospital in Providence, Rhode Island. “The only thing interfering with more widespread use is insurance payment.”

CQC urges lawmakers and regulators to expand Medicaid benefits to ensure that consumers, particularly children, have access to life-saving medical services. CQC also urges private insurers to expand their coverage to include these treatments.