State bill would stop insurance carriers from terminating coverage over genetic test results

ALBANY — State lawmakers in New York are looking to block insurance companies from terminating coverage for their clients based on their genetics.

On Wednesday, Assemblyman Jeffrey Dinowitz, D-Bronx, and a group of advocates called for his colleagues in the state Senate and Assembly to pass his bill that would block life, long-term care and disability insurers from refusing to offer coverage, or refusing to renew coverage, charging increased rates or enacting coverage time limits on a client based on the results of a genetic test or the known genetic qualities of their parents.

The bill would cover more ground than existing federal laws that block health insurance companies and employers from discriminating against clients or employees based on genetics.

"This is about fairness, and it's about being smart," Dinowitz said. "We do not want a situation where people are discouraged from getting genetic testing when it would make sense for them to do that, but if someone is concerned they're going to be the victim of discrimination as a result of that testing, that could prevent them from getting valuable information."

Insurers are already using genetic results to block clients from their plans. Speaking alongside Dinowitz was Sophia Bassan, a New York City resident who carries the BRCA gene, which causes a person to be much more likely to develop certain cancers. She got a test done in 2024, a year after her father died of cancer. Seeing that she carries the gene, she got a preventative, risk-reducing mastectomy, and developed post-mastectomy pain syndrome.

"Hartfort, my long-term disability insurer, denied my claim," she said. "They stated my genetic mutation was a pre-existing condition."

The company, whose coverage was offered to Bassan through her employment, did not require physical exams or access to medical records to offer coverage.

As a result of the loss of coverage, Bassan said she's gone a year without income, has had to delay medical care and, most painfully, has had to make a decision not to pursue having children.

"At my age, I am now 44, Hartford's denial has devastated my finances and chances to children," she said. "It may be too late for me, but it is not too late for others."

The bill, carried by Senator Cordell Cleare, D-Manhattan, has made it to the Senate and Assembly Insurance Committees but has not progressed further. As the legislative session draws closer to its June 4 end date, the runway to get the bill passed this year is drawing ever shorter.

"We just want to do the right thing for everybody, the right thing for people's health and the right thing for our state, so let's get this done. We only have three weeks to do it," Dinowitz said.