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Preemie babies need life-saving milk, but insurance companies are denying claims

NEW YORK — Desperately ill newborns, often born prematur, need donor human breast milk to survive, but although New York mandates it be covered, most insurance companies are denying claims.

The New York Milk Bank has overflowing freezers full of donor human breast milk.

Much of it goes to desperately ill newborns, often born prematurely, who need the food as “medicine” to prevent devastating intestinal complications that can require surgery, because formula often brings on the Necrotizing Enterocolitis, or NEC, or can contribute to it returning. This can require multiple surgeries in just a few weeks’ time. But research has shown donor human breast is saving these young lives.

Just this past July, New York State mandated it be a covered insurance expense under its Medicaid umbrella.

So why are so many insurance companies refusing to reimburse for the life saving milk?

It’s a paperwork blame game, says Julie Bouchet-Horowitz, who runs the New York Milk Bank, but she continues on in her core mission.

“We’re feeding lots of babies. We’ve distributed over 85,000 ounces since we opened,” Bouchet-Horowitz proclaimed with a wide smile in front of a freezer full of bottles, ready to ship to the next hospital in need.

New mom Ebony Simpson is one of those mothers. Her little preemie, Benjamin, was born at just 31 weeks in Manhattan.

With stress and travel to and from home and the hospital, Ebony’s breast milk supply dwindled, and when he was fed formula, Benjamin got sicker, developing NEC.

He went through three surgeries to get it under control.

The hospital switched to donor breast milk, and insisted Benjamin not be released unless there was a supply of it waiting for him at home.

The doctor’s orders: that he be on the food for 12 months, covered by insurance. The bonus: research shows Benjamin would stay healthy, out of the hospital, and out of the operating room while getting the right food as medicine.

However, Simpson's insurance company, Fidelis Care, rejected the claim.

“That’s what they do. They reject the claims. No one had a code for donor milk. Nobody knew how to bill. It’s all tied up in red tape,” Bouchet-Horowitz explains.

And it’s not just one insurance company — but nearly every one.

The problem is so bad that when New York covered milk as a benefit, a milk bank in the state of Texas called Bouchet-Horowitz.

“They said good luck getting money from the billing. No one knows how to code for it, and it won’t get paid.”

PIX11 News has followed the New York Milk Bank for years as it’s made donor human breastmilk available to all babies in need.

“These babies must have it. We have one baby we’ve been providing since January and haven’t been paid. That bill alone is over $61,000,” laments Bouchet-Horowitz.

We asked the New York State Health Department where the holdup was. They promised to do better, saying in a statement “coverage… went into effect on July 1, 2017. The Department … will continue to… clarify billing instructions for providers…”

Meanwhile, moms like Simpson aren’t sure if they’ll lose the very food that’s keeping their babies alive and thriving. “It’s nerve wracking. It’s hard!”

We asked Fidelis Care, baby Benjamin’s insurance company, why it's denying coverage for his breast milk.

While they acknowledged our request, they sent us back to the Department of Health which oversees Medicaid programming.

The coding resolution was promised by the end of November, but The New York Milk Bank has not had it resolved.

PIX11 will continue to follow the story.