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Preemies in Need of Donor Milk are Being Denied by Insurance Companies, Milk Bank Says

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Breast milk has a ton of amazing and undeniable benefits for all babies; but for premature or medically fragile babies, receiving breast milk can be a matter of life and death. Many of these babies’ sensitive systems can’t tolerate formula, and premature babies are at high risk for a serious disease called Necrotizing enterocolitis (NEC), which can damage their intestines, and sometimes even lead to death.

But incredibly, research has proven that breast milk can actually help prevent NEC in the first place — as well as protect preemies from a host of other diseases that they’re more vulnerable to than full-term babies. For preemies, breast milk is actually like medicine, and when their mothers are unable to pump enough of it for them for whatever reason, donated breast milk is used to keep them healthy.

So when news broke earlier this year that insurance companies were beginning to cover donor breast milk for vulnerable babies, families everywhere cheered. Five U.S. states — California, Kansas, Missouri, Texas, and Utah — even passed provisions mandating that donor milk be covered under certain plans. And just this past July, New York passed a similar provision, mandating coverage for the state’s lowest income Medicaid recipients.

It was that last bit of news that left the good folks at New York Milk Bank overjoyed. The program made headlines earlier this year with their innovative delivery program, which enlists the help of an all-female biker crew. But as the months have passed, it seems that insurance companies haven’t actually been following through on this promise everywhere, as New York’s PIX 11 recently reported.

Julie Bouchet-Horwitz, executive director of the New York Milk Bank, says that the insurance claims they’ve submitted thus far have sadly been caught up in paperwork and red tape. And claims that should have gone through have been denied.

“That’s what they do,” Bouchet-Horwitz told PIX 11. “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.”

However, Bouchet-Horwitz says that none of this is stopping the New York Milk Bank from continuing their mission.

“We’re feeding lots of babies,” she told the outlet. “We’ve distributed over 85,000 ounces since we opened.”

But it is stopping the milk bank from getting properly covered for their services.

“We have one baby we’ve been providing since January and haven’t been paid,” Bouchet-Horwitz shared. “That bill alone is over $61,000.”

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Speaking with Babble, Bouchet-Horwitz makes it clear that the milk bank doesn’t actually charge for the donated milk itself. That is freely donated. It’s the labor, equipment, and handling that is costly, and is billed to the insurance companies.

“We have expenses for rent and utilities, equipment, salaries, bottles, screening of donors, blood tests and shipping to get milk to and from us,” she adds.

As a result of the payment issues, Bouchet-Horwitz says that there have been several moms of very vulnerable babies whose insurance companies were supposed to cover the milk, but who have had nothing but trouble getting it covered.

“We’ve had two babies with cancer who were both denied,” Bouchet-Horwitz shares. “One of these babies received free donor milk from us for months. We never got paid by the insurance company and eventually we gave up the fight because we weren’t a vendor and it was taking weeks to become a vendor and they would not back date the Prior Approval when we did become a vendor.”

Bouchet-Horwitz adds that another baby’s mother simply gave up because of how the difficult the paperwork was. The problem is, for many babies like hers, there’s no simply time to wait; and if they don’t receive breast milk in time, they risk death.

“When a baby needs donor milk, they need it NOW, not in 3-4 weeks when the paperwork is done,” Bouchet-Horwitz tells Babble. “We’re here to save lives and how can we tell a mother or physician or hospital that we need to wait until we receive Prior Approval. It just doesn’t seem right.”

In these extreme circumstances, the milk bank has not been waiting for approval and has giving the baby the milk that they need to survive.

“If there are truly extenuating circumstances and in a life and death matter, we will provide donor milk to a baby who needs it and fight the good fight to get paid,” Bouchet-Horwitz explains. “The baby comes first regardless of anything else.”

She shared the poignant and heartbreaking story of preemie baby Benjamin, who’d already had two incidents of necrotizing enterocolitis and three surgeries. While waiting for insurance approval for donor milk, Benjamin tried formula and quickly developed diarrhea. His doctor insisted that he be put back on breast milk, and wouldn’t allow him to be released from the hospital without it.

“We offered to provide donor milk free of charge until the insurance company paid for it,” says Bouchet-Horwitz. “That’s when his mom called us and asked how quickly could she get donor milk. She didn’t want to wait one day to ship it. She immediately came here to get the milk.”

Benjamin’s mother, Ebony Simpson, is still diligently feeding her son donor milk from New York Milk Bank, but she claims her insurance company, Fidelis Care (under the Medicaid umbrella), still has not reimbursed the New York Milk Bank for their charges.

When reached for comment, a representative from Fidelis Care shared with Babble that the company is unable to comment on individual patient cases due to HIPPA laws, but that as a general rule, Medicaid can only approve for inpatient use of donor milk, and that the state needs to fill out regulations regarding outpatient usage.

But sadly, this is where many families seem to be slipping through the cracks.

Despite everything though, the New York Milk Bank diligently — and generously — continues to provide milk for Benjamin, and all the other local babies in need of it. Still, the unnecessary struggle of it all tugs at the hearts of all those involved.

“Benjamin is gaining weight and tolerating the milk well,” Bouchet-Horwitz, shared with Babble. “How could we deny him? With his health history he might not have survived without donor milk.”

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