When babies need donated breast milk, should states pay?

Taxpayers in New York may soon be covering the cost of a new kind of medicine: breast milk.

A bill on New York Governor Andrew Cuomo’s desk would require Medicaid to pay for donor breast milk for certain premature babies.

The bill reflects a scientific consensus that breast milk can be essential medicine for infants on the cusp of life and death, helping to prevent infection and ensure healthy brain development.

But in an irony of biology, the babies who need breast milk the most are also the most likely to have trouble getting it. Many mothers who deliver prematurely are unable to produce enough milk, often from a combination of infants’ trouble suckling, medical complications, and the stress and separation that an ICU imposes on the pair.

Pasteurized donor milk could help those babies, but it’s often not covered by either private or public insurance. And buying donor milk without insurance can easily cost thousands of dollars a month.

That leaves many newborns, especially those in low-income families, without access. At “safety-net” hospitals where more than 75 percent of patients are on Medicaid, only 13 percent routinely make donor milk available to premature babies in intensive care, according to a 2012 survey.

In the last few years, five states and the District of Columbia have moved to fill the gap by mandating Medicaid pay for milk for some babies. New York’s law could be the most far-reaching, since it provides for such milk for as long as it’s medically necessary, no matter the infant’s age. And supporters say it will produce a net savings for Medicaid: According to the New York branch of the American Academy of Pediatrics, giving the state’s 3,500 eligible infants donor human milk will save $10.5 million in direct hospitalization costs.

‘I was frantic’

Lucía Rojas was born in upstate New York on February 21, 2015, three months premature and weighing only 1 pound, 9 ounces. At 2 weeks old, she went into septic shock and had to have surgery to remove part of her intestines.

Doctors advised that she be fed only breast milk until she transitioned to solid foods. But when Lucía’s mother MarySara took her home from the hospital at 3 months old, MarySara began having difficulty producing enough milk. Lucía refused to eat formula, and her growth soon flatlined.

Rojas recalls being “absolutely terrified.” “Every time I sat down to feed her, in my head I heard the warning from the [neonatal intensive care unit] nurses that if she didn’t gain weight at home, she’d have to come back to the hospital,” she said. “I was frantic.”

Rojas had heard about people buying and selling breast milk online, but was wary of that, so she did some research and discovered milk banks. Such banks have sprouted up across the United States, selling milk donated by mothers and then pasteurized. This approach is medically endorsed, but it’s expensive, running about $4.50 an ounce.

She called the Massachusetts-based Mothers’ Milk Bank Northeast. After obtaining a prescription from Lucía’s doctor and filling out some paperwork to qualify for financial assistance, frozen bottles of donor milk began arriving at the Rojas’s door by overnight mail. Before long, Lucía had gained five pounds.

But despite the bank’s help, costs were piling up. Babies between 1 and 6 months eat approximately 25 ounces a day, which amounts to over $3,300 a month in donor milk.

Had Lucía had private insurance, it may have covered the cost of donor milk — but since she was on Medicaid, the family was on their own. “We didn’t have the money for donor milk,” Rojas said. “But thanks to some outside assistance, the help of the milk bank, and our credit cards, we were able to spread out the substantial costs, and feed Lucía.”

Breast-fed infants have lower rates of infections, allergies, and, later in life, obesity and diabetes. And breast milk is especially important for premature babies. Breast-fed premature infants have lower rates of neurodevelopmental delays than those who are fed formula. Breast milk also helps prevent an intestinal infection called necrotizing enterocolitis (NEC), which can overwhelm an infant’s underdeveloped immune system. The infection, which strikes approximately 10 percent of premature babies, has a mortality rate of around 30 percent.

For those reasons the American Academy of Pediatrics recommends all premature infants receive human milk, whether from their mother or a donor.

California has covered breast milk for some low-income newborns since 1998. Texas followed suit in 2008, as did Missouri and the District of Columbia in 2014, and Kansas and Utah in 2015.

A patchwork of help

In the dozens of states where donor breast milk is not covered by Medicaid, hospitals and families make do with a patchwork of help.

Some families enter into casual milk-sharing arrangements, or buy unregulated breast milk online. In both cases, as the milk is nonpasteurized, it carries the risk of transmitting diseases — an especially dangerous possibility for premature babies.

In other cases, hospitals or insurers make one-off decisions to help families out. Montana Medicaid has covered the costs in a few cases. Pennsylvania Medicaid provider AmeriHealth Caritas recently implemented a clinical policy recommending coverage of medically necessary donor milk, which was also adopted by its affiliate organizations in Nebraska and South Carolina. Ohio has a program that helps low-income families with ill children cover the cost of donor milk for outpatient use.

Some hospitals pick up the tab for breast milk, but limited funding can mean triage is required; the most fragile inpatient infants get priority. A handful of hospitals have established their own milk banks, but these cost approximately $150,000 to create and $150,000 a year to maintain. Not every hospital can afford to set aside any money for donor milk.

And the issue disproportionately weighs on the poor. According to the New York branch of the American Academy of Pediatrics, up to 70 percent of preterm infants in the state are born to mothers on Medicaid.

“Surviving infancy in America shouldn’t be about being lucky enough or wealthy enough to receive such a basic thing as milk,” Rojas said.

A matter of priorities

Advocates of the New York bill have christened it the “Nickolas Bill” in honor of Nickolas Bell, who was born in May 2015 at 14 weeks premature. When he and his twin brother were transferred to a hospital closer to the family’s home, they were switched from donor milk to infant formula because the new hospital couldn’t cover the cost of donor milk. Nickolas died at 5 weeks old after developing NEC.

But not all health officials support covering donor milk.

After reviewing a proposed bill last year, Washington’s Department of Health decided that a mandate was unnecessary, citing a lack of current evidence on the safety and efficacy of donor human milk and a lack of evidence-based clinical guidelines for its use. The department concluded that hospitals should negotiate directly with insurance carriers to get donor milk covered.

“It is not so much a question of [states] not having the money, but rather the priorities of what to spend their money on,” said Naomi Bar-Yam, executive director of the Mothers’ Milk Bank Northeast, and president of the Human Milk Banking Association of North America. Medicaid coverage tends to eventually pave the way for private insurance coverage, she said, and Bar-Yam expects a fair amount of opposition to the latter: “Insurance companies generally do not like coverage to be mandated.”

Still, most of the bills that have made it to voting stage have been voted for unanimously, often on the argument that the outlay for breast milk will save states money in the long run. It’s estimated that every dollar spent on donor milk saves between $11 and $37 in medical spending.

Tissue or food

At the core of this issue is how human milk should be categorized: Is it food? Medicine? Tissue?

“Human milk is surely preventive medicine,” said Bar-Yam. But since there is no federal regulation on how human milk should be classified, states can decide for themselves. This can lead to some obvious gaps in coverage. “The [Food and Drug Administration] considers donor milk to be a food; insurance companies cover medicine, not food,” Bar-Yam pointed out. “Federal guidance and federally supported research on this issue would be helpful.”

New York, Maryland, and California classify human milk as tissue, meaning milk banks are treated more like blood banks. That divergence from FDA guidance makes breast milk tricky to navigate. In 2011, a Maryland work group considering a bill to provide Medicaid coverage of donor breast milk concluded that its execution might prove discouragingly complicated: Foods are charged to the hospital’s room and board, while tissues are billed to Medicaid as a separate item. The work group recommended against the legislation.

The Human Milk Banking Association of North America hopes more states — or even the federal government — will reduce financial barriers to receiving donor milk by passing legislation like New York’s.

Lucía is now 18 months old. Rojas said donor milk is “the greatest gift,” and that she is so grateful Lucía received some when she needed it. After exhausting every avenue to get the costs of her daughter’s donor milk covered, Rojas appealed the denial from insurance. Her appeal is still in process.