Amy Bassett, an international board-certified lactation consultant (IBCLC) in Orlando, Florida, was surprised when she started getting calls for breastfeeding help from families with Aetna insurance at the beginning of last year. She had never applied to be in the insurer’s network nor signed a contract with the company. Nonetheless, it was a boon to her fledgling business. “Since accepting Aetna, our practice has doubled, both in the number of providers and in the number of families we help every month,” she said.

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A year later, her relationship with Aetna soured. The company slashed reimbursement rates, then began paying inconsistently. Bassett started getting a stream of bills from the insurer demanding that she repay thousands of dollars that it says it paid out in error. As of June 1, Bassett says, the insurer owes her more than $50,000 in unpaid claims. To keep her business and family afloat, she stopped paying herself and dipped into savings. “Basically, we’re working all for free,” she said.

Shannon Tougher of Brooklyn, New York, faced a similar problem from the consumer end of things. Last year, Tougher gave birth to twins prematurely and suffered complications herself. She needed help learning tandem nursing positions, creating a schedule for pumping and feeding, and troubleshooting problems like clogged milk ducts. “The lactation consulting, in a word, was indispensable,” Tougher said. “Without those interventions, my nursing would’ve ended early on. Instead I’m still nursing them at 18 months.” But to get that help, Tougher and her husband John had to pay about $2,000 out of their own pocket. Their insurer, Empire Blue Cross Blue Shield, had no lactation consultants in network, they said, and would not authorize the family to see anyone out of network.

It’s not supposed to be this way. As of August 2012, the Affordable Care Act (ACA) mandated that new individual and employer-based health insurance plans cover breastfeeding support and supplies at no cost to families. But in conversations with at least a dozen U.S.-based, board-certified health care professionals who specialize in the clinical management of breastfeeding, as well as with families like Tougher’s who are denied coverage for lactation consulting and related services, this does not appear to be happening.

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According to Susanne Madden, chief operating officer and co-founder of the National Breastfeeding Center, a health care advocacy and consulting group, the wording of the law is vague enough that insurers have managed to find ways to avoid covering most services. “Due to the ambiguity in the law, insurers need only provide the most minimal of coverage in order to meet that law,” Madden told me, “resulting in most moms not being able to access lactation services from trained lactation specialists.”

As politicians debate the future of health care in America, it’s worth reflecting on the fundamental brokenness of a system that doesn’t support the most elemental act of wellness — a mother feeding her child. Indeed, the frustrating experiences of Bassett, Tougher, and what are almost certainly millions of other Americans reveal what a fee-for-service system truly holds dear.

“Our health care system prioritizes and values what it can make the most money out of,” said Madden, who formerly worked as a senior manager at the insurance company UnitedHealthcare. It’s also a system that undervalues women’s health, she said, noting that there’s no issue with covering colonoscopies or other preventive services that also pertain to men. “The reality, too, is you’ve got mainly male executives in these insurance companies making decisions around health care,” said Madden. As a result, “there is a limited understanding around lactation period, right? It’s a woman’s thing.”

The preponderance of evidence suggests that breastfeeding has health advantages for moms and babies. In infants, breastfeeding is associated with a lower risk of asthma; childhood obesity; ear, respiratory, and gastrointestinal infections; sudden infant death syndrome (SIDS); and necrotizing enterocolitis, a potentially deadly intestinal disease that affects mostly premature infants according to the U.S. Centers for Disease Control and Prevention (CDC). In mothers, the agency states that breastfeeding can lower the risk of high blood pressure and Type 2 diabetes as well as ovarian and breast cancer.

Overall, the CDC, along with the American Academy of Pediatrics, the American College of Obstetricians and Gynecologists, and other public health organizations recommend feeding infants breast milk exclusively for six months, and continuing to breastfeed longer if possible.

Breastfeeding also translates into huge savings for our health care system. According to an online calculator based on a 2017 study, and published by a nonprofit breastfeeding advocacy group, increasing the percentage of women who breastfeed exclusively for six months from the current 25 percent to 80 percent would save an estimated $1.2 billion in direct medical costs.

That all sounds great, but like Tougher, many women need help with breastfeeding, especially in the first weeks after giving birth. Four out of five U.S. women start out breastfeeding, but by three months, less than half exclusively feed their infants breast milk according to a 2018 CDC report. A 2017 Cochrane review of 73 studies involving about 75,000 mother-infant pairs concluded that women who get breastfeeding education and support nurse their babies longer and are less likely to supplement with formula than those who don’t.

Those factors — exclusive and longer duration of breastfeeding — are both associated with increased health benefits for both mothers and babies, said Melissa Bartick, an assistant professor of medicine at Harvard Medical School and one of the researchers who helped develop the health-savings calculator. “Breastfeeding support is vital for many new mothers to continue breastfeeding,” said Bartick. “Lactation specialists, like IBCLCs, are specially trained in identifying breastfeeding problems — training that pediatricians and OB-GYNs do not get.”

As a profession, lactation consulting emerged in the 1970s and 1980s to step into the time-honored role midwives and other experienced women had played for centuries. Today, while people with varying levels of training can provide breastfeeding help, the most rigorous and widely recognized credential is the IBCLC, established by the International Board of Lactation Consultant Examiners about 30 years ago. The certification requires applicants to take at least 14 health-science classes and 90 hours of specific lactation education, have 300 to 1,000 hours of supervised clinical experience, and pass an exam.

Many other countries include breastfeeding support as a routine part of care. In several European countries, for example, midwives or other health professionals do several follow-up visits after birth, often in the home, to make sure that mother and baby are well and assist with breastfeeding.

Mothers get settled in for their breastfeeding class with a lactation consultant. Despite provisions in the Affordable Care Act, most insurance companies don’t include lactation specialists in their networks at all. Visual: Jeff Hutchens/Getty Images

So why are U.S. insurers balking? Madden said that in her experience from having worked on the inside, insurance companies are far more interested in cutting short-term costs to boost quarterly profits than they are long-term savings. And welcome as they were, the ACA provisions provide loopholes insurers can exploit to avoid paying benefits, said Madden. Federal guidelines specify that insurance companies must cover comprehensive lactation support and counseling from a trained provider and the costs of renting or purchasing breastfeeding equipment for the duration of breastfeeding. But guidelines also state that “plans and issuers may use medical management techniques to determine the frequency, method, treatment, or setting for a recommended preventive item or service.”

A 2015 report from the National Women’s Law Center (NWLC), a Washington D.C.-based nonprofit, found that some insurers use that “medical management” clause to severely restrict when, where, how often, and from whom women can get care. Some plans only cover breastfeeding help in the hospital, for instance, or limit mothers to a single appointment. The law doesn’t specify coverage of the electric breast pumps essential for working moms, so a plan may only cover cheap manual models. In 2017, lawyers for UnitedHealthcare argued in federal court that because the ACA classifies breastfeeding support as “preventive care,” the company should only have to cover breastfeeding education, not care for mothers experiencing problems nursing their infants. (The judge rejected that reasoning, but the lawsuit is ongoing.)

One of the biggest issues is that the law doesn’t define “trained provider.” As a result, most insurance companies don’t include lactation specialists in their networks at all. Instead, plans often refer women to their obstetrician or to the child’s pediatrician — neither of whom typically has the time or the training for lactation counseling. Or they may be referred to the hospital lactation consultant, who only sees hospital patients. Insurers are required to allow women to go out of network when no one in network can help, but as in Tougher’s case, getting the official OK often takes too long when a mother needs immediate help feeding her baby.

Legally, according to the NWLC, insurers aren’t supposed to use medical management techniques to avoid complying with the law, but they have gotten away with it. “We are now many years down the line and still getting complaints,” said Dorianne Mason, the NWLC’s director of health equity. “From women who have five weeks ago given birth and haven’t been able to get connected to a lactation consultant, or people who are spending hundreds of dollars out of pocket.”

In an emailed statement, UnitedHealthcare told me that the company does have lactation specialists in network, though when I checked its provider network, I found very few, if any, available in several major cities. While Cigna, another company, said that it covers breastfeeding consults at no cost to clients and does not require pre-authorization to go out of network, numerous lactation consultants refuted that was the case. Meanwhile, Tougher’s husband John, who uses a different last name and asked that it be withheld out of privacy concerns, kept screenshots from last year showing that, at the time, Empire Blue Cross Blue Shield did not have lactation consultants in its network.

The parent company, Anthem, would not comment on Tougher’s case specifically. In an email message, a spokesperson said that the company currently includes lactation specialists in its network. But when John and I consulted the “find a doctor” tool on the website for New York City — he was searching as a member; me, as a guest — we both got the same unhelpful message: “Counseling services for breastfeeding (lactation) may be provided or supported by an in-network (participating) provider such as a pediatrician, OB-GYN, or hospital. Contact your provider to determine if lactation counseling services are available.”

Sadly, the more than 40 percent of women who give birth in the U.S. who are insured by Medicaid often have even less access to breastfeeding care than mothers with private insurance. While Medicaid expansion plans are subject to the rules of the ACA, traditional Medicaid plans are not, and coverage varies widely by state. A 2017 survey by the Henry J. Kaiser Family Foundation found that of the 41 states that responded about their traditional Medicaid plans, 16 covered visits to a lactation consultant in a clinic; only 11 covered a home visit.

No one I spoke with in the course of researching this was optimistic that things would get better without a dramatic change in the system. In 2013, the National Breastfeeding Center started issuing annual scorecards for health insurers as a way to hold them accountable to the law and “shame” bad actors into compliance, Madden said. It hasn’t worked. On the most recent scorecard, issued in 2017, about half of the 111 plans analyzed received a “C+” or lower; only nine earned an “A-” or above. Overall, the scores haven’t gotten better, she said.

“Who is really going to take them to task?” asked Madden. “Are moms gonna self-organize and storm the castle?”

They just might have to, suggested Alyssa Goss, an IBCLC in Austin, Texas. Goss told me that to accommodate Aetna’s cutbacks, she’s had to shorten the time she spends with patients, sometimes coming back multiple times instead of handling issues in a single visit. And while it’s unfair to ask families to take on the system while they should be focused on their babies, that’s probably what it’s going to take, she said. “If all the women that I saw this last year rose up and demanded of their insurance companies that they cover these services, they would.”

Along those same lines, Bassett and several of the IBCLCs I spoke with said that they have formed a coalition and hired an attorney to negotiate with Aetna, the one major health insurer that apparently didn’t participate in these sort of runarounds — at least until recently. (The company did not respond to my repeated emails and phone calls seeking input on the issue.) In addition to resolving the claim disputes, they hope to convince Aetna to clearly spell out its reimbursement policies and implement them consistently.

But taking on the insurers can be a scary tack for small business owners with livelihoods on the line. “I’m afraid that through some of the action we’re taking against [Aetna], they’re going to be like Blue Cross Blue Shield and other insurance companies and just say, ‘Okay, we don’t want anything to do with you,’” said Leah Segura, a private practice IBCLC in the north central region of Michigan. Rather than work with lactation consultants like her, she fears, they’ll “just slam the door in our face.”

Still, fighting back might be the only way to force change. CareFirst Blue Cross Blue Shield, for example, which has more than 3 million customers in Maryland, the District of Columbia, and Virginia, settled a class action lawsuit last December for an estimated $3.6 million, resolving claims that the insurer failed to provide the breastfeeding benefits required by the ACA. As part of the settlement, CareFirst agreed to add lactation consultants to its network. The plaintiffs’ lead attorney, Nicholas Chimicles told me that his firm has similar cases under way against UnitedHealthcare, Wellmark Blue Cross Blue Shield, and Health Care Service Corporation, a holding company that owns and operates Blue Cross Blue Shield entities in five states.

Of course, there’s no guarantee that insurers will step up. After haggling with Empire Blue Cross Blue Shield for months, Tougher’s husband John said they convinced the company to pay just $339 of more than $2,300 in claims for lactation services. “It shouldn’t be that hard,” he said. He has now filed a complaint with the New York State Office of the Attorney General. Companies should not get away with having no lactation consultants in network, he told me, and delaying out-of-network requests so long that clients either give up, or pay for the appointment themselves.

“I feel like it’s illegal,” John said.

UPDATE: This story has been updated to note that while Cigna states its policy covers breastfeeding consults at no cost to clients and does not require pre-authorization to go out of network, many consultants state that in their experience, that has not been the case.

Teresa Carr is an award-winning, Texas-based journalist with a background in both science and writing, which makes her curious about how the world works. She is a former Consumer Reports editor and writer, and a 2018 Knight Science Journalism Fellow at MIT. In 2019, she began penning the Matters of Fact column for Undark.