Pregnant, Uninsured, and Adrift

Pregnant, Uninsured, and Adrift
Illustration:Angelica Alzona

No one told Catherine Emery what labor would feel like. Just past her 24th birthday and about as optimistic as a person can be, she had done what most expectant mothers making quick calculations about out-of-pocket health care costs do: She hoped for the best. Giving birth was a natural process, she reasoned. The body will just do what it does.

Unfortunately, what Emery’s body decided to do was deliver on November 18. The due date she’d been offered was December 3, three days after the insurance coverage offered by her new job kicked in. It was her first steady gig, in the accounting department for a New Jersey landscaping firm. But she’d have to work there for six months before she could enroll in its insurance plan.

When Emery had discovered she was pregnant that spring, about four months into her term, it was “definitely an ‘Oh, shit’ moment,” she told me. She suspects it took so long for her to notice partly because she didn’t have access to regular medical care. She’d shuffled between temp gigs for a while during school. She and the father of her child weren’t, for the moment, on the best terms. By the time her water broke in the tiny studio rented with money lent to her by friends, she didn’t quite realize what was happening. She thought maybe she had a stomach virus, wondered why she kept having the sensation of needing to pee.

Emery marveled at the curious development for five hours or so, sitting in the apartment—really just a room with a kitchen—watching TV. She might have Googled her symptoms if she’d had an internet connection. But she didn’t. She was making less than $35,000 a year, and saving for a child. So she just waited to see what might happen next.

When Emery realized she was expecting a baby, she found that most private insurers wouldn’t cover her. This was 2009, before federal rules made it harder for companies to raise premiums or rule a pregnancy a pre-existing condition, a time dominated by the current administration’s favored philosophy of private market choice. It’s an era many worry will return, an anxiety worsened by looming cuts to federal programs like Medicaid. After all, securing health care as a newly pregnant woman is already a scramble, a perplexing series of applications and unsympathetic voices on the other end of the phone.

“It was almost like they didn’t want to treat me anymore. They didn’t want anything to do with me.”

For many women who are uninsured, getting pregnant triggers a cruel process of elimination, even post-Obamacare. Affordable Care Act-affiliated plans don’t open enrollment until after a baby is born, a policy the marketplace’s architects say they cribbed straight from private insurers. And Medicaid varies widely from state to state.

Giving birth in America is more expensive than in any other country by far, and it’s not as if most women are piling up savings to cover this procedure. Since 1996, the price of giving birth, along with added costs like fetal blood tests for at-risk pregnancies (estimated cost: $2,000) and epidurals ($2,132), has more than tripled. Going into labor is now the kind of unexpected medical bill that keeps people in debt for years. The patchwork of services offered for pregnant women without insurance—nonprofit clinics, government-funded health care—are often difficult to navigate.

The mean cost of a standard hospital stay and vaginal birth without complications, according to the latest available data from the Department of Health and Human Services, is $13,524, about a third of the average American woman’s yearly salary during her late twenties and early thirties. For a flawless C-section without any issues, it’s closer to $19,000.

Before the birth of her first child, Emery found out her new salary was just a few thousand dollars too high to qualify for her state’s low-income plan. And when she made an appointment with a local OB-GYN, thinking they might help her navigate the question of coverage, “it was almost like they didn’t want to treat me anymore.” It seemed, to Emery, that “they didn’t want anything to do with me.”

Eventually the same clinic helped her negotiate a visit for an ultrasound, for which she says she was billed $500. (The average “fair” price, according to Health Care Bluebook, is $263.) It was the only time she’d see a doctor during her pregnancy, until she was in the maternity ward with a resident trying several times unsuccessfully to stab an epidural in her back. She still has the scars from the dozens of times the doctors tried. But that turned out to be a fleeting trauma compared to the five years it took to pay off the $20,000 bill, which eventually went into collections, from the anesthesia and related costs.

“All that money, it was crazy,” she says. “I paid what I could out of savings, and then the rest just went on my credit report until I could pay it off.”

When I started speaking to women about their uninsured pregnancies, I was surprised at how many placed the blame for their bills on themselves. If only, she had been a “better consumer,” one told me, more attuned to a cost-benefit analysis between Medicaid and the private marketplace, more comfortable crunching potential numbers and filling out forms. Another said she wished she’d had the presence of mind, in the middle of a difficult and painful labor that lasted more than 24 hours, to refuse the help doctors were offering.

“Emotionally,” she told me with sober hindsight, the lack of control “really affected my capacity to manage the moment.”

Hanna Rief wishes she’d been more proactive: “I could have asked more questions,” she says. In late 2013, barely a year before the “ten essential health benefits” mandated by the Obama administration were signed into law, Reid and her boyfriend found she was pregnant. Working as a dental hygienist in Colorado, Rief didn’t have employer-sponsored insurance, but figured the first order of business was marrying the father of her child, who was also uninsured.

“I literally had to pull up my top and show her my belly. I had to prove it.”

Rief, 22 at the time, spent weeks calling insurance companies after the wedding. It was “a struggle,” she says. The premium for most plans was something like $900 a month. “I just remember getting denied a lot. They’d say ‘You’re pregnant, there’s nothing you can do.’” Then her brother suggested she apply for Medicaid; he had known a pregnant woman who was covered through the program, and thought she should just give it a try.

To Rief’s great surprise, she qualified, just barely. Still, human error can thwart the most comprehensive coverage: During the year Rief was pregnant, the Medicaid program, recently expanded, struggled with months-long processing ques and other issues. Now she wonders if she shouldn’t have just paid for the private insurance. “It would probably be cheaper than the bill I have now,” she says.

A full year and three months after she gave birth, Rief received an invoice for $8,996 for her delivery. When she called Blue Cross Blue Shield, they told her she’d been denied for the low-income program, and too much time had passed for her to appeal. She still doesn’t understand what happened, even after spending months on the phone. She called the hospital so often she says they started to recognize her. A few months later, they stopped working with her and sent her debt to collections. Rief is still paying off the bill.

Given her experience Rief is attuned to the complexities and small injustices of who pays what to give birth. Medicaid still makes her nervous, she says. One hygienist she works with had her pregnancy covered by her new job’s insurance, but Reif heard she still had out-of-pocket costs that exceeded $40,000. Another leaves the office a few hours early every Friday so she doesn’t work too much and get kicked off her state-sponsored plan.

And though it was years ago, one woman, Deenan Robinson, who now helps women of color in Texas navigate a health care system that is horrifically biased against them, told me about having to prove she was pregnant when she applied for Medicaid, at that time practically the only option for women seeking maternity care. In Dallas in the late ‘90s, she says, “I literally had to pull up my top and show her my belly. I had to prove it.”

The stresses that afflict any uninsured woman in America are deeply magnified for women of color. Bias in health care—from the dismissal of symptoms to insurance coverage hurdles, like what Robinson experienced—have compounded to create a truly staggering maternity mortality rate. “For black women, there is no protection,” Robinson says. They are not heard by their providers when they do seek care, and the barriers to entry for both state-sponsored and charitable health care programs are prohibitively steep. The Texas women she works with—women who are as much as twice as likely to be uninsured than white women—often have no idea about their options, even when they do exist, she says.

“Until you really need insurance, a lot of people don’t think about it.”

Kate Ende tells me that one of the biggest roadblocks women encounter can be figuring out how to even indicate on a Medicaid form that you’re pregnant. The way the application is written is actually “pretty challenging,” she says. Ende is a manager at Maine Consumers for Health Care, a nonprofit that operates a hotline for helping state residents navigate the complex network of private and public health care options. Ende says that when pregnant women call her, it’s usually because they’re going through something like what Emery and Rief did: They’ve become pregnant, and they don’t have insurance, and they’re trying to figure out what they can possibly do, short of waiting until they’re in labor and arriving at the hospital to accumulate unknown amounts of debt. “Until you really need insurance, a lot of people don’t think about it,” she says.

Just last week she spoke to a woman who had a private short-term insurance plan, like the one the Trump administration has offered as an alternative to the ACA marketplace. The woman didn’t realize, until too late, that those plans don’t cover prenatal or maternity care.

Trump and his allies are fond of blaming maternity care for high health care premiums. Last year, during a series of hearings, the Republican Congressman Joe Shimkus tried to advance the “repeal and replace” bill by making the argument that men shouldn’t have to help shoulder the burden of prenatal care. Since then, attempts to entirely dismantle the federal mandates around maternity and pregnancy have been unsuccessful, but this week the Department of Health and Human Services released its final 523-page rule book around health care—a document that, starting in 2020, would allow states to write their own, less comprehensive versions of the ten essential health benefits, which include protections against considering pregnancy a “pre-existing condition.”

For now, when women call her hotline, Ende will make sure they’re filling out the correct forms: One-fifth of uninsured women nationwide are eligible for Medicaid and don’t have it. If they truly don’t qualify, perhaps she’ll give them information on the next ACA enrollment period, or send them to one of the programs that subsidizes low-income care with member fees. There is one feminist clinic with free prenatal care near Ende’s office in Augusta, ME. But those sorts of things are harder to come by in rural areas, and people who make too much for Medicaid are also over the income limit for other programs, she notes.

Women who call the hotline “want to do everything in their power to have a healthy pregnancy,” Ende says. “But they’re scared to go into debt. You see people making really tough choice about what they’re going to cut corners on.” Pregnant women will negotiate with providers to get on a payment plan, or skip doctor’s appointments leading up to giving birth, or, if they can, drive hours from their homes for cheaper prenatal care. Sometimes they will just take on that $20,000 debt, hoping there will be no complications that tack on another few grand.

All of which is part of preparing to give birth if you’re one of the 10.5 million uninsured American women: Even under ideal circumstances, you’re making impossible choices about just how much risk you can afford to take, and hoping you haven’t chosen wrong.

Laurie Filipelli and her husband did what they thought was the responsible thing: They waited until they were financially stable to start trying to have children. They found it was harder than they’d imagined. Filipelli had two miscarriages over a handful of years. Going into their forties, living in Texas, the Filipellis resigned themselves to a life of relative precarity. When Laurie took a job at a nonprofit in 2010, teaching writers to move into public education, she signed up for COBRA, knowing the new gig came without protections. COBRA allowed her to be insured for an additional 18 months.

Around the same time, she was diagnosed with antiphospholipid syndrome, an immune-system disorder that sometimes complicates pregnancy. Late one night, after years of trying for a kid, she counted off the months of COBRA coverage she had left, doing another kind of impossible math. It was too late; she would lose coverage before a child would be born. They stopped trying. Not long after, she realized she was pregnant.

We haven’t decided whether delivering a child is a human right or an expensive and unplanned clinical procedure.

“We’d been trying so long,” she says. “There was no way we were going to terminate.” She looked at individual health plans, but with the cost it seemed to her that she would just be pre-paying for her pregnancy on an installment plan. The monthly COBRA fee was $600 a month already, and it was set to run out five days before her child was due to be born. When she told her OB-GYN about her conundrum, she says the doctor was curt. “If you’re asking me to engage,” she recalls the doctor saying, “I’m not going to do that.”

Fillipelle didn’t feel as if she had much choice, if she wanted to go through with the pregnancy. She started researching natural childbirth. They took a Bradley class, based on the “husband-coached” childbirth method popularized in the ‘60s. Filipelli became obsessed with the idea of avoiding a C-section and preparing her body for the shortest possible hospital stay. She focused on the things she could control: eating healthy, educating herself on the potential procedures. She and her husband negotiated with the hospital, saved, and prepared to pay a portion of her bills upfront.

In a country where a large swath of the men creating health policy valorize women who choose to deliver and raise their kids, it’s alarming that people with the most deliberate of plans would end up facing such unbearable odds. Even with the protections that have been enacted since Fillipelli gave birth, we haven’t decided whether delivering a healthy child is a human right or an expensive and unplanned clinical procedure, like open-heart surgery or having a gallbladder removed. And of the women I spoke to, that impossible math was as much a moral calculation as the checking off of dollars and benefit-covered days: “The burden around maternity,” says Fillipelli, “is that it’s not shared in an equitable way. We view the child as the mother’s responsibility.” And the responsibility for that child can overshadow a woman’s concerns about herself.

Filipelli’s insurance ran out on January 31. On the morning of February 6, she went in for a routine check and was sent to the hospital; her amniotic fluid had dropped and labor was imminent. She wasn’t dilating, and the doctor offered her a choice: a cervical softener she was wary of, or a C-section. She chose the former. “It’s incredibly painful,” she says. “You’re having these intense contractions coming faster and faster, and you’re not getting an epidural because your doctor is saying if you don’t want a c-section, you need to not get one.”

Filipelli would spend nearly 24 hours in labor, throwing up, sleeping for 30 seconds at a time, racked by pain, until she gave birth. No one asked if they had insurance, Filipelli says. She thinks if she hadn’t been so exhausted, maybe she would have refused the carts that rolled in for additional tests, or the ibuprofen that later cost $8 a pill on her eventual bill. The $20,000 bill could have been enough for a down payment on a house, she says. Closing in on 50 years old, she and her husband are still renters.

A few years ago for Christmas, Filipelli’s husband handed her a photograph of her own pregnant stomach with the words “Capital One” stamped on it. As a gift, he had finally paid off the outstanding bills from her delivery.

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