“I wouldn’t have this child without Massachusetts insurance,” my friend Margaret Monteith told me over Skype one December morning. She was talking about the baby she expected in May, a somersaulting boy recently glimpsed, at the end of her first trimester, on ultrasound. It had taken Margaret and her husband, Matthew, nine rounds of IVF, seven miscarriages, and extraordinary patience and self-advocacy to achieve this pregnancy. At sixteen weeks along, Margaret was happily nesting and had just converted a small back bedroom of her Jamaica Plain apartment into a guest room for visiting family and friends. She’d checked out day cares and preschools; she’d been reading books on sleep schedules. She turned her computer screen so that I could see the spindled antique crib, a family heirloom dating to the 1800s, already set up in the corner of her living room.
Margaret is a writer and middle school teacher; she loves running and the outdoors and looks to my eyes a decade younger than her age of forty-five. We met in 2011 at a summer conference for writers, talked books and stories, gossiped, drank wine, went swimming, commiserated about K–12 teaching and the writing life; but the greatest sorrow of both our lives—that we could not have children without prohibitively expensive medical treatment—never once came up. At the time, she and her husband, a photographer and college professor, lived in New York; what they earned that did not go to rent, food, utilities, and student loan payments went to premiums on a health insurance plan that would never cover the comprehensive fertility treatment they needed.
Margaret was thirty-seven when she began trying to get pregnant, thirty-eight when she first saw a reproductive endocrinologist. “My ob-gyn never indicated any problems at any point in my life before I began trying and it didn’t work, so while I was aware that infertility is always a possibility, I wasn’t too worried, just aware of the possibility based on friends’ experiences,” she said. “I wasn’t worried about my age either, as my ob-gyn wasn’t, the first RE I went to wasn’t, and so many of my friends are older mothers.”
Like me, Margaret tried less-expensive treatments first: oral medication, intrauterine insemination. These treatments are so much less effective than IVF that most clinics don’t even keep careful track of them; doctors seem to be guessing when they offer success rates. “Ten percent? Fifteen?” It wasn’t until a lucky break—new jobs for Margaret and her husband in Boston—that more aggressive treatment became an option. By then she was forty-two.
New York, where Margaret and her husband lived when they first sought treatment, is one of fifteen states requiring some coverage for infertility treatment in all insurance plans written for its residents. The problem for people like Margaret is that coverage is mandated only for “the diagnosis and treatment of a correctable medical condition, solely because the condition results in infertility.” That means that a woman with a correctable tubal blockage, or a man with a varicocele affecting sperm production, could have surgery to correct those issues, even though surgery might not be the most effective or fastest treatment, and even though those issues are less common, for example, than diminished ovarian reserve or poor sperm count. IVF—often the most effective treatment, and the one most people have trouble affording—is specifically excluded from New York’s mandate.
Reading about the mandatory coverage requirements of the fourteen other states is like looking at a map meant to show arbitrary signs of regional diversity: this state calls soft drinks pop, this one Coke. Arkansas, for example, allows for IVF treatment—but only up to a lifetime maximum of $15,000. Maryland insurance plans pay for IVF, but only with “the patient’s eggs” and “her spouse’s sperm.” Rhode Island insurers provide up to $100,000 to “presumably healthy married individuals” who are forty years old or younger. Hawaii provides for a single IVF cycle, but only after a couple really tries: its plans require five years of infertility. Montana and West Virginia require coverage for infertility without defining the condition or the amount or type of coverage. By contrast, Illinois appears quite generous, requiring plans to pay for up to six egg retrievals—until you look more closely and see that only someone successful after four retrievals (experiencing a “live birth”) may return for the other two.
It’s easy to see, even in states that have attempted to provide infertility coverage, who gets left out: people who have complicated diagnoses or need expensive treatment, like Margaret; people who are older; LGBT couples, people in unmarried partner ships, or women who have decided to get pregnant on their own. “I have friends who live elsewhere who don’t have this level of insurance and don’t make enough money to pay for the treatments. Many of my friends who have been able to afford it either had high paying jobs or well-off parents to help them,” Margaret told me. “It’s heartbreaking to me because it seems that having children should not be based on being wealthy enough.”
In the RESOLVE support group I attended for more than two years, we rarely talked about money or the cost of treatment. Someone might mention that her health insurance covered IVF or injectable meds, or describe a package plan purchased through one of the local clinics, but the people who gathered around the hospital basement table were as different in terms of what we paid for care as the random collection of states with IVF coverage were in terms of what they covered. More than that, the connection between our financial circumstances and our ability to achieve and sustain a pregnancy was too great, and too sensitive. More than any other factor—age, sperm count and quality, egg reserve as measured by hormonal tests—the resources we could allocate to treatment appeared to determine our outcomes. It was a numbers game, I began to believe as I saw, again and again, the most intrepid injectors and IVFers and IUIers finally dropping out of our group: they were pregnant, at long last.
Not everyone achieved her pregnancy the same way: one woman in my group injected the last of her follicle-stimulating medication, left over from a previous cycle, without telling her husband; they had sex and she became pregnant with twins. Another woman, after failing at IVF and countless cycles with injectable medication and timed sex, went back to IUIs and conceived her daughter. One couple tried embryo adoption, another donor egg, and both went on to have healthy pregnancies. I remember thinking that some of these women should give up, move on—they’d had so many failures, so many interventions, they’d never get pregnant.
A few did just that; they’d exhausted their resources after one or two cycles of IVF and could no longer bear the way meetings reminded them of their failures. But of those of us who could afford all the costs that many rounds of medical treatment entail—the drain on savings or credit, the emotional turmoil, the time away from work—all became pregnant, one by one returning to the group to announce the shockingly good news. It was the reverse of the ill-considered folk wisdom most of us had heard from family or friends: As soon as you stop trying, you’ll get pregnant. Our truth was more like this: Keep trying—an expensive proposition for almost all of us—and you’ll eventually have success.
The biggest difference I noticed at our fertility clinic’s new suburban location, aside from nicer waiting and examination rooms, was in how we made our payments. While we once wrote checks and processed insurance claims through UNC Fertility, now all financial interactions would go through IntegraMed, a company that runs niche outpatient medical centers (“dominant,” according to their website, in fertility and vein clinics).
We knew this and had already paid IntegraMed $20,200, just a few days after returning from Iceland. In exchange for the overwhelmingly large bank draft, we received a contract eight pages long, detailing a strange financial arrangement known euphemistically as a cost-share plan. According to our contract, the money we paid made us eligible for up to three rounds of IVF and three frozen-embryo transfers. The arrangement didn’t cover medications, but the most expensive IVF line items—the egg retrieval and fertilization, the embryo culturing, the transfer—would be paid for ahead of time, in a lump sum that allowed us, as the brochures promised, to “focus on having a baby!”
Behind IntegraMed’s cheery messaging—their fertility-related website exhorts patients to “plan for success” and offers a chatty, inspirational blog—Richard recognized something else. Without the option of insurance—our state was not among those with even vague requirements—we’d hedged our bets, buying into something closer to a financial derivative, such as a credit default swap, than a health insurance plan.
A credit default swap works like this: One party wants to sell an asset with an uncertain future value—for example, a pool of mortgages with an average interest rate of 7 percent—for a flat price in the present. The buyer manages her risk by requiring additional security from the seller: if those mortgages don’t return at 7 percent—if a significant group of homeowners defaults and they pay out at only 3 percent, for example—the seller agrees to cover part of the buyer’s loss. The product is often nothing as specific or tangible as a mortgage; it’s just a bunch of money, an opportunity, a bet.
Had we paid for IVF treatment per cycle, we would have been charged approximately $11,000 for each cycle. It was likely that I’d need more than one cycle to get pregnant—in fact, I might need all three, and it was easy to imagine losing our nerve after the first or second failure. And what if three, or even four or five, cycles failed? Under a traditional payment arrangement, we’d be out tens of thousands of dollars, some of it borrowed or liquidated from our retirement plans. With the cost-share plan, we’d get a 70 percent refund if we did not “take home a baby,” money we imagined reinvesting into adoption or foster-care expenses.
We were betting, then, on our own failure—just one failed cycle would make the plan financially sound. IntegraMed was betting on our success. They’d verified my age (thirty-six at entry to the program), the level of my hormones indicating my egg reserve, and the results of Richard’s sperm analysis; they’d reviewed a hydrosonogram to check the condition of my uterus. I was healthy, and my ovarian reserve qualified me for the program, though the contract I signed stipulated that IntegraMed could cancel my participation and provide a refund for “any reason in its reasonable discretion”: if my ovaries didn’t produce enough retrievable eggs, if the embryos were of poor quality, if I suddenly gained or lost a lot of weight, had a bad reaction to medication, ignored medical advice, or passed my thirty-eighth birthday.
Looking back, it’s easy to see that the deal was always skewed in their favor. IntegraMed could cancel our contract at any time, provided they refunded 70 percent of our money—they have many clients and, presumably, extensive actuarial data to consult when considering the best time to back out. A friend from my support group was surprised and distraught to have her IntegraMed contract terminated after two cycles; she thought she’d get at least three chances, as the brochures and website suggest. Still, she didn’t think of the arrangement as a bad deal—with 70 percent of her money returned, she could afford to try again at another clinic.
Richard and I knew that spending more money than we would have under a traditional payment arrangement was a possibility; that was the possibility we hoped for, in fact. We hoped to spend more money than we needed, hoped that our precaution—all those extra cycles, fresh and frozen—would prove overzealous. The website that advertised our package plan promoted it as a way of controlling costs, managing stress, and removing the unknown from our treatment plan. In some guilt-prone, superstitious part of my brain, I must have thought, too, that paying more might make me worthier of success. Perhaps by paying extra I could skip the miscarriages, chemical pregnancies, cancelled cycles, and laparoscopic surgeries of my peers—those offerings of suffering I’d seen so many others make on the journey to parenthood.
When I became pregnant from our first cycle, I didn’t regret the money we spent or wish we’d chosen differently. After dreading IVF, hating the nightly injections as much as I expected, and desperately fearing a poor outcome, I was relieved and joyous, taking not one but three pregnancy tests, just to watch the second line turn pink again. I didn’t think about the $9,000 we might have saved for other health-care costs—our daughter’s birth, for example—or expenses associated with having a family. Regret didn’t enter my mind.
I refused to think of the money, in fact, for the duration of my pregnancy, fearing that to do so would be ungrateful, greedy, a tempting of fate. Now, when I think back on the financial arrangement we entered into with IntegraMed, I am of two minds: happy that we made the decision but sorry that we had so few other choices. Further, I’m troubled by the idea that investors are somewhere making money by exploiting the lack of coverage for a financially and emotionally risky medical procedure.
My happiness with the decision is of course bolstered by the conception and birth of my daughter—how could I feel any other way? But I’m far enough removed from the experience of IVF—she’s crawling toward me as I write this—to know that I would have been just as likely to get pregnant had I paid less.
I believe that my pregnancy was safer because of the cost-share program, however, and this is the primary reason I’d make the same choice if I had to do it again.
Patients undergoing IVF are hoping, generally, for high numbers: we want to retrieve as many mature eggs as possible, and for those eggs to fertilize and develop into multiple embryos. A greater number of embryos means that doctors can select the best, most regularly celled and advanced for transfer. On day three of the embryos’ development, embryologists like to see embryos with six, seven, eight, or nine regular cells.
We were lucky to have a number of embryos available to transfer—ten on day three, with seven developing to the blastocyst stage on day five. Years earlier, when our doctor first suggested IVF, I remember Richard joking, “Twins would be fine!” Dr. Young cautioned, reasonably, that his goal was for his patients to have one healthy baby at a time, and by now we agreed. I’d read about the health risks for twins, including prematurity, low birth weight, an increased chance of prescribed bed rest for me—the best way to avoid this, I knew, was to transfer a single embryo.
I’m not sure how many of Dr. Young’s patients purchase a cost-share plan, as we did—the clinic doesn’t advertise or publish that information—but I believe that anticipating a financially mitigated failure (we would be responsible for medication but not the cost of another transfer or IVF cycle) gave us the confidence to choose a single embryo transfer. SET is commonly practiced in European countries with mandated IVF coverage—in Sweden, for example, 70 percent of all IVF procedures are elective single embryo transfer, and the twin rate from IVF is 5 percent (by contrast, our clinic’s twin rate for my age group was around 30 percent).
Responsible doctors like ours routinely mention the risks associated with twin births while misunderstanding some of the financial motivations behind their patients’ choices. In a blog post for his clinic, Reproductive Medicine Associates of New Jersey, Dr. Thomas Molinaro blamed our success-driven culture: “In America we are consumers and we are inundated every day with the consumer mentality,” he wrote.
There is no doubt that everybody wants to be successful and they want the best chance at pregnancy. But sometimes patients view themselves as a customer purchasing a product rather than as a patient coming to a physician for treatment. The biggest obstacle I face to single embryo transfer is the couple sitting across the table from me who are weighing the risk of a twin pregnancy with the potential improvement in success. Time and time again I hear patients say that they would rather have two embryos transferred because it improves success and they just can’t bear the thought of another negative pregnancy test.
New Jersey, where Dr. Molinaro works, has one of the most generous IVF mandates, requiring insurance companies to pay for up to four IVF retrievals. In fact, his clinic boasts a 30 percent SET rate for women in my age group—more than three times higher than the national average and six times higher than the one at my clinic. But Dr. Molinaro’s hesitant patients may anticipate needing more than four cycles, or they may work at a small company or for a religious employer—both are excluded from New Jersey’s mandate.
Because Richard and I spent two years saving for IVF, we were able to fake a limited kind of insurance coverage through the purchase of an unregulated financial derivative, insulating us against the kind of risky decision making that is routine in most clinics. On the day of transfer, our doctor and embryologist showed us two embryos—the one they’d chosen, already hatching, and the runner-up, which might have accompanied the first. You have about a fifty-fifty chance, Dr. Young told us, slightly higher if you go with two. I was in a hospital gown and socks, my abdomen still swollen and sore from the retrieval days before. I held the photos of the embryos in my hands, ours to keep. We hesitated, just for a moment, before sticking by our decision. Five weeks later, we saw the heartbeat.
Just one, as we’d hoped.
We told Richard’s parents about the pregnancy at a Chinese restaurant in March. We hadn’t told them that we were pursuing IVF, though they knew we’d been in treatment for infertility for years. After exclaiming in joy and praying aloud, Richard’s mother asked us the first question that came to her mind: “Did you do it the natural way, or did you pay eighty thousand dollars?”
“Neither,” Richard said firmly. He explained the IVF process to his parents without telling them how much we’d spent or how we’d saved the money.
I’m not sure if $80,000 represented a real amount Richard’s mother imagined us capable of spending, or hyperbole meant to express the exorbitant price of assisted reproduction. Eighty thousand dollars was more than Richard’s family paid for their first house, more than my parents paid for the house they live in now. It was also, of course, significantly more than we paid for our IVF package and medication. But it’s not an impossible number with tough cases—Margaret Monteith’s three-year odyssey would have cost far more than that had she paid entirely out of pocket (even with Massachusetts’s comparatively generous insurance plan, treatment wiped out Margaret and her husband’s savings). Maybe my mother-in-law had heard how much some celebrity paid for their miracle baby, or read an article about cases like Margaret’s.
More interesting to me is the way that great sum of money represented, for my mother-in-law, the most salient feature of my unnatural pregnancy. What was most unnatural and confusing about it was not the way it had been accomplished—outside of the womb, in a laboratory—but the fact that we’d paid for it to happen.
Surgeries and serious medical treatments often cost more than most of us can comfortably imagine. I asked my mother the cost of my father’s major surgeries—a triple heart bypass, followed by surgery to repair an aortic abdominal aneurysm. “Oh, a million dollars,” she told me. “At least.” She didn’t know an exact number because insurance paid for most of it and the staggering total was spread out over a series of bills delivered weeks and months after the fact, tallying the portions paid by insurance to each provider. Even if they’d had no insurance, he would have been able to have the surgeries—their necessity would have trumped any assessment of whether my parents could pay. I’m pretty sure that no one has ever asked him, Did you stay alive the natural way, or did you spend a million dollars?
IVF is an elective procedure with a poor success rate and an arguably unnecessary goal. But it is also true that infertility is an emotionally punishing experience as well as a disability, which qualifies workers for some protection under the Americans with Disabilities Act. It’s hard to imagine that the stress of infertility isn’t compounded by the question of how to pay for treatment, so much that, almost against our wills, it crowds out other thinking. Like my mother-in-law, we think in trade-offs: Will I put a down payment on a house or maybe have a baby? Will I max out these credit cards? Liquidate this retirement plan? Take out a second mortgage?
In his semi-autobiographical novel 10:04, Ben Lerner writes about a poet-turned-novelist with the surprising good fortune of a “strong six figure” deal for an unwritten new novel, who is also undergoing assisted reproduction with his best friend. At a celebratory dinner with his agent, Lerner’s narrator is bewildered by the large advance, an amount that feels both abstract and spoken for, thanks to his uncertain personal circumstances. “Imitative desire for my virtual novel was going to fund artificial insemination and its associated costs …,” he considers. “I would clear something like two hundred and seventy thousand dollars. Or Fifty-four IUIs. Or around four Hummer H2 SUVs. Or the two first editions on the market of Leaves of Grass.”
In my support group, though we didn’t talk about the specific price tags of our treatments, some of us would occasionally mention what we exchanged for the opportunity to try them: vacations we didn’t take, down payments on houses we didn’t buy. Some of us stayed in jobs we hated, just to keep our health insurance. Like Lerner’s narrator, we converted windfalls—those of us lucky enough to experience them—into treatments. Some of us thought of moving to places with better insurance laws, a prospect complicated by a bad economy and the various demands of our careers. We traveled out of state, to adoption conferences and clinical studies, researched the cost of “vacation IVF” in Mexico or Europe, and bought discounted, leftover meds online. We were always looking for a bargain, always thinking of the money, not because we were necessarily money-minded people but because we had no other choice.
Swept up in the excitement of their new jobs, Margaret and her husband didn’t realize the greatest benefit of their New York–to-Boston move until Margaret spoke to a friend who’d also gone through ART in New York. “His first response was, ‘Great! Do you know they cover IVF in Massachusetts?’” Margaret told me. She did some research and called her new insurance company, just to verify things, as soon as she received her policy. Unaffordable out-of-pocket expenses in New York became manageable copays in Boston. “It was an enormous relief to learn that we could do it, that insurance would cover much of the costs. It feels great to live in a state where not only infertility treatments are covered, but also one where everyone has access to basic health insurance and health care, period.”
Still, Margaret’s treatment wasn’t easy. Because she had waited so long—she was forty-two when she first saw her Boston RE and began IVF—her doctors believed that her recurrent miscarriages were related to her age and egg quality. They strongly recommended using donor eggs, and Margaret and her husband took their advice, which involved more out-of-pocket expenses, more waiting. When those cycles, too, ended in miscarriage, Margaret finally persuaded her doctors to investigate her thyroid and autoimmune issues. Her doctors researched expensive new supplemental medications to try, including an injection that would have cost $7,000 without insurance (it was covered); they planned a cycle, using previously frozen embryos, with these drugs.
“At our planning meeting, my doctor kept referring to the leftover embryos,” she said. “And I said, what about my embryos?”
Margaret and her husband had two frozen embryos left over from their very first IVF cycle in Boston, when she was forty-two, as well as several from a donor cycle. On paper, her cycles had always gone better than her twenty-two-year-old donor’s—she produced more eggs, and the resulting embryos were more numerous and of a higher quality. The doctor agreed to compare the donor-cycle and traditional IVF embryos and reported back that the ones from Margaret’s cycle were in fact more advanced—they had seven and nine cells, while the donor-egg embryos were all four celled. He was still skeptical.
“The doctor said, ‘It’s up to you,’” Margaret said. “To be honest I don’t think he thought it would work.” Margaret and her husband chose to transfer the embryos created with Margaret’s eggs; they went in to the clinic on a warm September morning, then to a friend’s book launch that night. During the two weeks of waiting they took walks on the beach, watched the sunset, ate lobster. “I felt cautiously optimistic about our chances on transfer day and during the waiting period because I felt like they had finally addressed the medical issues,” she told me. “It all went well that day, but I don’t remember so much of that day versus other ones because at this point, I have had so many transfers. I do remember feeling slightly less anxious about it all, maybe because I’d been through it so many times and because I felt, instinctually, that the protocol was finally right.” Her singleton pregnancy was confirmed later that month; a few weeks later she saw the baby on ultrasound. “He flipped!” she remembered. “It was one of the most exciting and happy things I’ve ever seen.”
To hear this news from Margaret was a great, unexpected lift. I’d stopped emailing her regularly after writing to her about my pregnancy, which happened when she was forty-three, just after her doctor persuaded her to move on to donor eggs. At the time she was diligently working on the attendant paperwork: screening candidates, dealing with attorneys’ fees and other headaches. Margaret seemed genuinely happy, even elated, for me, but every time I thought about checking in with her after that, I hesitated. Most women I know in infertility circles cheer each other on—it’s encouraging to see other people succeed, especially the tough or long-standing cases—but it can be hard to watch someone progress through pregnancy and childbirth while you wait: for treatments to work, for endometriosis to resolve or a cyst to be removed, for the financial or emotional means to try again. For a pregnant woman, nine months can seem endlessly long, but in infertility treatment, it goes by in a flash—Nine more months, you think: I should be pregnant by now. I thought I’d have a baby.
In my own support group, the custom after getting pregnant was to go to one last meeting to let people know—there would be exclamations, tears, sometimes hugs—and then never return. I knew a kind, funny woman who left our group in despair after two failed, expensive IVFs; I was able to keep up with her on Facebook, but after a while her posts disappeared. Another friend from the group told me the reason: she’d unfriended us, one by one, as we got pregnant. “I don’t blame her,” my other friend said. “I’d have done the same thing.”
Margaret was different, though: she emailed me every few months, even as her journey seemed all uphill, mine all downhill. She asked after my health when I was on bed rest and sent well wishes on my birthday (I am a terrible birthday rememberer). Possibly this is just the sort of person she is—a writer used to the long and lonely work of novel writing, a teacher used to looking after others, an artist accustomed to the many disappointments on the way to her big break. Maybe it was the care she was taking in her health, running and walking miles every day, or the benefits of acupuncture treatment and meditation. Maybe it’s genetic.
But I suspect that there was something more to Margaret’s equanimity and fortitude, something related to the structural protection in her state’s insurance laws. Virtually everyone in Massachusetts has health care—the coverage level today is at 99 percent, the highest in the nation. And, according to law, insurers must provide for artificial insemination; for IVF and intracytoplasmic sperm injection (ICSI); and for donor sperm, egg, or embryo procurement and processing. Medication coverage is handled just like medication for any other health problem. There is no limit to the number of treatment cycles and no cap on expenditures. Infertility patients in Margaret’s state don’t begin their treatment afraid it might bankrupt them or make other options—adoption or foster care, for example impossible; they begin committed to the long haul. Perhaps most significantly, they begin knowing that they will be treated, at least in the eyes of their insurance, like any other patient with any other medical condition.
Barbara Collura, who as the president and CEO of RESOLVE has spent more than ten years strategizing and advocating for better health insurance mandates, put it this way: “Patients make better health decisions when the issue of finances isn’t hanging over their heads.”
That was true for us, though the amount we spent to make those decisions would have been unaffordable for most, and though the financial anvil was only slightly off to the side maybe not over our heads, but over our shoulders or our feet, or some other important body part. IntegraMed and their investors made money from our bet, but I remain convinced that making it is one reason I gave birth at almost forty-one weeks to a healthy baby.
Still, I wonder what my support group might have been like if we all had health insurance we couldn’t lose and the ability to keep going when treatments failed. Would we have been more open? Less afraid, less anxious, less tearful? Would the group have gotten smaller more quickly, as people moved into the treatments with the best chances of success? Freed from financial worry, would I have gone at all?
Margaret, who did not attend a support group in all her eight years of infertility, wonders something else: “What if men were the ones having babies? Would we pay for treatment then?”
In a 2012 study of advertising by fertility clinics, law professor Jim Hawkins examined the websites of 372 clinics listed by the Society for Assisted Reproductive Technology (SART), a voluntary-membership organization that reports success rates for 90 percent of IVF clinics in the United States. Hawkins found that clinics emphasized the emotional rather than the practical side of fertility treatment: 79 percent of the clinics featured photographs of babies on their home pages, 30 percent used the word dream on the home page, and 8.87 percent used the word miracle. Although Hawkins notes that “price is usually one of the most important terms in a consumer transaction,” he found that only 27 percent of websites listed any kind of pricing for IVF. After suggesting a number of possible reasons—the aversion many doctors have to talking price with patients, the difficulty of predicting the cost of treatment, or an assumption that patients aren’t cost driven—Hawkins concludes that “it seems more likely that clinics are purposefully refusing to present price information to focus patients’ attention away from price.”
Hawkins doesn’t draw this distinction, but I wonder if clinics are also making assumptions based on a narrow target audience: women, specifically educated, older, white, upper-middle-class women. Though we know that infertility affects men as often as women (30 percent of infertility cases are attributable to male infertility, 30 percent to female, with 40 percent a combination or unexplained), women are more likely to research clinics and make the first appointment. Perhaps clinics imagine themselves marketing to women driven by fantasy and emotion, women swayed by soft-focus images of mothers and babies, uninterested in thinking of IVF as a highly uncertain consumer transaction. (To the contrary, I remember a professional, impeccably dressed fortyish woman in my support group who, faced with an unpromising-looking group of embryos, casually remarked that she was “playing with the B team.”)
The stereotypical image of an infertility patient is itself a fantasy. Infertility is not only as likely to be a male problem as it is a female one, but it is also more likely to affect minorities, the poor, and the less educated. Although SART has established guidelines for more accurate and transparent advertising, Hawkins found a low level of compliance among its membership. Clinics not only hid treatment costs and success rates, but they tended to focus their marketing more heavily on white patients. More than 97 percent of clinics included photographs of white babies on their websites, and 62 percent featured only photographs of white babies. Hawkins speculated that skewed advertising could attract white patients while driving away minorities. More disturbing, he noted that “it is possible that clinics are purposefully using the race of babies to draw in white patients, confirming the charge of some academics who argue that fertility treatments entrench racist norms.”
And the doctors themselves are vulnerable to misconceptions. A 2010 study of physician perceptions of infertility revealed that few understood the major risk factors—only 16 percent of the physicians surveyed correctly identified African Americans as the most at risk for infertility, and an even smaller percentage, 13 percent, recognized that women without high school diplomas are more likely to be infertile than women with higher educational attainment. Instead, the surveyed doctors’ perceptions tended to match stereotypes about fertility patients, familiar from movies, television, and IVF advertising. Even scientific studies of infertility tend to focus on this limited demographic group.
In the United States, infertility affects one in eight couples, but only half of those affected seek medical treatment; those who do tend to be white, older, wealthy, and educated. Demographics can expand when coverage is financially accessible to everyone—a 2013 Canadian study, conducted after Quebec mandated IVF insurance coverage, showed that removing financial barriers increased both socioeconomic and racial diversity. But in the United States, a variety of conflicting studies have indicated that cost is not the only barrier. Massachusetts’s insurance mandate, for example, allowed Margaret to conceive her son, but minorities and patients with lower incomes and educational attainment are still underrepresented within that state. One study of Massachusetts women treated with IVF post mandate showed that 85 percent of its subjects had at least a college degree, while none had less than a high school diploma.
Some barriers are more nuanced. Maybe you have Medicaid and your doctor doesn’t think you’ll be able to afford the treatment you need, so she doesn’t refer you to a specialist. Maybe you don’t feel comfortable talking to your doctor—what if you speak a different language than she does or you can’t read the medical literature she has available? Maybe you don’t see a physician for preventative care. If you do manage a referral, the RE clinic might seem inaccessible for other reasons—too far from where you live, with inconvenient hours and no mention of price on its website, only images of people who don’t look like you or the baby you imagine.
“Medicine serves as a gatekeeper,” writes sociologist Ann V. Bell in a study of inequality of access. By focusing research on women already accessing treatment and ignoring the diverse, day-to-day life experiences of women who live with infertility, the medical establishment reinforces racist and classist norms, Bell claims, and risks “determining who should and should not mother.”
Bell argues that the rise of ART and the subsequent medicalization of infertility has made childlessness more deviant and other avenues to motherhood less desirable. As part of her study, she interviewed twenty-seven Michigan-based women of low socioeconomic status who had been trying to conceive for more than a year. The women noted a number of barriers and approaches to IVF treatment that are familiar to me, even as my hurdles were more easily cleared. With no insurance coverage and little time off from work to attend midday appointments, they were always making plans and revising strategies—maybe they’d sell their cars, move out of state, or make peace with their conditions. But these strategies and decisions were devised very much on their own—many reported that they never felt a doctor wanted to help them become mothers. Some turned to folk medicine, rubbing pregnant stomachs for luck, or making wishes:
When I held [a friend’s] baby the first time … I thought—because I—I—I just loved her up and I thought, “I want one of these, I want one of these.” It was like wishing on a star or something, you know.
There are people working to break down these barriers at institutional and grassroots levels. RESOLVE provides training to volunteers who want to start free, peer-led support groups; there are now more than two hundred groups in forty-six states, plus the District of Columbia. Online communities of infertile and TTC women are not only numerous, but warm and inclusive. Other organizations, such as Fertility for Colored Girls or the Broken Brown Egg, host both online communities and in-person events designed to increase awareness about infertility in minority communities. They help provide a safe and supportive place to find out about treatment and other resources, or just to express sadness or frustration.
“I try to just say and address all of the things that I wished someone had said to me,” said Regina Townsend, a Chicago-area youth-services outreach librarian and writer who began the Broken Brown Egg as a way of addressing what she saw as a troubling silence surrounding the disease of infertility, particularly within the African American community. Her posts can be deeply personal, about her own experience with infertility, the adoption process, and foster care; humorous and chatty, about surviving the baby aisle at Target; or serious and informative, about health or reproductive activism. And, while her journey isn’t over yet—she and her husband began the IVF process in 2015—Regina has blogged and written about infertility consistently, on a number of platforms, for six years. “I often want to quit and I get quiet when I’m in that head space,” she told me, “but then I shake it off and move forward because I know that someone needs to hear my voice, or just have me say, ‘I get it, and I see you, and you’re not alone.’”
Creating that missing community is a common motivator for activists—but anger works too. Candace Trinchieri traveled from Los Angeles to D.C. for her first RESOLVE Advocacy Day, a chance to meet with members of Congress about bills affecting reproductive health and family building, in the middle of an IVF cycle—her ninth. “I was pissed off,” she remembered. “I wanted to vent at people. But anger is such an easy emotion to have.”
For Candace and her husband, their long reproductive journey was complicated by race. Candace is African American, her husband is Italian American, and when they were advised to consider donor eggs, Candace was surprised to find that their options were limited if they wanted the child to resemble both of them. Browsing websites listing hundreds of potential donors, Candace said there were plenty of white and Asian donors but only a handful of African Americans. At her own RESOLVE support group, she tried talking about this frustration, and her eventual determination that she’d settle for a “brown” or multiracial egg donor, but found that the other members, who were mostly white, didn’t want to hear her story.
“People of color are usually comfortable talking about race, because we live it every day. But if you’re not a person of color, talking about it can make you defensive,” she explained. “I felt all of this negativity coming back at me. They wanted to know, ‘Why do you care about the color?’”
Candace walked out of that meeting but didn’t leave RESOLVE for good. She returned for her first Advocacy Day, in 2013, hoping not only to argue for better laws and protections, but also to draw attention to the need to reach out to diverse communities, which she felt were underrepresented in support groups and RE clinics. “In the waiting room, every face you see is white. Looking at the literature, every face you see is white,” she said. “It’s extremely isolating.”
She went on to become RESOLVE’s vice chair of policy for Advocacy Day, drawing on her professional experience in event planning and nonprofit development. She began working to better prepare volunteers new to lobbying. Candace and her husband have raised more than $20,000 through RESOLVE’s Southern California Walk of Hope, expanding it from one city to three. With a friend, she is starting a new RESOLVE support group in Los Angeles, open to all but geared to people of color, who she says face an “extra stigma” when dealing with infertility and struggle to find safe or welcoming places to share their experience.
And she became a mother, adopting, with her husband, a baby boy who looks a lot like the genetic child they might have had. Her adoption story is as close to ideal as any infertile couple could imagine—the birth mother chose them at fourteen weeks and allowed Candace to accompany her for ultrasounds and for both Candace and her husband to be present at the birth. “I held her leg while she pushed,” Candace remembered. “I got to cut the umbilical cord.”
Candace’s personal fight made her a better advocate for reproductive equality. “I don’t want anyone else to have my struggle,” she said. So she travels, speaks publicly about her story, and researches laws affecting infertile couples and individuals. In 2014 and 2015 she worked especially on the Adoption Tax Credit Refundability Act, which would provide tax relief to all adoptive families, not just families with higher incomes, and on the Women Veterans and Other Health Care Improvements Act, which would extend IVF and other fertility coverage to severely wounded and female veterans. Candace wants people to understand that infertility is not a choice but a destructive, treatable disease affecting not just a few people but many, and from every background. “I go into every Advocacy Day asking people if they know what one in eight means,” she said, referring to the chance a couple has experienced infertility. “One in eight means that it’s someone you know, and maybe they’re not being treated. It should be a no-brainer that this disease is covered by insurance.”
In 2014, Facebook and Apple attracted a wave of criticism not for restricting insurance coverage but expanding it. Both companies announced that they would cover the cost of egg freezing and storage for their employees and covered spouses, allowing women “to do the best work of their lives,” according to a press release from Apple. Some claimed that the coverage was coercive, forcing women to choose between motherhood and careers. These critics worried that women might fear choosing their own “natural” time to have a child, at least until they reached a certain career threshold, and argued that both companies would better serve women and families by providing for work-life balance. Medical ethicists cautioned that egg freezing, once classified as experimental and recommended primarily for women about to undergo chemotherapy, is no guarantee that participating women will be able to have a child when they choose—success is dependent on the quality of the eggs at the time of cryopreservation and generally declines with age.
While it’s easy to see how corporations benefit if some of their best workers delay childbearing, and while work-life balance is a crucial goal, it feels presumptuous to worry about these women, who are among the most well informed, privileged, and powerful on the planet. But for about two weeks in October, after the news of coverage broke, the story was reported and commented on in every newspaper and magazine I read. DON’T BE FOOLED, ran the headlines. EGG FREEZING BETTER FOR COMPANIES, NOT WOMEN.
Like a number of women who have benefitted from ART, I found the media coverage troubling. First, it seemed to ignore that Plan B family creation is an increasingly common reality and suggested that medicalization degraded the conception experience. Writing for the New Yorker website, beneath a photograph of a storage tank filled with test tubes and liquid nitrogen, Rebecca Mead commented that “the inclusion of egg freezing as an employee benefit partakes of the techno-utopian fantasy on which companies like Facebook and Apple subsist—the conviction that there must be a solution to every problem, an answer to every question, a response to every need, if only the right algorithm can be found.” Other writers compared the company policies to the coercive dystopian atmosphere of Aldous Huxley’s Brave New World, in which women submit to egg-harvesting ovariectomies “for the good of Society, not to mention the fact that it carries a bonus amounting to six months’ salary.” Some articles reported that the two companies were paying women to freeze their eggs, rather than offering egg freezing as a covered medical benefit. Most mentioned the dollar amount, up to $20,000, reinforcing the discomfort many have associating money and reproduction.
Seven weeks after my daughter’s birth, I started a new job as a visiting writer at a university. That position was temporary, but it was followed by a yearlong visitorship at another university and, finally, an offer to stay. It’s in many ways a dream job, a chance to work with wonderful colleagues and bright graduate and undergraduate students and to focus far more time on my writing than I could as a K–12 teacher. The position comes with better benefits than I’ve had in years, including eight weeks of paid maternity leave and an assurance that having a child will provide more time on the tenure clock. That doesn’t mean that now, or even a year from now, is the right time to think about adding to my family. I pay quarterly to keep my frozen embryos on ice and sometimes have nightmares that I’ve missed a payment or that they were accidentally thawed. Maybe Richard and I won’t choose to have a second child, but I’m grateful that we don’t have to make that decision immediately, that I can focus on my career and family while we figure it out. If our frozen embryos are part of a techno-utopia, I believe it is an empowering one.
I’m lucky, and so are Facebook’s and Apple’s salaried, non-contract employees, who in addition to egg freezing receive fourteen to twenty-two weeks of paid maternity leave, plus coverage for IVF, adoption, and surrogacy costs. Less fortunate are the women who work almost everywhere else in America, like the women in Ann Bell’s study, who in addition to lacking financial or insurance resources have trouble even interesting physicians in their infertility. “Most doctors try to talk you out of getting pregnant,” one woman explained.
What is perhaps most problematic, and least surprising, about the interest generated by Apple’s and Facebook’s announcements is its reinforcement of stereotypes: rich, educated women are the ones most at risk for infertility or childlessness; poor women are hyper fertile, popping out kids in their teens and twenties. All are subject to second-guessing and commentary over what should be a private choice.
And an accessible one. When the Patient Protection and Affordable Care Act was upheld by the Supreme Court in 2012, I got my dad an extra-large black T-shirt that read, in white letters, “Health Reform Still a BFD.” The shirt referenced a moment in 2010 when Joe Biden was caught on live microphone, telling the president that the passage of the PPACA was “a big fucking deal.” That law was a big fucking deal for my family, and for the country, finally putting decent health care within reach for millions of uninsured and under insured people. For my parents, the PPACA meant that they wouldn’t lose coverage after my father’s heart surgeries or because they live in a county with no doctors. It meant that hospital bills wouldn’t force them into medical bankruptcy.
My mom often borrows the shirt—on her tiny frame, it’s a dress—and wears it to Democratic fund-raisers in King and Queen County and sometimes the local pharmacy, where prescriptions cost less than they used to. Sometimes she gets a hard time from Tea Party types grumbling about Obamacare, but, more and more, people are supportive. They’re getting used to the idea that health care is a right, not a privilege.
And if health care is a right we should expect, then so is the care of our reproductive health, which is not just absence of disease but the ability to make choices—when or if (and how) you’ll have a child or children. I’m with Margaret, with Barbara, with Regina, with Candace. With Mark and Rachel, and Gabe and Todd, and Nate and Parul and Willis.
Waiting is a part of life and can build appreciation and wonder into the life you finally achieve. But you shouldn’t have to wait forever.