“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 16 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.
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 45. We met in 2011, at a summer conference for writers, talked books and stories, gossiped, drank wine, went swimming; but the greatest sorrow of both of our lives — that we could not have children without expensive medical treatment — never once came up, not until a year later, when I began publishing essays about my experience with infertility and assisted reproduction. At the time that I met Margaret, 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.
Had Margaret and I talked about infertility’s challenges, we would have found a lot of common ground. My husband and I had been trying to conceive for three years at that point; we were patients at a reproductive endocrinology clinic in North Carolina, where we lived, but like Margaret and her husband had limited insurance coverage and burdensome student loans, and we thought we’d never be able to afford IVF. Instead we’d tried less-expensive options, like Femara (a pill used to induce ovulation) and intrauterine insemination (also known as IUI) — month after month of Femara, and several rounds of IUI treatment. Our doctor considered IVF a better, and certainly faster, course of treatment given our diagnosis and history, but we balked at the price — around $11,000 for a single cycle, not including medication — especially as we knew it was possible we’d need multiple rounds of treatment.
I was lucky: Richard and I eventually saved enough to pay for what’s known as a shared-risk package, and conceived our daughter through IVF. Infertility affects millions of Americans — one in eight couples, according to Resolve: the National Infertility Association, or about 10 percent of the population. 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 another study of Massachusetts women treated with IVF after the state’s health-care laws mandated infertility coverage showed that 85 percent of its subjects had at least a college degree, while none had less than a high school diploma.
Even more difficult to talk about than the emotional pain of waiting, I’ve found, is the financial cost. No one wants to put a price on the ability to conceive, or think about how relative wealth or the details in our insurance plans can be the difference between having a child or not.
Margaret was 37 when she began trying to get pregnant, 38 when she first saw a reproductive endocrinologist. Like me, she 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, which like the rest of Massachusetts has state-financed universal health insurance — that more aggressive treatment became an option. By then she was 42.
Even when Margaret and her husband were in New York, they were better off than most: The state is 1 of 15 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 address 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 14 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 40 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.
Massachusetts is by far the best state in which Margaret could have landed. 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. Our state, North Carolina, by contrast, was not among those with even vague requirements for coverage.
It’s easy to see, even in many 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 partnerships; 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,” 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 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. Getting pregnant 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 a 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 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 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 and you’ll eventually have success.
Richard and I had saved for two years to afford IVF. We began the routine tests and screening in the winter of 2012, just before our university-based clinic moved to a new suburban location in Raleigh. Aside from nicer waiting and examination rooms, the biggest difference I noticed when we made the switch 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.
We had already paid IntegraMed $20,200 before our first visit. In exchange, we received a contract eight pages long, detailing a strange financial arrangement known 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, which can vary greatly in price, but often cost around $3000 to $5000 per cycle. The most expensive IVF line items — the egg retrieval and fertilization, the embryo culturing, the transfer — would be paid 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, we’d hedged our bets with what was essentially a financial derivative, such as a credit default swap. 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, per-cycle payment arrangement, we could 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 (36 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, providing a refund of 70 percent of our money 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, if I had a bad reaction to medication, if I ignored medical advice, or if I passed my 38th birthday.
Looking back, it’s easy to see that the deal was always skewed in their favor. 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 my superstitions were just that; I would have been just as likely to get pregnant had I paid less.
I do believe that my pregnancy was safer because of the cost-share program, however, because it diminished our incentive to push for implanting multiple embryos at once, a common way that patients increase the likelihood of a successful pregnancy, but one that comes with higher risks for both the mother and child.
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 embryos 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 Dr. Steven Young, our reproductive endocrinologist, 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 these risks, 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 gave us the confidence to choose a single-embryo transfer (SET). 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 perhaps misunderstanding some of the financial motivation behind their patients’ choices. In a blog post for his clinic, Reproductive Medicine Associates of New Jersey, Dr. Thomas Molinaro blames our success-driven culture: “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 56 percent SET rate for women in my age group — twice as high as the national average. 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.
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 50-50 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.
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 will, it crowds out other thinking. We tend to think in tradeoffs: 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. He 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.
When I finally got pregnant, Margaret was in the process of considering a donor egg. She 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.
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. 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. 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, which helped her continue treatment until she finally conceived her son. Infertility patients in Massachusetts 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 significant, they begin knowing that they will be treated, at least in the eyes of their insurance carrier, like any other patient with any other medical condition.
This story is adapted from The Art of Waiting, which will be published September 6 by Graywolf Press.