The Case for Redefining Infertility
Mara Pellittieri, the thirty-year-old editor of TalkPoverty, a Web site devoted to class and inequality, lives with her spouse, who identifies as nonbinary, in the liberal suburb of Takoma Park, Maryland. Pellittieri’s spouse was assigned female at birth; the couple married in 2012, just before Maryland voters endorsed same-sex marriage in a ballot initiative, and decided to start a family around a year ago. Like most queer couples, they knew that they’d require medical assistance to get pregnant. They were glad, therefore, to learn that the health plan at Stanley Black & Decker, where Pellittieri’s spouse works as an engineer, offered intrauterine insemination (I.U.I.), in-vitro fertilization (I.V.F.), and other fertility care to employees who have been diagnosed as infertile. They assumed that such a diagnosis would apply to them.
Almost immediately, they hit a snag. According to their insurance policy, heterosexual couples could receive an infertility diagnosis after “one year of unprotected intercourse” without conception. Queer couples, by contrast, could be diagnosed only after six failed rounds of I.U.I., which they would have to pay for out of pocket. Each I.U.I., which has, at best, a twenty-per-cent chance of succeeding, can range in cost from five hundred to four thousand dollars. Pellittieri and her spouse were daunted by the expense. They were also alarmed by the difference between the way heterosexual and queer couples were treated. Sixteen U.S. states, including Maryland, now require insurance companies to cover some level of infertility care; in 2015, Maryland extended those requirements to mandate equal coverage for married same-sex couples—although the law also requires six unsuccessful attempts at intrauterine insemination to meet the definition of infertility. And Stanley Black & Decker, like many large companies, is self-insured—it doesn’t rely upon an outside insurance company—and so its policy fell outside the jurisdiction of Maryland’s regulations.
These divergent requirements for the same diagnosis put Pellittieri and her spouse at the center of a larger, conceptual debate about the meaning of the word “infertility.” Their insurance policy defined infertility physiologically: from its perspective, Pellittieri couldn’t receive an infertility diagnosis until doctors discovered something wrong with her reproductive system. She saw things differently. In her view, it was inarguably true that, as a member of a non-heterosexual couple, she couldn’t have children without medical help. Definitions drive diagnoses, and diagnoses determine access to care. By hewing to a physiological definition of infertility, Pellittieri’s insurance policy would leave her untreated.
In recent years, precisely to take account of people like Pellittieri, scholars, activists, and medical practitioners have begun urging policymakers to adopt a more expansive definition of infertility. They argue that infertility is only sometimes physiological; it’s also possible to suffer from social infertility, a condition that stems from the broader factors that shape our lives. In a 2018 paper, “Expanding the Clinical Definition of Infertility to Include Socially Infertile Individuals and Couples,” the bioethicist Lisa Campo-Engelstein and the physician Weei Lo propose that an infertility diagnosis should be available to anyone who, during a twelve-month period, possesses the “intent” to conceive but cannot “due to social or physiological limitations.” Meanwhile, the sociologists Jasmine Fledderjohann and Liberty Barnes have pointed out that statistics about infertility, which tend to be based on the reports of married heterosexual couples, ignore the “invisible infertile”—the single, poor, or non-heterosexual people who can’t have children for reasons that are only sometimes related to their bodies.
Broadening the definition of infertility, of course, would raise new questions in turn. Many people struggle to have children because of non-physiological factors. Should all of them—would-be parents who are single by choice, overworked women who decide to freeze their eggs, gay men in need of surrogates—be considered infertile? And what, for these different groups, would constitute a fair distribution of infertility treatment? Such debates are complex and morally urgent, affecting the lives of numberless would-be parents. On the phone with Cigna, which administers Stanley Black & Decker’s health plan, Pellittieri’s spouse tried to absorb the fact that the couple would be ineligible for coverage.
“With your plan, unfortunately, it would not be covered,” the representative explained, referring to I.U.I.
“So artificial insemination—period—is not covered,” Pellittieri’s spouse said, after some back and forth.
Pellittieri’s spouse asked specifically about I.V.F. and was told that the procedure couldn’t be covered without a diagnosis of infertility, which the representative, reading from the coverage policy, defined as “the inability of a woman to achieve conception after six trials of artificial insemination over a one-year period.”
“The person working at the insurance company felt really bad about it,” Pellittieri recalled. “They apologized for it.” But the policy, with its strictly physiological definition, was immovable.
On the surface, the effort to expand access to infertility treatment depends on the idea of equal rights. There are different kinds of rights, however, to which we might have equal access. Political philosophers have long distinguished between negative rights (“freedoms from”), which demand noninterference, and positive rights (“freedoms to”), which demand facilitation. In 1965, when the Supreme Court guaranteed marital couples the right to use contraception, in Griswold v. Connecticut, it relied on the principle of “marital privacy,” ruling, in effect, that married couples had the negative right to make their own decisions about contraceptive matters without government interference. In 1972, in Eisenstadt v. Baird, the Court extended that right to unmarried couples, deciding that they should have equal access to marital privacy. For most of its history, the fight for reproductive rights has conceived of them negatively. In 2012, when the Inter-American Court of Human Rights overturned Costa Rica’s ban on I.V.F., citing the “right to life” possessed by unimplanted embryos, it was careful to note that, in its opinion, the case was not about the “presumed right to have a child or a right to have access to I.V.F.” Instead, the ruling focussed on how the ban unduly interfered with couples’ private lives.
The shift to a positive understanding of reproductive rights has been driven, to a large extent, by technology, demography, and social change. In the years after Louise Brown, the world’s first I.V.F. baby, was born, in July, 1978, reproductive technologies were expensive and unreliable. But success rates for I.V.F., egg freezing, and related technologies improved, and the fertility industry grew into a multibillion-dollar behemoth. During the same period, new kinds of households and families entered the mainstream. In 1992, the protagonist of the television series “Murphy Brown” had a son out of wedlock; in the following years, I.U.I. and I.V.F. helped gay icons such as Elton John and Melissa Etheridge become parents. In general, Americans began staying in school longer, working harder, and marrying later, if at all. In 1960, only nine per cent of Americans over the age of twenty-five had never been married; by 2012, the figure was one in five. (More couples have been living together without tying the knot, of course.) Once exotic, “assisted reproductive technologies,” or A.R.T.s, now seem commonplace. It’s become commonsensical, therefore, to propose that, just as there is a positive right to education, there is a positive right to have children, and to ask whether all Americans are equally free to exercise that right.
Other countries—especially those with government-run health-care systems—have held spirited public debates about which infertility services to extend and to whom. In the early nineteen-eighties, Mary Warnock, a philosopher, chaired the United Kingdom’s Committee of Inquiry Into Human Fertilisation and Embryology; its findings shaped the U.K.’s first law regulating fertility treatment, the Human Fertilisation and Embryology Act, passed in 1990. (Warnock elaborated on the committee’s findings in a 2002 book, “Making Babies: Is There a Right to Have Children?”) In France, where Emmanuel Macron made access to “la procréation médicalement assistée” a campaign promise, citizens are currently debating the extension of state-funded I.V.F. to lesbian couples and single women. Different countries have developed different rules. At the moment, France provides four I.V.F. cycles to heterosexual couples but bans all forms of surrogacy. Belgium offers women under the age of forty-five six cycles of I.V.F. Pro-birth policies in Israel mean that a woman can access as many I.V.F. cycles as she needs to have two “take-home babies,” or live births.
Americans utilize assisted-reproduction technologies less often than citizens of other industrialized countries; except for an inconsistently administered program for service members whose infertility is deemed service-related, the nation’s public health-insurance programs, which cover roughly half the population, do not substantively fund any A.R.T.s. Private insurance policies vary widely. More and more people now find themselves in need of A.R.T.s., but, in a country where abortion and paid family leave are still contentious issues, the hard work of consensus-building has barely begun.
In 2015, Barbara Collura, the president and C.E.O. of the U.S. infertility-advocacy group RESOLVE, travelled to Geneva to take part in a series of discussions, led by the International Committee Monitoring Assisted Reproductive Technologies, over the definition of infertility. In 2009, the World Health Organization (W.H.O.) defined infertility as “a disease of the reproductive system”; its definition held that infertility could be diagnosed after a year or more of “regular unprotected sexual intercourse” had failed to produce a pregnancy. But, by 2015, there was broad agreement that this language, with its reliance on heterosexual sex as a reference point, excluded many of the people who currently seek fertility treatment, including queer and single patients. The delegates—most of whom represented professional medical bodies, such as the American Society for Reproductive Medicine, the African Fertility Society, and the International Federation of Gynecology and Obstetrics—hoped to redefine infertility in a new, more inclusive way.
“There were several hours of discussion, of wordsmithing,” Collura said. Eventually, they settled on an expansion of the 2009 W.H.O. definition. The new language explained that infertility could also be diagnosed based on “an impairment of a person’s capacity to reproduce either as an individual or with his/her partner.” It also noted that infertility generates “disability as an impairment of function.” When the new definition was published, in 2017, in the journal Fertility and Sterility, criticism arose immediately, not just from the right—Josephine Quintavalle, the director of the conservative Social Trends Institute, had already called it “absurd nonsense”—but from the left. “The terminology is kind of offensive in terms of using the term ‘impairment,’ ” Cathy Sakimura, the deputy director of the National Center for Lesbian Rights, told me. In her view, the revised definition, even as it encompasses queer couples and individuals, comes perilously close to characterizing being single or queer as a form of disability. “There are other ways to get at that, to use a more neutral word,” she said. Lisa Campo-Engelstein, the bioethicist whose 2018 paper had proposed seeing infertility as the result of “social or physiological limitations,” warned that categorizing social infertility as a disease risked pathologizing and medicalizing homosexuality. “Medicalization is a double-edged sword,” she said. “On the one hand, it gives you access, if you have a medical condition, to treatment. But, on the other hand, it may label something that you don’t think, really, is a disease as a disease.”
In theory, a social definition of infertility—one laid out in terms of intentions and identities rather than diseases and disabilities—circumvents these problems. But it creates complexities of its own. Last year, researchers from Yale and the University of Haifa, in Israel, shared the results of a study in which they asked a hundred and fifty women who have frozen their eggs to explain their motivations. The overwhelming majority of the women cited what might be called “man problems,” including divorces, breakups, and male partners who weren’t yet ready to have children. It takes a conceptual leap to see a recent divorcée and a woman with endometriosis as equally infertile, but Campo-Engelstein argues that they are “similar enough that they should be treated the same.” In general, she points out, we treat medical conditions without worrying about their origins. “If you never go on any dates, you might never find the person of your dreams, but if you’re having lots of unprotected sex, you’re more likely to get a sexually transmitted infection—which, if left untreated, could also cause infertility.” In her view, women who can’t have children are united in their condition.
“If we accept the notion that reproduction is a human right, then I think it would be inconsistent if we were to exclude gay men,” Eli Adashi, a former dean of medicine and biological sciences at Brown University, and the author of numerous papers on access to A.R.T.s, told me. “Gay men are people, too.” A positive right to the treatment of social infertility, in theory, could require governments or insurance companies to facilitate surrogacy for gay men who wish to have children. And yet some evidence suggests that surrogacy and egg donation are offered mainly by women in need. In countries where commercial surrogacy is banned, altruistic surrogates are few and far between. Spain, where payment rates for eggs have crept slightly above the European Union average and donation is anonymous, has become a hub for egg donation, attracting a significant number of women from poor countries in Eastern Europe. In her book “Contested Commodities,” from 1996, the legal scholar Margaret Jane Radin argues that, even when people enter into consensual commercial-surrogacy contracts, the arrangement comes uncomfortably close to “commissioned adoption,” or babies for sale. There are, in short, reasons to be cautious about the idea of a government-mandated surrogacy market. They must be weighed against the principle of equality and the desperate desire of many gay couples to have children.
Faren Tang, a Reproductive Justice Fellow at Yale Law School, points out that physiological and social infertility can coexist within a partnership. “In most cases, at least one member of a ‘medically infertile’ heterosexual couple is really socially infertile: they could achieve pregnancy if they abandoned their current partner and found another,” she writes, in a forthcoming paper. She also grapples with the question of whether single men, gay or straight, should be considered socially infertile, too—part of a larger, more complicated discussion about whether coverage could or should be limited to medical procedures involving one’s own body, since single men would require donor eggs and surrogates. Tang argues that, once a government chooses to subsidize care for one group (married couples, say), it must provide it to everyone. “If the state is going to choose to confer a benefit, can it choose to confer that benefit to a group of people on a basis that’s fundamentally irrational and discriminatory?” she asked. “My view is, no, it can’t.”
Costs are frequently another limiting factor. In the U.S., where A.R.T.s are more expensive than elsewhere, a single round of I.V.F. can cost as much as twenty thousand dollars; the surrogacy process—which, in addition to the surrogate herself, requires donor eggs, fertility doctors, and legal counsel—can easily top a hundred thousand. This past February, lawmakers in the North Dakota Senate cited cost concerns when they voted down an infertility mandate. But, from a generational perspective, concerns about cost are ultimately misguided. A 2008 article published in the American Journal of Managed Care by a group of economists and physicians,“Long-Term Economic Benefits Attributed to I.V.F.-Conceived Children: A Lifetime Tax Calculation,” found that, based on their likely tax contributions in the course of a working life, A.R.T. babies generate “a net positive return to the government.” On a long enough time horizon, infertility treatment is an investment in the tax base of the future.
If there is no consensus about how to cover A.R.T.s, it is perhaps because there is no consensus about whether people have a fundamental right to have a child. Article Sixteen of the Universal Declaration of Human Rights says that “men and women of full age, without any limitation due to race, nationality or religion, have the right to marry and to found a family,” but it’s unclear whether that right is a positive or negative one. In the meantime, the updated definition of infertility first drafted in Geneva hasn’t made its way into any American laws, current or forthcoming. In a 2011 review of thirteen state mandates, Valarie Blake, an associate law professor at West Virginia University, found that most excluded the socially infertile: one required marriage; three, the discovery of a medical or “unexplained” cause of infertility; four, a determination that infertility treatment was “medically necessary.” Blake hesitates to call lawmakers intentionally discriminatory. Still, it’s clear that many of these laws create conditions of unequal access based on marital status or sexual orientation. “It’s either intent to promote heterosexual families or at least a benign neglect of alternative families,” she said. She would prefer that “fertility” remain undefined. “Don’t go into the details of what fertility means,” she said. “Then it’s up to a physician to dictate the proper course of care for any given patient.”
In the absence of a broader consensus about what “infertility” means—or of the treatments that would be covered under a socialized medical system—American employers have begun defining it for themselves. In the past year, the data aggregator FertilityIQ surveyed thirty thousand infertility patients. It found that, out of four hundred employers that offer I.V.F. coverage, thirty-one per cent had decided to cover I.V.F. without pre-authorization—that is, without waiting for an official diagnosis. (That’s an increase from eight per cent, of a smaller sample, in 2016.) Benefits managers at some companies may have decided that “it’s just not fair to help build some employees’ families and not others,” Jake Anderson, FertilityIQ’s co-founder, said.
The difference of opinion that exists between companies may also exist within the health-care system. Despite being explicitly told that they weren’t eligible for coverage under Stanley Black & Decker’s policy, Pellittieri and her spouse decided to try submitting the bills for their I.U.I. attempts, figuring that a formal denial would position them to appeal and fight the policy. To their surprise, their insurer started reimbursing them for the procedures. It turned out that, despite how the policy defined infertility, their claims had been coded with an infertility diagnosis. A spokesperson for Cigna said that the company “respects the patient-provider relationship and relies on its members’ health care providers to make diagnoses determinations based on Cigna’s coverage policies.”) Pellittieri and her spouse welcomed the reimbursements. At the same time, they had been reimbursed for procedures that they might easily have skipped, since their doctor’s preferred approach would have been to begin I.V.F. after only two I.U.I.s.
Because of the complexities and confusion of this process, the couple underwent nearly a year of less-effective, costly, and emotionally draining procedures. Pellitieri wanted desperately to move on to I.V.F., but she instead embarked on round after round of I.U.I. “I felt trapped by the policy,” she said. Earlier this year, after their fifth I.U.I., she became pregnant. Their joy and relief, though, was tempered by the knowledge that they plan to have a second child. To do that, she said, “We’ll have to go through this all over again.”