Rachel Vorkink and her wife recently acquired a puppy. They’d planned to have a baby first, but plans change, and now they have sleek, brindle-coated Sasha—who, while we sit in their living room on a recent Thursday evening, watches Vorkink in taut but obedient silence from inside her kennel, occasionally nipping at the bars in protest, as two cats wander free around the house. Vorkink jokes that her home is a zoo. If so, it’s a very tidy one: a beautifully maintained house in Billerica, a suburb of Boston, where the backs of couches bear woolen blankets, and the tops of tables are crowded with family photos.
Vorkink, a school psychologist who works with disabled kids, and her wife, Martina Snajder, who’s studying to become a licensed mental-health counselor and who works with drug addicts, moved into this house last year. It represents a life they weren’t sure they would ever have together. They met 13 years ago, when Vorkink’s father spent some time in Croatia on business. Vorkink was 23 when she went to visit her parents in Zagreb and met Snajder, then 21; she moved to Croatia a year later, and they relocated to the United States as a couple in 2004.
This is the point at which Vorkink and Snajder’s story diverges from the fairy-tale heterosexual version. Had they been straight, they could have gotten married to secure Snajder legal status. But, until the Supreme Court struck down the Defense of Marriage Act in 2013, same-sex marriages that were recognized at the state level had no bearing on federal immigration law. In fact, even though Vorkink and Snajder lived in a state where they could get married—Massachusetts—lawyers advised them not to: If Snajder showed intent to stay in the United States, the country could revoke her student visa. She also couldn’t legally work. The couple spent the better part of a decade in a financial and emotional holding pattern. Someday, they knew, they wanted to save money, buy property, get married, have children. But for years, the only thing they seemed to be able to do without jeopardizing that future was wait.
“We thought of moving to Canada, we thought of moving to Europe,” Vorkink says. “We didn’t buy a house until we knew that DOMA was struck down.” They did, however, have a wedding, minus the paperwork, in 2009, and get legally married, despite the risk, in 2011, urged on by predictions of DOMA’s demise—and the desire to start having children. Vorkink, in particular, had felt her whole life that pregnancy and motherhood would be defining experiences for her. “You get to a point where you’re waiting around for laws to change that are really unfair, and somebody else is making decisions for you about your life, and you stop caring,” she says. “I have to live my life.”
VORKINK AND Snajder were prepared for the fact that, as lesbians, they’d be facing steep out-of-pocket costs: Donor sperm usually costs around $800 per sample, and the simplest version of intrauterine insemination also runs several hundred dollars per visit. (Though the likelihood of getting pregnant from a single cycle of IUI depends on a range of individual factors, it’s often estimated at around 20 percent for women under 35, meaning that this method can ultimately cost thousands of dollars.) But after months of attempts, Vorkink started to suspect something she hadn’t planned for: that she was having problems with infertility. “Barriers to family-making,” she says. “That’s what I feel like my adult life has been.” When she got the diagnosis, she says, one of her first thoughts was, “We already fought for 10 years.”
For people who need to avail themselves of assisted reproductive technology—be they single women, lesbians, families struggling with medical infertility, or, like Vorkink and Snajder, some combination—the U.S. health care system can be extremely difficult. For one thing, reproductive assistance costs more here than anywhere else in the world: A cycle of in vitro fertilization—the most common option for women who can’t conceive through heterosexual sex or a simple insemination—usually costs between $12,000 and $20,000 in the United States versus more like $4,000 in much of Europe. This is in line with the fact that health care in America costs more in general than in other wealthy nations. But whereas insurance or national health care systems in many European countries, along with Israel, will cover at least one round of IVF, coverage in the United States is a patchwork. Only 15 states have mandates on the books requiring any infertility coverage, and only eight require any coverage of IVF. Many of these statutes only apply to heterosexual, married couples; even with a medical diagnosis, single women and lesbians are often excluded. Of course, companies have the option of covering IVF with or without a mandate; however, in the estimation of Eli Adashi, a professor of medical science at Brown, only about a third of the nation’s private employers do. It’s also the case that, even in mandate states, self-insured employers—and, in many cases, religious employers—aren’t forced to comply.
This situation leads to predictable results. “It’s the higher-income, primarily white, urban people that are figuring this out and availing themselves of the services because they can afford it,” says Barbara Collura, president and CEO of RESOLVE, a national advocacy organization for people with infertility. “People that are middle-income, different ethnicities, not in the urban setting, are shut out of care.”
The issue of access to reproductive help is closely linked to many of the biggest conversations about civil rights that have consumed America in the last decade. It follows naturally from the arguments about a right to health care that accompanied the passage of the Affordable Care Act in 2010 and from the advent of nationwide same-sex marriage earlier this year. Most of all, though, it has a clear link to our country’s ongoing debate about reproductive choice—except that this issue reverses the terms of that debate by focusing on the right to reproduce, rather than the right not to reproduce. “If you look at the people talking about ‘reproductive justice,’ infertility is almost never part of the conversation,” says Collura. “Whenever we see groups that say, ‘We do reproductive health,’ … when you look at it, it’s a code word for family planning or abortion. To me, infertility and the need and desire to build a family absolutely falls under reproductive health.” The question, in short, is whether reproducing is a privilege or a right. We’ve yet to have a real national conversation about this issue, but it’s one that the country is, in many ways, overdue to face.
Vorkink and Snajder—who I met through RESOLVE—are fortunate: They live in Massachusetts, which has the most comprehensive mandate in the country—and which is one of only five states (the others are Connecticut, Illinois, New Jersey, and Maryland) where IVF coverage, if available, isn’t limited to heterosexual, married couples. (In states that only require heterosexual, married couples to be covered for IVF, the mandates contain language—such as “The patient and her spouse must have at least a two-year history” of infertility or “The patient’s eggs must be fertilized with her spouse’s sperm”—that effectively excludes single women and lesbians.)
And so it’s striking that, even in the strongest corner of the country’s safety net, for people struggling to have a family, accessing those benefits has been far from straightforward. For a heterosexual couple in Massachusetts, coverage kicks in if you simply attest that you’ve been trying unsuccessfully to conceive for a year or more; at that point, both IUI and IVF will be covered. But lesbian couples have to pay for a year of IUI out-of-pocket before they can qualify as infertile and gain access to the same benefits. Thus, Vorkink had to pay about $1,000 monthly (including the sperm) to be inseminated in a doctor’s office once a month for a year—and her coverage, when it eventually came, didn’t include retroactive reimbursement. Because of this extra financial barrier for LGBT people, says Liz Coolidge, who coordinates the insemination program at the Boston LGBT clinic Fenway Health, “most of the women I see have some kind of professional degree.”
Late in that first year, Vorkink started to suspect something was wrong. Once her coverage kicked in, her insurance paid for a test that confirmed her fears—but it also came with the good news that, thanks to her geographic luck, her insurance company would cover six “fresh” cycles of IVF (in which doctors stimulate the ovaries and fertilize the embryos) plus any additional “frozen” cycles (in which doctors transfer frozen embryos that weren’t originally used). She hoped that the worst was behind her.
Most of the laws that require insurance to cover infertility passed state legislatures in the late 1980s and early 1990s, though the last one to pass, Connecticut’s, came as recently as 2005. The political climate has changed since then. “You had the economic downturn, and then the beginnings of the Affordable Care Act, and a lot of uncertainty around that,” says Collura. “Even in states that seemed ‘mandate friendly,’ they were gun-shy about adding new mandates for anything.” For example, a measure passed the California legislature in 2013, but Democratic Governor Jerry Brown vetoed it, saying he wanted to see how the ACA enactment went first. Many fertility advocates had hoped that the ACA would enshrine assisted reproductive technology as one of its “essential benefits” (or would otherwise mandate its coverage, as the administration did with birth control), says Cathy Sakimura, deputy director and family law director at the National Center for Lesbian Rights. But the ACA didn’t mention the issue, leaving it de facto in the hands of the states.
The rise of the tea party, and the growing polarization around reproductive rights—for example, the idea that a fertilized embryo has personhood—hasn’t helped the cause, either. (IVF can lead to the discarding of unused embryos.) “We see lots of anti-choice state legislators who don’t like nontraditional reproduction, and sometimes they do things to go after it,” says Sean Tipton, head of advocacy and policy at the American Society for Reproductive Medicine, which represents doctors. As for expanding coverage in the United States: “We’d like to be more proactive, but unfortunately, we spend a lot of time protecting the legality” of what’s already available.
There is at least one person, however, who’s trying to figure out what infertility coverage should ideally look like. Susan Crockin helped write and lobby for the Massachusetts mandate, which was among the first in the country, in 1987. She’s a lawyer who teaches at Georgetown University’s O’Neill Institute for National and Global Health Law, and she has devoted most of her career to the subject of reproductive law. “My very practical hope over the next couple of years, and where I’m trying to put my energy, is into trying to get together an interdisciplinary argument,” she says. This means “bringing together the legal challenges, the economic persuasiveness, and the ethical issues”—in other words, amassing a case that treating fertility coverage as a civil right is not only the ethical thing to do, but, from the perspective of our country’s health system, the economically sound thing, too.
The economic piece of that argument rests on the idea that covering IVF could actually save money. In recent years, doctors have increasingly been encouraging women who undergo IVF to have just one fertilized embryo transferred into the uterus—but, since the vast majority have scraped and sacrificed to pay for the procedure without help from insurance, many opt to transfer multiple embryos, to raise the odds that at least one will survive. The problem with this approach is exemplified by Nadya Suleman, the California woman who became known as “Octomom” when she gave birth to octuplets in 2009 via IVF. Multiple births—including biologically natural twins and triplets—tend to create risks for both mother and infant, as well as extra costs. All of this taxes our medical system.
A trio of researchers, including Adashi, the Brown professor, wanted to know just how much money the United States would save if women only had single-embryo transfers. “One of the thoughts was that if it becomes apparent that IVF is not as expensive as it’s made out to be, and if you can actually save money in the process,” maybe that would bolster the case for coverage, says Adashi. “We had a hunch that the savings would be substantial”—but even they were surprised when they crunched the numbers and found that eliminating multiple births from IVF would save the United States roughly $6.3 billion a year. “It means we could cover IVF with the cost savings and have healthier babies,” Crockin points out. In fact, covering IVF might be the only way to make those savings a reality: Families whose insurance is paying for the procedure have proved more amenable to single-embryo transfers. To go a step further, new laws could make single transfers a requisite of coverage—a popular measure in European countries that pay for IVF, such as Belgium and Sweden.
Whether these savings would actually materialize in the real world is another matter entirely, however. In Quebec—which until recently paid for IVF—proponents were also optimistic that their program would pay for itself by reducing twins, triplets, and other “multiples.” Except in cases of severe infertility, Quebec doctors were only permitted to implant one embryo. But though the proportion of multiples did go down, from 30 percent of IVF births to around 8 percent, the cost did not. That’s because, says Neal Mahutte, medical director of the Montreal Fertility Center, the total number of babies born via IVF went up so much that the number of twins stayed about the same, and so did the extra expenses that twins tend to entail.
Mahutte led a team of researchers in an effort to figure out what could be done about the program’s $70 million a year price tag. They found that the province was spending an average of $17,919 per baby born to a woman under 35, but that the cost climbed dramatically from there: For 40-year-old women, the average was $43,153, and for 43-year-old women, it was $104,000. For older women in particular, he says, “We saw a situation where the probability of success of the cycle was rarely a factor in decision-making about whether to start the treatment. People would say, ‘I have everything to gain and almost nothing to lose.’ It’s like if somebody offers you a lottery ticket for free.” Perhaps, he suggested, physicians should have to determine that a cycle has at least a certain chance of success (he threw out 5 percent as a possibility) before the public should be required to pay for it.
Alternatively, Mahutte and his team calculated that Quebec could save half the money it was spending on the program—while only reducing the number of births from IVF by 10 percent—by instituting a few limits: an age cap of 41; a ceiling of two cycles per woman; a stricter definition of what constituted “one cycle” of IVF; the exclusion of patients who had previously had an elective tubal ligation or vasectomy. The team presented this proposal to the government in the hopes of saving the program. But it was cut anyway last month, replaced with a modest tax credit.
For Mahutte, the struggles with cost in Quebec don’t undermine the idea that free IVF is potentially economical; further restrictions could have trimmed the cost of the program even more while maintaining it for the majority of women. Adashi, too, argues that even if the Quebec program may have been “too generous,” the fundamental logic that reducing multiples saves money while producing better health outcomes is solid. “If one were to design such a plan, one would have to look at the Quebec program and make sure we’re not repeating mistakes they might have made,” he says. He is confident that investing in IVF to reduce multiples “is not only the right thing to do but the smart thing.”
STILL, THE POSSIBILITY remains that expanded IVF coverage would result in net expenses rather than net savings—in which case it would represent a trade-off, perhaps one that would be difficult to justify. Jeffrey Kahn, a professor of bioethics and public policy at Johns Hopkins University, says that in an ideal world, he’d like to see better access to fertility care. But, he asks, “How do you value the outcome of having a biologically related child against the outcome of someone who got a kidney transplant?” Plus, the ethical question of whether having children is a right or a privilege is further complicated by the fact that, although adoption, too, is expensive and complex, it is possible to build a family outside the confines of biology.
In the countries that do cover infertility (many of which do not require recipients to be straight or married), there’s often a pro-natalist incentive at work, says Geneva-based health care economist Mark Connolly. For Israel, which has the world’s most generous IVF coverage—two babies for any woman, regardless of how many cycles it takes to get there—a growing population protects against a constant existential threat, while “places like South Korea and Estonia are starting to fund [IVF] because they have a declining population,” Connolly says. In Europe more generally, Connolly posits a link between countries where there’s extensive access to reproductive assistance and national cultures that are more generally pro-family, with good national day care, parental leave, and so on. In France, for example, he says, IVF is looked at as “part of that package.” “America doesn’t have a lot of family-friendly policies,” he points out. “We don’t do much maternity leave. We’re not Sweden. Are we a family-friendly country?”
Crockin, for one, hopes we can be more so. She sees a strong ethical and legal case for covering reproductive assistance, and she thinks that the Supreme Court’s recent decision on marriage equality has bolstered that case—not just for same-sex couples, but for everybody. “The basis of [Obergefell v. Hodges] is that we should not deprive anyone of the right to be and have a family,” she says. Under her logic, this has created a legal precedent that can be applied to all aspects of family-making, including reproduction. Says Crockin, “I think you can take some of those statements and say, ‘But we now have people who have a right that they can’t exercise except in a way that is incredibly burdensome and expensive—and, for some, prohibitively expensive.’ ”
In Crockin’s view, taking this rights-based argument to its logical conclusion would mean covering reproductive assistance for anyone who needed it in the childbearing years (conventionally capped in the early 40s for women). That would include coverage of IUI for people who are not medically but “socially infertile”: same-sex couples and single people. “We are a society that has moved quickly to embrace and recognize same-sex marriage, and it seems to me fundamentally at odds with that to say, ‘OK, pay out of pocket if you want to have a child,’ when everyone else doesn’t have to,” she says.
Even Crockin’s expansive vision of the right to reproduce does contain practical limits, though. She acknowledges, for instance, that it’s tough to imagine U.S. insurance paying for the purchase of sperm samples or donor eggs, or for a surrogate to carry a pregnancy, which is not only expensive, but also harder to classify as “medical” care. (This means, among other things, that it would remain cheaper for lesbians and single women to reproduce than gay men.) But Crockin can imagine a world where IUI and IVF are covered for anyone: To put it crudely, if someone brings all the pieces to the table—egg, sperm, uterus—yet still needs help, then the medical mojo that puts it all together would be available.
Crockin thinks her argument could gain a moral momentum that the narrower push for medical infertility coverage in the 1980s and 1990s never achieved. “It’s fundamentally more ethical, and I don’t think it’s significantly more expensive,” she says. Under the current system, when people who can’t have children without medical help buy insurance, they pay into a pool that covers contraceptive care, maternity care, and pediatric care. Why, she asks, shouldn’t they get the care they need covered in return?
If Crockin can construct the perfect argument, the question remains: Where to bring it? She advocates going straight to the insurance companies and to large employers, showing them the economic argument (carrot) and the legal argument (stick) to encourage them to avoid ending up on the wrong side of a case. There have been a few small signs that getting the insurance companies onboard is the best way to get this issue back on legislators’ agendas. In California, the measure that passed the legislature in 2013 (though it was later vetoed by the governor) wasn’t opposed by the insurance sector. It would have mandated insurance coverage of fertility preservation, such as sperm and egg freezing, for people who had been diagnosed with cancer and were about to lose their fertility to treatment. The companies saw anecdotal evidence that cancer patients were delaying chemotherapy until they could figure out some means of preserving their fertility, leading to worse outcomes and higher costs in the long run.
In Maryland, insurance companies backed an entirely different expansion of IVF coverage: This year, in the wake of marriage equality, a number of lesbian couples filed lawsuits arguing that the state’s mandate, which only applied to straight couples, was discriminatory. “The insurance industry, the governor’s office, and others were nervous about pending litigation, and that helped allow for bipartisan support,” says state Senator Cheryl Kagan, the bill’s primary sponsor. The measure became law last spring, and the National Conference of State Legislatures will be suggesting it as a model for other states whose mandates put them in the same legal bind. (When I reached out to the organization that represents insurers, America’s Health Insurance Plans, for a stance on whether plans should expand their fertility coverage, a spokesperson wrote back that “it’s possible in the future, state mandates could add that type of coverage to essential health benefits packages” but added that “AHIP doesn’t issue recommendations or take positions on coverage decisions.”)
There are ways to make fertility care more available—at least to some extent—without wading into the bureaucratic labyrinth of insurance. For example, says Charis Thompson, chair of gender and women’s studies at the University of California, Berkeley, some clinics are trying to open their doors to a broader range of customers (a business proposal that is, of course, financially as well as morally appealing) by “offering low-cost loans, or sheltering their patients from having their credit scores too impacted by those loans.” Others, Thompson notes, are pioneering a technique that’s often called “mini-IVF” or “micro-IVF,” in which younger patients or those with a good prognosis can opt to buy “lower doses of fertility drugs, less monitoring and lab manipulation” in the hopes that the barer basics will still produce a baby.
But the fact remains that “there aren’t really any policy think tanks doing fertility in the U.S.,” according to Connolly. Indeed, the heavy hitters in both the reproductive-rights and the LGBT-advocacy worlds appear not to be prioritizing the issue: Both Gay & Lesbian Advocates & Defenders and NARAL Pro-Choice America referred me to other experts in the field when I contacted them; the Human Rights Campaign, the country’s most prominent LGBT group, never got back to me. The debate around this issue “seems to move forward a little bit and then stop,” says Connolly. He himself has largely moved onto other topics after focusing for years on this one. “There’s no money in it for me to do research,” he told me.
RACHEL VORKINK DIDN’T get pregnant from her first round of IVF. But her fertility clinic had frozen one of the fertilized embryos, and when they did a “frozen transfer,” it worked. Nine weeks later, she miscarried. “The not getting pregnant for so long was really difficult, but it’s cruel and unusual punishment to get pregnant, finally,” she says. “We went to the ultrasound, we had a heartbeat.” Another stress on her emotional state: the IVF cycles themselves, which involve daily hormone shots that make women feel nauseous and achy, and, in Vorkink’s words, “nutty and terrible.” Still, Vorkink was determined. Last summer, after her fifth cycle, she learned she’d again gotten pregnant with a frozen embryo. But once again, she miscarried after a few weeks.
At this point, with one cycle left through her insurance, “emotionally, I feel like I need to do something different,” she says. She and her wife decided to try using Snajder’s eggs to create a pregnancy that Vorkink would carry, as she’d always wanted to. “It’s an identity thing for me,” she says. “I don’t know who I’ll be if I can’t have children.” She used to feel like it was essential to her self-concept that she have a biological child, but over four years of cyclical grief, she has had to alter her definition. “I still have a lot of hope that I can bear a child,” she says.
The practice of using one partner’s eggs and the other’s womb, often called “reciprocal IVF,” is popular with lesbian couples, since it gives both women a biological connection to their child. But there was a problem: When Vorkink and Snajder brought the plan to their doctor, she warned them that reciprocal IVF is never covered by insurance. To Vorkink, this seemed nonsensical and unfair—a clear sign that IVF coverage is designed with straight couples in mind. Reciprocal IVF doesn’t create significant extra costs for doctors or insurers; it essentially means dividing the cycle in half, giving the fertility drugs that stimulate the ovaries to the partner whose eggs will be used, then performing the transfer surgery on the partner who will carry. “We’re a family, sharing tissue to make a baby,” she argues, “just like a straight couple. … We don’t fit within the confines of this box they’re trying to put us in.”
That Vorkink and Snajder hit this limit even in Massachusetts shows just how many barriers remain for those who are not in heterosexual relationships. Collura says she could imagine momentum on this cause coming from gay rights groups, whose constituencies are primed to care about the availability of fertility medicine. “They tell me access to IVF and family-building is one of their top three concerns,” she says. Even if the issue turns out to be a bit lower on groups’ lists than that, it’s not too hard to imagine that if it rises up a slot or two, it could become a big part of the national conversation.
So far, that conversation is percolating slowly. There are reasons for this: It’s hard to imagine the fertility landscape changing through the kind of big class-action suit that’s often used to tackle civil rights issues, because that type of relief comes too slowly to help women whose childbearing hopes are acutely time-sensitive. And it’s difficult for RESOLVE and similar organizations to build big networks of supporters. Says Collura: “Unlike cancer, or some of these other things where people sort of hang onto it and want to give back, people are very quiet about their infertility. Once they build their family and perhaps have resolved their infertility, frankly, they close that door and they want to move on.”
Collura is hoping to spend the next few years focusing on “oncofertility” measures—those that would help cancer patients, like the one that narrowly missed becoming law in California two years ago. Though success in this area wouldn’t help the vast majority of people who need access to reproductive assistance, “I do think that it could lead the way,” Collura says. “I think you have to sort of find your beachhead and figure out what comes next.” Along similar lines, Tipton says that ASRM’s top priorities include a pair of bills—currently languishing in Congress—to make the Veterans Health Administration pay to treat service-members who were rendered infertile by injuries in the line of duty.
The brightest spots of hope at the moment are elite private companies, like Facebook and Apple, which are starting to offer egg freezing as a benefit, in order to attract and retain top-notch female employees. This October, the tech company Intel quadrupled its fertility benefits: Employees now have up to $40,000 they can spend on fertility treatment, plus $20,000 to spend on associated prescription medications—and same-sex couples can access the benefits without a medical diagnosis. (Intel also tripled its adoption policy, to $15,000 per adoption with no cap on the number of times it can be used.)
None of that, of course, will help Vorkink and Snajder, whose next steps now rest wholly on their economic status. When the insurance company confirmed that there would be no assistance if Vorkink and Snajder chose to do reciprocal IVF, Vorkink’s parents offered to help. They didn’t want her to subject herself to a sixth, identical cycle that seemed unlikely to produce a happy outcome. In October, Vorkink and Snajder paid $13,000 out of pocket to start the process of reciprocal IVF; a member of Vorkink’s family will be the sperm donor, giving her another layer of connection. Vorkink is appealing the insurance company’s decision, hoping to get reimbursed—though the chances are small, she says that she’ll see it through “on principle.” In the meantime, she feels grateful to her parents. “Thank God for them,” she says, “because I know that this process requires a level of privilege that we don’t have as a couple.” She knows many people would never have been able to take this shot at creating the family of their dreams.