Conceivability_What I Learned Exploring the Frontiers of Fertility

by Elizabeth L. Katkin

  Fertility clinics advertise in magazines, on the Internet, on radio, and on billboards. They hire marketing consultants and public relations firms. They cultivate relationships with referring physicians. “We wine and dine them,” reports one lab director, “and tell them how good we are.”22 And their efforts are often rewarded. Fertility specialists, such as reproductive endocrinologists, earn almost 50 percent more in salary than general endocrinologists, not to mention the potential profits from entrepreneurial ventures such as egg and sperm donation and lab work.23

  Fertility treatment is expensive and profitable. What impact does the profit incentive have on a patient who walks through the door of a clinic? Or who has already experienced five failed IVF cycles?

  Three spin-off effects of the commercial nature of the industry that are particularly worrisome are the innate conflicts of interest, the fragmented nature of the provision of fertility services, and the overemphasis on success rates, all of which can have a significant influence on treatment.

  Fertility clinics have a clear profit motive in a market that offers what, for many, is a priceless product, with consumption limited only by a patient’s ability to pay. And because many fertility doctors own their own practices (and often the labs, donation agencies, and other ancillary organizations), there is inherent potential for conflicts of interest between their pure practice of medicine and their commercial incentives; that is, what is in the doctor’s best interest is not necessarily in the patient’s.

  Patients who start down the path of fertility treatments describe it as being stuck on a treadmill that they cannot get off; as feeling like they’ve fallen down a rabbit hole and can’t get out; as an addiction, as potent as cigarettes or alcohol. They just can’t stop trying. I know I felt that way. As did Paula, and Jessica, and almost every woman with whom I spoke, particularly those who repeatedly miscarried.

  When I first met Marcy and listened to her calmly tell me her harrowing tale, she shared with me that she felt that nothing could really help her recover from the loss of her baby other than getting pregnant again. Her confession brought me back over a decade, to my gleaming office in the City of London, where I sat frozen in front of my computer screen, reading a column by the journalist Dahlia Lithwick about her miscarriage. She wrote that she had been warned by a colleague that one never truly recovers from a miscarriage until she gets pregnant again. Now newly pregnant, Dahlia agreed that at least in her case, her colleague was right. Terror struck my heart. I was eighteen months into trying desperately to conceive after my second miscarriage, and I was still not OK. What if I never got pregnant? Would I ever be OK again?

  Women who miscarry often think that it might be easier to quit if they had never gotten pregnant. But those who fail to conceive do not tend to agree, especially when there is no explanation for the failures. With no reason to believe that an eventual pregnancy won’t stick, and conditioned to hope that the next cycle will work, most find it nearly impossible to give up trying (unless or until the money runs out, of course).

  Yet sadly, the more times a woman attempts IVF without success, the less likely she is to succeed the next time around. As strong as the will is to have a child, it may not make sense to keep going. Confounding the situation, the same doctor charged with providing guidance, which may sensibly include counseling her to stop, often stands to profit from one more cycle. In most other fields of medicine, unless a condition is terminal, there is generally an understood stopping point. If the proposed remedy doesn’t cure the ill, patient and doctor often move on. But fertility treatments have no such stopping point. The patient, often desperate for a baby, doesn’t want to quit. The doctor may advise her that her odds are low, but, similarly, he has no incentive, or requirement, to urge her to quit. It is not that doctors don’t intend to, or don’t in fact “do the right thing”—of course many do, as in my own case—but unlike most other fields of medicine, the inherent conflict is there. And patients need to understand this innate tension to be able to navigate the waters.

  Compounding this tension is the fact that doctors who practice in for-profit clinics, which they may own, often become competitors. The fragmented and competitive nature of the fertility business may impact the evolution of the science as a whole, particularly in light of the dearth of federal funding for research that might yield a greater, and more widely shared, understanding of more of the causes of and treatments for infertility. When a fertility clinic makes a breakthrough enabling its success rates to jump, it gains a competitive advantage, rendering little impetus for the clinic to share its “secret sauce.” In contrast to discoveries relating to the treatment of cancer or cardiac problems, for example, where scientific breakthroughs and best practices are shared broadly among practitioners, fertility clinics are incentivized to refine their protocols and tout their greater ability to achieve higher pregnancy rates than their competitors.

  * * *

  Success rates are the metric by which fertility clinics and practitioners live and die, despite the fact that generalized success rates can often be misleading, or worse, manipulated. “Success rates are difficult,” says Dr. Sauer, “because everyone looks at a success rate as the baby for which they are trying so hard to achieve. They don’t really question the number . . . or ask what that really means to a program . . . . If a program wants to maintain a very high success rate, they can and do literally select the best patients to treat.”24 Clinics also, troublingly, may manipulate their reported success rates, according to Dr. Vitaly Kushnir, a reproductive endocrinologist with the Center for Human Reproduction in New York City who analyzed six years of clinical data reported to the CDC.25

  Marcy, a fit, healthy marathon runner, confronted this problem. Concerned that Marcy and her husband would have trouble conceiving due to her low ovarian reserve, her ob-gyn referred her immediately to a top fertility clinic, nationally recognized for its success rates. But Marcy was a challenging case, and she quickly sensed that the doctors at the clinic were not keen to treat her. “I felt like they were saying, ‘We don’t want to do IVF because you are going to ruin our statistics,’ ” she recalls bitterly, “especially because I was so young.”

  The variability of success rates across age groups further muddies the analysis. For example, while 29.2 percent of all fresh (non-donor) IVF cycles in the United States resulted in a live birth in 2013, women under age thirty-five experienced a live birth rate of 39.9 percent, while the odds of a live birth for women over forty-two was only 5.2 percent and for women over forty-four, just 1.6 percent.26 So a patient studying success rates from clinic to clinic must look very specifically—and realistically—at patients in her age group, particularly those facing similar challenges or using similar protocols. Marcy learned this as well. In searching for a second clinic, she pored over the success-rate charts provided by the clinics as well as what she could find from the CDC, looking furtively for cases that fit her profile. Perhaps not surprisingly, at the renowned clinic that was reluctant to treat her, she found none.

  Possibly because people considering IVF are hopeful to have children, research shows that patients facing treatment tend to vastly overestimate their odds of success. Perhaps aspiring parents would more accurately perceive their chances if pregnancy rates were relayed in a form that more clearly conveys the high rates of failure, such as “70.8 percent of all fresh (non-donor) IVF cycles did not result in a live birth in 2013.”

  Yet in the face of a flawed system, patients shop for the clinics with the highest success rates, and clinics do everything in their power to oblige, pumping their rates as high as they can and publishing them. The pressure to keep numbers up forces clinic directors to face extraordinarily difficult choices about whom to treat, knowing that the harder the case, the lower the odds of success, which may hurt the clinic’s statistics and the overall image of the program. This intense focus on reporting success rates “actually drives clinics to provide sub-optimal care,” according to Dr. Kushnir, who co
nsults part-time with the CDC in an effort to improve the data reporting methodology. “There is motivation to report best outcomes.”27

  Marcy well remembers her shocked response to being told she was not the “right” fit for her chosen clinic: “I am offering you $100,000 to basically do nothing and you still won’t treat me?” Acknowledging that some clinics “cherry-pick their patients to artificially inflate their reporting,” Dr. Batzofin adds that this is certainly not the case with all clinics, emphasizing that there are clinics, like his, “that treat patients, not numbers.”

  In addition to determining who gets treated, the heavy emphasis on success rates can also affect the treatment protocol of patients, producing a unique combination of conservative and aggressive medicine. On the conservative side, doctors often prefer to stick to protocols that have worked for others in the past; many are understandably cautious when considering innovative treatment, wanting to minimize the risk of a patient not conceiving a baby, or of harming their own publishable statistics.

  On the aggressive side, some clinics will take the “kitchen sink” approach, trying anything and everything that has worked before, often prescribing protocols and drugs that may not be specifically medically indicated, all in hopes of achieving the desired pregnancy. Notably, Lord Robert Winston, an eminent British fertility researcher and clinician who now serves as professor of science and society and emeritus professor of fertility studies at Imperial College London, concerned about the proliferation of fertility treatments in the United Kingdom (a country with far greater regulation than the United States) warned fellow academics that “we have gotten carried away with massive enthusiasms in reproduction. That mixture of enthusiasm and patient desperation is actually a very toxic and heady mixture. It is worthwhile standing back a little from the technologies that we employ.”28

  The paramount importance of success may also lead some clinics to push for strategies with a higher likelihood of a pregnancy, despite a patient’s wishes. Paula, for example, who switched clinics a few times, felt pressure at her first clinic to go straight to an egg donor for her very first cycle, despite her strong desire to try with her own eggs. Marcy felt the same pressure. “Do they make more money when they use donor eggs?” she asked me, puzzling over the fact that so many women she knows were urged in this direction, even before trying one cycle of IVF with their own eggs. (In some cases, they do.)

  Sometimes the quest for success leads fertility clinics in the United States to transfer more embryos than may be beneficial or desirable for a healthy pregnancy. In the case of “too much” success, parents of potential multiples must face the often painful and heartbreaking decision to either continue with a likely challenging pregnancy and childbirth, or to selectively reduce. After five years of trying to have a baby, Paula and Derrick faced the hardest decision of their lives when told that their surrogate was pregnant with four babies, and if they did not terminate the pregnancy of two of them, there was a very high risk of the surrogate miscarrying all four of them. To this day, Paula can’t speak of it without crying, remembering the agony of that decision, especially after she and her husband had been struggling so long to create life.

  But it doesn’t need to be this way.

  A New Measure of Success?

  The drive to transfer multiple embryos hinges to a great extent on the definition of “success,” which is calculated for the all-important CDC success-rates table as the number of pregnancies achieved per cycle. One cycle of IVF is defined in America as a cycle in which freshly generated embryos or previously frozen embryos are transferred to the womb. This means that if a woman who has a successful egg harvest elects to transfer only one healthy-looking fresh embryo (while freezing the rest) and does not become pregnant, then opts to transfer a second (frozen) embryo from the original retrieval in a subsequent cycle and does conceive, the clinic will have produced one failure followed by one success. If the same clinic had transferred two embryos to the same woman during the first transfer cycle, and the woman conceives one of them, the clinic would be credited with one success and no failures. So the clinic is clearly motivated to transfer more embryos to increase the odds of success the first time.

  But while the CDC method for measuring success may make sense in the statistical world, it doesn’t necessarily make sense in the real world. There is an ever-growing body of evidence indicating not only that elective single embryo transfers (eSETS) are safer for a woman undergoing IVF, avoiding the risk of multiples, but also, significantly, that clinics do not experience declines in their success rates when transferring single embryos. In Sweden, Belgium, and parts of Canada, where eSET is on the rise as a result of both regulation and encouragement through strong financial incentives, multiple births have been dramatically reduced while live birth rates have been maintained.29

  So what is holding clinics and patients back from more single embryo transfer in the United States? The expense of each IVF cycle, the lack of insurance coverage for the majority of the country, and the way success rates are calculated and presented.30

  Expanding insurance coverage would clearly help to alleviate the current climate in which patients are driven or even forced by financial circumstances to try to maximize their pregnancy odds each cycle by transferring multiple embryos, despite health risks and potential long-term costs. Higher coverage limits or providing benefits for more cycles would also restore the ability of patients to make decisions that are in their own or their families’ best interests. While it may seem that an expansion may be too costly to impose on employers or the public, evidence points to the contrary: more than 90 percent of employers that included infertility coverage in their company health insurance reported that the increased coverage did not have a measurable, significant increase in the cost of their plans.31

  Citing the moral hazard created by the toxic combination of expensive treatment and inadequate health insurance, a group of fertility specialists at the Hastings Center and Yale Fertility Center persuasively suggest that a simple change in calculation of success rates would help patients, both in terms of their treatment, and, for those lucky enough to have insurance, in the way their insurance benefits are calculated. In their view, a “cycle” should include the transfer of all embryos generated during one egg collection cycle. That is, one cycle would include a complete series of events: the egg collection and initial fresh embryo transfer, if any, followed by successive frozen embryo transfers until either a pregnancy is achieved or all the embryos from the original collection have been transferred.32 This approach would more accurately reflect the results of the eggs collected per harvest—particularly in cases of egg freezing and freezing of embryos undergoing genetic screening, both of which result in no transfer at the time of collection—and would achieve good pregnancy rates without multiple births. Perhaps most important, it would diffuse the unrelenting pressure to try to get a woman pregnant in a given cycle at all costs.

  “Fertility Tourism”

  The search for the intersection of a high quality clinic, a jurisdiction with favorable laws, and—a deal breaker for many—a price point that is manageable, leads many to travel to wherever it is on earth that they can find, and afford, what they need to have a baby. Traditionally thought of as traveling abroad to receive treatment in a different country, fertility tourism for Americans is often domestic as well as international, with New Yorkers traveling to California and Michiganders hopping over to Illinois.

  While the United States, with its limited regulation, is often a destination for Europeans from countries like Germany and Italy with more restrictive laws, US fertility seekers turn to countries like Israel, India, Spain, and Mexico for IVF, particularly with donor eggs, because of their high success rates and lower costs.33 Russia and Ukraine have been gaining popularity as well over the last decade, due to the cost-effective success (approximately $3,000 in Russia and $1,800 in Ukraine for a single cycle of IVF) in a climate with favorable laws, including with respect to surrog
acy and donation.34 Experts estimate that the Russian IVF market, which reached nearly $400 million in 2015, will grow to $641 million by 2022, fueled in large part by its low costs in combination with advanced IVF facilities and treatment options.35

  It is not only those needing a third party who travel. Some would-be parents, for example, pick a jurisdiction where they can choose the gender of their child. As many as one in five couples who seek treatment at HRC Fertility, a network of clinics in Southern California, go for “family balancing,” or nonmedical sex selection.36 While growing in popularity, family balancing is controversial, with global agencies such as the United Nations and World Health Organization opposing sex selection for nonmedical reasons. Banned in numerous countries, including Australia, Canada, China, India, and the United Kingdom, gender selection performed using preimplantation genetic diagnosis (PGD) is currently legal in the United States, Mexico, Thailand, and a handful of other nations, although clinics have their own rules about using the technology in the absence of a medical need.

  Traveling in search of a baby has become so common that it has spawned its own name, “fertility tourism” or “reproductive tourism,” and a host of books and movies. Google Baby, an Israeli documentary, tracks gay Israeli men who set off on a journey to purchase eggs in the United States and procure a gestational surrogate in India, resulting in the birth of an Israeli-American baby on Indian soil. The book Cosmopolitan Conceptions: IVF Sojourns in Global Dubai, by Yale professor Marcia Inhorn, tells the stories of twenty-one couples based on interviews with “reprotravelers” from more than fifty countries seeking treatment at one fertility clinic in Dubai; these seekers hail from other nations in the Middle East where IVF is not allowed; from the east coast of Africa where it is not available; from Europe to bypass laws; from Australia, South Asia, and even a few from America, primarily to save on costs. Ironically, living and working in Dubai, I went to Russia for treatment. When people can’t get what they need in one country, they will go to another, if they have the means.