The process didn’t work as smoothly in the United States. Faced with a similarly conflicted public, as well as a great deal of agitation remaining in the wake of the highly controversial Roe v. Wade decision in 1973, five years prior to Louise’s birth, no such authority was established—then or since. One possible explanation for this failure is that in addition to the medical and scientific challenges assisted conception presents, there is a complex set of moral and ethical policy challenges that those on both the left and the right have been reticent to tackle.
Fertility “is unregulated because it touches on two ‘third-rail’ issues,” according to Arthur Caplan. “It touches on abortion and also the creation of embryos, which politicians run away from because too many people still disagree about the right to use reproductive technologies.”26
Prior to Louise’s birth, the US government had “temporarily” suspended funding for fetal research in response to the backlash from abortion foes angered by the Supreme Court’s decision in Roe v. Wade. After Louise’s birth, as in the United Kingdom, the US government convened a special commission to advise on IVF. And, as in the United Kingdom, the commission recommended that the ban on spending be lifted and that IVF be regulated by the Department of Health. But the debate over assisted reproduction, like that over abortion, was too fierce, and no politician would touch it. The ban on federal fetal research remained, and the provision of IVF services stayed largely unregulated.
Nevertheless, with or without government participation, Louise had been born, and a new chapter in reproductive technology had begun.
The absence of federal support for crucial fetal research in the United States gave rise to expanded private practice and the birth of the for-profit fertility clinic. Despite a moratorium on federal funding for IVF research and other studies involving early human embryos that remains in place today, IVF research continued and, in fact, blossomed in the private sector, although without the federal oversight or ethical review that is required when research is funded with public dollars. The federal government in effect ensured its lack of involvement in 1996, when Congress passed an amendment banning the use of federal funds in research related to the creation of embryos. President George W. Bush continued this trend in 2001 with his ban on the use of new embryonic stem cell lines in research, limiting federal spending to the sixty stem cell lines created prior to August 9, 2001, only twenty-one of which were viable.27 In 2009, President Barack Obama lifted the moratorium on the federal funding of embryonic stem cell research, yet the legislation banning federal funding of experimentation on human embryos, enacted more than twenty years ago, continues to block this research.28
Against this backdrop, for-profit clinics expanded, and profits there were aplenty. What began in 1978 as a medical breakthrough in England—a nation with a national health service—has evolved into a more than $3.5 billion industry in the United States, representing a fourfold increase over the last twenty-five years. According to Marketdata Enterprises, in 2012, the average US fertility clinic had revenues estimated at $3.5 million. But while clinics and the provision of treatment continued to grow, largely unfettered by regulation, what was the impact of the lack of federal funding on domestic IVF research? Remarkably, in a survey of more than six thousand studies on the effectiveness of assisted reproductive technologies between 2000 and 2008, approximately 80 percent were conducted outside the United States.29 Notable advances in reproductive technology have been driven overseas—such as mitochondrial replacement therapy, the creation of a baby using the genetic material of three parents, being performed by a United States–based doctor in Mexico.30
In this regulatory vacuum, fertility doctors have been left largely on their own to chart their course through self-regulation, a situation that presents both an opportunity and a challenge for a patient new to the world of infertility trying to understand the complex array of treatment possibilities, outcomes, and risks.
The rapidly evolving science is a boon, a lifesaver, the very reason I have my two children. But a patient must also understand the regulatory climate, or lack thereof, and the financial and other incentives underlying proposed treatments, and adopt the point of view of a consumer, aware of the varying players and motives; the fact that treatments can vary widely between clinics and among countries; that what is “standard” in one place may be prohibited in another; and that success rates—which may influence a clinic’s treatment protocols—vary dramatically, as do costs.
Obtaining the “priceless,” unfortunately, often comes with a steep price.
You can’t buy love, but you can pay heavily for it.
Henny Youngman
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Pricing the “Priceless”
Big Money and the Finance of Fertility
Jessica, who has been through an uncountable number of hormone shots, egg collections, embryo transfers, and all things fertility related, likes to say that “infertility is not for the weak.” Well, in the United States, it is also, unfortunately, not for the poor. The assisted, scientific pathway to parenthood is an expensive proposition. The fertility services industry in the United States is expected to break $4 billion in 2018, with the cost of infertility drugs alone exceeding $500 million.1 The global market for fertility drugs is expected to reach $4.8 billion in 2017 and analysts anticipate that the global fertility services market will exceed $21 billion by 2020.2
Although the average cost of one cycle of in vitro fertilization in the United States is popularly reported as costing approximately $12,400 per cycle,3 a recent national survey found the actual cost now exceeds $23,0004—a figure consistent with those I spoke with who reported spending between $18,000 and $30,000 per cycle, often coming after several attempts at IUI, costing a few thousand dollars each. Add onto that potential additional costs for drugs ($3,500 to $6,000), genetic testing ($3,000 to $7,000), intracytoplasmic sperm injection (ICSI) ($1,000 to $3,000), egg or sperm donation, or a surrogate. The average patient trying to conceive cycles two to three times—and many, of course, attempt more—bringing the average spend to over $50,000.5
Costs for egg, sperm, or embryo donation, or for those who need a surrogate, are, of course, much higher. While donor sperm typically costs in the range of $1,000 to $5,000, egg donation expenses can run from $20,000 to well over $100,000, including agency and legal fees. (Embryo donation, in contrast, averages a comparably lower $7,500 to $19,500 per cycle, as it involves a frozen embryo transfer rather than a full IVF cycle.) A surrogate pregnancy done through an agency can easily top $100,000, and the average cost for a couple to have a child through surrogacy with an egg donor is $75,000 to $200,000.6
In assessing the real cost of IVF to patients, researchers from the University of California, San Francisco found that the average cost of successful IVF treatment was $61,377, significantly higher than the median cost per IVF cycle of $24,373. Similarly, the cost of successful IVF with donor eggs was $72,642, as compared to the more commonly cited average of $38,015.7
There is no way around it: fertility treatment, particularly involving third-party parenting, is expensive, placing it out of reach for many in need. It is also variable, and would-be parents’ prospects may be dependent on the vagaries of where they live. Robert and Jeffrey, for example, used an agency, a lawyer, a paid surrogate, a paid egg donor, and a well-respected IVF clinic to facilitate the birth of their daughter. Despite a price tag of more than $200,000, they were extremely happy. Happy enough, in fact, to go for a second child using the same agency, egg donor, and surrogate—this time resulting in identical twin boys, a relative bargain at a total cost of $150,000.
Rebecca and her husband, however, were not as fortunate. Despite combined medical, legal, and agency fees of more than $100,000, their surrogacy attempts via repeated IVF cycles failed to deliver the child they hoped for.
Across the pond in London, Alice, a cancer survivor who could no longer carry a baby, sought to have a baby with a surrogate using her own eggs (removed befor
e her chemotherapy) with her husband’s sperm. Although the free round of IVF often provided by the British National Health Service was not available to the surrogate, their total medical costs were approximately $6,000, substantially lower than in the United States. There were no legal fees, and as surrogacy in the United Kingdom is legally uncompensated apart from reimbursement of expenses, their total compensation to their surrogate was about $15,000, rendering their total out-of-pocket expenses to have their baby in the region of $21,000—certainly not a small amount but a fraction of the cost to many in the United States.
And Jenny and her husband, Duke, learning that they needed an egg donor after a year and a half of failed fertility attempts and mounting expenses at home in the United States, traveled to Barcelona in hopes of more cost-effective treatment in a medical environment that appealed to them. Less than the price of six eggs at their clinic in the United States, their total treatment costs in Spain amounted to 10,000 euros: 7,500 euros for the IVF cycle, including the donor; 1,500 euros for medicine for the donor; and 1,000 euros for medicine for Jenny. Jenny and Duke were well rewarded for their efforts. Their donor produced eight eggs, seven of which were viable, and Jenny gave birth nearly nine months later to a beautiful, healthy baby girl.
Paying for IVF: The Fertility Casino
Unfortunately, there is not much help available in the United States for would-be parents facing the steep costs of fertility. Fewer than a third of states require insurers to offer coverage for infertility diagnosis and treatment,8 and among those that do mandate some form of insurance, many exclude IVF treatment altogether, limit the number of cycles covered per patient to as few as one, do not require coverage by employers who self-insure, or cap the monetary benefits to amounts as low as $15,000. These restrictions mean that relatively few women or couples have insurance benefits that can see them through the long haul of taking home a baby. In fact, in contrast with many other costly medical treatments that are covered by health insurance, approximately 85 percent of infertility treatment expenses are paid for out of pocket.9
Faced with expensive treatment and inadequate insurance, patients are increasingly turning toward other funding options. Loans in some form—ranging from specialized fertility loans10 and personal loans to funds provided by lending clubs and home equity lines of credit—are the predominant option; a 2015 survey conducted revealed that 70 percent of respondents incurred debt from fertility treatments.11 Families that can’t qualify for personal loans may turn to credit cards, which often carry steeper interest rates, and quickly accumulate debt.
In an effort to be more attractive in a fiercely contested marketplace, some clinics now develop competitive pricing plans and “money-back guarantees.” Hoping to save money over time, patients are increasingly turning to an array of package plans, offered by an ever-growing number of US clinics (often through financing partners), some of which offer better pricing for essentially buying in bulk, while others, often called baby-or-your-money-back plans, offer refunds. But do these programs actually benefit their participants?
A plain bundled IVF package typically offers a discount for a certain number of cycles paid for in advance, with no refund available. Whether a patient succeeds on the first try, or never succeeds, the clinic keeps the cash. Success, it is important to note, does not necessarily mean the birth of a baby. Frustratingly, some clinics define success as a positive pregnancy test, or making it through the first trimester, rather than a live birth.
In a refund plan, on the other hand, a couple pays a fixed fee, for example $50,000, for the right to go through as many IVF cycles as are needed to produce a live baby. In some programs, such as the multi-cycle refund programs offered by Attain IVF, part of a national network of fertility providers that perform more than 25 percent of all IVF procedures in the United States, clients are entitled to receive partial or full refunds based on the specific program they enter. Attain IVF’s Two-Cycle Program, for example, offers a potential refund of 50 percent of IVF costs to an eligible client that does not have a baby after two retrievals and transfers, while the Three-Cycle Refund Program offers a full refund to an eligible client who is not successful after three cycles.12 In contrast, under the terms of the ARC Success Program—the refund plan offered by Advanced Reproductive Care (ARC Fertility), the nation’s largest network of partner fertility clinics—if a patient gets pregnant from her first or second IVF cycle, she is entitled to a refund with respect to money paid for additional cycles, but there is no refund forthcoming if she is never successful.13 Each program is a gamble, but are you betting for yourself, or against yourself?
Perhaps not surprisingly, skeptics argue that much like casinos, the house always wins. In the fertility version, stacking the deck can mean choosing patients with the greatest chance of success—for example, those who are under thirty-seven, have never had a miscarriage or failed IVF cycle, and have encouraging blood test results. The data, albeit limited in scale, seems to back this up. In a small survey of those enrolled in a baby-or-your-money-back program, 67 percent were successful in their first cycle, far exceeding the national average, and 80 percent were successful after two cycles. (It is notable that 87 percent of these women had two or more embryos implanted, also exceeding the national average.)14 Ironically, it is precisely those patients who are offered a refund program that likely do not stand to benefit from it. It’s like paying a rental car company for insurance when the credit card used to pay for the car already provides sufficient coverage.
While a refund plan would clearly seem more desirable than its nonrefundable bundled sibling, due to the generally stringent requirements, not all would-be IVF candidates qualify. Attain IVF’s refund packages, for example, consider age, body mass index, and medical history, excluding women over thirty-eight and those with diminished ovarian reserve. The plain bundled packages do not tend to be as strict on who can participate, although success rates of 42 percent on the first cycle and 62 percent after two cycles,15 again exceeding the national averages, imply that women in these programs are also likely to have better-than-average odds of success, and may in fact not need the program.
Also, although both types of package plans claim to have fixed prices for the bundle, it is critical to understand that the real out-of-pocket cost of treatment may be up to 50 percent greater than the list prices, as the costs of real-world necessities such as diagnostic tests and medication, as well as options such as ICSI, are not usually included in the package prices.
Following in the footsteps of many US clinics, Manchester Fertility launched the first multi-cycle refund plan in the United Kingdom (and perhaps the first outside the United States) in 2014.16 Administered in partnership with Access Fertility, the program offers to repay up to 70 percent of treatment costs to qualifying patients who failed to have a baby after three IVF cycles. By 2017, Access Fertility offered a range of multi-cycle refund and loan programs in partnership with thirty clinics across Britain.17
Acknowledging the Las Vegas–style fertility culture in the United States and the desperation of many trying for a child, Dr. John Zhang of New Hope Fertility Center in New York moved further into the realm of gambling, offering a lottery to give away thirty IVF cycles—representing approximately $1 million worth of treatment—at no cost. In return for this “free” treatment, lottery entrants must forfeit their anonymity, agreeing to be announced on Facebook Live, and commit to foot the bill for the medications. They must also, arguably, prepare themselves for another potential downward spin on the fertility roller coaster, in the event their hopes of winning the lottery are dashed. In introducing the lottery, Dr. Zhang hopes to not only help couples in need but to raise awareness of infertility and the vast size of the community struggling with it.18
Profits, Conflicts, and the Impact on Care
Of course, there are reasons that treatment of infertility is more expensive than other fields and more expensive in the United States than in other countries. As Dr. Batzofin points out
, doctors in the United States have to pay “incredible premiums for malpractice insurance,” and equipping and running a state-of-the-art lab is an extremely expensive endeavor. A sophisticated lab includes “incredibly high-cost equipment—one piece of equipment can cost over $100,000; one ultrasound machine can cost over $50,000.” Plus the lab is staffed by highly educated embryologists who must be well compensated. “Is it any wonder that the costs of providing these services are not cheap?” Dr. Batzofin muses. Not to mention the inordinately high prices of the medications in the United States, which can be more than double the cost of the same drugs overseas.
Tellingly, fertility clinics are viewed as a commercial industry even among those who run them. They are in the business of producing embryos and getting women pregnant. Although it is a very special business—the business of helping would-be parents have children, some worry about the implications of it being “a business no different than others.”19 Concerned that business influences, such as the desire for profits, may lead to ethical lapses, Dr. Alan DeCherney, head of the reproductive endocrinology and gynecology affinity group of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), noted scandals have become so prevalent that one “can’t go through a week without reading something in the paper about reproductive technology.” Contrasting this with other medical specialties, Dr. DeCherney, who served as past president of both ASRM and SART and former editor in chief of the medical journal Fertility and Sterility, did not “remember a scandal about the treatment of heart disease.”20 Dr. Merle Berger, the founder of Boston IVF and a highly regarded professor at Harvard Medical School, describes his job in distinctly commercial terms: “I manufacture embryos.”21
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