by Elayne Clift
The hype is that women are frivolous, if not downright evil, frittering their time away in law school and then demanding fertility treatment
News stories call them “a worldwide epidemic,” “a public health problem,” and “an economic issue.” Successful parents call them “a dream come true.” They are the babies — often several per birth — resulting from reproductive technology, a booming business in this country and elsewhere. In the United States alone, approximately 270 fertility clinics exist and infertility care is estimated to be a $1 to 2 billion-a-year business, with each attempt at assisted reproduction ranging from $2,500 to $10,000, depending on the method tried.
Based on surveys over the last decade, the U.S. Public Health Service says there are at least 2.3 million “infertile” couples in America who have not managed to conceive after one year of unprotected intercourse. (The World Health Organization (WHO) uses two yean as its standard definition.) Since 1978, when the famous “test-tube baby” Louise Brown was born in England, approximately 20,000 babies have been born in the U.S. through treatments ranging from drug therapy (Clomid and Perganol are the most commonly prescribed) to in-vitro fertilization (IVF), and other techniques in which eggs are harvested, fertilized and implanted. More than 3,100 babies have been born through IVF in each of the last two years. But that number can lead to false optimism. Estimates of successful outcome (which many call “a take-home baby”) vary widely, with 9 to 14 percent being the accepted range.
The rapid proliferation of clinics established to attract and serve infertile couples does raise serious health, economic and ethical questions. For example, what are the health risks to multiple-birth babies? Are clinics profit-driven, promoting more expensive techniques, offering IVF to women who are not suitable candidates, or encouraging those interventions which insurance companies will cover? What are the ethical issues raised by storing thousands of frozen human embryos, the “leftovers” from high-tech fertility treatment? Is the high rate of multiple births that result from reproductive interventions placing an unfair burden on neonatal intensive care units in hospitals? (Overall, according to Dr. Louis Keith, professor of obstetrics at Northwestern University Medical School in Chicago, the number of twins in the U.S. rose 33 percent from 1975 to 1988; the number of triplets increased by a staggering 101 percent during the same time period.) In an interview with the New York Times last May, Keith said, “This is a public health problem because we are producing an incredible number of children who are at grave risk for prolonged stays in the neonatal intensive care unit and all of the complications of prematurity.” In the same article, Dr. Emile Papiernik, who until recently had worked at the hospital that produced the first French test- tube baby in 1982, called the rise in multiple births due to fertility-enhancing drugs a “world wide epidemic.”
Papiernik said that at the hospital where he practiced, half the babies transferred from maternity to neonatal intensive care are from fertility-induced pregnancies. The cost of such care has led countries with national healthcare such as England and France to restrict the number of embryos implanted during IVF to three, to prevent multiple births.
The questions being asked are important, but are they the right ones? Barbara Katz Rothman, sociologist, women’s health advocate, and author of In Labor: Women and Power in the Birthplace, is uncomfortable with conventional queries arising from the boom of hi-tech fertility. “Insofar as access to any medical service is an issue, then yes, it’s an economic issue,” Rothman says. “But whether or not IVF and its consequences are expensive is not really relevant to the question.” The discussion, she says, should be driven by women’s health concerns, and not the marketing interests of clinics, whose advertising techniques Rothman sees as the real problem. “The hype is that women are frivolous, if not downright evil, frittering their time away in law school and then demanding fertility treatment long before they need it to produce exceptional babies.lt is a victim-blaming discussion.” In fact, says Rothman, “the economic system doesn’t permit women to have a child when they want one; it creates a world in which it’s very hard for women to do what they want, and then blames the women.”
In addition to positioning women as cranky and demanding, marketing techniques often contribute to a couple’s perception that they are infertile, and media coverage frequently suggests that fertility techniques have more to offer than they really do. Says Rothman, “You always see the two smiling women with their six babies, never the one woman who made it and the six who didn’t. Or the mother with breast cancer and we don’t know why. Or the woman whose triplets have died.”
Health risks do exist, and are underplayed, for both mothers and infants. Ann Pappert, adoptive mother, health journalist, and author of the forthcoming Cruel Promises: Inside the Reproductive Technology Industry (Simon & Schuster, 1993), sees clever marketing as leading to the notion of “miracle babies.” But, she says, “the health problems are buried in the warm glow of promotion which positions the doctor as brave and humanistic and the client as lucky and adoring.” Both Pappert and Rothman think IVF and other techniques are used inappropriately in many cases and that they are “fraught with problems for mothers and babies.’Tor example, what are the long-term risks for women taking Clomid, Perganol and other drugs, including Lupron, which is approved by the Food and Drug Administration only for treatment of endometriosis but which is often prescribed for infertility? IVF also raises questions. As Pappert points out, “No clinical trials anywhere in the world have measured the safety and efficacy of IVF, but since there m over 200 clinics providing it, we say,’Oh, it must be safe'” WHO agrees that IVF and related lechnologies have not been ad equateiy evaluated A recent report states that “serious risks are associated with IVF. The ovarian hyperstimulation syndrome occurs in I to 2 percent of women treated with ovulation-inducing drugs. Multiple gestation occurs in approximately 25 percent of IVF pregnancies. The perinatal mortality rate for IVF babies is four times and the neonatal mortality rate twice that of the general population. The rate ofvery low birthweight among IVF babies is over 11 times higher than in the general population.”
In Australia, where every IVF attempt and every IVF birth are followed, data reveal that less than 5 percent of babies resulting from IVF are considered to be healthy, primarily because of their low birthweight and related problems. Considered an international standard, the Australian registry results are dismissed by Dr. Duane Alexander, Director of the National Institute of Child Health and Human Development (NICHHD) at the National Institutes of Health. According to Dr. Alexander, NICHHD has a voluntary IVF registry and in a one-year follow-up study of 100 children, no physical or developmental problems were identified. The Australian data, he says, have been “dismissed,” and problems with lowbirthweight babies are a “blip on the screen.” IVF studies in the U.S. have been curtailed since a NICHHD Ethics Advisory Board was disbanded in 1980 by then-President Ronald Reagan, leaving bioethical research tied to fetal tissue in limbo.
Still, as one recent article in Newsweek’s “Business” section put it, “The in-vitro fertilization business is taking off,” adding credence to the concerns of Rothman and Pappert about aggressive marketing techniques. It is chilling to hear one executive of a holding company which supports a chain of IVF clinics say that “the market has barely been scratched,” or to think of clinics becoming “the Burger King of baby making,” both statements reported inNewsweek. Says one physician, “There’s a certain amount of merchandising in IVF.” A New York Times article last summer cited IVF America Inc. for its “ambitious growth plans” to become “the McDonald’s of the baby-making business.”
Claims like these prompted Rep. Ron Wyden (D-OR) to introduce legislation last year to regulate IVF clinics. In a statement to a Congressional Subcommittee on Health and the Environment, Wyden said, “Couples seeking help for an infertility problem are bombarded with advertising claims which have touted success rates of 30, 40, 50 percent or more. They don’t know that a minority of clinics are responsible for the most successful IVF births, let alone which clinics have the best track record in treating patients with their specific infertility problem. And they don’t even know that there’s no one watching to make sure that these facilities meet even minima/quality controls.” Wyden’s bill, which was passed by Congress in October, calls for fertility clinics to report their pregnancy success rates (definitions of success vary but are usually defined as the percentage of IVF treatments that result in a live birth) and for the federal government to publish these rates annually along with the names of reliable embryo laboratories being used by clinics. In addition, a model program for the inspection and certification of embryo labs would be promulgated for states to adopt. Any state failing to comply with this code would be cited in the annual consumer guide book to be produced by the Department of Health and Human Services.
Wyden’s legislation is supported by the American Fertility Society, an organization of health professionals concerned with infertility, the Society for Assisted Reproductive Technology,which conducts its own yearly review of fertility clinics, and Resolve, Inc., a national advocacy group for infertile couples. Amy Hill, Resolve’s Twin Cities Chapter Board chair and a consumer member of the Ethics Committee of Abbott Northwest Hospital in Minneapolis, thinks the legislation has helped give needed exposure to the issues of reproductive technology. “The risks are real,” she says, “and truly informed consent is critical.” Hill agrees with Rothman and Pappert that potential risks and consequences must be put on the table for potential clients. “It is a very expensive, very stressful process with so many unknowns,” she says. But she shies away from an analysis which frames problems primarily from a feminist perspective, and believes that most clinics behave responsibly. “We need to address the needs of infertile couples and their health issues,” Hill says. “I see my mission with Resolve as giving access to others.”
Hill is active in trying to increase insurance coverage for infertility treatment. Currendy only 10 states require insurers to provide limited coverage. Because private health insurance companies have been reluctant to pay for IVF, consumers must bear substantial costs. With each treatment costing anywhere from $2,500 to $10,000, to obtain a baby a couple may have to go through several treatments with a final total of over $20,000. According to government estimates, Americans spend $1 billion a year to combat infertility.
Whatever the risks, the caveats, the expense, women like Amy Hill continue to employ assisted reproductive technologies, despite the limited success rate. Hill is also one of the lucky ones. She will give birth this year to her second child. “The joy,” she says, “is inexplicable.”