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10 things a fertility clinic will tell you

1. We can’t change basic biology

American women are becoming moms later than ever before, thanks to improvements in fertility treatments and women’s advancements in higher education and careers, which have opened up more opportunities while also creating obstacles to starting a family. The number of women having their first children between the ages of 40 and 44 increased more than fourfold from 1985 through 2012, with the number of such births reaching 109,579 in 2012, according to the Centers for Disease Control and Prevention.

Celebrities who get pregnant well into their 40s—often with the help of unlimited financial resources—fuel a general misconception that a woman’s fertility stretches easily into her fifth decade, experts say.

Yet the stubborn truth remains that women are most capable of conceiving in their mid-20s. A subtle drop in fertility begins in the early 30s, just as many women are hitting their career strides; the decline accelerates around age 37 and then more sharply after 40, fertility doctors say. In an era when an early focus on careers means many women don’t find their mate in their 20s, and those who do may not feel financially secure enough to have children before age 30, “society makes us do our family building when nature isn’t most efficient,” says Dr. Thomas L. Toth, director of the Massachusetts General Hospital In Vitro Fertilization Unit and an associate professor at Harvard Medical School.

Of course, not all fertility problems are age-related. Younger women can have medical issues, such as polycystic ovary syndrome, a hormonal disorder, that make it difficult to conceive. And while infertility is often thought of as a female issue, in as many as 40% of cases the problem lies with the male partner. It all added up to a $3.5 billion market for fertility services in the U.S. in 2012, up more than fourfold from 1988, according to Marketdata, a Tampa, Fla..-based market research firm.

2. You might be using the wrong drug, or the wrong doctor

An estimated 10% of U.S. couples have trouble conceiving. Historically, a couple has been considered infertile if they don’t conceive after a year of regular, well-timed intercourse. At that point, women under 35 in otherwise good health—in other words, without an underlying condition that could affect their fertility—are advised to see a reproductive endocrinologist, the medical subspecialty of obstetrics/gynecology that handles fertility treatments. Women between 35 and 40 are advised to see a specialist after trying for 6 months, while those over 40 shouldn’t wait more than 3 months before seeing a specialist.

There are approximately 1,400 practicing reproductive endocrinologists offering fertility services across 480 fertility centers in the U.S., according to Marketdata. Yet for a number of reasons, many women wait too long to see a specialist, experts say. And in some cases, they may be spending too long taking fertility drugs under the care of their obstetrician/gynecologist. (While only reproductive endocrinologists conduct highly specialized procedures such as in vitro fertilization, or IVF, ob/gyns prescribe fertility drugs that help stimulate egg production and maturation.)

Once the right dose has been determined, women should generally not stay on fertility drugs for more than 6 months, says Dr. Zev Rosenwaks, director of the Ronald O. Perelman and Claudia Cohen Center for Reproductive Medicine of Weill Cornell Medical College. Yet it’s common to hear stories of women continuing with the drugs for much longer, infertility experts say.

Time is of the essence when it comes to fertility treatments. Chances of conceiving only decline as the months pass. What’s more, egg quality declines so precipitously in the early 40s that many clinics won’t allow a woman to use her own eggs in IVF procedures past age 42. After that age, she must proceed with eggs donated by a younger woman.

A recent study funded by the National Institutes of Health found that, for women ages 38 to 42 years old with unexplained infertility, proceeding immediately to IVF—rather than the common practice of trying other treatments first—offers the best chances of a baby in the shortest amount of time.

3. We’ll break the bank

The average cost of an IVF cycle in the U.S. is $12,400, but that’s hardly the sum total even for a woman who succeeds on her first cycle.

By the time she reaches the stage where she’s trying IVF, a woman has likely spent thousands of dollars on fertility drugs and less invasive treatments such as intrauterine insemination, a type of artificial insemination where sperm is inserted directly into the uterus. The cost for this procedure can range from $275 to nearly $2,500, depending on where it is done and whether the price includes medications and related tests or not. A monitored cycle of fertility drugs, including blood tests and ultrasounds, can cost upward of $800, according to price data on fertility clinic websites.

While some states mandate a certain level of insurance coverage for infertility treatments, coverage is incomplete even under the best of circumstances, experts say. “We could’ve bought a house with all the money we spent,” says Deborah Fields, 42, a San Francisco Bay Area resident who suffered four miscarriages during a series of fertility treatments in her 30s.
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A demonstration of fertilization techniques on a nonviable embryo.AP

While a healthy baby is a priceless gift, doctors must be upfront about the projected costs involved, experts say. Fertility clinics have traditionally quoted prices cycle by cycle and former patients say they sometimes don’t give women an accurate sense of their likely need for multiple treatments. “Usually, doctors are very focused on providing the health aspect, but in reality people have to pay for this,” says Dr. Mylene W.M. Yao, co-founder and CEO of Univfy, a company that predicts a woman’s chances of IVF success based her detailed health profile and nonpublic data from several fertility clinics.

Fields stopped treatment after several years and adopted a baby boy. When her sister offered to carry Fields’ biological child—who grew from an embryo that resulted from Fields’s fertility treatments—a daughter later joined the family. The adoption costs and the costs of her sister’s medical care contributed to their total outlay, but they also brought a happy outcome after years of heartbreak, Fields says.

4. Our money-back guarantee isn’t such a great deal

A number of fertility clinics offer “risk-sharing” programs that allow patients to pay a flat fee, typically around $20,000, for a package of six IVF cycles. If all cycles fail, then the patient gets a full refund. These programs are called shared-risk because the woman risks overpaying if she gets pregnant on the first cycle, and the clinic risks losing money if the woman never gets pregnant.

In reality, the financial risk is stacked toward the patient in this type of program, experts say. Clinics screen patients wishing to participate in such guarantee programs, generally admitting only women who they believe will get pregnant quickly. “If you’re a good prognosis patient, this money-back program is good for the clinic,” said Cornell’s Rosenwaks.

What’s more, there’s a concern that doctors may treat women more aggressively than is prudent, since they have a financial stake in the outcome.

Still, these programs may give peace of mind to couples that they’ll have funds left for other options if IVF doesn’t work, Rosenwaks says. And that actually happened with Deborah Fields, who got her $18,000 back after six IVF cycles failed. She says her doctors were surprised that the course of treatments didn’t work. “When we walked away, they thought we should keep trying,” she says. Instead, she applied the refund toward adoption fees for her son and then, later, toward medical treatments for the sister who carried Fields’ biological daughter.

In a position paper published last year, the ethics committee of the American Society for Reproductive Medicine writes of risk-sharing programs that, “great care is needed in their implementation to ensure that patients are fully aware of their advantages and disadvantages, including the likelihood of success, the costs that are not covered, and the incentives that providers offering this plan have, to take risks to assure success.”

At Shady Grove Fertility Center—the country’s largest fertility treatment center, with offices in Maryland, Pennsylvania, Washington, D.C. and Virginia—doctors try to dissuade women from joining their shared-risk program if it seems like they’ll have early success, says Dr. Robert J. Stillman, medical director emeritus. Yet patients appreciate the peace of mind and often join anyway, he says. “Our goal would be to have universal insurance coverage for IVF and to have shared risk be a thing of the past,” Stillman says.

5. We don’t have a good handle on every health risk

Some of the health risks involved in fertility treatments are well known to doctors. These include the risk of multiples, which accounted for nearly half of the babies born through IVF in 2010.

Twins face an increased risk of complications, including preterm birth and its associations, such as cerebral palsy; low birth weight and even stillbirth. Complications increase further with triplets and beyond. To the mother, risks in carrying multiples include pregnancy-induced hypertension, postpartum hemorrhage, prolonged bed rest and diabetes.

While transferring two embryos—which if both survive would result in twins—is still the norm in IVF procedures in the U.S., more reproductive endocrinologists are promoting the health benefits of single-embryo transfers. (Indeed, experts say that, once the data for years after 2010 becomes public, it will likely show a decrease in the rate of multiples, since in recent years more women have opted to transfer just one embryo per cycle.)

There’s a dearth of long-term studies on the health of children born through IVF in the U.S. For one, it’s harder to track babies in this country than it is in countries that fund fertility treatments as part of a national health system. A Swedish study last year found a small but statistically significant increased risk of mental disability in babies born through IVF. A paper published in the British Medical Journal early this year says otherwise healthy children conceived through IVF may have higher blood pressure, body fat distribution and glucose levels, and poorer blood vessel function than children conceived naturally.

Yet an Australian study this year looked at the health of 547 young adults ages 18 and 29 born through IVF and found their health compared well with those conceived naturally. That study’s authors say they plan to invite the group for further follow up to assess their fertility when they begin building families of their own.

A discussion of the risks and unknowns associated with assisted reproduction should be an important part of any doctor-patient discussion, says Stillman of Shady Grove, and any patient who feels her concerns are being brushed aside should find another doctor.

6. Where you live may determine how this goes

Certain states mandate that some health plans cover some infertility treatments. Resolve: the National Infertility Association, an advocacy group for patients seeking such treatments, has an interactive map on its website that ranks states according to a “fertility scorecard” that factors in insurance mandates, and the prevalence of support groups and fertility specialists.

Maryland, one of five states that scores an “A,” requires certain health plans to cover three IVF cycles, with a lifetime maximum of $100,000 (though many companies’ health plans are exempt from the requirement). On the other end of the spectrum, Alaska, Wyoming and New Hampshire scored an F because they have no insurance mandates and very few fertility specialists and support groups.

State differences don’t end with insurance coverage. New York is one of several states that prohibit compensated gestational carrier arrangements—in other words, it’s illegal in these states to pay another woman to carry your baby—so New Yorkers seeking a paid surrogacy agreement must travel across state lines to Connecticut or another state that allows the practice. (So-called compassionate surrogacy, where a woman offers to carry another’s baby without compensation, is generally allowed nationwide.)

What’s more, infertility advocates and doctors fear that “personhood” legislation proposed in some states will affect IVF treatments. These proposed laws say that life begins at the moment of conception, and if enacted they would grant rights to embryos. While many of these initiatives are intended to curb abortion, their passage would raise many questions about the legality of IVF and could complicate doctors’ ability to give patients the best treatment, advocates say. “That would be devastating to millions of couples, even if it’s unintended,” says Stillman of Shady Grove.

7. Seek out support

During two unsuccessful attempts at intrauterine insemination and three at IVF several years ago, Cynthia Lear found herself withdrawing from friends and family. “The stress that goes along with artificial means to conceive is horrendous,” says Lear, now 42 and a corporate training manager in Newport News, Va. The strain broke her marriage apart, she says. “For many couples, this is a real crisis,” says Linda D. Applegarth, director of psychological services at the Ronald O. Perelman and Claudia Cohen Center.
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An embryologist uses a microscope to view an embryo.AP

There was no infertility support group in Lear’s area, and it took her a while to find a therapist who could help with a diagnosis of post-traumatic stress disorder following the failed treatments and the breakup of her marriage. Her fertility doctor, whom she liked, never suggested counseling or made a referral.

While clinicians may not be knowledgeable about them, however, resources for support do exist. The website of Resolve has a state-by-state breakdown of both peer-led and professional-led support groups .

At a minimum, clinics should let couples know the support services available in the region, even if patients don’t ask for them, experts say. “You hide all this stuff because you don’t want to give up,” Lear says.

She successfully worked through her post-traumatic stress disorder and got pregnant unexpectedly in a new relationship. Her daughter is now almost 4 years old. “It can be a great learning experience,” Lear says of her efforts to conceive, “but it might not work out how you expected.”

8. Good luck understanding our ‘success rates’

Congress requires the Centers for Disease Control and Prevention to publish an annual report on the success rates of fertility clinics offering assisted reproductive technology. But the information is usually presented in clinical language, and absent from this voluminous data are the answers to the questions that most women want answered: What is my individual likelihood of getting pregnant, and how many cycles will it take?

Some advocates argue that “success” rates should instead be framed as “failure” rates to give women a true sense of the odds they face. For example, national data collected by the Society for Assisted Reproductive Technology suggests that, among women ages 41 to 42 undergoing IVF with their own eggs, 11.2% to 12.4% of the cycles resulted in a live birth. The data would have a different impact if it said the same thing in a different way: That cycles for this cohort have almost a 9 in 10 chance of failing.

Many women are under the impression that IVF works more often than not—after all, it’s a highly sophisticated technology. Yet even among women under 35, less than a 50% of the cycles succeed. “The fact that we did not succeed was devastating,” says Pamela Mahoney Tsigdinos, a writer and the author of the book, “Silent Sorority,” a memoir about fertility treatments. “The expectation was that the doctors have this all figured out.”

The data most clinics report, while detailed, is “primarily a professional tool” for the industry, acknowledges Sean Tipton, spokesman for the Society for Assisted Reproductive Technology. (The CDC data is similar.) The data reflects how clinics think about their processes, not necessarily how infertile couples think about their chances of success. The society is working on a free, online patient predictor model that will give patients a better sense of their probability of success, says Dr. Charles C. Coddington III, a professor of obstetrics and gynecology at the Mayo Medical School in Rochester, Minn. and president of the society.

9. Maybe it’s time to stop treatment

For Tsigdinos, the last straw came when, as part of yet another cycle of IVF, she was asked to undergo a mammogram—on her 40th birthday. After trying to conceive for 10 years, both naturally and with various assisted technologies, she and her husband decided they’d reached the end of the line and canceled what would have been their fourth cycle.

Nurses, aides and doctors need to have an awareness of the impact of bedside manner and patient health, Dr. James Merlino, chief experience officer at the Cleveland Clinic, says. He joins the News Hub with Sara Murray.

Much of the time, the decision to stop the physically, emotionally and financially taxing fertility treatments lies with the patient. “Clinics will try to upsell you,” Tsigdinos says, suggesting the possibility of donor eggs or a gestational surrogate when other treatments fail. Many clinics appear more concerned with keep couples in treatment—in other words, selling them on additional services—than in helping them understand the potential risks of continuing, Tsigdinos says.

Giving a patient a realistic sense of her odds is a doctor’s “greatest skill and greatest obligation,” says Toth of Mass General. “Since we can never guarantee an outcome, we should at least take good care of them.” Patients should ask their doctor how their experience compares with that of patients with similar profiles, and consider stopping if their results are worse than average, Toth suggests. And a trusting doctor-patient relationship should include an assessment of the emotional reserves remaining after each cycle, he says.

To be sure, this persistence can stem from a genuine desire among doctors to help patients achieve their dream of becoming parents. And sometimes the last cycle will succeed, despite all odds. Yet the truth remains that doctors make more money when women undergo more treatments.

Patients are best served by a frank assessment of their chances, the risks involved, and support if they decide to stop treatment, infertility advocates say. Tsigdinos says she never got so much as a follow-up phone call from her fertility clinic after she canceled her fourth cycle, a common courtesy she says was extended to her husband after routine shoulder surgery.

10. Preserving your fertility? Don’t bank on it

Women facing health issues—such as cancer treatments—that could affect their later fertility have long relied on freezing their eggs. In late 2012, the American Society for Reproductive Medicine lifted the “experimental” label from egg freezing techniques, opening up the use of the procedure for more women who want to wait to have children because they haven’t met the right partner or because they can’t afford to take a career break. What’s more, the technology of egg freezing has advanced greatly in the last couple of years with a flash-freezing method that improves an egg’s chances of surviving being frozen then later thawed for use in IVF.

That’s the good news. The bad news is “you can’t make the eggs younger,” says Josephine Johnston, research scholar at the Hastings Center, a nonpartisan research institution dedicated to bioethics, who conducts research on the ethics of fertility treatments. Women who freeze their eggs in their late 30s or early 40s will likely have fewer resulting viable embryos—once those eggs are thawed and mixed with sperm—than those who freeze their eggs as younger women, as a result of age-related diminished egg quality. Citing this and other issues, the American Society for Reproductive Medicine cautioned that they “are not yet ready to endorse widespread use of egg freezing for elective use.”

The quality of both egg and sperm decline with age, increasing the chances of abnormalities. For example, older maternal age has been linked to an increased risk of Down syndrome, while older paternal age has been linked to increased risk of autism. And these are among the pregnancies that result in a live birth—older women are also more susceptible to miscarriage.

“Women have to be cautious that having eggs frozen is not an insurance policy,” says Rosenwaks of Cornell. It would be best if society evolved with technology, with workplaces and schools of higher education making it easier for women to take a break in their 20s and early 30s, Johnston says—that would alleviate the pressure women feel to get established in their careers before starting a family.