Infertility.

It is hotly debated in boardrooms, courtrooms, and bedrooms. It's a condition on which some couples spend tens of thousands of dollars, in pursuit of medical miracles. And many couples don't worry about it until it's simply too late.

One of every six couples of childbearing age has experienced the deeply personal heartbreak of infertility. “The number is stunning,” says Dot Shigemura. “When we applied that statistic to the data in Hawai`i, we determined that 20,000 couples in our state, at any given time, are affected.”

As treasurer of Resolve, the national infertility advocacy and support group, and president of Resolve Hawaii, Shigemura says that many find that number unbelievable. “Sometimes when we issue press releases, we cut that number in half, because it's so staggering.”

Miracles and Millions

Is parenthood a right or a privilege? Though the US Supreme court recognizes reproduction as a human imperative, fewer than 1% of the couples who need treatment actually receive it. In 1998, the Court ruled that reproduction is a “major life activity”, and that people with physical or mental impairment that substantially limits reproduction are protected from discrimination.

“Infertility is a disease of the reproductive system, not a lifestyle choice,” Dot Shigemura says firmly. “Almost everybody knows someone who has been affected by it. But because it is such a private, life-altering disease, many people will not talk about it.”

“Infertility has its own ICD code in the American Medical Association's code book, so the AMA identifies it as a disease,” comments Dr. Philip McNamee, co-founder of Hawai`i's Pacific In Vitro Fertilization Institute.

McNamee was a major proponent of the 1987 law that requires certain Hawai`i insurers to to provide a one-time benefit for outpatient costs resulting from in vitro fertilization (IVF). “It's been my passion for 17 years. Many Chamber of Commerce members have likened it to plastic surgery, as something that's not an essential aspect of medicine. I think that family building is very, very important.”

GLOSSARY Ovulation induction: The least invasive infertility treatment, clomiphene citrates (like Clomid and Serophene) are synthetic drugs used to ensure ovulation during a treatment cycle. Cost: $30-$200 per treatment cycle Gonadotropins: Daily injections promote maturation of ovarian follicles and the eggs they contain. Amount needed varies with a woman's age. Cost: $40-70 per ampule; $1,000-$4,600 per cycle. ICSI (Intra Cytoplasmic Sperm Injection): In a relatively new treatment, a single sperm is injected directly into the egg to fertilize it. The solution to most cases of male infertility. Cost: $1,100-$2,000 Donor Egg: For women unable to produce their own eggs. An oocyte from a donor is fertilized, and the resulting embryo is transferred to the woman's uterus. Cost: $3,000-$15,000 (donor's stipend only) Donor Sperm: The Hawaii Sperm Bank, run by OB/GYN Rick Williams, is the only place of its kind here. At $50 per vial, sperm collected from a dozen local donors is available to patients of the Women's Clinic, also run by Williams. Donors include a hapa-haole/Hawaiian who is "very successful at getting women pregnant". Patients at other local clinics must obtain sperm from mainland banks like California Cryogenics, at $300-400/vial, plus $200 shipping. In vitro fertilization (IVF): An advanced reproductive technique in a woman's eggs are fertilized with sperm outside the body, in a test tube or culture dish. The resulting embryos are then transferred to the woman's uterus. IVFs performed with donor eggs or sperm are not covered by Hawaii's insurance mandate. Cost: $8,000-$15,000 (includes office visits, injection training, baseline FSH test, estrogen and ultrasound monitoring, hospital retrieval costs, lab expenses and physician services) SOURCES: Pacific IVF, Hawaii Center for Reproductive Medicine and Surgery, Kaiser Permanente, Pacific Connection Fertility Services, Hawaii Sperm Bank, The Egg Donor Program of Los Angeles, and Fertility Alternatives. Costs vary with patient needs, and do not reflect insurance coverage, which varies with carrier and treatment.

A woman must meet several conditions to be eligible for coverage under the mandate. She or her spouse must have at least a five-year history of infertility; she must have unsuccessfully attempted to sustain a pregnancy through other treatments covered by insurance; and her infertility must be associated with endometriosis, exposure to DES, blocked or surgically removed fallopian tubes, and/or her spouse's male factor infertility.

When the mandate was first introduced in the Legislature 15 years ago, the estimate from HMSA for the cost of coverage was outrageously high. “But it only turned out to be about $1 million,” remembers McNamee. On the mainland, thirteen other states have passed similar laws; a half-dozen more have riders requiring coverage to be offered.

Though infertility coverage adds just a couple of dollars to the annual cost of each healthcare policy, the cost of treatment without it can devastate a couple's finances. “For the small percentage of couples who go all the way to IVF,” Shigemura explains, “that cost can be anywhere from $8,000-$15,000.”

Moved by A Mandate

For Britain Washburn Bozanic, the mandate certainly made a difference. In 1996, Bozanic and her husband Nick, who lived in Michigan at the time, began trying to conceive. “Nick was tested after six months of trying, because he's older and hadn't had children in his previous marriage. We got a diagnosis of male factor infertility. We proceeded to donor inseminations. After those were unsuccessful, they did a hysterosalpingogram on me.”

The 23-year-old Michigan woman was told she had blocked fallopian tubes. In 1999, Brit underwent her first IVF cycle, which resulted in miscarriage. Her physicians tried a frozen embryo transfer, also unsuccessful. Both were done with Nick's sperm, extracted through ICSI. “In the process, they determined his sperm count wasn't so bad. It had been a miscalculation the first time.”

In an attempt to repair Brit's fallopian tubes, doctors performed a laparoscopy. “During that procedure, they discovered my tubes weren't blocked!” After a year and a half of treatment, the Bozanics were given a clean bill of health. Between tests, diagnoses, donor cycles, IVF and a frozen embryo transfer, they had already spent over $15,000, most of it charged to credit cards, and they were back at square one.

Then, Nick was offered a job at Punahou School. Friends who were aware of the Bozanics' struggle with infertility told them about Hawai`i's insurance mandate. “We hadn't been considering moving; my husband had been teaching at Interlochen for 20 years,” says Brit. “But in Michigan, nothing is covered with respect to fertility treatment. We had certainly exhausted our resources.”

After moving to Hawaii, the Bozanics enrolled in HMSA's PPO plan, and began working with Dr. Kenneth Vu, then medical director at Pacific IVF. On Vu's recommendation, they tried an IUI procedure, which added $400 to their expenses. (Though HMSA provides coverage for IVF as directed by the infertility mandate, it covers none of the lesser infertility treatments.) IUI was unsuccessful, so they proceeded with an IVF cycle. Even with coverage, their out-of-pocket cost was over $2,000.

The Bozanics' son was born in November 2000. The happy ending gets happier: as this issue of Hawaii Business went to press in late November, Brit and Nick were awaiting the birth of their second child--conceived spontaneously, with only a wink from Mother Nature.

Time and Harsh Reality

Sometimes, the heartbreaking reality is that a woman has simply waited too long to start her family. “We believe our fertility belongs to us and will always be there when we choose to access it,” says Dr. Joyce Nakamura, chairman of OB/GYN at Kaiser Permanente. “This is not the case! Our fertility peaks at about 27, and it's downhill from there.”

As women age, the quality of the eggs they produce are simply not conducive even to natural conception. The chance that a woman will become pregnant spontaneously at 40 is probably less than 10%, Nakamura explains. “For infertile women who go through IVF at 44 or 45, it drops to less than 1%.”

Not surprisingly, professional women in their 40s, after taking care of their bodies with good diets, regular exercise, and clean living, sometimes don't even consider the possibility of infertility. “It's really a difficult conversation when someone at 46 comes to me and says, 'I'm ready to get started now!'” Nakamura says sadly. “That's happened to me at least three times in the past month: 45, 46, and yesterday, 47. I don't want to talk these women out of giving it their best try, but the chance they'll be successful is very small.”

Kenneth Vu, a reproductive endocrinologist who now runs the Hawaii Center for Reproductive Medicine and Surgery, concurs. “If you are 25 years old, you have a lot of time to waste. If you're 38, you don't have time. Shop around! Consult with a trained specialist, and do not waste time.”

“Even things that seem obvious, like second opinions, are really vital. Yet I think we hesitate because we put such complete faith in medical professionals,” Brit Bozanic says. “I would emphasize being your own consumer advocate, and making every effort to get as much information as you can, as quickly as you can.”

The bottom line, says Vu, is that precious fertile time should be saved. More than half his patients are over 38 years old. "I often see people who have been married for five or more years, [who] underwent the same treatments repeatedly without success. Cost isn't a major issue as much as the ovarian reserve, which diminishes as females gets older. You can have a million dollars but you cannot turn back the clock."