Is health insurance coverage of infertility treatments an essential benefit to help people manage a medical disorder? Or is it a life-enhancing benefit, nice to have perhaps but not essential because it doesn’t sustain a person’s life?

A panel of experts convened by the Institute of Medicine is wrestling with this and other issues raised by the new health-care law. Members are trying to determine what essential health benefits should be included in polices available through the state-based insurance exchanges where individuals and small businesses may buy coverage starting in 2014. The IOM recommendations will go to the Department of Health and Human Services.

Infertility coverage today is generally pretty skimpy. Only about 20 percent of employers cover assisted reproductive therapies such as in vitro fertilization, according to a 2006 survey of 931 employers conducted for Resolve: The National Infertility Association. A majority of employers that didn’t offer coverage cited cost concerns, but 91 percent of those that did offer it said it hadn’t significantly increased their costs.

About one in eight couples of childbearing age is infertile, according to data from the Centers for Disease Control and Prevention. Insurance coverage, when it exists, varies widely, experts say. Roughly 80 percent of patients who visit Shady Grove Fertility Center, with 13 offices in Maryland, the District and Virginia, have coverage for the initial consultation and tests to diagnose infertility, says Janice Koch, the director of patient financial services.

But coverage for treatment runs the gamut at Shady Grove and other clinics. Some plans cover fertility drugs to stimulate ovulation or intrauterine insemination (IUI, often called artificial insemination) but don’t cover pricier assisted reproductive technology (ART) procedures, such as in vitro fertilization. Even if a plan covers IVF, it may cover only a certain number of cycles, or attempts, or cap the dollar amount it will pay for services.

Fifteen states, including Maryland, require that insurance plans cover infertility treatments, according to research compiled by Georgetown University’s Health Policy Institute. But mandates often promise more than they deliver, says Sean Tipton, a spokesman for the American Society for Reproductive Medicine, noting that small employers are generally exempt from such rules, as are large employers that self-insure, or pay employee health claims directly.

Other wrinkles can also trip up would-be parents. For example, Maryland’s law requires coverage of in vitro fertilization but stipulates that it be performed with the “spouse’s sperm,” a tough hurdle for same-sex couples or those with male infertility problems.

It was a hurdle that Tiffany and Dainian Smith couldn’t overcome. Dainian’s employer covers up to three in vitro fertilization attempts, which typically cost about $12,000 each. But that was no help to the Baltimore couple, because Dainian, 38, has a chromosomal abnormality that makes him unable to produce sperm. “The idea that we were locked out of coverage because of something we had no control over, that was the most frustrating,” says Tiffany, 34. After paying roughly $7,000 out-of-pocket for four unsuccessful insemination attempts using donor sperm, in 2009 the Smiths decided to adopt.

Success rates for infertility treatments vary widely, depending on a woman’s age and the specific fertility problems involved, among other issues. According to the CDC, women under age 35 who complete one ART cycle have a 40 percent chance of giving birth. By the time a woman reaches 43 or 44, the figure drops to 5 percent.

Leigh and Brian Elliott went through five rounds of IVF over a three-year period before finally giving birth to their daughter, Kiera, in 2006. Fortunately for the Barrington, N.H., couple, the utility company where she worked covered up to six IVF cycles per live birth. She estimates they spent about $400 out-of-pocket per IVF round, mostly for co-payments for medications.

Shannon and Brandon Vetrovsky, both 31, were luckier in the IVF lottery: They conceived a child on their first IVF attempt two years ago. But the Beatrice, Neb., couple has no infertility coverage under their policy through Brandon’s job. They paid the $15,000 tab on their own, tapping $10,000 in savings and taking out a $5,000 loan. “We’d love nothing more than to have a second child,” says Shannon. “However, the cost is a burden we cannot take on at this time.”

It’s too soon to know how the coverage issue will be resolved in the health insurance exchanges. But it’s worth noting that when employers in the Resolve survey were asked why they covered infertility benefits, 65 percent said it was because employees asked them to. “We were shocked” that it was so easy to get coverage added, says Barbara Collura, executive director of the infertility group. “They [the employers] probably didn’t think it was important.”

Word to the infertile: If coverage is a priority for you, make your wishes known.