Jody and Greg Miller of Potomac, Md., say they were fortunate to give birth to triplets in 2000, after spending $22,000 on in vitro fertilization because their insurance company didn't cover fertility treatments.
But when their insurance premiums were costing them one-third of their net income as self-employed workers, they applied to Care First -- Blue Cross/Blue Shield hoping to get a more reasonable policy for the family.
Instead they received a letter accepting their three children, but the Millers were rejected for having two pre-existing conditions: "infertility" and "spousal infertility."
"This was very alarming and extremely concerning," said Jody Miller, 42, who testified before Congress last year during the health care debate. "I have also never heard of spousal infertility. Is 'spousal cancer' or 'spousal HIV' terms that are used?"
Couples like the Millers -- she is an exercise physiologist and he owns a carpentry business -- who are relegated to high-risk pools, are excited that they might soon be able to buy individual insurance policies at reasonable rates.
Though couples can't be turned down for health insurance because of infertility, that doesn't necessarily mean they'll get coverage for fertility treatments.
For the 7.3 million couples in the U.S. who struggle with infertility, the new health care bill carries no mandates to cover the soaring cost of assisted reproduction procedures like IVF and egg donation.
"The law itself is fairly silent on what exact benefits have to be offered -- that's yet to be determined," said Sean Tipton, spokesman for the American Society for Reproductive Medicine (ASRM).
"I am not terribly optimistic that this country is suddenly going to treat infertility appropriately," he said. "We have a crumby history."
The average cost, according to ASRM, is about $12,400 a cycle, but "accessory procedures" -- such as sperm injection and hatching the egg -- can up the price tag. The cost of a donor egg can exceed $5,000.
Infertility -- defined as the inability to conceive after one year of unprotected intercourse (six months if the woman is over age 35) or the inability to carry a pregnancy to live birth --- affects an estimated 1 in 8 couples in the United States, according to RESOLVE, the National Infertility Association.
Of the 62 million women of reproductive age in 2002, about 1.2 million, or 2 percent, had an infertility-related medical appointment within the previous year, and 10 percent had an infertility-related medical visit at some point in the past, according to the Centers for Disease Control.
In vitro fertilization -- the most common type of assisted reproductive technology -- was pioneered in 1978 by doctors in the United Kingdom, and has been used in the United States since 1981.
In 2008, 361 U.S. clinics reported data to the Society for Assisted Reproductive Technology on 140,795 treatment cycles leading to the birth of 56,790 babies. The success rates for healthy women under 35 are as high as 50 percent.
"Jody's story in startling," said Barbara Collura, executive director of RESOLVE, who has heard increasing complaints from couples worry about the financial burden of fertility treatments.
Josie, a 42-year-old from Virginia Beach, Va., and her husband have visited several clinics to inquire about IVF. Some charge as much as $17,000 for just one try.
"In vitro is our only option but we cannot afford this and our insurance doesn't cover it," said Josie, who didn't want to share her last name.
"We also have tried to purchase health insurance on our own but couldn't find one to cover fertility," she said. "Financing such a dream is impossible as both my husband and I don't have the best credit. Our dream is fading."
Susan Mazzoni, 42, of Bala Cynwyd, Penn., paid more than $50,000 for her fertility treatments, conceiving within 15 months. Her insurance company covered ultrasounds and blood tests, but all else was paid out of pocket.
Mazzoni worked as a health care project manager and her husband Claudio owned his own plumbing business, but the couple had to take out a home equity line of credit to pay for inseminations and IVF.
"My son is 4 years old and we are still paying for the treatment to have him," she said.
In September 2009, RESOLVE conducted an online survey with over 400 respondents, 50 percent of whom were in medical treatment at the time they took the survey. About 37 percent said they either had to slow down or stop their treatment due to the economy; 11 percent were considering going out of the country to find less-expensive treatment; and 40 percent needed help to pay for treatment in order to continue.
When Keely Webb, 35, learned that her only possibility for getting pregnant would be through in-vitro fertilization, she said it was a "devastating blow."
But she lived in Maryland then, where insurance companies are required to cover up to three attempts at IVF.
"This mandate has been the biggest blessing in our lives," said Webb, who gave birth to a daughter six years ago and now works for the federal government.
Now, because her husband is on active duty with the military, which does not provide fertility benefits, the couple will adopt an American foster child.
Only 14 states, including Maryland, have minimum mandates regarding fertility procedures for insurance companies.
In New Jersey, IVF is allowed, but not for women older than 46. Hawaii limits women to one try, but in Massachusetts, there are no limits in the number of treatment cycles. In Arkansas, payments are capped at $15,000.
But, those so-called mandates are deceiving, according to Resolve. Massachusetts, for example, has the oldest and strongest mandate, but large companies with self-insured plans and small employers are exempt.
"In some states, it's not even a full mandate, and in some there is really no coverage at all," said Collura. "It's a relatively large number of people who do not have access to care. As high as 50 percent of those diagnosed with infertility would benefit from medical intervention and are not getting the care that they need."
In states like California and New York, insurance companies specifically don't have to offer coverage.
According to America's Health Insurance Plans (AHIP)., employers, not insurance companies determine who gets benefits. They can purchase a package of services or specific diagnostic procedures or treatments.
"Employers have been telling us that they don't want to pay more for their insurance," said AHIP spokesman Susan Pisano. "If state laws makes you cover a, b, c, d, maybe you can't afford to do that. We have been traditionally opposed to mandated benefits because what it ends up doing is raising the cost of coverage. In some cases, access to services is out of reach for employers."
"Relative to the rest of the world of medicine, infertility care is not as expensive as you think, primarily because it is outpatient," said Paulson, who is professor of obstetrics and gynecology at University of Southern California Keck School of Medicine. "Because people pay cash for it, there are market forces that have kept prices down."
"An infertility work up can be completed for about $1,000," he said. "Each IVF cycle is about $12,000 or $13,000. A few visits to the emergency room can run higher than that."
"Really, it's a question of allocation of resources," he said. 'If my fertility care is going to cost $20,000, that's a lot of money, but it's the cost of an Accord. We see couples who drive the old car for another few years and postpone the addition on the house and put up with the old washing machine."
Employers also often provide tax-deductible flexible spending accounts that can be used to pay for pregnancy and ovulation tests.
In the RESOLVE survey, a surprising 38 percent of respondents said they "did not know" about adoption benefits that are provided by many companies, she said.
"People need to find out what family building benefits they even have in order to make sound and informed decisions," said RESOLVE's Collura.
Collura is pushing for a national action plan to address fertility and reproductive issues. On April 28, she will brief Congressional staff during National Fertility Awareness Week, accompanied by Rep. Debbie Wasserman Schultz, D-Fla., and Sen. Kirsten Gillibrand, D-N.Y.
In the meantime, RESOLVE hopes to influence the Department of Housing and Human Services as it defines the "essential health benefits package," which will serve as a guideline for new insurance exchanges that will be available in 2014, when all Americans will be required to have coverage.
"We have a couple of opportunities, but there are a lot of unknowns," said Collura. "We are going to do everything we can to make it happen but it's anyone's guess how it will play out."