Even when IVF is covered by insurance, high bills, surprises and hassles abound

After years of trying to have a baby without success, Brenna Kaminski and her husband, Joshua Pritt, decided to try in vitro fertilization.

Only 15 states require insurance to cover fertility treatments, and Florida, where Kaminski and Pritt live, isn't one of them. Still, the couple's insurance, from Pritt's job at an energy company, did — putting them among the fortunate minority of Americans whose insurance plan covers the pricey fertility procedure. Kaminski and Pritt gamed out what their share of the cost would be for one round of IVF: $2,700, the out-of-pocket maximum under their policy.

Instead, after many twists and turns with two specialty practices, they paid more than $15,000 for two rounds of IVF, including all medicines. And, as is true for the majority of the procedures nationally (success rates vary from 12% to 49% depending on a patient's age), neither round resulted in a viable pregnancy. "This whole thing has been a nightmare," said Kaminski, 37, who does freelance marketing and writing. "The stress has been unbelievable."

About 1 in 5 women have trouble getting pregnant, and IVF has become a common path to parenthood for many. But even as demand grows, insurance coverage remains limited. About 27% of companies with 500 or more employees covered IVF in 2020, up from about 24% in 2015, according to Mercer, a consulting firm.

"Infertility is a disease and should be treated as such, and insurance coverage should reflect that," said Dr. Kara Goldman, associate professor of obstetrics and gynecology at Northwestern University. "Coverage is often incomplete because people too often don't see infertility as equal to other diseases."

Kaminski's insurer, Blue Cross and Blue Shield of Illinois, offered a list of in-network IVF providers near the couple's home in Melbourne, Fla. For in-network care, the couple would be responsible for 20% of the costs. For out-of-network care, they would have to pay 40%.

The first in-network specialists they tried, in spring 2020, had an office nearby, in Viera, Fla. But after seeing the doctor, they learned they had to travel 3½ hours to Miami, where the physician performed the IVF procedures over three separate visits.

The couple paid about $2,700 out-of-pocket for the medicines alone. They also paid an additional $500 because the fertility clinic required them to use an out-of-network lab for blood tests.

In November 2020, the couple decided to try again, with another fertility medical group listed in their Blue Cross provider network. It was in Winter Park, Fla., about an hour's drive from their home.

Kaminski visited with doctors at the Center for Reproductive Medicine, and they scheduled her to begin the procedure at their facility in the same building. But that facility, the Orlando Avenue Surgery Center, was not in the Blue Cross network.

Kaminski said the surgery center told her that it was likely to be added to the Blue Cross network soon, and she appealed to the insurer for a waiver to have the center's care considered in-network. She was told by customer service agents for the insurer that she'd get the waiver, but she didn't get that confirmed in writing. Still, she went through with the procedure.

It took place in 2021, and Kaminski again expected to pay about $2,700 out-of-pocket for the care from the IVF specialist in Winter Park. She knew she would face separate out-of-pocket costs for the medications used in IVF.

But because her care was deemed out of network by Blue Cross, Kaminski said, she was billed more than $6,000 by the clinic and its surgery center. That was in addition to nearly $4,000 in out-of-pocket drug costs.

Kaminski has spent nearly a year trying to get Blue Cross to treat her second round of IVF as in-network. She said it's unfair for Blue Cross to have listed the Winter Park fertility clinic in its provider network if its doctors performed the actual IVF procedure in an out-of-network surgery center. The surgery center is owned by some of the clinic's doctors.

In a statement to KHN, the Center for Reproductive Medicine's executive director, Stephen Brown, wouldn't address Kaminski's case specifically even though she had given permission for him to discuss it. In an email, Brown wrote that the clinic was transparent with all its patients that its surgery center was not in Blue Cross' network.

Brown said low reimbursement rates aren't what has kept the surgery center out of the Blue Cross network. Instead, he said, the insurer didn't act quickly, taking more than four years to add the surgery center to its provider network. "The reason for not initially being in network with BCBS was based solely on the lack of response from BCBS," Brown said.

Before any treatment is done, Brown said, the clinic gives its patients estimates of the costs of their procedures based on their insurance. Kaminski received an estimate that said she could expect to pay $3,000 to $4,000 just for the transfer of the embryos grown in the lab into her uterus.

In March 2021 — about a month after Kaminski completed her treatment — the Winter Park surgery center was added to Blue Cross' provider network.

In February 2022, KHN reached out to the provider and insurer. Within two weeks, Blue Cross told the couple it would consider all the services they received at the surgery center in-network, and it paid all its bills in full. Kaminski and Pritt no longer owed anything to the center. Blue Cross had initially said it would pay a nominal portion of disputed bills that totaled $21,450 for care in 2020 and 2021 because the surgery center was out of network.

Blue Cross also confirmed to the couple that in January 2021 it had granted them a waiver so all the surgery center's bills could be considered in-network. Mistakenly, the waiver hadn't been applied, so they faced the high out-of-network charges.

"It's finally making logical sense," Pritt said after learning that their billing dispute was resolved. "It's good to know we won't be getting any more bills."

After Blue Cross decided to cover the IVF in Winter Park, the couple received $1,600 back from Orlando Avenue Surgery Center.

John Simley, a spokesperson for Blue Cross and Blue Shield of Illinois, said: "With non-routine waivers, mistakes can happen. The good news is they generally get fixed quickly."

In this case, though, it took nearly a year.

Experts say Kaminski's case shows that even when people have coverage for IVF, they can be left with huge bills. Also, insurers' lists of in-network providers are not always accurate. "It feels like a bait-and-switch," said Sabrina Corlette, a research professor and co-director of the Center on Health Insurance Reforms at Georgetown University.

A new federal insurance law, the No Surprises Act, went into effect in January 2022. It says patients don't have to pay more than the in-network cost sharing amount if the insurer's provider directory gave inaccurate information.

Whether the law would apply in cases such as Kaminski and Pritt's is unclear. Even if it did, the law took effect too late for them.

Betsy Campbell, chief engagement officer at Resolve: The National Infertility Association, a patient advocacy organization, said Kaminski's case shows that insurance coverage isn't always designed around the patient. "Infertility treatment is a series of very complex procedures involving lab work, surgery, anesthesia, and it needs to be provided in a way that the insurance system has not always respected," she said.

Too often, insurance makes a couple jump through hoops to get the care they need, Campbell said. "Everyone should have the right to build a family, and it should not matter what employer you work for, or what state you live in, or how big a check you can write," Campbell said.

Kaminski and Pritt aren't giving up on having children. For now, they're pursuing other fertility treatments that aren't IVF.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. It is an editorially independent operating program of KFF (Kaiser Family Foundation).

Bill of the Month is a crowdsourced investigation by KHN and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

Copyright 2022 Kaiser Health News. To see more, visit Kaiser Health News.