Katie Beall was diagnosed with breast cancer on March 1, 2022. Two days later, doctors told her the chemotherapy she needed would make her infertile. The next day, she started looking into how she could freeze her eggs, which would give her the option of becoming a mother in the future.
Twenty-three days after her cancer diagnosis, the 36-year-old Helena resident said, she had put $7,579 on three credit cards to pay for her out-of-pocket fertility preservation costs.
Her insurance didn't cover it. In Montana, fertility preservation for newly diagnosed cancer patients whose pending treatment could cause infertility isn't required to be covered by insurance.
On March 15, 2023, Beall finished her chemotherapy and began to lobby Montana's legislature to change that.
Beall has taken the helm in advocating for a bill that would require insurance to cover the initial costs of fertility preservation for people diagnosed with cancer. That includes requiring coverage of appointments with a reproductive endocrinologist and the retrieval of sperm, eggs, or embryos, but not their storage or procedures like in vitro fertilization.
Amid a chaotic end to Montana's legislative session, the bill, which has already been approved by the state Senate, is close to passing its final hurdle. The legislature is scheduled to end its 90-day session on May 5, which means the bill has just a few days before the House of Representatives will need to give it final approval before it heads to the governor's desk.
The bill has bipartisan support, but Beall is worried about how lawmakers will respond to what she says is an inaccurate estimate of what it will cost. Beall said the bill's fiscal note prepared by state agencies contains a handful of errors. For example, Beall said, it assumes men's and women's fertility preservation costs the same. But the cost for sperm banking is around $700, while women can pay between $7,000 and $11,000, according to an estimate by Billings Clinic. The fiscal note also includes the cost of eight years of storage, which is not included in the bill, and budgets for 2.1 female fertility cycles.
According to Stacy Shomento, one of two reproductive endocrinologists in Montana, who practices at Billings Clinic, there has not been a cancer patient in their program who has undergone two rounds of fertility medication before starting cancer treatment since 2011.
Estimates from Blue Cross and Blue Shield of Montana place a $75,000-a-year price on the bill for the insurance company. Spokesperson John Doran said the company didn't include costs for men in its estimation since they were "negligible," and estimated that seven to 10 of their female members would use the coverage annually.
The bill would cost BCBS members about 12 cents extra a month, Doran said. Montana's Department of Public Health and Human Services estimated a similar increase for Medicaid members.
The state health department estimated that a total of between 18 and 39 men and women each year would participate if the bill passes.
Insurance covers fertility preservation in 13 states.
When Beall started researching legislation, she called Democratic state Sen. Pat Flowers to ask if he thought a bill could succeed this session, and he said: "Let's do it."
Flowers' wife was diagnosed with breast cancer when their two children were young. At an emotional hearing on April 14, Flowers said they were considering a third child but fertility preservation wasn't much of a discussion, and, if it had been, it wouldn't have been a financial option for a young family living paycheck to paycheck.
"I know we could not have afforded to spend $7,500 to make that happen," Flowers said.
Cancer takes a lot from you, Beall said. But what fertility preservation offered was a sense of hope that she still had control over her future.
Beall and her boyfriend want to have kids. She was able to finance the out-of-pocket expenses for fertility preservation but acknowledged that not all young cancer patients can afford to do so, especially within such a short time frame.
Once a patient is diagnosed, oncologists want to start chemotherapy right away, and fertility preservation must happen as quickly as possible. Missing one payment can leave a patient's timeline "screwed up," Beall said, and there's generally no payment plan.
"If you can't finance this out-of-pocket, it's too late for you, and you'll have to go into whatever your next treatment is," Beall said. "You're going to know you're going to be infertile and there was an option but you just couldn't finance it, so your idea of a biological family is done."
It was at one of the bill's legislative hearings that Beall, for the first time, met another woman who had gone through the same thing she had.
Carley VonHeeder was diagnosed with Hodgkin lymphoma when she was 24. VonHeeder, now 25, said she was so "dissociated" through the process of starting cancer treatment and fertility preservation that she wasn't processing it.
Meeting Beall was the first time she felt someone could appreciate all she'd gone through, VonHeeder said, and it made her feel more empowered each time she returned to the Capitol to testify.
"It filled a hole I didn't even know I had," VonHeeder said.
Aimee Grmoljez, a lobbyist for Billings Clinic, said in a hearing on the bill that fertility preservation is within the standard of care — doctors are required to tell patients about the option — yet it's not covered by insurance.
Grmoljez said she couldn't think of another procedure that falls along the same lines.
Shomento, Beall's reproductive endocrinologist, said patients can see a specialist in Bozeman — where Shomento is — or in Billings, where the state's only other specialist practices.
Shomento said most of her job is helping patients with general infertility, something she said about 1 in 6 or 8 couples deal with.
"It's not going to affect an everyday person very much," Shomento said. "But it's going to affect the cancer person in a huge way."
Becky Franks, CEO of Cancer Support Community Montana, said people generally think of cancer as an "old person's disease."
Franks said that 20 or 30 years ago the focus of cancer treatment was how to keep the patient alive. Now, Franks said, that has shifted to getting the patient "to truly live, and not just keep breathing."
Blake Underriner was diagnosed with cancer at 14, which is also when he learned the treatment would make him infertile. His mom took him to an appointment to bank his sperm while he came to grips with starting chemotherapy.
Underriner, who lives in Billings, said he preserved the decision to have kids later in life when he preserved his sperm. Underriner married his wife in 2020 and now, at age 37, he has an 8-month-old daughter, Kennedy.
"She's just so fun," Underriner said. "She's turning over in her crib when it's naptime instead of taking a nap. She's almost crawling. She's just a bundle of joy."
Keely Larson is the KFF Health News fellow for the UM Legislative News Service, a partnership of the University of Montana School of Journalism, the Montana Newspaper Association, and KFF Health News. Larson is a graduate student in environmental and natural resources journalism at the University of Montana.
This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.