At 23, Erin Keith didn’t know if she wanted children, but she knew she wanted a choice.
So before embarking upon months of chemotherapy to treat Hodgkin lymphoma—treatments that could leave her sterile—the New Lenox, Ill., woman had her eggs frozen. She did it despite being unsure whether her insurance would cover the procedure.
“At 30, I don’t want to regret a decision I made at 23,” said Keith, now 24. She recently had her final treatment and will soon find out if the cancer is gone.
“I should be celebrating right now that I did my last treatment for chemotherapy, but right now I’m thinking am I going to owe $7,000 to $8,000?” she said. “I’ve got this looming bill over my head.”
State law requires insurers to cover infertility treatments, such as in vitro fertilization, for those who’ve tried and failed for a year to conceive. But insurers are not required to cover fertility preservation—freezing of eggs, sperm and embryos—for patients facing medical treatments that might leave them unable to have children. Some insurers cover the procedures but many don’t.
A bill under consideration in the Illinois legislature aims to change that—one in a string of such measures across the nation. Connecticut and Rhode Island passed bills last year requiring insurers to cover fertility preservation, and a similar bill is before Maryland’s governor.
In Illinois, about 5,800 people of reproductive age—ages 14 to 45—are diagnosed with cancer each year, according to the Illinois Department of Public Health, though not all those patients would need or want to freeze sperm, eggs or embryos.
Supporters of the Illinois measure say it’s necessary to ensure that patients with diseases such as cancer, lupus and sickle cell anemia get the coverage they need to have biological children. The bill would apply to most women, including those with Medicaid coverage.
But the bill is opposed by insurance industry groups and others concerned that the cost of coverage would be borne by all consumers. Sperm freezing can cost as little as a couple of hundred dollars while the process of preserving eggs and embryos can cost more than $10,000.
“Coverage mandates increase health insurance premiums and decrease choice for Illinois consumers,” said Whitney Barnes, a spokeswoman for the Illinois Department of Insurance, which opposes the bill.
Other opponents include Blue Cross and Blue Shield of Illinois, the state’s largest insurer, and America’s Health Insurance Plans, an insurance industry group.
The bill’s advocates say patients shouldn’t have to decide between financial ruin and their ability to have children.
Keith said she knew right away she’d want to freeze her eggs, but the question of insurance coverage made her hesitate. She’s still working with her insurer to see if it will cover any of the procedure. If it doesn’t, she probably will have to take out a loan to cover the expense.
“I’ve paid into this insurance for five years, and the one time I need it most they’re not willing to help me out,” Keith said. “This is a very necessary procedure.”
Miranda Gerowitz, 23, of Chicago, was also surprised when she learned that her insurance wouldn’t cover preserving her eggs after she was diagnosed with breast cancer.
Her fertility clinic gave her a discount on the procedure, charging her $3,000. Still, it was too much money for the hotel sales coordinator.
Her parents agreed to pay the $3,000, and she’ll pay an additional $500 a year to keep the eggs frozen. “I didn’t want to regret not doing it,” Gerowitz said.
But she knows that not everyone has that option.
Local fertility clinics say many of the patients they see choose not to freeze eggs or embryos because of the cost, and sometimes because they can’t delay cancer treatment long enough to do it.
The bill’s supporters argue that costs that can be prohibitive for individuals would be small when spread across large insurance pools.
In Maryland, an actuarial consulting firm estimated last year that costs would rise by 18 to 24 cents per member per month for group plans if insurers were required to cover fertility preservation.
The University of Connecticut Center for Public Health and Health Policy estimated that premiums in that state would rise by about 6 cents per member per month if a 2013 fertility preservation bill passed. The bill didn’t pass that year, but its sponsor, a cancer survivor, brought the idea back and it succeeded in 2017.
In Illinois, bill sponsor Rep. Robyn Gabel, a Democrat, first introduced the bill last year at the urging of the Illinois arm of the American College of Obstetricians and Gynecologists. The legislation went nowhere. She now believes she has more momentum after watching Rhode Island and Connecticut get similar bills to the finish line.
Some of physicians, professional organizations and advocacy groups are pushing for the bill’s passage, as is Ferring Pharmaceuticals, which makes drugs that are used as part of the egg retrieval process. Michael Mawby, vice president for government affairs at Ferring, said the company is lobbying for the bill because “it’s the right thing to do.”
Fertility preservation “is never going to be a huge business driver for us,” Mawby said.
If the measure does pass and is signed by Gov. Bruce Rauner, it will be too late for women like Megan Connolly. But she’d like other cancer patients have one less thing to worry about while enduring one of life’s most stressful experiences.
Connolly, of Chicago, had her eggs frozen eight years ago, after she relapsed with Hodgkin lymphoma. Her parents paid for it, an expense that soon proved worthwhile.
She began experiencing night sweats shortly after her treatment ended—a sign that her ovaries were failing. “In a time of such sadness I was also still grateful I had the opportunity to harvest my eggs prior to treatment,” Connolly said.
She wasn’t thinking about kids in her early 20s. But now, at 29, with a boyfriend of five years, it’s on her mind daily. Connolly was one of six siblings growing up, and she hopes to start her own family soon.
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