Jessica Tincopa may leave the photography business she spent 14 years building for one reason: to find coverage for fertility treatment.
After six miscarriages, Tincopa and her husband started saving for in vitro fertilization, which can cost well over $20,000. But the pandemic wiped out their savings, and they can't find coverage for IVF on their state's health insurance marketplace. So, the California couple is saving again, and asking politicians to help expand access.
"No one should ever have to go through this," Tincopa said.
Infertility, or the inability to get pregnant after a year or more of trying, is a common problem. The federal Centers for Disease Control and Prevention estimates that it affects nearly one in five married girls or women between the ages of 15 and 49.
Yet coverage of fertility treatments can be hard to find in many corners of health insurance even as it grows briskly with big employers who see it as a must-have benefit to keep workers.
It's a divide researchers say is leading to haves and have nots for treatments, which can involve a range of prescription drugs and procedures like artificial insemination or IVF, where an embryo is created by mixing eggs and sperm in a lab dish.
"It is still primarily for people who can afford to pay quite a bit out of pocket," said Usha Ranji, associate director of women's health policy at KFF, a nonprofit that studies health care issues.
Clouding this picture are insurer concerns about cost as well as questions about how much fertility coverage should be emphasized or mandated versus helping people find other ways to build families, such as adoption.
"If you're going to offer one, there should be a corollary and maybe even more significant benefits for adoption," medical ethicist Dr. Philip Rosoff said.
A total of 54% of the biggest U.S. employers — those with 20,000 workers or more — covered IVF in 2022, according to the benefits consultant Mercer. That's up from 36% in 2015. Walmart started offering coverage last fall and banking giant JPMorgan began this year.
Many businesses that offer the coverage extend it beyond those with an infertility diagnosis, making it accessible to LGBTQ+ couples and single women, according to Mercer.
The benefits consultant also said there's big growth among employers with 500 or more workers, as 43% offered IVF coverage last year. But coverage gets spotty with smaller employers.
Lauderhill (Florida) Fire Rescue Lt. Ame Mason estimates she and her husband have spent close to $100,000 of their own money on fertility treatments over the past few years, including several unsuccessful IVF attempts. Mason and her husband both work for the same department.
Her brother-in-law also has a fertility issue. He works for a bigger fire department in nearby Palm Beach County and got coverage. Mason said that couple has a son.
"It's pretty wild. You could work a county away and have coverage," Mason said. "There's nothing regulating it … both government jobs."
Twenty-one states have laws mandating coverage of fertility treatments or fertility preservation, which some patients need before cancer treatments, according to the nonprofit patient advocacy organization Resolve. Of those states, 14 require IVF coverage.
But most of these requirements don't apply to individual insurance plans or coverage sold through small employers.
"People tell us that their biggest barrier to family building is lack of insurance coverage," Resolve CEO Barbara Collura said, adding that some insurers don't view the care as medically necessary.
The state and federally funded Medicaid program for people with low incomes limits coverage of fertility issues largely to diagnosis in several states, according to KFF, which says Black and Hispanic women are disproportionately affected. States also can exclude fertility drugs from prescription coverage.
"By not covering this for poor folks, we're saying we don't want you to reproduce," said medical ethicist Lisa Campo-Engelstein of the University of Texas Medical Branch in Galveston, Texas. She noted Medicaid programs do cover birth control and sterilization procedures like vasectomies.
In California, Tincopa says she has talked to both state and federal legislators about creating some sort of option for people to purchase individual insurance with the coverage.
Some insurers in the state do offer "higher premium health care packages" that include an IVF coverage option, said Mary Ellen Grant, a spokeswoman for the California Association of Health Plans. She noted that health plans in the state are required to cover the treatment of underlying causes for infertility, like endometriosis or low testosterone, but not required to cover procedures like IVF.
The state Senate is weighing a bill that would require such coverage for plans offered through large employers. But the insurer association opposes it.
Grant noted independent analysis has shown that bills like this could increase premiums by as much as $1 billion in the state. She also said it would create a coverage gap because it wouldn't apply to the state's Medicaid enrollees.
"This is not about the treatment itself," she said. "It's strictly based on the increased costs for our members. It would impact everybody regardless of whether they received the benefit."
But large fertility cost estimates often overstate how many people will use the benefit, said Sean Tipton, of the American Society for Reproductive Medicine. He also said most people with fertility problems don't need IVF.
Tipton, who has advocated for benefit mandates in several states, said he expects to see fertility treatment coverage grow, especially with small employers who may need to offer it to attract and keep workers.
Any states that decide to require fertility treatment coverage should also require support for adoption, said Rosoff, a retired Duke University medical school professor. He said "fairness and justice" dictate doing so, adding that adoption promotes the social good of finding homes for children.
Many companies that have expanded fertility benefits also support adoption.
Ame Mason's employer helps with neither.
Mason said she has thought about adoption, but will stick with IVF for now — scrimping wherever they can and working overtime as much as possible to pay for it. They've found a doctor in Florida after traveling to Barbados for care that was slightly less expensive.
Plus, she and her husband are seeing improvements in their most recent IVF attempts. This makes her reluctant to stop trying.
"We keep getting that glimmer of hope," she said.
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