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 more than US$20,000. But the coronavirus pandemic wiped out their savings and they can’t find coverage for IVF in their state’s health insurance marketplace. So the California couple is saving again and asking politicians to help expand access.

Infertility is a common problem. The federal Centers for Disease Control and Prevention estimates it affects nearly one in five 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 that see it as a must-have benefit to keep workers.

Read: 42% of global employees say lack of employer-provided fertility benefits is a ‘deal breaker:’ survey

“It is still primarily for people who can afford to pay quite a bit out of pocket,” says Usha Ranji, associate director of women’s health policy at the Kaiser Family Foundation, a non-profit 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. About half (54 per cent) of the biggest U.S. employers — those with more than 20,000 workers — covered IVF in 2022, up from 36 per cent in 2015, according to a report by Mercer. Walmart Inc. started offering coverage last fall and JPMorgan began earlier this year.

The report found many businesses that offer the coverage extend it beyond those with an infertility diagnosis, making it accessible to LGBTQ2S+ couples and single women. It also noted 43 per cent of employers with more than 500 workers offered IVF coverage last year. But coverage gets spotty among smaller employers.

Read: Walmart expanding fertility benefits for U.S. employees

Ame Mason, a fire rescue lieutenant in Lauderhill, Fla., 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’s brother-in-law also has a fertility issue, but he works for a bigger fire department in nearby Palm Beach County and was able to get coverage.

Twenty-one states have laws mandating coverage of fertility treatments or fertility preservation, which some patients need before cancer treatments, according to non-profit patient advocacy organization Resolve. Among those states, 14 require IVF coverage. However, most of these requirements don’t apply to individual insurance plans or coverage provided through small employers.

“People tell us their biggest barrier to family building is lack of insurance coverage,” says Barbara Collura, chief executive officer of Resolve, adding some insurers don’t view the care as medically necessary.

Medicaid limits coverage of fertility issues largely to diagnosis in several states, according to the Kaiser Family Foundation, which notes Black and Hispanic women are disproportionately affected. States can also exclude fertility drugs from prescription coverage.

Read: 40% of U.S. employers offered fertility benefits in 2022, up from 30% in 2020: survey

In California, Tincopa has talked to both state and federal legislators about creating an option for people to purchase individual insurance with fertility coverage. The state Senate is weighing a bill that would require coverage of fertility treatments for large employers.

However, the California Association of Health Plans opposes it, just as it opposed similar bills in recent years, because of how much it might cost. Mary Ellen Grant, a spokesperson for the organization, says independent analysis has shown bills like this could increase premiums by as much as $1 billion in the state, adding it would create a coverage gap because it wouldn’t apply to the state’s Medicaid enrollees.

Sean Tipton, chief advocacy and policy officer at the American Society for Reproductive Medicine, says large fertility cost estimates often overstate how many people will use the benefit, adding most people with fertility problems don’t need IVF.

Mason says she has thought about adoption, but will stick with IVF for now, scrimping wherever she can and working overtime as much as possible to pay for it. She’s found a doctor in Florida after travelling to Barbados for care that was slightly less expensive. She and her husband are seeing improvements in their most recent IVF attempts and this makes her reluctant to stop trying. “We keep getting that glimmer of hope.”

Read: How is fertility benefits coverage evolving?