As a thyroid cancer survivor, Amy Goldstein knew that the road to conceiving a child would likely be long and costly. She and her husband did not begin trying until Amy was 37, and ovary damage from radiation meant that the couple had to rely on fertility treatment.
At first, they thought about using medication alone but, due to the cost and Goldstein’s limited amount of coverage, they decided that in vitro fertilization, a procedure in which fertilization occurs outside the body, would be the best route.
“The medication was so expensive, and there was no way to know whether or not that egg would’ve gotten fertilized,” Goldstein said. “Our best shot at finding a viable egg was to do IVF and see with genetic testing if there was a normal embryo.”
As a then-Stanford Healthcare employee, Goldstein’s insurance covered $10,000 toward fertility treatment and, after the additional costs that Stanford agreed to cover, the couple paid over $18,000 from their own pocket. Though expensive, Amy said she is actually quite lucky. Most couples neither have fertility coverage at all, nor do their employers contribute toward any part of the bill. Many women also require more than the one cycle of IVF that Goldstein needed for success.
In fact, more than 80% of companies with over 500 employees in the United States do not offer any fertility benefits, and the percentage is even higher for smaller employers. According to FertilityIQ data, without coverage, one IVF cycle in the Bay Area costs patients around $25,000, and because the majority of women must undergo two to three cycles, it’s not uncommon for the full price tag to exceed $60,000.
In 2019, California passed a law that mandates coverage for preservation treatments, such as sperm banking and egg freezing, for those undergoing medical procedures that make it difficult to conceive, such as cancer treatment; however, the requirement does not include IVF treatment or necessary medications.
Beyond that, California is a mandate-to-offer state, which means that while employers do not have to offer fertility coverage, if they do request it, insurers must provide it. However, according to Betsy Campbell, chief engagement officer of Resolve, a national patient advocacy group focused on issues of infertility, it still does little to minimize the final cost for patients.
“It’s still up to the employer whether they provide it, and the insurer can charge whatever they want, so in many ways, they could make it unattractive for employers to provide it,” she said. “The mandate-to-offer from a patient perspective is not really much of a mandate because it’s not really requiring coverage.”
But Campbell is hopeful that Assembly Bill 797 will pass in 2022. The bill, introduced by assemblymembers Buffy Wicks and Evan Low, would expand the requirement so that payers must offer coverage — not just when an employer requests it — and include IVF treatment.
Advocates also recognize that legislation alone will not expand access and affordability. Venture capital funding within the industry has surged nearly 90% between 2020 and 2021, and more private-sector companies like San Francisco-based Carrot are offering employers robust coverage options that have historically been more available to employees of large organizations within the technology and finance industries.
While cost can certainly be a prohibiting factor for small employers, Juli Insinger, Vice president of Business Development at Carrot, believes that there is also less visibility around the demand for fertility benefits at these companies, oftentimes due to a taboo around the topic.
“At larger companies it’s more commonplace to have employees talking about [fertility coverage]. Where it comes up most commonly with small companies is when they’re trying to recruit a top executive who asks for a fertility benefit,” Isinger said.
Carrot also prides themselves on being inclusive of individuals and LGTQ couples who often face additional hurdles in receiving benefits, even if their plan technically offers coverage.
“As part of insurance coverage, a medical diagnosis of infertility has typically been needed in order to access care. A medical diagnosis of infertility is typically defined as a heterosexual couple trying for six to 12 months, and then getting medically diagnosed and therefore unlocking the benefit that way,” Isinger said.
For many advocates, while it’s important that companies like Carrot have intentionally lowered barriers for coverage, it’s still critical that widespread discrimination against non-heterosexual families is not allowed under state law. AB 797 also contains clauses to prohibit this additional burden that payers often impose, and Resolve has heightened efforts to partner with grassroots organizations such as Equality California, which advocates for LGBTQ rights.
The nonprofit is also placing more emphasis on dispelling myths around coverage that are often used to block expansion efforts, such as the high cost. Campbell said it is roughly the same cost as a knee replacement, and that when patients have IVF coverage, they’re more than twice as likely to transfer a single embryo during the cycle, often saving millions of dollars in unintended and premature births.
“We know that states that have IVF insurance laws have lower rates of multiple births because when patients are paying out of pocket, they put pressure on the doctors to transfer more embryos, leading to multiple pregnancies,” Campbell said.
For Goldstein, having access to good doctors and educational resources, in addition to coverage and a relatively short IVF process, made the ordeal less time-consuming and less stressful. Her involvement in support groups with women in different states has opened her eyes to not only medical struggles they often endure, but how great costs vary depending on what state you’re in or what company you work for.
“What amazes me are the women’s stories I hear of their quality of care and what they go through,” Goldstein said. “I’m thankful that I went to Stanford, and I am also thankful I am educated and was able to research and know what was the best route for me.”
According to Campbell, AB 797 is one step closer toward narrowing those wide gaps in access.
“Families are built in many different ways, and our insurance laws need to keep up with the times,” she said. “It shouldn’t matter what employer you work for, what state you live in, or who you are in partnership with in order to build a family.”