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It’s Time to Redefine Infertility

Kevin Whipple

When Erik Schramm talks to friends about starting a family, he’s heartbroken. “I watch them want to do this, then I tell them about the costs, and they say, ‘We just can’t.’ Or I see couples go into crazy debt because it’s their dream,” says the 43-year-old, who lives in Townsend, Delaware.

Schramm and his husband have two children and are about to start the process of having a third. Despite several setbacks — including three failed embryo transfers before having their first child — Schramm, a political consultant, acknowledges that he and his husband, a doctor, are fortunate to have the resources to cover the expenses of having a family. In order to have their first child, the couple spent more than $100,000 out of pocket on rounds of donated eggs, embryo transfers, travel for their surrogate and more. Still, he says, “it’s so frustrating as a gay couple that fertility treatments aren’t covered by insurance.”

Many insurance plans treat infertility as a heterosexual condition, either explicitly or implicitly. “Most medical books and medical organizations define infertility as the inability to conceive after one year of unprotected sex,” explains Lisa Campo-Engelstein, director of the Institute for the Medical Humanities at the University of Texas Medical Branch. The presumed meaning of “unprotected sex” is vaginal sex, not oral or anal, between a heterosexual couple.

Many insurance plans treat infertility as a heterosexual condition, either explicitly or implicitly.

Since LGBTQ+ couples are excluded from this definition, they often either receive no insurance coverage for fertility treatments or have to pay out of pocket to “prove” infertility before accessing benefits. Seeing this as an unfair burden, some reproductive health experts have promoted the concept of “social infertility.” “This refers to people who are not in the kind of partnership that is expected to lead to pregnancy on its own, such as single people and same-sex partnerships,” explains Faren Tang, a reproductive justice fellow with the Program for the Study of Reproductive Justice at Yale University. While not all LGBTQ+ advocates agree that this term is useful, most agree that LGBTQ+ couples should have access to infertility care and insurance benefits.

The challenging road to LGBTQ+ parenthood

For anyone, going through fertility treatments is a second job. “You’re researching, choosing sperm, taking out loans, being really careful with money, making humongous life decisions and crossing your fingers that they’re the right ones and will work,” says Carrie Welch, 41, a mother of two with her wife, Jannie Huang, 42. “Plus you’re trying to keep your body and your mental and emotional health in shape.” 

Explainers

Are At-Home Fertility Tests Worth It?

Add to that being LGBTQ+ and having to find inclusive healthcare providers. “For trans people in particular, even the prospect of discrimination is a barrier” to care, Tang points out.

LGBTQ+ couples in which one or both partners are non-white deal with additional burdens. In the US, infertility is disproportionately common among people of color, Tang says. This is due to a variety of factors rooted in systemic racism. For example, people of color face increased exposure to air pollution and discrimination from healthcare providers, which can discourage people from seeking care for medical conditions linked to infertility.

Next, there are financial hurdles. Sixteen states require insurers to offer coverage for infertility treatments, but the specifics of the laws vary considerably. “Because most models rely on the biological definition of infertility, LGBTQ+ individuals often don’t get diagnosed. And if you don’t get diagnosed, depending on the state law, you don’t get insurance coverage,” Campo-Engelstein explains. Even then, few top insurance companies offer the same fertility treatment benefits to LGBTQ+ couples that they do to heterosexual couples, says Serena Johnson, chief program officer of Family Equality, a nonprofit organization advancing equality for LGBTQ+ families.

When a heterosexual couple says they’ve been having sex for a certain period of time, nobody questions them.

Lesbian couples have to pay for sperm donation, intrauterine insemination (IUI) and sometimes in vitro fertilization (IVF), and gay couples have to pay for egg donation and gestational surrogacy. Heterosexual couples may have to pay for these services too, but they’re more likely to get help from insurance.

For example, compare the typical experience of a heterosexual couple vs. that of a lesbian couple: To qualify for fertility benefits, in most instances, the first couple would have to try to get pregnant for a year or six months, depending on their age. On the other hand, “the same-sex female couple is burdened with having to prove they have infertility first,” explains Dr. Mark Leondires, who’s the medical director of RMA of Connecticut, the founder of Gay Parents to Be, an international program serving gay, bi and trans dads and dads to be, and a founding partner of Gay With Kids. That means paying for six rounds of IUI (and the sperm for those treatments) out of pocket before insurance might step in to help.

Trying to equate intercourse with IUI for lesbian couples doesn’t solve the problem, Tang says, and not only because the cost of IUI averages $300 to $1,000 per cycle. Privacy also remains a huge issue. “Nobody is checking if the heterosexual couple is having the ‘right’ intercourse, at the ‘right’ time of the month, and that ejaculation is complete,” she says. Providers “rely on self-reporting, for good reason.” But that means when a heterosexual couple says they’ve been having sex for a certain period of time, nobody questions them.

“People who have to use IUI or IVF to ‘prove’ they’re doing the things they need to do aren’t given the same grace,” Tang says. They can’t take a month off because one partner is traveling or because they’re exhausted from the physical, mental and emotional weight of treatments. Nor can they use intracervical insemination (aka the “turkey baster” method) at home — instead, they must be able to prove they were at a doctor’s office for their procedures. “They are held to stricter and higher standards than a heterosexual couple using a technique that’s less likely to produce a pregnancy,” Tang says. “I think you’d be hard-pressed to find a reproductive endocrinologist who would say that a heterosexual woman should go through 12 rounds of IUI before trying IVF.”

“If insurance is going to cover [infertility treatments], the logical way to do it is to think about which services to cover, not which people to provide that coverage for.”

But that’s only for lesbian couples. For gay male couples who want to have children, there’s often no insurance benefit. While a male with infertility who’s married to a woman would receive coverage, a gay couple needs to pay for an egg donor, surrogate, surrogacy agency, IVF clinic costs, legal fees for the couple and surrogate, and health insurance for the surrogate. This easily adds up to six figures.

Even notable examples of progress toward inclusive fertility care leave out gay men. New York State recently passed a mandate requiring all large group insurance plans to cover three cycles of IVF as well as medically necessary fertility preservation services. The law’s non-discrimination clause prohibits insurers from denying IVF coverage based on personal characteristics including sexual orientation, marital status and gender identity. Yet, because the law preserves a heteronormative definition of infertility, it effectively discriminates against gay men.

Fighting for equal benefits

In an effort to help couples with these costs, advocates want to expand the definition of fertility. Some would like to use the term “social infertility” to include those who cannot sexually reproduce via intercourse, including LGBTQ+ couples, single people and heterosexual couples in which one partner is physiologically fertile and the other is not. Healthcare professionals, insurance companies and state policies are the “gatekeepers to treatment,” Campo-Engelstein says. “Expanding the definition of infertility to include social infertility would give more people access to infertility treatments and would hopefully lead to insurance coverage for fertility treatments for people with social infertility.”

But others take issue with “social infertility,” both the underlying concept and the phrase itself. “[It] implies choice,” says Leondires, who has two children with his husband. “LGBTQ+ persons are who they are. Their sexuality, which is biological, leads to their infertility and is predetermined.”

Tang says fertility is always social, since pregnancy requires two parties. Using the terminology “inherently classes heterosexual people who unable to archive pregnancy in a fundamentally different light than same-sex couples or single people who are in the same circumstances,” she says. “It normalizes heterosexual reproduction and casts queer reproduction as a lifestyle choice, when in fact, those people are similarly situated.”

Many see access to parenthood as the next hurdle for the LGBTQ+ community.

She supports changing the standard policy whereby a patient needs a formal infertility diagnosis in order to access covered treatment. “Fertility coverage based on someone’s definition of infertility is the wrong way to think about it,” Tang says. “If insurance is going to cover this, the logical way to do it is to think about which services to cover, not which people to provide that coverage for.” For example, a provider may cover a specific number of rounds of IUI for all patients who want the treatment.

And that’s what LGBTQ+ individuals want. “We are not asking for more; we’re just asking for the same coverage” that employees in heterosexual relationships receive, Leondires says. For the past five years, he’s partnered with pharmaceutical companies and the fertility benefits management company Progyny to explain to companies why inclusive benefits are important. More than 100 Fortune 500 companies now extend benefits to all employees. “I don’t think anyone is knowingly excluding LGBTQ+ people,” Leondires says, “but insurance companies are not good at saying to employers, ‘Do you want to include a separate benefit for LGBTQ+ employees?’”

Same-sex marriage is legal in all 50 states. In June, the Supreme Court ruled that employers cannot discriminate on the basis of sexual orientation or transgender status. Many see access to parenthood as the next hurdle for the LGBTQ+ community. “We come at it [having children] differently because of the fight we have to fight to make this dream come true,” Schramm says. “I’m not saying [insurance should cover] every single cost, but it should at least be fair.”

Show Comments (1)
  1. ROBERT John REED

    My thought is the same for gay, lesbian, hetero, etc……ADOPT. Or pay for it yourself. IVF costs 10x
    more than I have received in healthcare benefits in 25 years. It isnt fair anymore than people using government benefits to have 10 kids (free) while others go broke paying for one of two deliveries.

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