In 2015, Alex, now 37, asked her boss if she could take two personal days before Thanksgiving break from her new job teaching at a private school in California. When Alex, who asked to use a pseudonym due to fear of professional consequences, told her boss, who is a woman, that the time off was for an embryo transfer, she recalls her boss saying that this treatment wouldn’t qualify for use of one of her paid, already accrued personal days—and insisting that the time off would have to be partially unpaid. After a medical emergency in 2010, Alex had lost both of her fallopian tubes, so in vitro fertilization was her only hope for becoming pregnant again. (She was already the mother of a toddler, also conceived via IVF.) “I have co-workers who go to Burning Man the first week of school every year,” Alex said. “I’m not really sure why [IVF] wouldn’t qualify for a personal day.”

Infertility is still largely seen as a private medical matter, not the subject of robust public policy discussion or careful consideration from employers. Paid family leave for new parents, by contrast, has gotten significant attention in recent years. It now has broad bipartisan support, and populous states like California and New York have passed comprehensive laws covering millions of workers. While federal legislation about family leave remains crucial and elusive, it is undoubtedly a well-defined and much-championed cause. The same goes for efforts to get company-sponsored insurance plans to cover birth control, which is now required under the Affordable Care Act.

President Trump’s efforts to roll back the rule face extensive legal challenges and well-organized opposition from reproductive rights activists. And yet somehow, even as we’ve made strides in public awareness about the importance of issues like these, infertility treatments—and the legal and workplace questions that surround them—remain largely in the shadows. Individuals who suffer from infertility are often left isolated, facing negative career implications and bank-breaking medical bills.

One of the biggest misconceptions about infertility is that it’s a niche issue. It’s not. Michelle Obama, upon the release of her memoir in late 2018, became arguably the most famous person to publicly reveal her fertility issues: namely, that she and her husband Barack Obama had used IVF to conceive their daughters. One in 8 women of reproductive age may face problems when trying to conceive a child, which makes infertility about as common as breast cancer and more common than Type 2 diabetes. In 2015, 73,000 babies were born using assisted reproductive technologies, a number that has doubled in the last decade; the most common of these technologies is in vitro fertilization.

“I have co-workers who go to Burning Man the first week of school every year. I’m not really sure why [ IVF ] wouldn’t qualify for a personal day.” — Alex

Despite the fact that infertility was officially designated a disease by the American Medical Association in 2017, full fertility treatments are still not a standard part of most company health insurance plans, and are not viewed under current health care laws as an essential benefit. While there has been much public debate about whether employers have the right to limit women’s access to contraception through their health plans, there has been little discussion about whether employers should be required to provide benefits that help a woman get access to prescribed, medically necessary treatments when she is struggling to start a family. If you need medical help to have a child, adequate insurance coverage for such treatment is largely viewed as an employment “perk.” Only 16 states currently require that insurance companies provide or offer some coverage, but even those benefits can have loopholes, and often fail to cover the large costs associated with effective treatment.

Women dealing with infertility can find themselves caught in a maze of challenges. Even though male factor infertility is the root of 40–50 percent of infertility cases in straight couples, it’s often necessary for women to undergo much more extensive evaluations, medications, and medical procedures in order to become pregnant. The process can be grueling, involving short-notice doctor appointments early in the morning, physically invasive procedures that can require sedation, endless blood draws, regular self-injections of intense hormones, and the emotional roller coaster of waiting to find out if a procedure was successful. Alex described the stress of trying to do a frozen embryo transfer during her demanding schoolyear. She often had work events at night, which meant she had to do her evening hormone injections at school. “The anxiety of having needles at school,” she said, “and who was going to walk into the bathroom…It was crazy.”

Since these treatments fall, in terms of official workplace policy, at the intersection between medical treatment, disability, and pregnancy, companies are often caught flat-footed, with many lacking precedent and clear policies—leaving managers and HR staffers to make their own judgments. And many employers have no idea what their legal obligations are regarding all of this. Why, in 2019, are American workplaces still so stymied when it comes to dealing with issues around infertility?

When I first spoke to Lisamarie, now 35, in late 2017, she was a benefits administrator at a call center in North Carolina. She had been trying unsuccessfully to conceive a child for about six years. (She asked that her last name be withheld for privacy reasons.) She’s suffered three ectopic pregnancies and has had to have one of her fallopian tubes removed. After the last ectopic pregnancy, doctors told her that IVF was her only chance for conceiving a baby. Lisamarie began her IVF process, which was—she was grateful to learn—partially covered by her insurance. But then at the end of 2016, in between the retrieval of her eggs and the implantation of embryos in her uterus, she found out that her company was dropping the benefit for the next year. “I was gutted,” she said. “I didn’t know how we were going to get these eggs transferred. I was lost. … I think I cried for a week.”

“I didn’t know how we were going to get these eggs transferred. I think I cried for a week.” — Lisamarie

Fertility treatments are not cheap. IVF-related medications and procedures can cost anywhere from $12,000–$20,000 per cycle—and it’s not uncommon for IVF to take more than one cycle to work—depending on the clinic and the services provided. Some other forms of infertility treatment, such as intrauterine insemination, cost a fraction of that, but have lower success rates, higher risks for multiples when fertility drugs are used, and aren’t appropriate in all cases. While there are some opportunities for discounts or reduced fees for IVF, these out-of-pocket costs can be prohibitively expensive for many. The site Fertility IQ puts the average cost for successful IVF treatment at about $51,000, an amount that approaches the average annual US household income.

According to a study conducted by the insurance brokerage firm Willis Towers Watson, the percentage of employers offering fertility benefits is expected to grow from 55 percent in 2017 to 66 percent by the end of 2019. The problem is that IVF, the most expensive and sometimes most effective form of treatment, isn’t always covered—or the amount of reimbursement doesn’t come close to covering the costs. David Schlanger, the CEO of the fertility benefits management company Progyny, explained:

A traditional health plan from a company that offers [what some would consider] ‘decent benefits’ though their health insurer would be a $20,000 lifetime maximum benefit. But it could have all these pre certification protocols where you might [have to do] three to six rounds of [intrauterine insemination] before they even let you try IVF, and at that point you’ve used up almost your entire benefit.

According to Fertility IQ, “the state of IVF reimbursement continues to be a tale of ‘haves and have nots’—with 63 percent of patients and employees receiving zero coverage and almost 20 percent receiving complete coverage.” The “haves” are most likely to work at large companies with robust benefits, often in industries that compete for talent, like tech, consulting or finance. Their employers often opt to expand their benefits through traditional health care companies, or contract additional fertility coverage with outside companies like Progyny. Many traditional insurance companies also have policies that exclude gay couples and single women from coverage by requiring that they must attempt conception through heterosexual intercourse for six to 12 months, depending on their age. This is obviously a maddening requirement for a set of would-be parents.

Company costs are also always a factor. But the data suggests that comprehensive fertility benefits may actually save companies money in unexpected ways. A 2006 study showed that 91 percent of companies that added IVF coverage did not see a rise in costs to their health care plans, largely because by ensuring that women are targeted, medically appropriate treatments can reduce health care costs overall. When a large company is self-insured—meaning it pays directly for the health care claims its employees make—there is evidence that it will save money when doctors and patients make smart clinical decisions not based around what treatments are covered and what they will cost.

For example, women who have access to IVF coverage may be less likely to undergo riskier procedures, such as transferring multiple embryos, in an effort to save out-of-pocket costs. Complicated pregnancies, pre-term births, multiples, and NICU stays can cost self-insured companies $100,000 to $500,000 per birth. Providing infertility benefits can have other cost-saving effects including reducing turnover and improving employee loyalty. And yet comprehensive infertility coverage is still notably rare.

Lisamarie considered raising the loss of the benefits to her employer, but had a hard time even finding the right HR person to raise it with. She was uncomfortable discussing it with her manager and worried her request could be seen negatively. She and her husband decided to withdraw money from their 401(k)s to pay for the egg transfers. The last transfer resulted in a miscarriage at six weeks. When I spoke to her in the fall of 2017, she was out of retrieved eggs, no longer had insurance coverage for IVF, and was unsure if she and her husband would be able to continue with their quest to have a baby. On her first day back at work after the latest miscarriage, a co-worker shared the happy news that her daughter had just given birth that morning: “I wanted to be happy for her but it just hit me in my gut. I just had to walk away because I couldn’t hold back the tears, but nobody knew why I was crying.”

For many women, infertility is an incredibly painful experience, one that can be difficult to share even with close family members. Discussing it at work can feel like a nonstarter given that it requires opening yourself up to questions about your body, your family plans, your health, your sex life, and your career path. Women struggling with infertility are often faced with a barrage of stereotypes and judgment. “There is an automatic assumption that you’ve brought this on because of career choices you’ve made, education choices you’ve made, or the stress in your life,” said Barbara Collura, president and CEO of RESOLVE, an infertility support and advocacy group. “The reality of what you’re going through is not appreciated. Infertility can impact your work life, your relationships, your finances, your faith, and and your health.”

The emotional toll of infertility can be hard to overstate. Angie Bergmann, 36, an SEO strategist who lives in Akron, Ohio, has been dealing with fertility issues and treatments on and off for 14 years. “I’ve lost both of my parents,” she said, “and the grief from that is nothing compared to this.”

“The state of IVF reimbursement continues to be a tale of haves and have nots—with 63 percent of patients and employees receiving zero coverage and almost 20 percent receiving complete coverage.”

All the women I spoke to had concerns that sharing their infertility with their employers could jeopardize their jobs, lead their bosses to think less of them, or subject them to pregnancy-based discrimination before they were even pregnant. While there haven’t been comprehensive studies on infertility bias in the workplace, these women weren’t off-base in their concerns. Pregnancy discrimination is common in American workplaces, and anti-mom bias is also rampant. Women who become mothers earn less than their childless peers, and are judged more harshly by colleagues and bosses. Telling an employer that you are actively trying to become pregnant, may need time off for treatments, and thus might be taking maternity leave in the not-too-distant future rightfully feels risky to many women.

Katie Lelito, 33, a scientist who has twice succeeded in lobbying employers to cover fertility treatments, said that she was always worried about how sharing her infertility could impact her professionally in a male-dominated field. “I was concerned [that if people in my field] knew I was trying to get pregnant that I was somehow less of a scientist. I was worried that, because I also wanted to have a family, people would think maybe I wasn’t as committed to my work.”

Another thorny issue for women is how to deal with navigating job responsibilities while balancing the sometimes demanding treatment schedule procedures like IVF require. Unlike maternity leave, which most people can arrange for a set period of time well in advance, infertility treatments are far from linear and don’t always have a known end date. Also, women can’t always predict the physical and emotional needs that result from the process. Fertility treatments can require intense, mood-altering hormone injections on a strict schedule. Egg retrieval and implantation must happen precisely when a woman’s body is ready, with no regard for meeting schedules or work trips. And procedures requiring sedation can lead to time-off requests on short notice. Additionally, miscarriages or attempts to get pregnant that don’t work can be emotionally devastating, making it difficult to return to one’s desk like nothing has happened. Alex, the private school teacher, did ultimately conceive her second child with IVF, but not until the summer. She thinks it’s no coincidence that IVF was successful both times during the months when she wasn’t teaching, and thus didn’t have to juggle her medications, appointments, and anxiety while working full-time.

The lack of clarity around workplaces and infertility has presented a challenge for employers, too. There are no widely established HR best practices for how exactly to support women who are dealing with these treatments. Even companies I contacted that have thoughtful and robust fertility benefits for their employees, including Pinterest and Bain and Co., don’t offer specific training or guidance to managers around this issue. Often, companies appear to view this particular issue as something that can be categorized under general company guidelines around workplace flexibility and work-life balance, and suggest that their company cultures set a positive tone in supporting women who are dealing with infertility.

But in the absence of official policies, especially at workplaces with strict paid time off rules, less flexible work cultures, fledgling HR structures, or minimal experience dealing with women’s health issues, disability, or pregnancy, a lot of discretion is left to individual managers. That’s especially tricky given that many women understandably don’t feel comfortable sharing this information with their managers. It’s tricky for mangers, too. Without knowing why someone is repeatedly coming in late or, say, declining important business trips, bosses can make their own assumptions about a woman’s commitment to her job.

One woman I spoke to said that, at a former employer with a highly demanding work culture, her boss encouraged her to come back to work as soon as she could after an emergency surgery for an ectopic pregnancy, despite the fact her doctor recommended two weeks off for her to recover. The boss had her take unpaid time for the two and a half days she wasn’t at work after the surgery. “His own wife has been through IVF several times,” she recalled. “He said, ‘I understand [what you are going through], but you have a job to do.’ ”

While there’s still a long way to go in terms of establishing better workplace policies, there are established legal protections for women dealing with an infertility diagnosis at work—many employees and employers just don’t know about them. The primary law that generally protects women who have suffered miscarriages or are undergoing infertility treatments—explains Dorota Gasienica-Kozak, a Pennsylvania lawyer who specializes in Assisted Reproductive Technology law—is the Pregnancy Discrimination Act.

Under some circumstances, the American Disabilities Act could also apply, requiring employers to make “reasonable” accommodations to support an employee with a covered disability. While “reasonable” has to be agreed upon by both the employer and employee, this could include modifying work schedules or workload, and granting paid time off for treatments. The crucial step, however, is that a woman must formally request an Americans with Disabilities Act review with her HR department, and may be required to provide documentation of the disability and the treatment needs.

While it’s undeniably difficult, for women to publicly discuss their infertility, sharing stories can be a powerful tool for change. After Lelito, the scientist, found her quest to get pregnant at 27 unsuccessful, doctors told her that IVF was her only chance of conceiving. As a graduate student at the University of Michigan, she knew there was no way she could afford IVF treatment costs out of pocket, so with the help of the graduate student union, she spent a year and a half lobbying the university to add coverage. In 2014, the university agreed to add the benefit for all employees and students in its system, covering thousands of people.

But there was a catch. Lelito had already graduated and had started a job as a research scientist a few weeks before the change was announced, so she wasn’t eligible to take advantage of the coverage. Her new company also didn’t have any IVF benefits, so she decided to go a HR benefits open session and asked the representative if she would consider adding infertility coverage. “Her response was, ‘Oh we don’t have that already?’ We’ll look into this right away.” To her delight, the company added the benefit for that upcoming year. Using her company’s IVF policy, Lelito conceived a baby, who was born in October 2016, and has a second due in 2019.

Aside from achieving the concrete result of convincing employers to change their policies, many of these women expressed hope that telling their stories could help dispel the wider social stigma. Bergmann says that, while she’d been at times hesitant to discuss her experiences, the #MeToo movement has emboldened her. “I feel even more confident in speaking up now because I clearly see where being quiet has brought us,” she said, “The only way we can change the conversation around infertility, pregnancy, and reproductive health as a whole is by being unforgivingly and unapologetically loud in voicing our needs.”

As for Alex, when she reflects on her long path to conceiving her two kids, the shame she felt around doing IVF still feels vivid. “And feeling that it was shameful,” she recalled, “made it hard for me to really advocate for myself.” “I just wish there was more empathy around this experience,” she said. “I wish there could be more conversations, and we could support women who are going through this, socially, culturally, and professionally.”