LGBTQ patients face hurdles to fertility treatment in a system that wasn’t designed for them

After using their dead name, the doctor opened the door to greet Leighton Schreyer, who was waiting in the exam room to discuss fertility preservation. The rest of the appointment passed in a blur with a few gendered phrases sticking out like knives in the consultation.

“When women menstruate, we….” their doctor explained. “Since you’re choosing to change… We’ll inject female hormones…”

By the end of it, Schreyer, a Canadian medical student at the University of Toronto who identifies as trans and genderqueer and uses they/them pronouns, was emotionally exhausted from their experience in the clinic, which claimed it was “LGBTQ inclusive” but did little more than put up a few rainbow flags. Unfortunately, Schreyer was used to experiencing stereotypes and stigmatization in medicine — in fact, that’s what led them to go to medical school in the first place.

“I was inspired by those negative experiences to try and be the healthcare provider that I needed when I was younger,” Schreyer told Salon in a phone interview. “To be the kind of provider who really sits down and listens to the patient and understands their story and takes the time to value their experiences and understand their wants and their needs.”

At 20 years old, Schreyer wasn’t looking to start a family. They wanted to preserve their eggs before starting hormones in case they decided they wanted to have children in the future. Because this procedure was time-sensitive, Schreyer didn’t bother searching for another clinic to do the rest of their egg cryopreservation. They had already contacted numerous clinics and starting over would risk scheduling the same consultation with another provider that could misgender them — or worse. At that point, the process had already delayed their medical transition for months.

“It was definitely something that I was very anxious about,” Schreyer said. “For me, I was very eager to start the medical transition process, and [fertility preservation] felt like a very big hurdle. … It was this block getting in the way of all this other stuff that was what was important and what I needed.”

From a lack of representation in educational materials and healthcare providers to gendered language in insurance policies that excludes single people or same-sex couples from coverage, the LGBTQ community faces barriers to fertility treatment that do not exist for heterosexual or cisgender patients. Yet the LGBTQ community often needs to greater access these services because they may not be able to conceive on their own or, like Schreyer, may be medically transitioning and need to preserve their eggs beforehand.

Meanwhile, it is still legal for adoption service providers or foster care agencies to deny LGBTQ people parenthood, so fertility treatment is sometimes the only possible way to have children if that is what members of the community are seeking.

“For our community, to have children requires medical help,” said Dr. Mark Leondires, the founder of Illume Fertility and Gay Parents To Be, who is also gay and went through his own fertility journey to start his family with his partner. “There aren’t a lot of options to succeed without the help of a fertility center or at least an OB-GYN, but not everybody is willing to help and the information on how to get started and where to go is not always available.”

Just 14 states have passed laws that require insurers to cover in vitro fertilization (IVF), but some, for example, require couples to use their “own eggs and sperm.” This language automatically excludes same-sex couples or, for example, asexual people who want to have a child on their own because they may require donors. Meanwhile, it wasn’t until April 2022 that it became legal for a surrogate to carry a pregnancy in New York while in Nebraska, it is still illegal to have two same-sex parents listed on a child’s birth certificate.

Many of the more than 500 anti-LGBTQ bills that have been introduced around the country in the past year are related to reproductive healthcare and fertility. In qualitative studies and interviews, members of the community report having to navigate a system that was not made for them and that any language that does exist to include the LGTBQ community often ignores the diversity of identities and fertility needs within the acronym. 

“Representation is a big thing,” Schreyer said. “Even if you’ve walked into a space and they say they’re affirming, if you don’t see yourself reflected in any of the resources that are being cited, in the staff or even in the other patients, it can be a very isolating experience.”

The system is instead designed for people with fertility problems, which isn’t the case for many LGBTQ individuals seeking treatment, said Kelly B. Gregory, a public health researcher at the University of Waterloo in Canada. In a 2022 study by Gregory, patients said mandatory counseling sessions in fertility treatment were gendered and patronizing, with counselors asking questions like, “How are you going to tell your child that your husband is not their actual father?” to two lesbians.

“[Participants] described this sort of repetitive nature as something that can really build up to be exhausting, especially when you consider that this can be a really long process for some folks,” Gregory told Salon in a phone interview. “This sends a message to the community that their needs are unimportant and can contribute to further distancing and marginalizing individuals from healthcare systems and services.”

Some fertility treatments can cost $20,000 for a single pass at insemination, with the complete cost of a baby when it’s all said and done costing upwards of $200,000. Although these price tags are large for anyone looking to have children, LGBTQ individuals have been shown to earn less than their heterosexual or cisgender colleagues, and verbiage in certain insurance policies can make out-of-pocket costs more common for the LGBTQ community. 

Schreyer says they were lucky to have success in their first egg retrieval attempt because only one procedure was covered by their insurance. However, they were required to pay out-of-pocket for the mandatory series of injections they took in the days leading up to the procedure to prepare the eggs for retrieval. Schreyer’s eggs are now being frozen and stored for the day that they may want to use them, and they are also paying additional out-of-pocket costs for each year of storage.

Leondires said some of his patients, of whom about 80% identify as LGBTQ, are young, have been kicked out of their homes and must choose between egg cryopreservation and gender-affirming surgery, which are also both expensive and often paid out of pocket. 

“They may choose top surgery instead, and they’ll just deal with the family-building consequences later,” Leondires said. “I think it’s hard for somebody who is, you know, 16 to 25 to think about having children when they’re really just thinking about how to feel right in their own bodies.”

Some of the barriers people who identify as LGBTQ face when seeking fertility treatment, like healthcare providers using gendered language or making assumptions about sexuality and health outcomes, are not unique to fertility treatment. However, fertility and reproductive healthcare are inherently tied to organ systems like uteruses that have been historically gendered. 

“Some of these topics for trans people can be very uncomfortable, and a transmasculine person might not be super comfortable talking about things like menstruation,” Schreyer said. “Recognizing that and checking in with people at the beginning of appointments, in terms of what language they are comfortable with using [can be beneficial].”

Fertility treatment can already be a long, complicated and emotionally grueling process before these additional barriers, added Dr. Abi Kirubarajan, an ob-gyn resident at McMaster University and researcher at TRIO Fertility in Toronto. In a meta-analysis of studies assessing cultural competence in fertility clinics conducted with co-authors Dr. Sony Sierra and Dr. Priyanka Patel, also of TRIO Fertility, Kirubarajan found heteronormative language excluding same-sex couples and nonbinary patients left many unsure of what options were available to them. Instead, many patients reported they had to be the ones to educate providers about their fertility needs.

“It can be some of the most emotionally and physically taxing experiences that people go through, as well as an opportunity for genuine joy and excitement about the future,” Kirubarajan told Salon in a phone interview. “So anything that providers can do to make that patient experience better and more safe, more equitable, is really important.”

The effects of these additional barriers can be far-reaching. One 2020 study found almost one-quarter of transgender individuals surveyed avoided seeking healthcare because they anticipated facing discrimination when they walked through a health center’s doors. Another 2021 report found transgender youth experience increased rates of discrimination in addition to legal, economic and social obstacles when seeking healthcare. Because of these systemic barriers, LGBTQ individuals do not access care at the same rate as heterosexual or cisgender people, and experience health disparities as a result.

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“If I go to a health care provider to seek out care, and I have a negative experience where there’s discrimination and harassment, where I’m being misgendered, I’m being dead-named, maybe my concerns are not taken seriously, or I’m being invalidated and stereotyped, then in the future, I might be a lot more reluctant and resistance to seeking out care,” Schreyer said.

Despite the hurdles the LGBTQ community faces when seeking fertility treatment, data suggest many are finding a way to start families anyway. One large center in the Bay Area reported the number of LGBTQ patients seen at the clinic has been increasing by double-digit percentages for the past six years. The 2019 LGBTQ Family Building Survey found that 48% of Millennials are actively planning to have children, suggesting the need for inclusive services is not going away any time soon.

“The drive to be a parent supersedes the fear of oppression and marginalization for most LGBTQ+ people,” Leondires said. “They’re going to do it right and they’re going to deal with the discrimination and the raised eyebrows and the disapproving looks from the people that are supposed to be helping them.”

Last month, legislators called on the director of the Federal Employees Health Benefits program to change the definition of infertility used by participating health insurance carriers, which cover 8 million Americans. In a letter to director Kiran Ahujathey, they said the current language was “outdated” and lacked inclusivity, “particularly for the LGBTQ community.”

“By limiting coverage to these individuals only after six cycles of insemination with donor sperm, we are effectively denying them access to necessary fertility treatments, placing an undue burden on their path to parenthood,” they wrote.

In 2021, Illinois passed a law expanding fertility treatment coverage to same-sex couples, and New York passed one the same year that required fertility services to be covered regardless of sexual orientation or gender identity. In March of this year, Connecticut passed a bill expanding insurance coverage for fertility treatments used by LGBTQ patients. Schreyer said they’d also like to see changes in medical education to reflect the diversity of healthcare needs within the LGBTQ community, especially for gender-affirming care.

In the meantime, providers can change their forms to be gender inclusive and not be afraid to make mistakes and ask patients what their preferences are when it comes to their gender and the language they prefer, as well as what their fertility needs are. Ultimately, a commitment to LGBTQ inclusivity recognizes the individuality of each patient and their needs, rather than planting a rainbow flag outside the office and considering the work done.

“Right from the undergraduate level, we see there’s really poor education in terms of gender-affirming care, LGBTQ care and any kind of equity, diversity, or inclusivity within healthcare … and stigma and stereotypes are perpetuated,” Schreyer said. “Fundamentally, there needs to be change there in terms of valuing LGBTQ and gender-affirming care in order to shift the whole system.”