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Fertility Practices, Coverage Lacking for Transgender People

May 17, 2019, 9:38 AM

Insurers can expect an influx of claims for egg and sperm freezing from transgender patients who risk losing their fertility when they transition, and denying coverage may be at their peril.

Transgender people see themselves as aligned with cancer patients who also face infertility when undergoing treatment. Egg freezing was once considered experimental, but that changed in 2012 when it was reclassified as an elective procedure, opening the door for more use. That prompted both cancer patients and transgender people to think about how to prove to insurance companies that fertility preservation is part of medically necessary treatments that need coverage.

“A lot of the principles, obviously, are the same. It’s the same desire to maintain that option for patients before they have to undergo medical treatment that they need,” Joyce Reinecke, executive director of the cancer-focused Alliance for Fertility Preservation, said in an interview.

Transgender youth are now considering their fertility options, unlike previous generations who were focused on getting basic health care, said Dru Levasseur, senior attorney and director of the Transgender Rights Project at Lambda Legal.

But most transgender patients can’t afford the substantial costs out of pocket.

Fertility preservation of sperm for transgender women can cost up to $1,000 for collection and then up to $500 per year for storage, according to a 2019 study. Fertility preservation of eggs for transgender men can cost up to $25,000 for collection and up to $1,000 per year for storage. Those costs don’t include use of the preserved eggs and sperm if and when the person wants to have children.

There is “no question” that transgender patients would preserve their fertility if insurance covered it, Devin O’Brien Coon, medical director for the Johns Hopkins Center for Transgender Health, said. The current rate of transgender people who preserve their reproductive cells is so low that it would be hard to guess how insurance coverage would change that scenario, he added.

Less than 5 percent of transgender youth have pursued fertility preservation, according to a 2017 study. In contrast, about 25 percent of young adults with cancer did so, according to a 2010 survey.

Insurance Coverage

There’s a clear fertility risk profile for certain cancer treatments, but it isn’t as clear for transitioning procedures, Diane Chen, the behavioral health director for The Potocsnak Family Division of Adolescent and Young Adult Medicine at the Lurie Children’s Hospital of Chicago, said.

It’s commonly accepted as a fact that if a transgender person is on hormone therapy that their reproductive cells won’t work, but the research is scant, Maurice Garcia, director of the Transgender Surgery and Health Program at Los Angeles-based Cedars-Sinai Hospital, said. Genital surgery always renders someone infertile.

Transitioning health care, like hormone therapy and surgery, previously wasn’t covered because being transgender was seen as a pre-existing condition. The Affordable Care Act changed that, and the majority of commercial and government insurance providers cover some form of transitioning care for transgender people, O’Brien Coon said. But the majority do not cover fertility treatment, and employer plans rarely cover it, he added.

For large nationwide insurers, individual plan policies may vary. At Aetna Inc., for example, transgender fertility treatment is considered under each plan’s coverage of in vitro fertilization. IVF benefits are offered in some plans but not in others. “In general, for members who have coverage for assisted reproductive technology/IVF, fertility preservation coverage may be extended to transgender individuals,” the company told Bloomberg Law.

Smaller providers that have covered the treatment include Blue Cross Blue Shield of Massachusetts, Harvard Pilgrim Health Care, and Boston Medical Center plans.

Connecticut, Delaware, Illinois, Maryland, New York, and Rhode Island have mandated that fertility preservation be covered by state-funded insurers for people receiving medically necessary and fertility compromising procedures. Those laws are aimed at helping cancer patients, but they could apply to transgender patients, Chen said.

Rhode Island’s insurance commissioner confirmed to the ACLU of Rhode Island that their law mandating fertility preservation would apply to transgender individuals, but advocates see a possibility for court battles over that interpretation in all five states.

Some transgender patients have been able to get fertility preservation covered in California after the state’s insurance and managed care departments required providers to cover transitioning-related services, Reinecke said.

Litigation Limits

But litigating employer insurance disparities is difficult because of provisions in the Employee Retirement Income Security Act that say the lawsuits can only happen in federal court and damages are limited, Levasseur said.

State insurance laws don’t apply to the majority of employer plans, so lawsuits need to be filed in federal court, where the principle has yet to be tested according to a Bloomberg Law analysis.

These types of lawsuits would be based on prohibitions in federal and state law against discrimination in compensation in both employer-sponsored insurance and public insurance, Levasseur said. If a plan compensates for a hysterectomy for a woman but doesn’t do it for a transgender man, then the plan is not providing the same compensation.

Another potential obstacle is a rule released by the Trump administration May 2 that would allow health workers and hospitals to decline to provide medical treatment that conflicts with their religious and moral beliefs. The administration is also expected to release a rule that would roll back ACA protections for LGBT people.

Physical, Emotional Questions

There is a spectrum of opinions in the transgender community about fertility preservation, O’Brien Coon said. Some associate having biological children with their unwanted birth gender; some don’t. Others don’t know if they want biological children but want to preserve their options.

There are also different biological realities in the fertility preservation treatments, said Joshua Safer, executive director of the New York City-based Mount Sinai Center for Transgender Medicine and Surgery.

Transgender men have genital surgery less often than transgender women, and that means egg harvest is often feasible, Safer said. But egg retrieval is an invasive process that requires daily hormone-stimulating injections that transgender men often see as “female,” Chen said.

Some transgender women find the idea of producing a sperm sample too upsetting, but others are comfortable with it, she added.

Necessary Conversation

The three main medical guidelines for transgender health care—the WPATH Standards of Care, the Endocrine Society Clinical Practice Guidelines, and the American Society for Reproductive Medicine—all say that patients should have their fertility preservation options discussed prior to any interventions that impact fertility.

Studies have shown that pediatric cancer survivors who didn’t discuss their fertility options later had regrets, Chen said.

But fertility preservation for transgender youth is a “touchy topic because a lot of people think they’re too young to know” if they want to be biological parents someday, said Tony Ferraiolo, a transgender man who runs support groups for transgender youth and their families in Connecticut.

The vast majority of transgender health-care providers said they brought up fertility preservation with their patients, and most weren’t interested, according to a 2018 study. The fertility conversations may have just begun in the last several years, though. The majority of transgender people responding to a 2015 survey said they never discussed their fertility preservation options with a doctor.

Surgeons don’t necessarily have enough knowledge to have detailed conversations with their transgender patients about fertility preservation, Garcia said, so they don’t have the conversation at all. Transgender fertility lives at the intersection of multiple specialties, so a surgeon may not be able to talk about all the nuances of preserving fertility and what the best options are for a patient, he added.

“Any doctor who is going to see trans patients and is going to give them competent health care needs to be having that conversation with them,” Ferraiolo said.

To contact the reporter on this story: Shira Stein in Washington at sstein@bloomberglaw.com