WASHINGTON — Five years ago, Hilary Ferrell learned that she and her husband were carriers for a rare, fatal genetic condition. This was just after they had lost their daughter, who had spent two months in the neonatal intensive care unit before she died.

Ferrell and her husband are both federal employees. She’s been working at the IRS for over a decade and met him in the building. After their daughter’s death, the couple wanted to have another child, but they knew that natural conception could endanger the baby if it inherited the genetic trait.

To ensure their next child would be unaffected, they underwent genetic testing with in vitro fertilization, a common artificial reproductive procedure. Ferrell was able to get the testing covered as a medical benefit, and her insurance plan even paid all of her daughter’s NICU stay. But when it came to IVF, she was on her own.

“Especially for people with genetic testing issues, there are a lot of moral and ethical things that people just don’t want to touch,” Ferrell said in an interview with Federal Times. “They don’t want to touch that with a ten-foot pole.”

As more than 2.1 million federal employees prepare to make benefit elections during the annual open enrollment season that starts Nov. 14, some families are scrambling to sift through more than 200 plan options to find infertility coverage that applies to them.

Ferrell’s story speaks to the debate on Capitol Hill and across the country over how much the government should be involved with women’s health, a controversy inflamed by the Supreme Court’s 5-4 decision to overturn Roe v. Wade in June and by politicians running for election. Voters see reproductive rights at stake in this week’s midterm election, the outcome of which could determine issues such as access to contraception or fertility treatments.

What is in vitro fertilization?

In vitro fertilization is a medical procedure in which mature egg cells are removed from a woman, fertilized with male sperm outside the body, and inserted into the uterus of the same or another woman for normal gestation. The first human was conceived with IVF in 1978.

IVF has been the focus of moral, ethical and religious debate since then, with opponents decrying the destruction of human embryos harvested but not used for implantation. But in cases like Ferrell’s, IVF and testing may be the only way to have control over whether an implanted embryo develops in a healthy manner, doctors say.

Physicians can perform several kinds of preimplantation testing to select the healthiest, most viable embryo to transfer into the uterus. To do so, they biopsy an embryo and send the specimen off for genetic testing, said Dr. Jennifer Eaton, director of the Women & Infants Fertility Center in Providence, Rhode Island.

To pay for her IVF procedure, which costs tens of thousands of dollars, Ferrell and her husband talked about picking up a part-time retail or food-service job that might offer better coverage.

But after determining that federal employee health insurance was their only option, Ferrell ended up financing her out-of-pocket IVF treatment with the life insurance money she received from her daughter’s death.

“We complained at the time,” she said in the interview. “We sent letters to OPM, we sent letters to representatives, even the ones in Maryland saying ‘this is really ridiculous the way that you guys have written fertility coverage.’ To feel like nobody’s listening or that there’s not a human that’s really considering it can be really devastating.”

Politicization of women’s health issues

Women’s health issues have been historically steeped in politics, said Lisa Campo-Engelstein, director of the Institute for Bioethics & Health Humanities at the University of Texas Medical Branch. That, she said, could help explain why there’s a lack of comprehensive infertility coverage.

“I think there’s also some concerns with the moral status of embryos, and when people undergo IVF, they often have surplus embryos,” she said. “And what should we do with those? It raises all sorts of ethical questions.”

Those questions only heightened after the Supreme Court overturned the constitutional protection to an abortion on June 24 in its decision on Dobbs v. Jackson Women’s Health Organization.

“It’s going to become even more of an issue with the restrictions on abortion that are coming through,” said Eaton of the Women & Infants Fertility Center. “Those who are not in support of reproductive choice are trying to push back the beginning of life as early as possible, like from the time that a sperm fertilizes an egg, which means it puts our patients in jeopardy in terms of their ability to have IVF down the line.”

If new abortion legislation defines personhood from the start of fertilization, “the door is opened to regulation of embryos in the IVF laboratory,” according to an Obstetrics and Gynecology report authored by several doctors.

This was top of mind for Kelly Haertjens, a federal contract specialist who struggled to get IVF fully covered by her health plan. She had a successful IVF birth before she came to the public sector and planned to wait a few years before trying again.

“I was kind of worried and felt like I needed to rush doing another round rather than waiting a few years because of everything going on with Roe v. Wade,” she said in an interview. “That made us feel even more hopeless.”

Shadow looms over federal infertility health insurance coverage

The issue has also caught the attention of the White House and Congress in recent months.

In August, Rep. Gerry Connolly (D-Va.) and 23 other Democrats wrote a letter saying federal employee health plans offered limited infertility treatment options that were “prohibitively expensive.”

In October, the White House Office of Personnel Management, which acts as the human relations department for the federal workforce, unveiled four new plan options that will provide some form of assisted reproductive technology, or ART, for a total of 18 FEHB plan options in 2023.

Those are offered by carriers Triple S-Salud, UPMC Health Plan, Indiana University Health Plan, Foreign Service Benefit Plan, and Health Net of California Southern.

One new plan option, under CDPHP, will provide a non-FEHB benefit for discounted ART.

Those new offerings are worth celebrating, some said.

“This is an unprecedented expansion of federal health care benefits,” said Connolly in a statement to Federal Times. “Members of Congress and our constituent federal employees were heard in this process. The federal government can and should be a leader on health care benefits, which helps us recruit and retain talent for the federal workforce.”

“This is the most activity that we’ve seen around this issue with OPM,” said Barbara Collura, president and CEO of RESOLVE of the National Infertility Association, a patient advocacy nonprofit. “...This is a really big shift.”

Collura said the government has recognized that comprehensive health care is an important factor for recruitment and retention of the federal workforce.

In its 2021 call letter to insurance companies, OPM encouraged FEHB carriers to provide coverage for standard fertility preservation procedures for patients diagnosed with “iatrogenic infertility,” which is common among cancer patients who experience infertility due to chemotherapy, surgery or radiation, though it can also be caused by other medical interventions.

“Expanding iatrogenic is great, but that’s really a very small segment,” said Campo-Engelstein. “Depending on the numbers you look at, one in eight women experience infertility just naturally. [Iatrogenic] is really not addressing that at all.”

Campo-Engelstein’s research found that many insurance companies, even in the private sector, do not fully cover infertility or fertility preservation treatments because they are experimental, do not treat an underlying disease but rather produce a desired outcome, or are an elective procedure, not a medical one.

As of 2020, more than two-fifths of large U.S. employers offered coverage for IVF treatment.

“We’re starting to see more [infertility coverage], but it is still nowhere near what I think federal employees want to see,” said Kevin Moss of Consumers’ Checkbook, a nonprofit consumer advocacy group. “Individual employees who need infertility coverage are still going to be on the hook for a lot of out-of-pocket, even with plans that are offering more than maybe what they have in the past.”

What’s covered by FEHB plans, and what’s not?

The FEHB program requires all carriers provide the essential health benefits established in the Affordable Care Act. And there are minimum requirements established in the FEHB Program Act for health benefit plans to be offered by insurers.

Beyond that, OPM receives proposals from carriers and bilaterally negotiates the benefits and rates offered as choices to FEHB program members, the office said in an email to Federal Times.

“ART procedures are extremely expensive,” an OPM spokesperson said. “Health plans that offer this coverage may be selected against. That is, individuals who may need this procedure will select a plan that offers this service, inflating the cost and the premium of that plan.”

OPM is actively encouraging plans to offer ART within their benefit packages if they can find a cost effective way to do so while maintaining competitive rates. If they cannot, OPM said plans can offer discounts to FEHB members. All FEHB plans provide coverage for the diagnosis and treatment of infertility.

“If you are in the FEHB program in any plan and you have infertility, you can receive medical care” said Edward DeHarde, deputy associate director for OPM’s Federal Employee Insurance Operations. “You will receive a diagnosis. There will be some treatments available within your plan.”

For plan year 2023, OPM is requiring all FEHB carriers to provide coverage for standard fertility preservation procedures for patients experiencing iatrogenic infertility, including infertility associated with medical and surgical gender transition treatment.

Not all procedures related to infertility are covered, however.

“For the majority of people experiencing infertility, it is not due to cancer or gender reassignment, and to exclude the actual expenses for retrieval of the eggs and sperm is a slap in the face,” said Jen, a federal employee who asked not to disclose her full name. “I looked forward to seeing the new coverage that would be in effect for next year, but now I feel insulted that they added little to nothing.”

Jen said she enjoys her job, but is actively looking for a new position outside of government, in part because of poor infertility coverage under her plan.

“It is very disappointing because I like the job I do, and I am very good at it, but am forced to choose between starting a family and staying with the government,” she said. “The government recently added many parent-friendly leave options, however those of us who face infertility do not get to benefit from them.”

She and her husband have so far paid for two intrauterine insemination procedures and all the associated medications out of pocket, even though they have health insurance and live in a fertility-coverage mandated state.

Benefits for all, fertility for some

Federal employees have taken to online forums and support groups to lament another year of federal benefits that they say scantly provide for infertility.

Part of the challenge is that the FEHB plans must be responsive to the needs of the majority of the federal workforce, said a former OPM senior executive in a phone interview, who asked not to use their name. The demographics are skewed toward older employees at or near retirement, and away from those of child-bearing age.

More than 43% are 50 or older, OPM numbers show.

“So when you’re talking about a team at OPM that is negotiating with the carriers every year to make a plan that is as affordable as possible and responsive as possible to the federal workforce, they’re really doing their job” to make those plans affordable with what they include, the executive added. “... It’s just more expensive on the FEHB plans sometimes because the plans aren’t designed or negotiated, more importantly, to be supportive of a young population.”

A single IVF cycle can cost on average around $12,000 dollars, depending on the patient’s individual medication needs.

RESOLVE and other women’s health groups have said while IVF and ART may have an initially high bottom line, studies indicate that including comprehensive fertility coverage may actually reduce costs over time. Consumers lacking coverage may resort to riskier and less effective options, which when successful, can result in premature and multiple births that can be more expensive in the long-term.

Laws mandate state insurance coverage, not federal

The University of Texas’ Campo-Engelstein also said the laws are just now catching up with what the medical community already knew: that infertility treatments are not just nice-to-have bonus benefits.

“Much of medicine today is focused on quality of life, not just life saving,” she said.

As of June 2022, 20 states have passed fertility insurance coverage laws, 14 of which specifically include IVF coverage. Twelve states have fertility preservation laws for iatrogenic infertility. Last year, the city of Pittsburgh began offering employees two cycles of IVF, saying monthly employee insurance contributions will not rise for those using the benefit.

And most of the existing infertility coverage is at the HMO level because of state mandates, said Moss of Consumers’ Checkbook.

“Unless OPM mandates, it’s going to be catch-as-catch-can in terms of what what certain plans are offering,” he said.

And as for the Ferrells?

Ferrell’s IVF was a success. She and her husband now have two daughters, ages 8 and 3. Neither are affected by the genetic condition their parents carry.

“She’s our rainbow,” Ferrell said. “I wanted to show our oldest daughter that we’re not giving up. You can fight it, you can beat it, you can overcome really dark, challenging times.”

Molly Weisner is a staff reporter for Federal Times where she covers labor, policy and contracting pertaining to the government workforce. She made previous stops at USA Today and McClatchy as a digital producer, and worked at The New York Times as a copy editor. Molly majored in journalism at the University of North Carolina at Chapel Hill.