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Missourians experiencing infertility say insurance is a major hurdle to care

Angela Crawford, 38, hugs her daughter, Alexandria, 6, on Dec. 14, 2023, at their home Springfield, Mo. “I could not be happier,” said Crawford, who started an infertility support group after undergoing IVF to have her two children. “I’m in the best mental health of my life. And I want what I have for everyone”
Anna Spoerre
Missouri Independent
Angela Crawford, 38, hugs her daughter, Alexandria, 6, on Dec. 14, 2023, at their home Springfield, Mo. “I could not be happier,” said Crawford, who started an infertility support group after undergoing IVF to have her two children. “I’m in the best mental health of my life. And I want what I have for everyone”

SPRINGFIELD, Mo. — Angela Crawford was desperately trying to get pregnant when her niece was born.

The first time she held the infant, a cascade of tears fell. She quickly handed the baby back to her mother, fled to the bathroom and became catatonic. Loved ones tried to console her with well-meaning platitudes, but it was no use. She walked out her brother’s door with no shoes. Her family found her that evening sitting in a ditch near her Springfield home, distraught.

That night so many years ago is one she speaks of often today, usually to women just beginning their struggle with the weight of infertility that she and her husband suffered through.

“I have been at the bottom of this deep dark well, where you’re at now,” Crawford said she tells women who reach out looking for support. “And I will climb down there with you because I know the way out.”

Infertility – the inability to get pregnant after trying for a year or more – affects about one in five married women between the ages of 15 and 49 in America, according to the Centers for Disease Control and Prevention. Infertility can stem from a myriad of conditions from both men and women, and can cost tens of thousands of dollars to treat.

Crawford, 38, was eventually diagnosed with polycystic ovary syndrome. It’s the most common cause of infertility in the United States, according to the Endocrine Society. Thanks to in vitro fertilization, she and her husband were eventually able to have two children.

Infertility left her feeling isolated, and she suffered severe depression, suicidal ideations and crushing loneliness.

At some point, she realized she didn’t have to suffer alone.

So in 2018, she decided to start an infertility support group in Springfield through Resolve, a part of the National Infertility Association.

The group meets monthly, offering a lifeline to others trying to navigate an often grueling infertility treatment process — the countless dollars and hours spent at clinics, and, in many cases, staying tied to a job they don’t love in order to keep a good insurance policy.

Since starting the group, Crawford has met dozens of women. Some stay for a month, others for years.

While every story is unique, the throughline is loneliness and grief.

She gives them space to share intrusive, ugly thoughts aloud; to acknowledge that they can mourn at a baby shower or be angry when a loved one gets pregnant.

The journey is usually over, Crawford said, either when there’s a baby, the person runs out of money or they can’t physically and mentally take the pain anymore.

“There’s no off ramp. There’s no maintenance phase,” Crawford said. “It goes until something gives.”

A legislative fix?

In the last decade, the number of children born in the U.S. using assisted reproductive technology has doubled, according to the CDC. While the number of major corporations to offer infertility coverage has grown to include Walmart and JPMorgan, millions of Americans are still left to pay out of pocket if they can afford the care at all.

So far, 21 states mandate some form of infertility coverage, according to the National Infertility Association.

Missouri is not among them, but Rep. LaDonna Appelbaum, a St. Louis Democrat, hopes to change that.

Appelbaum for the second year in a row has proposed legislationthat would mandate insurance coverage for “the diagnosis and treatment of infertility including, but not limited to, in vitro fertilization, uterine embryo lavage, embryo transfer, artificial insemination, gamete intrafallopian tube transfer or zygote intrafallopian tube transfer, and low tubal ovum transfer.”

She said she filed the bill for a few reasons: A constituent struggling with infertility reached out asking for support in affording services; and her dear friend and a former state lawmakers, the late Cora Faith Walker, proposed similar legislation a few years prior, but it never got a legislative hearing.

Appelbaum herself experienced infertility, and she and her husband were never able to have a child.

“I will do everything I can in my power to make sure that if women want to have children that they can,” Appelbaum said, though she acknowledged it will be difficult without a Republican co-sponsor on her bill.

When a similar bill was heard in California, insurance companies opposed it, arguing it could increase premiums across the state, theAssociated Press reported. Appelbaum said no one has directly opposed her legislation.

The Missouri Insurance Coalition declined to comment on Appelbaum’s bill.

Appelbaum doesn’t think it should be controversial.

“It’s just wanting to bring life and love and hope into the world,” she said.

Crawford said Appelbaum’s bill would be a huge step forward, but there are still other hurdles left to address, especially for women in rural areas far from medical specialists.

A support group in Springfield, Mo

When Crawford started in vitro fertilization treatments in 2016, she had to take unpaid leaves of absence from work to make the 7-hour round-trip drive to St. Louis for procedures as simple as blood draws and as complex as egg retrievals. That care was not covered in Springfield, despite it being the third largest metro in the state.

She didn’t enjoy her job at the time, or feel sufficiently challenged or paid. But it offered the best insurance coverage she could find, so she stayed until she got pregnant.

“I had to sprint for years to play catch-up, whereas (my husband) had the ability to kind of go forth and pursue at his own leisure,” Crawford said. “But what if I didn’t have those same limitations and restrictions that handcuffed me? That hamstrung me?”

Now she said she’s in a better job with two healthy children and a happy marriage. But the pain is still fresh, and she uses that memory to help others.

In a quiet meeting room at a Springfield library branch in early December, Crawford doled out festive homemade macaroons and group member Jessica Cody, 32, passed around hand-sewn bookmarks.

“I can make all kinds of things, just not human at this point,” Cody joked as the women settled into their chairs.

Cody miscarried for the first time this fall.

“This is the most traumatic, depressing experience I’ve ever been through,” she told the other women.

Not having announced the pregnancy to begin with, she mourned in quiet ways.

She painted forget-me-nots for the child who could have been, whom she and her husband named Embryo #6. She avoided her pregnancy cravings – chicken tenders and macaroni and cheese; they make her sad now. And she posted art of a woman with a black heart over her uterus on instagram, a cryptic message of grief.

But at Resolve, Cody spoke candidly.

“There’s always going to be this shadow of grief over everything I do until I actually have a child in my hands,” Cody said. “I feel like I was robbed of that innocence of being able to be excited about being pregnant.”

She shared about learning on Google that postpartum depression is possible after a miscarriage but that bereavement leave doesn’t cover her loss. She recalled crying in front of the energy drinks at a gas station on her way home from her last ultrasound appointment. She worried that her husband, who has been her rock, needs his own community to grieve.

She shared how difficult it’s been to navigate IVF and her career, and lamented having to show up for work hours after the ultrasound where she learned her fetus did not have a heartbeat, only to encounter a colleague showing off a new baby.

She worried about trying to time her next embryo transfer with work projects and potentially having to self-administer shots on work trips. The other two women offered to hop on FaceTime to help talk her through it.

Cody said through the cramping, contractions and crushing pain of her miscarriage, which was assisted by prescribed medication, her empathy grew for women who have abortions.

“I had to have another person present to make sure I didn’t bleed to death,” she said. “Nobody wants that to be their form of birth control ever.”

One more embryo transfer

Ashley Cossins’ periods have always been painful and heavy. In 2014, after trying to get pregnant with her husband for more than a year, she learned it was because of endometriosis, which affects about 10% of all girls and women of childbearing age across the globe, according to the World Health Organization.

Nearly a decade later, and now 34, she’s undergone multiple surgeries, five rounds of IVF and miscarriages. She found a job that covers most of her treatments.

The closest specialist covered by her insurance is at Barnes-Jewish Hospital in St. Louis, more than 200 miles from her home in Greene County.

Cossins found an email for her local Resolve support group while searching for a therapist. Crawford replied almost immediately: “You are not alone. You’ve reached the right people. I’m sorry this is happening to you.”

By that point, Cossins had depleted her lifetime fertility insurance benefits available through her previous workplace, so Crawford helped her get a job with a new employer so the benefits could reset.

“There’s no room for us,” Cossins said. “There’s no grace. There’s no give, unless we demand it.”

Cossins again found out she had a non-viable pregnancy in early 2022, after a draft of the U.S. Supreme Court decision ending the constitutional right to abortion was leaked. Her doctor recommended a medical abortion that would soon be illegal in Missouri so they could collect and analyze the tissue in the hopes of learning more about what was causing her infertility.

Since then, Cossins has decided to run for the state legislature, motivated by the stigma and red tape she’s experienced throughout her infertility journey.

“It’s more like gambling than it is health care because you’re wagering significant amounts of money,” Cossins said. “And you might come out with nothing.”

She focuses on hope. It’s what pulls her to the pacifier aisle at Target, and what sends her home to cry over a glass of wine and a puzzle after she sees a cute baby.

Cossins administered her first progesterone shot right before the group met in early December. Her fifth and final embryo transfer happened a few days later.

She named the final two embryos Spirit and Opportunity, after Mars exploration rovers.

They are her world in a future that’s impossible to plan.

“Everything else,” she said, “just becomes so very small.”

This story was originally published by the Missouri Independent, part of the States Newsroom.

Anna Spoerre covers reproductive health care for the Missouri Independent.