Missourians experiencing infertility say insurance is a major barrier to treatment

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

When she held the baby for the first time, tears fell. She quickly handed the baby back to her mother, fled to the bathroom and became catatonic. Loved ones tried to comfort him with well-intentioned platitudes, but to no avail. He walked out of his brother’s door without shoes. His family found him that night sitting in a ditch near his Springfield home, distraught.

She talks about that night so many years ago often today, usually to women who are just beginning their struggle against the weight of infertility that she and her husband bear.

I’ve been at the bottom of this deep, dark well, where you are now, Crawford said she tells women who reach out for support. And I’ll climb down there with you because I know the way out.

Infertility, the inability to conceive after a year or more of trying, affects about one in five married women ages 15 to 49 in America, according to the Centers for Disease Control and Prevention. Infertility can be caused by a number of conditions in 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 eventually had two children.

Infertility left her feeling isolated and she suffered from severe depression, suicidal thoughts and overwhelming loneliness.

At some point he realized that he didn’t have to suffer alone.

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

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

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

Although each story is unique, the common thread is loneliness and sadness.

He gives them space to share disturbing, ugly thoughts out loud; acknowledge that they may grieve at a baby shower or be angry when a loved one becomes pregnant.

The journey is usually over, Crawford said, either when the baby is born, the money runs out, or she can no longer physically and mentally take the pain.

No ramp. There is no maintenance phase, Crawford said. It goes until something gives.

A legislative fix?

According to the CDC, the number of children using assisted reproductive technology in the United States has doubled in the past decade. While the number of big companies offering infertility coverage has grown to include Walmart and JPMorgan, millions of Americans still have to pay out of pocket if they can afford treatment.

So far, 21 states have mandated some form of infertility coverage, according to the National Infertility Society.

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

For the second year in a row, Appelbaum has proposed legislation that would mandate insurance coverage for infertility diagnosis and treatment, including but not limited to in vitro fertilization, uterine embryo flushing, embryo transfer, artificial insemination, fallopian tube transfer or zygote fallopian tube transfer. tubal transfer and low fallopian tube transfer.

He said he filed the bill for a few reasons: A constituent struggling with infertility reached out and asked for support in providing services; and her dear friend and former state legislator, the late Cora Faith Walker, proposed similar legislation a few years earlier, but it never received a legislative hearing.

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

“I’m going to do everything I can to make sure that if women want to have children, they can,” Appelbaum said, though he acknowledged it will be difficult without a Republican co-sponsor in his bill.

When a similar bill was heard in California, insurance companies opposed it, arguing it could raise premiums statewide, the Associated Press reported. Appelbaum said no one has directly opposed his legislation.

The Missouri Insurance Coalition declined to comment on the Appelbaums’ bill.

Appelbaum doesn’t think that should be controversial.

It just wants to bring life, love and hope into the world, he said.

Crawford said Appelbaums law would be a huge step forward, but there are still other hurdles to overcome, especially for women in rural areas who are far from medical experts.

Support group in Springfield, Mo

When Crawford began IVF treatments in 2016, she had to take unpaid time off work to make the 7-hour round trip to St. Louis for procedures as simple as a blood draw to as complex as an egg retrieval. This treatment was not covered in Springfield, despite being the third largest metro station in the state.

He didn’t enjoy his job at the time, or he didn’t feel it was sufficiently challenged or paid. But it offered the best possible insurance coverage, so she got pregnant.

I had to sprint for years to play catch up, while (my husband) was able to kind of go ahead and chase on his own time,” Crawford said. But what if I didn’t have the same restrictions that handcuffed me? It bothered me?

Now, he said, he is 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 the Springfield library branch in early December, Crawford handed out festive homemade macarons, and group member Jessica Cody, 32, passed around hand-stitched bookmarks.

I can do all kinds of things, but not people 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 have ever gone through, she told the other women.

Without announcing the pregnancy at first, she mourned in a quiet way.

She painted unforgettable ones for the child that could have been, which she and her husband named Embryo #6. She avoided her pregnancy cravings for chicken nuggets and macaroni and cheese; they make him sad now. And she posted a picture of a woman with a black heart in her womb on Instagram, a cryptic message of mourning.

But at Resolve, Cody spoke openly.

Everything I do will always have this shadow of sadness until I have a child in my arms, Cody said. I feel like I’ve been robbed of the innocence of being excited about being pregnant.

She said on Google that she learned that postpartum depression is possible after a miscarriage, but bereavement leave does not cover her losses. She recalled crying in front of energy drinks at a gas station on the way home from her last ultrasound appointment. She worried that her husband, who had been her rock, would need his own community to mourn.

She described how difficult it was to navigate IVF and her career, complaining that she had to show up to work after an ultrasound where she learned her fetus didn’t have a heartbeat, only to be confronted by a colleague showing off a new baby.

She was worried about trying to schedule her next embryo transfer around work projects and possibly having to administer the shots herself while commuting. Two other women offered to jump on FaceTime to help him talk it out.

Cody said that through the spasms, contractions and excruciating pain of a miscarriage, helped by prescribed medication, her empathy grew for women who had abortions.

I had to have another person there to make sure I wasn’t bleeding, she said. No one wants that to be their form of birth control ever.

Another embryo transfer

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

Almost ten years later and now 34 years old, she has undergone several surgeries, five rounds of IVF and miscarriages. He found a job that covers most of his 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 the email to her local Resolve support group while searching for a therapist. Crawford responded almost immediately: You are not alone. You have reached the right people. I’m sorry this is happening to you.

By then, Cossins had exhausted the lifetime fertility insurance benefits available through her previous job, so Crawford helped her get a job with a new employer so the benefits could be reinstated.

We don’t have the space, Cossins said. There is no mercy. Won’t give unless we demand it.

Cossins found out again that she had a viable pregnancy in early 2022 after a draft of the US Supreme Court decision ending the constitutional right to abortion was leaked. Her doctor recommended a medical abortion, which would soon be illegal in Missouri, so they could collect and analyze the tissue in 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 bureaucracy she experienced during her infertility journey.

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

He focuses on hope. It draws him to the pacifier aisle at Target and what makes him come home crying over a glass of wine and a puzzle after seeing a cute baby.

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

He named the last two embryos Spirit and Opportunity after the Mars explorers.

They are in the future of his world, which is impossible to plan.

Everything else, he said, becomes only so small.

This story was originally published by Missouri Independentpart of the States Newsroom.

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