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Beyond the 'abortion pill': Real-life experiences of individuals taking mifepristone

2024-11-23 12:27:20 Contact

For a while, it was known as RU-486. It's called Mifeprex or mifepristone – but many know it as "the abortion pill." It is one of two drugs – along with misoprostol – that are used in more than half of abortions in the U.S. now. And it is the subject of a federal court case that could make it illegal.

As attorneys gather in New Orleans this week at the 5th Circuit Court of Appeals to argue whether this medication should be removed from the market all over the country, NPR asked people to share their experiences with using mifepristone. More than 150 people responded.

The stories illustrate how mifepristone is indeed an "abortion pill" — but it also plays other important roles in people's lives.

Many people wrote about how they took the medicine in treatment of a miscarriage. Others used it as part of their fertility journeys. Physically, taking mifepristone and misoprostol was a seriously painful experience for some and caused few symptoms for others. Some said they had never been more sure of any decision, others wrote that they still weren't sure if they made the right call.

Here are some of the ways people who wrote to NPR used mifepristone.

A treatment for recurrent miscarriages

"I knew – going into trying to have children – that there might be something different about me," says Larissa Adams. Family members alluded to the fact that getting pregnant was hard for women in the family. For instance: "My grandmother got married at 19, but didn't have her first kid until she was 35."

When her first pregnancy in 2017 ended in a miscarriage at ten weeks, she was devastated. "We thought that was going to be the end of it," she says. "We spent the next four or five years getting pregnant regularly and then – miscarriage after miscarriage after miscarriage."

She eventually figured out exactly how she (and, probably, her grandmother) are different than other people. "I have what's called a balanced translocation – essentially, one of my chromosomes is missing a little chunk on the 13th chromosome and it's moved on to the 14th," she explains. "It doesn't impact me aside from reproduction, because a large number of my eggs don't have either a 13th or 14th match-up chromosome."

For several years, she and her husband kept trying to get pregnant. "Every other month I was getting pregnant and, hitting about 10 to 12 weeks, just the same telltale signs [of miscarriage]," she says. Each time, she needed an intervention to complete the miscarriage, and she would first try mifepristone and misoprostol – sometimes she also needed a dilation and curettage procedure. That's a surgical procedure, known as a D&C, that clears the uterus. It is also used in abortions.

Eventually, Adams and her husband spent $42,000 to try to get pregnant via in vitro fertilization – of 24 fertilized eggs, only one was viable. Doctors transferred the embryo into her uterus and hoped it would implant. "And by sheer luck – I've always wondered, are we the luckiest people in the world [or] have the worst luck? – it stuck," she says. "We have a three-year-old and she's totally healthy."

Adams says she's grateful in all those years of miscarriages that she had medication to take to speed the process so they could try again.

"When you fall into the world of pregnancy loss, you become so familiar with mifepristone and all of these medications – it becomes this second language," Adams says. "It's been so bizarre to hear this reach a national conversation level and to hear courts discussing this and politicians discussing this [...] as if it is a dangerous tool or a dangerous drug that threatens people's lives."

She wants people to know mifepristone is sometimes used as "part of the puzzle of people having families."

Selena Simmons-Duffin

Accessibility in remote places

For many women in rural areas, access to abortion clinics can be difficult, even in states where it's legal. Long drives and the multiple doctors' appointments needed for surgical abortions can be prohibitive.

In mid-2020, with the pandemic in full swing, a woman named Rebecca learned she was pregnant. (She asked that NPR use only her first name because many of her family members are unaware of her abortion.)

At the time, she and her husband had been married for about two years. Neither of them wanted to have children, she said, and watching her sister experience multiple difficult pregnancies helped to solidify that decision.

"I've seen the absolute carnage it has caused her. She has had so many health issues from the pregnancies. It's taken away her body from her," she said. "For me, that's something I've never wanted to do."

She was using an intrauterine device, but it failed. "I took the pregnancy test and pretty much had a meltdown. I was just sitting there, shaking," she said.

While the decision to get an abortion was easy for Rebecca, it was not as easy to actually get one. Her husband was then in the armed forces, so abortion wasn't covered by their insurance. (Federal law prohibits TRICARE, the military health insurance program, from covering abortion care.) And they were stationed at a base in upstate New York, more than an hour's drive away from the nearest sizable city. Even there, the local clinic that provided abortions was operating at reduced capacity due to pandemic-era safety measures, making appointments difficult to get, she said.

Once she had an ultrasound, she was able to get a prescription from a telehealth service and received the mifepristone by mail. She took the pill, and the misoprostol that followed, in her own home with her husband.

"Being able to do that was a godsend," she said. Many of her family members oppose abortion rights, she added. "Being able to do it in the privacy of my home and not having to explain anything to anyone is the biggest part of it."

In 2021, the FDA formally lifted some of the regulations around mifepristone to allow the drug to be prescribed and dispensed by mail, rather than in-person in a clinic or hospital. That decision to expand access to the drug is one subject of the oral arguments being heard this week.

Becky Sullivan

Privacy during difficult situations

When Alexandra was 21, her then-boyfriend was so emotionally abusive that for years her family referred to him as "Voldemort" – a reference to the Harry Potter villain. (NPR is using her first name only because she has professional concerns about sharing this story.)

"He was controlling. He isolated me. He took my self-esteem down to nothing," said Alexandra.

His abuse hadn't turned physical, but there were warning signs that it was headed that way, she said. After two years together, Alexandra was depressed, struggling with school and unable to see a way out.

Then, one day in 2007, she saw an ad on TV for an at-home pregnancy test. Although she was using birth control, she still felt a powerful flash of anxiety: Could she be pregnant?

She went to the pharmacy to buy a test, which came back positive. "I immediately was like, 'I can't have this baby. I can't,'" Alexandra said. Racing through her mind, she said, were thoughts about school, her future career, her life dreams and more than anything else, her abusive boyfriend.

"If I have a child with this guy, I'll never get away from him," she recalled thinking.

In 2007, the FDA's approval of mifepristone covered its use up to seven weeks of pregnancy. Alexandra had discovered hers early enough but had no time to waste. A surgical abortion was less appealing than the medication, she said.

She wasn't yet ready to tell her parents, and the time away needed for a D&C would be more conspicuous, she thought. Using mifepristone "was very much a no-brainer for me," she said.

She took mifepristone at a doctor's office, then went home to take the misoprostol. The next year, she was able to leave the abusive boyfriend. Soon after, she enrolled in law school and has since had a successful career as a lawyer.

"I have never once thought, 'What if?'" she said. "Even now, as I'm 37 years old and I'm not married — I thought that I would have a family, but it's really not looking like it's in the cards — I still don't have any regrets whatsoever."

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Control over when and where to experience a miscarriage

Michelle Brown and her fiance were planning their wedding when they learned she was pregnant. Though their first reaction was panic – they wanted kids, but thought it would happen after the wedding – it soon turned to excitement, though, she said, and they welcomed the pregnancy.

But around eight weeks, she learned that the embryo wasn't growing; she was having a miscarriage.

Medical staff told her she could take a combination of mifepristone and misoprostol to prompt her body to expel the tissue. Or she could wait for her body to pass it naturally, they said.

At first, she chose to wait. But at the time, she was a professor at a university about an hour's drive from her home in New Orleans — a commute that involved driving long distances over bodies of water, where it could be dangerous to pull over in case of emergency, Brown said.

Over the next week, she spent every commute feeling racked with dread. "I was really afraid. Like what if it happens now?" she said. "I was doing what I could to prepare, but I was still feeling a lot of fear."

Soon, she asked her doctor to prescribe the pills. Her fiance then worked in retail, and their only day off together was Sunday. She was able to time the medication so they could both be home together as her body passed the tissue.

Brown says the whole experience made her aware of how many things were outside her control, despite all the planning she had been trying to do.

Even though she and her fiancé had decided to keep the pregnancy, it had still upturned her life, she said — only to then upturn it again when she found out she was miscarrying.

For Brown, being able to choose when and where to close such a turbulent and emotional chapter was a salve. "Being able to be like, 'This is not going to upturn my life anymore, because I can make this decision,'" was "the big thing," she said.

Brown and her now-husband got married a few months later. They've since had two children, a 7-year-old and an 8-month-old baby.

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A nonbinary person's experience

As a teenager in the mid-2000s, Mel Cody had never heard the term "nonbinary." Cody was assigned female at birth, but struggled through their teenage years with feelings of body dysphoria, they said. "I didn't know what it meant, because I didn't want to transition into a man. I didn't want to be a dude, but I also didn't feel like a woman," Cody said.

Cody also had undiagnosed autism, and their teen years were difficult and at times traumatizing, they recalled. "Puberty was awful. I developed breasts very early, and that was pretty life-ruining, honestly," they said. "Terrible things happened to me being autistic and read as femme."

Beginning their freshman year at the University of Colorado, Cody hoped the new setting could be a fresh start. But soon after they started dating someone, they became pregnant.

The pregnancy triggered a body dysphoria so acute that Cody considered killing themselves, they said. "That was in the back of my head if they turned me away. That was my next choice," they said, recalling the trip to Planned Parenthood.

"I've struggled on and off with suicidality since I hit puberty, basically, just because I don't feel right," Cody said. "It is a devastating thought to think of my body changing any more."

A doctor at the clinic talked Cody through the options: keeping the child, adoption, surgical abortion or a medication abortion. "I was in university full time, I was working full time. I needed something where I could just take a weekend," they said.

"Being able to take control of an unplanned pregnancy and choose to not have it was probably the first time I ever got to make choices about what happened to my own body for myself," Cody said. Afterward, the clinic also helped them with birth control, which allowed Cody to stop having periods for the first time.

That experience helped to show Cody that they could change other things about their life and body, they said — their clothes, their haircut, whether to shave their legs — instead of following society's expectations for feminine bodies.

"I don't have to dress myself up like a doll to exist in this world. I can be me and exist. And I think having an abortion gave me that gift of knowing that I can control my own body to some degree," they said. "And I'm so much happier now. I feel so much more right in the world."

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If you or someone you know may be considering suicide or is in crisis, call or text 988 to reach the Suicide & Crisis Lifeline.

A chance to keep caretaking

Dawn's first pregnancy was complicated from the beginning. She spent the last few weeks of it in the hospital with severe preeclampsia, a serious condition that can be deadly. Her daughter was born prematurely, at only 29 weeks. "She weighed less than 2 pounds," Dawn explains. (NPR is only using her first name because she fears family and professional repercussions from sharing her story about mifepristone.)

Her daughter was in neonatal intensive care at the hospital for more than three months after birth. "I ended up having to quit my job as a teacher to take care of her full time – she needed around-the-clock nursing care. I spent most of my time in that year trying to keep her alive, taking her to different doctor and specialist appointments, taking her to feeding therapy and just trying to figure out which way is up."

When her daughter was less than a year old, in the fall of 2017, Dawn discovered she was pregnant again. "In that moment, I knew that it would be physically, emotionally, mentally devastating for us – financially too, because we are just barely squeaking by on one income in Brooklyn at the time," she says.

She and her partner agonized over the decision – she made an appointment at Planned Parenthood, canceled it, then made another appointment. "Then I finally went – I had to go by myself because we didn't have child care for our first child," Dawn says. "We were the only ones to care for her because of all of her complex needs."

Dawn chose to have a medication abortion so she could avoid having a procedure in a medical setting. "I was carrying a lot of the weight of having spent weeks and months in a hospital, first as a patient and then visiting my daughter in the NICU every day or so," she explains. She wanted to be at home. The experience was "unpleasant," she says – she didn't sleep for a night, and had heavy bleeding a few weeks later that frightened her, but turned out to be fine, she says.

"Honestly, I feel like it saved my life," she says of the abortion. "I can't imagine how our lives would have ended up had I not had that option." She and her partner did have a second child years later, when her first child was older and in school and they were ready.

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