Diabetics in America are accustomed to indifference and discrimination. Before insulin was first synthesized a hundred years ago, we were condemned to “starvation diets” and an excruciating death. For too many this is still reality. When gestures towards caring are made, coverage coalesces around white, wealthy, thin, type 1 diabetic celebrities, usually for wearing medical devices that are unaffordable to most. Democrats use us to campaign, while making deals that benefit pharmaceutical companies behind closed doors. The major diabetes nonprofits take donations from the same insulin manufacturers price gouging us. As many as 40 percent of Americans who died from covid had diabetes, and diabetics were 48 times as likely as non-diabetics to have become unhoused during the pandemic. Many erroneously assume diabetics of all types “did this to ourselves.”
Now, Roe v. Wade has been overturned, and those of us living in states where most abortion procedures are illegal, who can become pregnant, who have diabetes, must endure another threat to our existence. We’re no longer living in the Steel Magnolia days of the 1980s, but for those of us whose health condition leads to high-risk pregnancies, getting knocked up is a dangerous endeavor.
Pregnancy Is Particularly Dangerous for Diabetic People
Samantha Leon and her husband decided they wanted to have a baby after four years together, when she was 22. “I’d never had any health issues or problems in my life,” she told me, “so I was just like, ‘OK, let’s have a baby!’” They got pregnant right away, but at 15 weeks Samantha received an urgent call at 7 a.m. from her OB-GYN, who was on vacation, to discuss her blood work. A1C isn’t a test routinely performed on non-diabetic pregnant people in their first trimester, but miraculously, someone in the office had accidentally ordered it, and the results clocked Samantha’s A1C at 12.5 percent: undiagnosed diabetes.
Diabetics currently make up about 11 percent of the U.S. population—a group of roughly 37.3 million (8.5 million of whom don’t even realize they’re diabetic). One recent study found non-diabetics who got covid were 40 percent more likely to develop diabetes within the year, so it seems more will be joining our astronomically expensive club. For the uninitiated, A1C is a way to measure someone’s average blood sugar level over the last three months. A non-diabetic’s A1C stays below 5.7 percent, and it’s recommended that a diabetic have an A1C of 6.5 percent or less before becoming pregnant to decrease the risk of negative outcomes for the gestating parent and their baby. Samantha’s A1C was just about double that.
Samantha went to a high-risk OB right away, who initially thought it was a mistake, according to her (ridiculous) assessment that someone who looked like Samantha couldn’t have diabetes, as Samantha recalled. A blood test quickly revealed Samantha was type 1, which the doctor explained meant she didn’t have any insulin in her system for the most crucial part of pregnancy. “By that time we already knew that it was a girl. She already had a name,” Samantha said. Still, she had to wait until she was 20 weeks along to get a scan to determine whether her undiagnosed diabetes had affected the pregnancy. In the meantime, unable to get an endocrinology appointment for a month, she was learning to dose insulin from other diabetics.
At 20 weeks, the scan revealed a serious case of congenital hydrocephalus (a condition associated with maternal diabetes): The fetus’s brain had a fluid buildup that prevented it from growing correctly. “There was something wrong with her heart, too,” Samantha said, “but the hydrocephalus—clearly you could see that her head was not formed.”
In California, where she lives, Samantha had under four weeks to decide if she wanted an abortion. After considering the risk of stillbirth or severe medical complications, and the confusion and expense of navigating a new condition—or as she told me, “what would be the least traumatic”—Samantha and her husband decided to end the pregnancy at 23 weeks, right before California’s cutoff.
To have the best chance at positive pregnancy outcomes, those of us diabetics who are healthy enough to carry a child go through an expensive, time-consuming, and emotionally exhausting process to conceive. Blood glucose that is not optimally controlled can lead to problems for the pregnant person and the fetus that, according to the Centers for Disease Control and Prevention, include birth defects, an extra large baby, C-section, preeclampsia, early birth, miscarriage, and stillbirth. Staying pregnant when faced with these complications can jeopardize our lives. Abortions can save our lives.
Until recently, Celeste, a type 1 diabetic and high school teacher living in Missouri, was content never having children. Now she’s the last one of her siblings likely to reproduce and is considering it, but she knows it’s highly risky for her to get pregnant as a Black diabetic woman—because of the diabetes, and because all Black pregnant people are five times as likely to die from cardiomyopathy or blood pressure disorders as their white counterparts. “After I was diagnosed and found out how hard it is to be a diabetic and pregnant, that really scared the hell out of me,” Celeste, who requested to be identified by her first name only, said. She felt it would be impossible to meet the target blood glucose for pregnant people she had read about online.
Another main concern, if she became pregnant right now, would be miscarriage. Presenting as a Black disabled woman having a miscarriage could put her at increased risk for police intervention in Missouri, if she was suspected of having an illegal abortion. Only 15 minutes from Illinois, an abortion haven in the Midwest, Celeste considers herself relatively lucky. For now, she assumes she’d have the means to travel to have an abortion if she needed one, but she questioned, “If something were to happen—what then? If I can’t make it over to the border?”
As of this writing, 4.9 million diabetics live in a state where abortion is almost completely banned, and just over 8 million live where abortion is heavily restricted. (Even where state bans allow for exceptions if the pregnant person’s life is in danger, hospitals have already prevented life-saving abortions in the month since Roe fell.) Doctors often invoke a strong fear of the health consequences of “uncontrolled” diabetes during pregnancy in those of us who wish to become pregnant. Not having access to abortion is a contradiction to the medical advice we routinely receive.
Doctors also drill into those of us who are menstruating that we must be on birth control, emphasizing again the potential negative outcomes associated with unplanned pregnancy. Syd, a type 1 diabetic living in Minnesota who “very much” does not want children, considers their birth control an essential medication. It’s not just that “kids are hard,” as Syd, who asked to go by their first name only, told me. “It was just something I never thought was in the cards for me—aside from the medical shit! Like, now I know my body is a shop of horrors!” Syd has diabetic kidney disease, which puts them at higher risk for covid complications, and for irreversible kidney damage if they become pregnant. They’re also Black, trans, and in a queer interracial relationship, which adds to the complexity of navigating a pregnancy with trans rights and body autonomy under attack. “I don’t… super love my IUD,” they said. “I like it for its purpose. It is the best for my body right now given the fact that I have to be on birth control.”
But conservatives, riding the momentum of their anti-abortion victories, want to further expand their fascist agenda and reduce access to birth control; nearly 200 House Republicans just voted against making birth control access a right. Needless to say, without birth control, more people would become pregnant. Without Roe, more pregnant people, diabetics among them, will die.
Being Diabetic Is Massively Expensive in America
In 2017, the total national cost of diabetes in the U.S. was over $327 billion—Elon Musk and Jeff Bezos would have to combine their fortunes to cover this bill. The list price for a vial of the commonly prescribed insulins Humalog and Novolog hovers around $274 and $289 respectively, according to the manufacturers. Four out of five diabetics have gone into credit card debt to cover insulin. On top of insulin, diabetics have to pay for insulin-resistance drugs, syringes, test stips, glucose meters, alcohol swabs, candy and glucagon for lows, continuous glucose monitors and insulin pumps (if we’re lucky), and regular doctors’ appointments. Those who are low income are more likely to have a higher A1C, and therefore higher chances of adverse outcomes in pregnancy. Black, Indigenous, and Latinx people are more likely to have diabetes than whites, and more likely than whites to be covered by Medicaid. Of the 20 states that have banned or heavily restricted access to abortion, nine have not expanded Medicaid. It is expensive to be diabetic, just as it is expensive to become a parent, in a country that fails to provide substantive support for either.
Before Kat Schroeder was a software engineer, she worked as a server at a restaurant. In the summer of 2010, she discovered her employer failed to inform her about their open enrollment period, and her Cobra coverage from a previous job was going to run out. She got a plan that cost $750 a month with the help of her parents, but it had a $7,500 deductible, no prescription drug coverage, and no durable medical equipment coverage, essentially only useful for a catastrophic hospital stay. Kat is type 1 diabetic, and in what she described as a “frightening hand-to-mouth situation,” she inconsistently received spare insulin from a friend who took nearly full vials home from the hospital she worked at, instead of throwing them away. While Kat was rationing insulin, there was a delay in her birth control prescription refill. Kat found out she was pregnant four weeks later.
“My boyfriend asked me what I wanted to do,” said Kat, “and I told him, ‘I don’t think I have a choice here.’ My OB-GYN has always told me that I need to think of pregnancy as a two-year process. I was like, ‘I’m totally uncontrolled right now. I can’t even afford the insulin I need for myself.’” She was able to get a medical abortion and spent the night “in agony” from the cramping. The next morning, the restaurant called her in for a shift, and she went. “It’s not like you can tell your manager, ‘I’m in the middle of an abortion, I cannot come in today.’”
As many as 62 percent of insulin-dependent diabetics risk their lives rationing a hormone that costs less than $6 to produce, which affects every part of their body at once, down to a cellular level. “When I talk about my [abortion] story, I don’t always talk about the insulin rationing aspect of it,” Kat told me. “To me, it doesn’t matter why your decision is being made. The fact that you don’t want a child is enough.”
Samantha and her husband conceived again after she recovered from her abortion at 23 weeks, and after a relatively uncomplicated pregnancy, she gave birth to a baby boy. Samantha told me she used 80 percent more insulin during pregnancy to keep her blood sugar in range: up to 200 units a day. That equates to roughly six vials of insulin a month, which comes with a list price somewhere in the range of $1,650, but can be more depending on the type and brand. (Some diabetics routinely use six or more vials a month and therefore would need substantially more than Samantha during pregnancy.) Samantha is pregnant again, due to give birth to a second child any moment. For the last two months of pregnancy she went in for scans twice a week, arranging childcare for her son because covid prevented him from attending the appointments with her—another cost incurred.
Before LitHub editor, mom, and type 1 diabetic Jessie Gaynor and her husband attempted to conceive, they made sure to have $30,000 to $50,000 set aside. “I think that a non-diabetic pregnant person, if things are progressing smoothly, will have maybe two to three ultrasounds,” Jessie said. “I had like 12, and I had to pay out of pocket for all of them.” In Jessie’s third trimester she was taking three times her normal amount of insulin, something she said was luckily covered by her insurance. When her daughter was born via cesarean she had low blood sugar—as do roughly half of babies birthed by diabetics—and spent three days in the NICU. According to a 2013 study from Ireland, due to emergency cesarean deliveries and admissions to NICUs, pregnancies in those with gestational diabetes were 34 percent more costly than non-diabetics.
Jessie told me being diabetic and pregnant meant accepting a lot of expensive medical intervention: “It takes a lot of it out of your hands and puts it in the hands of a medical establishment that many diabetics have reason to feel skeptical about.” She felt she had no other choice. She wanted to have a baby. So did Samantha, who also had to up her insulin intake during pregnancy. But those of us who cannot afford to keep ourselves healthy in this capitalist hellscape cannot possibly afford, in terms of money or health, to gestate against our will.
Diabetes Awareness Is Too Low in Post-Roe America
For chronically ill and disabled people, it is terribly hard to imagine a scenario where the government, the medical community, or anyone else actually attempts to protect and care for us in the face of abortion bans. And there are significant challenges to organizing both within and outside the diabetes community. Rampant anti-Blackness has caused many Black diabetics to self-sort away from the mostly white insulin activism space, and non-diabetics do not seem to have noticed that the end of Roe will fall hard on us—indifference we are accustomed to. If they didn’t care when we were rationing our Novolog and Ozempic, why would they suddenly care about the increased risk of us carrying a pregnancy against our will?
Kat helped create a system at her local DC Abortion Fund, known as DARIA, to streamline the process of getting people money for abortions; it has been implemented by a half dozen other abortion funds. She is also working with Mutual Aid Diabetes (MAD), a supply-sharing and crowdfunding network I helped organize, to upgrade its system so that in addition to insulin and diabetes medications, MAD can help diabetics access emergency contraception and abortion pills. But aside from efforts like these, diabetics in the U.S. are reminded constantly that their right to life is not protected, while pregnant people are being shown how cruelly abortion bans will worsen their care if complications arise.
Last year, Kat went to an OB to discuss egg freezing options so she can have a child when the time is right. About a week later, she had a heart attack (unrelated to her diabetes) that forced her to pause her plan. While she recovered, she sought out a high-risk OB in her area to talk about the risks of getting pregnant down the line with her pre-existing kidney disease and retinopathy. She recalled he told her, “We’ve seen women’s kidneys often regain some function if they lose it during pregnancy, but with your eyesight, once it’s gone, it’s gone. So you’ll have a much higher likelihood of going blind during pregnancy, and there’s no recovering from it.” Her OB added that with the recent heart attack, she would be in the highest of high-risk categories for pregnant people. “He just couldn’t recommend it, which was very upsetting,” Kat said.
Kat is currently on heart medications that should not be taken during pregnancy, so I asked what she would do if she were to become pregnant right now. “My best option would be an abortion, and it’s a little scary to know that,” she said. Soon enough, her best option may not be an option.
Zoe Witt is a Seattle-based freelance writer covering chronic illness and disability. You can find their work here, and follow them on Twitter and Instagram.