“I couldn’t have endured it [the pregnancy]but we were also concerned about the side effects of Depakote on the baby,” said Kaiser, now 47 and a resident of Lanham, Maryland. “That would have been my fourth child.”
Kaiser’s story reflects concerns that patients with disabilities — and the doctors who treat them — have access to abortion services in the weeks after the Supreme Court fell Roe v. calf.
People with disabilities — including psychiatric, chronic and physical — say they will be disproportionately affected by the loss of federal abortion protections and have been overlooked in the abortion access debate. Studies have found that they are more likely to be subjected to sexual violence – a situation that could lead to abortion – in addition to a higher rate of unplanned pregnancies and a higher risk of death during pregnancy compared to people without disabilities. In addition to topiramate and phenytoin, according to neurological studies, you can also take drugs known as teratogens that have harmful effects on pregnancy, including Depakote, which goes by the generic name valproate.
Doctors and patients worry that six-week abortion bans in states like Texas would criminalize abortion before patients realize they are pregnant and after they’ve already been exposed to teratogens. This is made worse by the fact that more than half of pregnancies in women with epilepsy are unplanned, said Jacqueline French, co-director of clinical epilepsy studies at NYU Langone Health’s Comprehensive Epilepsy Center.
“By the time the woman knows she’s pregnant, the damage is essentially done,” she said, adding that it’s safer for epilepsy patients to continue taking their medication to protect their own health than having a seizure while pregnant to risk. “We are really worried about the mother’s life.”
Woman says she carried dead fetus for two weeks after Texas abortion ban
Robyn Powell, an associate law professor at the University of Oklahoma, classified disabilities as any health condition, including psychiatric ones, that “significantly limits an important life activity,” noting that it falls under the Americans With Disabilities Act. She said some people with disabilities take medications that are harmful to pregnancy.
“If it was a planned pregnancy, someone would try to go off their medication,” said Powell, who has arthrogryposis, a disability that limits movement. “But if for any reason you have an unwanted pregnancy, I think that disproportionately harms people with disabilities.”
The effects of valproate and other teratogens are evident “very early in pregnancy,” said Marlene Freeman, a specialist in perinatal and reproductive psychiatry at Massachusetts General Hospital.
“The exposures before women even know they’re pregnant can be very serious,” she said. Studies have shown that potential effects of antiepileptic drugs on the fetus include spina bifida, cleft lip and autism.
French, the epileptologist, added that the risk of dying during pregnancy for a person with epilepsy is 10 times that for a person without epilepsy, partly because patients can stop their medications during pregnancy without consulting a doctor. She practices in New York, where she doesn’t expect restrictions on abortion, but French said she expects epileptologists across the country to hold discussions with patients about potentially reducing options if they have an unplanned pregnancy.
Lucy Hutner, a reproductive psychiatrist in New York City, said the Supreme Court’s decision should be overturned roe could harm patients with “serious and persistent mental illness” not only in terms of medication, but also in terms of social factors such as homelessness or limited access to health care.
“This is a specific demographic that already faces significant barriers to accessing medical services,” she said.
Women who spoke to The Post reflected on the risks of taking medication during pregnancy. Pam from Siler City, NC has epilepsy. The 55-year-old, who spoke to The Post on condition she only use her first name for fear of harassment, took valproate during her pregnancies more than two decades ago and gave birth to three healthy sons. She said she was warned of the drug’s risks and still took it to control her seizures, which continued throughout her pregnancy.
Pam said she worries about the limited options epilepsy patients will have afterwards roe was overturned.
“What would concern me is if they go into an investigation and find out [the fetus has] have a serious birth defect, but they want an abortion and they can’t,” said Pam.
Some states with abortion bans make exceptions when the mother’s life is at stake. But Powell, the legal scholar, said she expects that criterion to be “rigorously defined” and anticipates that doctors would be “very reluctant” to perform abortions where they are criminalized or restricted.
Some anti-abortion groups have, with exceptions, argued over whether people with disabilities should have abortion rights.
“Every applicable state pro-life statute expressly prohibits acts that will willfully cause the death of an unborn child,” Stephen Billy, executive director of the Charlotte Lozier Institute, an anti-abortion research group, said in a statement. “Physicians who prescribe teratogenic drugs to treat mental illness or chronic conditions do not do so to induce an abortion.”
Physicians face confusion and fear in the post-Roe world
Matt Yonke, spokesman for the Pro-Life Action League, said the anti-abortion The group does not advocate intentional termination of a pregnancy, but supports exceptions when the pregnant person’s life is in danger and the abortion occurs as an unintended, “sad side effect” of another procedure.
Some neurologists believe their epilepsy patients have been overlooked in follow-up.roe Discussion. Ima Ebong, an assistant professor of neurology at the University of Kentucky, posted a Twitter thread that went viral afterwards roe was overturned.
Hoping that we as neurologists and epileptologists can have a dialogue about the effects of reversal #RoeVWade and how it will affect ours #Epilepsy Patients taking anti-seizure medications that can cause birth defects.
— Ima Ebong, MD (@ImaEbongMD) June 24, 2022
She told the Post that some anti-seizure medications, such as phenytoin, can decrease the effectiveness of hormonal birth control.
“When that happens, contraception fails, and then the patient may actually be able to get pregnant,” Ebong said. In other cases, like the anticonvulsant lamotrigine, Ebong said, birth control can allow breakthrough seizures by lowering drug levels.
Post-Roe confusion spurs delays and denials for some life-saving pregnancy treatments
Back in Maryland, where Kaiser made that harrowing journey to a Planned Parenthood clinic nearly 15 years ago, she worries access to abortion will become more difficult for disabled people who subsequently become pregnant roe was overturned.
“I find it horrible to force someone who wants and needs an abortion to continue with a pregnancy,” Kaiser said. “I think it’s bad for any baby that comes into the picture. I think the decision is terrifying for women taking drugs like Depakote, who might want to decide, ‘I need to keep taking this drug and therefore I won’t be able to continue with the pregnancy.'”