HORROR: Investigation reveals women with sickle cell disease pressured into sterilization

A STAT News investigation has found that women with sickle cell disease have been pressured and coerced into sterilization as recently as 2022.

In the series, STAT News journalists interviewed 50 women with sickle cell disease, and seven reported having been sterilized with “questionable consent,” while still more indicated they had been pressured towards sterilization. “Some describe OB-GYNs pushing them to get sterilized when they aren’t sure that’s what they want, and are still considering having more kids,” the outlet reported. “Some say they would not have agreed to tubal ligations or other procedures if they’d received more accurate information. Others felt their doctors steered them toward these surgeries without offering or explaining less invasive alternatives.”

Teonna Woolford, CEO of the Sickle Cell Reproductive Health Education Directive, said coerced sterilization has been an ongoing problem. “They felt pressured into getting their tubes tied, because their doctors just felt they should never get pregnant,” she said.

Hematologist Payal Desai has had patients told they needed to be sterilized, too; Desai added, “I had a lady probably the first week I started here, she was from rural South Carolina, and they’d essentially told her — mandated her — to have a hysterectomy when she was in her late teens, early 20s. Like: ‘You have sickle cell disease, you can’t have a child.’ It. Blew. My. Mind.”

READ: Woman commits suicide after husband and his parents coerce her to abort second daughter

One woman, Tonya Mitchell, said she was told to get a tubal ligation because she could merely get her tubes “untied” later if she changed her mind, even though tubal ligations are considered permanent. Instead, however, when one of her ovaries was found to be dying, doctors told her to just have both removed as the other would likely fail as well.

Cara Heuser, an OB-GYN in Utah who specializes in complex pregnancies and is a spokesperson for the Society of Maternal-Fetal Medicine, told STAT News this was “definitely not standard practice.” But Mitchell’s doctors went even further:

Nobody told Mitchell she was about to go through menopause at 30. She remembers burning up at night, having to step outside into the snow in a tank top, shorts, and bare feet, though the cold could trigger a pain crisis. She didn’t register what was going on until she called the doctor and was told, yes, hot flashes are normal when you no longer have ovaries. She’d understood beforehand that the double surgery would mean the end of her childbearing, but there hadn’t been much discussion.

For weeks, she grieved. She’d always wanted more than two kids. But it was deeper than that: She’d emerged from the anesthetic haze to learn that they’d taken out her uterus, too. She wondered if a man would ever want to be with her again. “I just felt like I wasn’t a woman anymore,” she said.

Sickle cell disease, a blood disorder affecting hemoglobin, is known to cause complications in pregnancy. But those complications, if they are experienced, are different for each woman. Yet the complications are framed as a certainty as a way to pressure women into being sterilized, according to Lydia Pecker, interim director of the Johns Hopkins Sickle Cell Center for Adults. “There’s this counseling, in sickle cell disease in general, when patients are doing something that a clinician doesn’t agree with. I call it the Sickle Cell Death Threat, which is like: ‘If you don’t do X, you are going to die,’” she said.

In a follow-up article, STAT News reported that at least some of the sterilizations were covered by Medicaid.

Forced or coerced sterilization is, unfortunately, not new. People with disabilities have regularly been sterilized, either against their will or after being coerced into it — and it is still legal in 30 states. Prison inmates in states like California and Tennessee have likewise been sterilized in recent years, often without the women’s knowledge or consent beforehand. Ultimately, it’s another eugenics ploy to keep people considered “undesirable” from having children — and as this investigation has shown, it’s not a problem of the past. It’s still happening today.

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