How doctors are pressuring sickle cell patients into unwanted sterilizations

[WhiskeyGrinder]

https://www.statnews.com/2024/05/21/sickle-cell-patients-steered-toward-sterilization-for-decades/

People with sickle cell disease tell a different story. 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. 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.

It’s hard to know how often this happens, but of the 50 women with sickle cell interviewed for this series, seven reported being sterilized with questionable consent — and physicians say they’ve directly heard about dozens of other instances. The pattern extends across at least seven states, surgeries taking place at the hands of different OB-GYNs, who often frame it as a way of keeping mothers safe. Some occurred decades ago. Others were as recent as 2017 and 2022.

(snip)

“Definitely not standard practice,” said Cara Heuser, an OB-GYN in Utah who specializes in complex pregnancies and is a spokesperson for the Society of Maternal-Fetal Medicine, when asked about that recommendation. There are some tumors and cancer-associated genetic mutations that might have warranted discussing such an extreme procedure, but Mitchell didn’t have a family history of the cancers in question, and at her age, the benefits of keeping one healthy ovary outweighed the risks.

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.

[Hekate]

1. For those unaware of who might have sickle cell disease: Black people. This is effing racist.

God damn. When is this country ever going to grow up.

[hlthe2b]

3. Even more horrific, given we are on the verge of a breakthrough in treatment with gene therapy.

Unbelievable that any physician/geneticist or other would be pushing sterilization NOW... The $$$ $$cost is what holds us back, sadly.

On Dec. 8, 2023, the U.S. Food and Drug Administration approved(Link is external) (Link opens in new window) two sickle cell disease gene therapies for people 12 and older, describing them as “milestone treatments” for the red blood cell disorder. Roughly 100,000 Americans are living with sickle cell disease.
https://www.uclahealth.org/news/article/new-gene-therapy-sickle-cell-disease-has-been-long-time

[Hekate]

4. Even worse for the woman, yanking the ovaries as was done on a 30 y.o. sets off menopause...

…decades too early, with huge health implications.

I can’t even.

[electric_blue68]

5. Woah, I hope the cost can be driven down...

...I know it's a bad disease.

But besides the pain aspect which I remembered.. I didn't remember, or know some of the other severe, to deadly effects of it! 😔

Goid luck for more, and way less expensive treatments.

[flying_wahini]

2. That's just even more terrible when they have now found treatment for sickle cell with gene therapy.

[link:https://www.nhlbi.nih.gov/news/2023/nih-statement-new-fda-approved-gene-therapies-sickle-cell-disease|

Today, the U.S. Food and Drug Administration (FDA) approved two gene therapies for the treatment of sickle cell disease in patients 12 years and older. About 100,000 Americans and millions of people external link around the world have sickle cell disease external link , a hereditary disease common among those whose ancestors come from sub-Saharan Africa, Mediterranean countries, India and the Middle East.

And cystic fibrosis is next.

[Solly Mack]

6. ...