this post was submitted on 20 Dec 2023
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Mary Brown was sipping coffee at home in Ontario, Calif., Sunday morning when a friend sent a video clip that ruined her breakfast.

It contained a skit from “Saturday Night Live” the night before about the new gene therapies for sickle cell disease. In it, workers gather for an office white-elephant-style gift exchange. A white employee, played by Kate McKinnon, gives a Black employee with sickle cell, played by Kenan Thompson, enrollment in “Vertex Pharmaceutical and CRISPR Therapeutics’ exa-cel program for sickle cell anemia,” explaining that it was a cure and she had an in with the company to get ahead on the waiting list.

Thompson thanks McKinnon, hugs her, and then, to audience laughter, explains, “I’m just going to swap this out for a Boogie Woogie Santa” — a singing, trumpet-playing Santa figurine. Another white employee gets the cure, but explains he or a family member won’t be able to use it because “my whole family is white.”

...

Brown, the longtime director of the Sickle Cell Disease Foundation, was irate.

“To see sickle cell as a joke — it was very distressing,” she said. “I have seen people die. I have been to too many funerals.”

Brown was far from alone. The sketch reverberated around the sickle cell community the next morning. To many advocates, patients, and doctors, it seemed to perpetuate falsehoods and stereotypes that had harmed sickle cell patients and held back progress for decades: that sickle cell was strictly a “Black disease”; that patients didn’t or couldn’t make responsible decisions about their own disease — and would, for example, choose a Santa toy over a curative therapy.

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[–] [email protected] 3 points 11 months ago

would, for example, choose a Santa toy over a curative therapy encouraged by their government which has a history of illegally and unethically experimenting on them without consent

There's been lots of folks in the US with colored skin or low income who would have had dramatically better outcomes with a Santa toy, than with the treatments they were offered. Sources

It's awful, but many are making this additional risk/reward decision every time they seek medical care.

Choosing to trust after being betrayed so horribly can be really hard.