“Those two caricatures that they put on national TV is how people view us,” an advocate for people with sickle cell said about a "Saturday Night Live" skit.

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.

    • MicroWave@lemmy.worldOPEnglish
      61·
      7 months ago

      You see it as comedy, people affected by it see it differently:

      The skit hit particularly hard given the timing. It’s a vital moment for patients and advocates, as they both celebrate the arrival of two long-awaited therapies and prepare for a prolonged effort to ensure access.

      “It took something that was highly significant to a community that’s been really beat up over 100 years and made it into a big joke,” said Julie Kanter, head of the sickle cell center at the University of Alabama, who saw it after several colleagues emailed her incensed.