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.”
Finally, a second Black employee, played by Punkie Johnson, explains that her mom has sickle cell and that after seeing her suffer “all these years, I can make her smile — with this Boogie Woogie Santa!” The audience erupts.
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.
Three prominent advocacy groups, the Sickle Cell Disease Foundation, the Sickle Cell Disease Association, and Sick Cells, put out statements condemning the sketch.
“It’s how they had the sickle cell characters: They made them look stupid, they made them look unintelligent,” said Ashley Valentine, head of Sick Cells, adding, “And the problem is that’s truly what we face.”
Mariah Scott, another advocate with Sick Cells and a patient herself, said the skit reminded her of being taunted by classmates for the yellowing of skin from jaundice, a common symptom. “The kids called me a witch,” she said.
Representatives for NBC did not respond to requests for comment. Nina Devlin, a spokesperson for Vertex, said the company was not contacted ahead of time.
Sickle cell is an inherited blood disorder that affects 100,000 patients in the U.S., the majority but not all of them Black, and around 20 million patients around the world. It can cause intense pain, damage organs, and dramatically shorten life. Yet patients have long faced discrimination in medical settings, including accusations from doctors that they don’t comply with existing therapies and that they fake pain to obtain narcotic drugs.
Valentine, who lost her 36-year-old brother Marqus to the disease in 2020, said she got a message Sunday morning from her father assuring her the sketch wasn’t that big of a deal. Later, she learned he had been upset since 4 a.m., woke up her mother to show her the skit, and just wanted to cushion the blow.
Her family, she said, had once been asked if Marqus was mentally challenged when they went into a hospital with him crying in pain. Another time when he was suffering from seizures, her mom was accused of Munchausen syndrome by proxy — a condition in which a caretaker is accused of faking a child’s illness — and Marqus was sent to a psychologist.
“Those two caricatures that they put on national TV is how people view us,” Valentine said.
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.
Sickle cell has been a punchline before. In the 2015 movie “Ted 2,” Mark Wahlberg knocks over a shelf at a sperm bank, and gets covered by sperm from sickle cell donors. “You’re covered in rejected Black guy sperm,” cracks Seth MacFarlane, the titular teddy bear.
Earlier this year, the comedian D.L. Hughley, in a “Daily Show” appearance, said Tucker Carlson was “so obsessed with Black people, I’m gonna start calling him sickle cell.” In Mindy Kaling’s Scooby-Doo spinoff “Velma,” Fred says he couldn’t remember Velma’s name because he has a condition where he can’t remember names of people who aren’t hot — or “sickle cell for rich people.”
Then, “right in the middle of the celebration, it’s ‘oh this again,’” said Jemela Williams, a sickle cell advocate in Missouri.
Advocates say they understand comedy has its place and not everyone in the community was opposed to the sketch. But some wondered if comedians would be so cavalier cracking jokes about other deadly conditions, such as cancer or cystic fibrosis. Shows have to at least have their facts straight, they said.
“I don’t necessarily believe that chronic diseases are off limits,” said André Harris, a sickle cell advocate and Ph.D. student in Texas. “[But] you should be held to some responsibility.”
The skit, he said, seemed to send a white savior message, with the McKinnon character acquiring and pushing the therapy onto Thompson.
And advocates have been fighting for years to educate the public and medical providers that Hispanic people are at heightened risk of sickle cell, that the disease is particularly common in India, and white people can get it. Harris pointed out that a disease that is known as a “Black disease” is also a disease that might get less government and institutional support.
Ironically, said Harris, many patients indeed would have passed on the gene therapies. It was the kernel of truth in the skit. Analysts estimate that, at most, around 20,000 patients will receive it. Many hematologists doubt it will even be that many.
Yet that’s for reasons not addressed in the sketch. The treatment is intensive and comes with significant risks, requiring potentially months-long hospital stays and jeopardizing patients’ fertility. With a $2.2 million to $3.1 million list price — though the actual price is lower — it’s unclear whether insurers and particularly state Medicaid plans will cover the cost.
Valentine said “SNL” could have punched up and spotlighted the barriers to accessing therapy — Medicaid, for example, denying coverage for sickle cell medicines or the disrespect many patients face in hospitals — as the show does on other issues. She noted the recent Bad Bunny appearance, in which the Puerto Rican reggaetonero called out the music industry’s tendency to not subtitle his songs during televised performances and instead write “Speaking in non-English.” (“Speaking a sexier language,” his SNL subtitles showed.)
“So if they want it to really capture sickle cell, they would have used their platform to highlight what needs to happen,” she said.
To correct the record, Valentine said she wanted “SNL” to open the show correcting the skit and explaining the severity of sickle cell. Brown, of the Sickle Cell Disease Foundation, said she hasn’t been in touch with NBC yet but planned to be soon.
“I’ve got a hammer in my hand right now and I’m ready to knock some sense into people’s heads,” she said, “about the reality of this disease and the suffering that happens.”