In the 1972 TV movie To All My Friends on Shore, Bill Cosby plays an inattentive dad who goes about his jobs as a skycap and junk scavenger, set to a funk music–filled soundtrack. The workaholic ignores his son’s longing for connection, changing his ways only when the child is diagnosed with sickle cell disease (SCD).
The movie feels woefully outdated — from the live-only-for-the-moment hopelessness of the diagnosis to a doctor trying to solve the medical mystery by flipping through a medical book late at night while smoking a cigarette in his office.
Then there’s this year’s dazzling Supacell on Netflix, the latest major production that involves SCD, which has created a buzz in the sickle cell community. In the show, five characters — a delivery guy, a nurse, a gang member, a small-time drug dealer, and a financially troubled estranged father, all from South London — have a mutated version of hemoglobin S inherited from family members with sickle cell trait that gives them the powers of telekinesis, teleportation, invisibility, super strength, and time travel. They come together to use these powers to try, first, to save the life of the fiancée of the main character and then to free others from the clutches of people who seek to use the powers for some undefined, but seemingly evil, ends.
In a pop culture landscape in which SCD has surfaced in an array of story lines — from the maudlin tales of the 1970s to offensive references in comedy sketches — the depiction in the popular Supacell series is leaving the biggest imprint yet, say physicians, researchers, and patients with SCD. It reigned as number 1 on Netflix for a time and has been watched by tens of millions of people.
Improved Portrayals but Still Inaccurate
Those in the sickle cell community say the attention that Supacell has brought is welcome. At the same time, the series has produced a complicated response. In the end, some feel that the series is another example in a long history of SCD not being portrayed in a way that is empowering, or even particularly realistic: The defining scene of a person who actually has SCD — not just the power-giving mutation — is of a woman who is suffering in bed and has a pain crisis, creating a one-dimensional characterization that is not in line with most patients’ daily experience.
And for all its differences from the 50-year-old To All My Friends on Shore, there are still similarities: Black characters who are downtrodden and patients who are weak, they say.
For patients, “while they were overall happy that it was being talked about, being in the back seat a bit was disappointing,” said Vivian Sheehan, MD, director of translational sickle cell research and associate professor of pediatrics, both at Emory University in Atlanta. Still, she said, “I think this is unique in that it’s actually attaching something positive and strong to SCD.”
Titilope Fasipe, MD, PhD, co-director of the Sickle Cell and Thalassemia Program at Texas Children’s Hospital who has SCD herself, said the show has generated chatter among colleagues and patients, and she has come to be quite familiar with the depiction of SCD in the show, although she has not yet watched it.
“Even though there wasn’t any education about the disease,” she said, “people love Supacell — they love it. It is now in mainstream conversation, water-cooler conversation.”
The sickle cell community is keenly sensitive to pop culture depictions of the disease, which predominantly affects the Black community. Health care access and trust of the health care system are significant hurdles to treatment and are factors that can be shaped by media portrayals.
The six-episode Supacell was created by British rap musician Rapman, who has said he wanted to present SCD in a new light after first learning about it from a friend in college who had the disease.
“Sickle cell is something I never understood — like, why is there a disease that generally puts dark skin tones in a position of weakness? I never understood that,” he said on the radio show The Breakfast Club. “So I said, ‘I need to spin this on its head.’ I said, ‘How can I make this a thing of power? How can I raise awareness?’”
Wunmi Bakare, a recipient of a hematopoietic cell transplant who now champions sickle cell awareness through her Instagram series Candid Conversations, emphasized the importance of increased attention to SCD brought by Supacell but highlighted that there is still much more to accomplish.
“Rapman has done a commendable job of portraying SCD through a superhero lens, framing it as a superpower rather than a limitation,” she said. “However, it’s crucial for the writers to engage directly with patients and caregivers in a collaborative session. Their real-life experiences should inform the character development and narrative arcs to create a more authentic representation.”
In the only significant scene involving a patient with SCD, she said, “all we see are nurses running in.”
“We don’t really get an understanding of what is occurring or what is happening to her,” she said. “It was very surface level.”
But, she added, “I love that Rapman did that. Because for a British show on Netflix, you need it to do well in its first season so that there’s a likelihood you do get a second season done.”
She said she has higher hopes for subsequent seasons of the show.
“It was intelligent on his part to only keep it surface level, so that way the show appeals to most people,” Ms. Bakare said. “And then in the second season, you can start to peel back the layers of these characters and what informs the sickle cell experience, particularly as a family unit.”
Less Than Impressed
David Rees, MD, a pediatric hematologist at King’s College London, had a fairly lukewarm reaction to the show.
“It all right, I suppose,” he said. “From a sickle cell point of view, it hasn’t got much to do with SCD at all. The one person with SCD in it — the mother of one of the people — has a kind of unrealistic crisis or acute episode.”
But he added, “In terms of the general perception that sickle cell isn’t like a catastrophic thing and does have positive aspects, I guess it’s sort of promoting it.”
Although, the personal stories of the superheroes with the trait don’t come close to fully capturing the patient population he sees in London, he said.
“I’m a bit uncomfortable with the portrayal of the Black gang culture as being what sickle cell is about, really,” he said. “I know some of the parents are not very happy with the idea that these are young Black men being portrayed in what is essentially a gang and gang violence.”
Negative Messages, Stereotypes Persist
In a sense, the 1972 movie made more of an effort than Supacell to describe SCD to its audience, with the workaholic father, stunned by news of the diagnosis, telling his wife how the disease is congenital and how red blood cells get “shaped like a sickle, and they jam up the oxygen supply,” affecting an array of organs.
However, a sense of melancholy and defeat is woven all through the film, made well before today’s medical advances in SCD treatment.
“They say they’ll give him medicine and keep him quiet … make him stronger so he can hold out longer,” the somber father tells his wife. “We’re going to lose him, Serena.” Then, the character pledges to his son that he’ll now be “today people” instead of “tomorrow people.” At the end, he takes his wife and son out for a jaunt on a small boat that he bought with money he otherwise would have put toward buying a run-down house with dreams of restoring it to grandeur for his family. Even that scene has the tinge of doom, though, with an air of finality and no room for dreams or aspirations.
Other films in the 1970s had a similarly tragic feel, including Warm December, in which Sidney Poitier’s character falls in love with a woman and then learns she has the disease.
More recently, SCD has figured into a few popular medical shows. In Grey’s Anatomy, a surgeon reveals she was in a SCD clinical trial, but a colleague questions the veracity of her story along the way. In The Resident, a doctor questions whether a patient is just seeking pain meds, and she tells him her “hip feels like it’s on fire” and the pain “tears through me like shards of glass.”
Other depictions have come across as callous and oblivious to the struggles of people with SCD. In an episode of the cartoon Velma, a character says he has “a disease where I can’t recognize people who aren’t hot — my doctor says it’s basically sickle cell disease for rich guys.”
In a Saturday Night Live skit that aired shortly after the first gene therapies for SCD were approved by the U.S. Food and Drug Administration in 2023, work colleagues are participating in a white elephant gift exchange, and a white woman gives a Black man the gift of being signed up for these treatments. He exchanges it for a dancing Santa Claus toy.
Ms. Bakare voiced her concerns about the comedy show’s portrayal of a “savior complex,” saying, “While we appreciate the intent to raise awareness, the execution fell flat. It perpetuates the narrative that white individuals must rescue Black individuals, which is both problematic and reductive. The idea of gift-carding someone into a clinical trial is not only absurd but trivializes the serious nature of these experiences.”
Others agreed.
“That was the worst — we were furious about that,” Dr. Sheehan said. “That was viewed as incredibly disrespectful to the sickle cell community, punching down, making people with SCD look like foolish children who would prefer a toy to a meaningful therapy.”
In reference to a scene from the show Power Book II, Ms. Bakare pointed out the risk associated with the depiction of a character using cocaine the night before she takes her sickle cell medication.
“This storyline reinforces harmful stereotypes of drug-seeking behavior among individuals with SCD. Such narratives can endanger public perception and diminish the seriousness of our struggles with sickle cell symptoms,” she said.
Sending a Message of Empowerment
In Supacell, by contrast, those in the sickle cell community, by and large, have a train they want to board. The characters themselves might not have SCD, but they are linked to it. Despite this link, they are strong and on the right side of morality — much more in line with the way those with SCD think of themselves as “sickle cell warriors.” That is something that the sickle cell community can get behind, and show creator Rapman is to be commended for that, Dr. Fasipe said.
“He appears to be reachable,” she said. “He may not know about all the facets of the disease, but he’s setting the right tone. He wants to bring strength and a good visibility to the community, even if the storyline didn’t fully capture that, so I see us being more forgiving of Rapman.”
Patients, she said, “don’t have many visuals of themselves succeeding, and I want them to know things are possible.”
She said every media portrayal matters in one way or another.
“It always matters to be seen,” she said. When she was a teenager, the Lifetime movie For Hope featured someone with scleroderma, introducing her to the disease way before her medical education. She has never forgotten that.
“It had an impact on me,” she said. “Media makes an impression on people at any age.”
Influencing Perceptions
Just invoking the term “sickle cell” in a show or other media depiction brings an obligation for accuracy and some degree of sensitivity, those in the sickle cell community say.
“When you’re making a film and you’re trying to represent a period, a people, a culture, you’ve got to do your homework if they really exist,” Dr. Fasipe said. “If you made it up and it’s Star Wars land, fine, do whatever you want. But if it really exists in the world, if you’re incorporating components of the real world into your fantasy world, you need to be careful about the accurate representation.”
Dr. Sheehan said media portrayals can have serious long-term effects. In the late 2010s, the news program 60 Minutes did a segment on lentiviral vectors and compared them to HIV, and “for years afterward when I would try to talk about gene therapy, I had some patients or parents say, ‘I don’t want to get HIV.’”
“How we present things is really important — and understanding the background and the context of how those things are being received,” she said. “That did some harm.
“This hopeless attitude toward sickle cell these past few decades before we had gene therapy I think did influence funding,” she said. “It was viewed as a disease that wasn’t going anywhere. All we had was hydroxyurea, we aren’t advancing, developing new therapies like other areas — that it was just about pain. I do think that affected, consciously or not, the NIH (National Institutes of Health) funding.”
Ms. Bakare said that media depictions rooted in reality, and even a modest level of education, can reset the public’s understanding of SCD and would be a big step forward.
“I pray and hope that there is a day where if someone says ‘sickle cell disease,’ the average person’s baseline understanding of sickle cell is that it’s a blood disease that is inherited,” she said.
Despite the advances in treatment, the sickle cell field lagged far behind that of other medical conditions for decades, and more advancement is needed, those in the field say. Media portrayals can have meaningful effects in the overall progress of the field, and the messaging to patients can have real effects on their quality of life, Ms. Bakare and others said.
“We’ve only scratched the surface,” Ms. Bakare said. “As excited as we are about the media depictions — and media does play a very important role in overall awareness and perception of the disease — I think the community still has a long way to go. Now, people don’t have to navigate life thinking, ‘I’m going to die with this disease,’ but the reality is that not everyone will be eligible for a curative therapy.”
She said she would like SCD to have a place in the public consciousness that is on par with that of other diseases.
“If you notice how shows depict cancer, there’s a level of respect they have when they depict a cancer diagnosis that’s almost empowering when you watch it,” Ms. Bakare said. “So I wonder, if that level of decorum and respect is given to cancer, why can’t that same level of respect be given to other rare diseases, including sickle cell?”
