How Netflix’s Supacell boosts sickle cell disease awareness

This year, odds are a little bit better that people around you actually realize that September is National Sickle Cell Awareness Month, and we have a new Netflix hit about five ordinary people from South London who develop superpowers to thank for this increased visibility. 

The characters in Supacell are all from different walks of life. They don’t have much in common except for the fact that each carries the sickle cell trait, which lies dormant until it suddenly mutates, giving each character superhuman abilities and changing the course of their lives in different ways.  

I’m a little bit late to the party on this series. Several others have already written about how the show’s origin story is a “fresh take on a real world problem” that’s putting a spotlight on sickle cell disease. But the disease has been a professional passion of mine for a long time.

I’ve treated many patients with sickle cell disease, witnessing firsthand the struggles they face transitioning from pediatric to adult care and dealing with pain management. My work with organizations like the Baton Rouge Sickle Cell Foundation in Louisiana has only deepened my commitment to improving care and access for those affected.

So, I’m genuinely excited by the buzz this show is generating: It’s putting a lot of focus on a disease that few people know about, even though data on sickle cell disease show it affects more than 100,000 Americans and shortens their estimated life expectancy by 20 years.

The show’s success raising broader awareness of sickle cell disease is important for several reasons.

Sickle cell disease is an inherited blood disorder that mostly affects Black people. Children are born with the disease when they carry two copies of the sickle cell gene – one inherited from each parent.

If one parent has the sickle cell gene but the other doesn’t, their child will have the sickle cell trait, but it won’t lead to any symptoms, except in rare circumstances. If both parents carry the gene, then there’s a good chance their child will be born with sickle cell disease.

According to the National Library of Medicine, about 1 in 13 Black babies in the United States are born with sickle cell trait; they are able to lead symptom-free lives. About 1 in every 365 Black babies are born with sickle cell disease and will exhibit symptoms.

The disease causes red blood cells to become hard, sticky, and C-shaped. Because of their unusual shape, these sickle cells have a hard time moving through smaller blood vessels. The blocked blood flow can cause severe pain and serious health problems. In addition, these cells die early, leading to shortages of red blood cells, which carry oxygen and nutrients throughout the body.

Just as the “supacell” in the Netflix series gives each of the five characters different superpowers, sickle cell disease can take several forms and impact people in many different ways, as the Centers for Disease Control and Prevention explains.  

Right now, there is no cure. There was a time when a baby born with sickle cell disease wouldn’t have been expected to live to adulthood. 

Today, advancements in treatment mean that those with the disease are much more likely to live into their 50s. But early detection is an important factor in improving the odds of longevity. Because the disease is genetic, children are born with it, but symptoms don’t typically appear until they are around 5 or 6 months old, so it’s important to get start planning an effective care strategy early.  

As of 2007, every child born in the United States gets tested. According to the Cleveland Clinic health library, that level of awareness, early diagnosis, and timely treatment has significantly reduced the number of children who die from the disease in our country. 

At Blue Cross and Blue Shield of North Carolina (Blue Cross NC), a sickle cell diagnosis automatically prioritizes a member for our Nurse Support Program team. Because no two cases of the disease are the same, managing the disease can involve a complicated array of treatments that may include blood transfusions, pain management, antibiotics to protect against infection, gene therapies, and other strategies. 

Lifestyle choices are also critically important. The key point is this: Care for sickle cell disease requires a coordinated team effort, and personalized care management can help members stay on top of things and ensure that they have the resources they need to minimize the pain and disruption the disease can cause.

Awareness is also important for people with the sickle cell trait. Even though, in most cases, they’ll never experience medical complications because of the gene, intense physical activity or activities at high elevations that demand more oxygen than normal can sometimes trigger symptoms. Also, people with the sickle cell trait should be aware of their condition to make informed reproductive decisions, since two parents with the trait will stand a greater chance that their children will be born with the disease.

Having a popular, mainstream series exploring the theme of sickle cell disease will go a long way toward dispelling the cultural biases that have long been attached to the disease.

There are many factors that have contributed to the stigma of sickle cell disease. And as the Journal of Pain points out, “Patients with sickle cell disease (SCD) experience stigma because of their minority status, frequency of their acute healthcare utilization, and chronic use of opioids for pain management.” 

Because the disease affects young people, it can lead to excess absenteeism, undermine academic success, and inhibit participation in social events – all of which can contribute to feelings of social isolation and exacerbate the mental health and education challenges that students typically feel.

Stigma is a significant barrier to care:

• It can discourage someone from reaching out for support when they need it.
• Shame or embarrassment can undermine quality of life and well-being.
• Stigma in health facilities can contribute to biases that negatively affect diagnosis and treatment, leading to poor health outcomes.

Supacell illustrates how we can start to change the narrative. It doesn’t naively suggest that carrying the sickle cell trait makes life ideal for the main characters. In fact, like the disease, having superhuman strength complicates their lives in many ways. But audiences are connecting with and relating to these characters. That empathy is critical to the learning process – and it helps that the characters are pretty cool, too. 

One of the distinguishing symptoms of sickle cell disease is jaundice – a yellowish discoloration that’s often most evident in the whites of the eyes, but which can also affect skin tone and mucus membranes. For many patients, the discoloration is a source of embarrassment – an outward marker of difference that contributes to stigma and low self-esteem. 

In the series, that source of embarrassment becomes a source of strength: Anytime the supacell is about to manifest itself as a superpower, the character’s eyes turn a fierce yellow. As with jaundice, this process isn’t always predictable. It’s not something the characters know how to control, and at first, it’s scary. But they learn how to cope, adapt, and transform difference into an asset.

Awareness drives the research funding and philanthropic investments in programs that close gaps in chronic disease management. Unfortunately, many Americans have heard little about sickle cell disease, and – by some measures – research around it faces underfunding. 

Sickle Cell Disease Awareness Month is an important time of year because it’s an opportunity to generate more interest, drive more investment, and propel more action.

So why am I so excited about a television show this year? Well, in 2018, when the BBC (British Broadcasting Corporation) broadcast an episode of the hit series Call the Midwife that focused on the main characters helping a family with sickle cell disease, England saw registrations for new blood donors spike during the broadcast hour. Hopefully, that kind of success will repeat itself with this show’s popularity.

Entertaining stories can be a powerful educational tool, and knowledge has real-world impacts. When fans get emotionally drawn to fictional characters, they get invested in the issues those characters deal with.

Call the Midwife generated a healthy dose of tangible action – and that was just one episode. Just imagine what’s possible with the influence of a show like Supacell, which has earned a 100% score on Rotten Tomatoes (as of this writing), attracted millions of views across six episodes, hit the top slot on Netflix’s top 10, and has been renewed for a second season. 

Supacell sure is fun entertainment, but I’m betting it’s going to stir up a lot of positive energy that’ll end up making a real difference.