Aakash Dhage from Unsplash
Medical Definition of Rare
Rare diseases, as defined by the Cleveland Clinic, affect roughly 1 in 200,000 people. These diseases present unique challenges, including difficulties in diagnosis, community support, and securing research funding. Given the media’s significant influence, there is a strong opportunity to shape public awareness and drive funding for rare, often neglected diseases. Much of the public’s understanding of rare diseases comes not from direct experience but from media portrayals, making these depictions particularly impactful. (Domaradzki, 2022 p. 2)
The Media’s Portrayal of Rare
Occasionally, the same rare disease appears multiple times in the media. Sickle cell is depicted in The Pitt (2025 HBO) and Netflix’s Supacell (2024), while cystic fibrosis features in Five Feet Apart (2019) and Red Band Society (2014). Examining these recurring portrayals clarifies how the media shapes public perception and awareness, supporting the central argument about its influence.
However, not all depictions are created equal. “Consequently, it should not be surprising that rarely do the movies describe the clinical aspects of RDs, as they mostly focus on patients’ problems of daily living. Moreover, the scientific elements that do appear on screen are often presented for the sake of a script rather than medical education. (Domaradzki, 2022 p 9)
Intersections
Imagination fuels script inspiration, but real-life inequality persists beyond skewed media portrayals. One clear example comes from The Pitt (2025), known as “the most realistic medical show ever.” In season one, episode two, Joyce—experiencing a pain crisis—is wrongfully assumed to be drug seeking because she possesses morphine and is physically restrained. This highlights how bias distorts healthcare. The advocating doctor, knowledgeable about racial bias and part of the BIPOC community, ensures Joyce receives proper treatment for sickle cell disease, a condition primarily affecting the black community. After treatment, the understanding physician explains to her co-worker:
“(Sickle cell) has been described as an electrical stabbing pain and feels like someone’s flushing glass through your body. Don’t worry, you’ll get good at spotting the fakers, and all those people need is someone to listen to them and hear their story.”
To understand the significance of such portrayals, consider the realities of sickle cell disease. Sickle cell alters blood cell shape, impairing oxygen delivery. Pain crises—when patients may not show typical acute pain responses—are medical emergencies. Yet, care is not standardized, and treatment can suffer from distrust of reported pain (Anderson, Lien, Agwu et al., p. 3248). Assumptions about pain do not fit those with chronic pain.
The impact of these portrayals also extends beyond medical realities to questions of representation and power. Supacell takes a different approach. The show follows six individuals who inherit superhuman abilities from a parent with sickle cell (hemoglobin S). Its creator, Rapman, set out to address representation by asking, “How can I make this thing a power? How can I raise awareness?” (Collins) Using the superhero genre, Supacell both raises awareness of sickle cell and reframes the condition, empowering those affected.
Everyday Life
Representation of rare diseases alone has a limited ability to depict everyday life. This is due to pop culture’s agenda of entertainment mixed with established biases. As shown by The Pitt and Supacell, the media take different approaches to raising awareness of sickle cell. One prioritizes medical realism, while the other uses superpowers as a metaphor for social inequities related to conditions like sickle cell. Together, these examples demonstrate how media can influence both awareness and societal attitudes—central to understanding the power and limits of such portrayals.
References
Anderson, D., Lien, K., Agwu, C., Ang, P., & Baker, N. A. (2023). The Bias of Medicine in Sickle Cell Disease. J Gen Intern Med, 38(14), 3247-3251. https://doi.org/10.1007/s11606-023-08392-0
Ciribassi, R. M., & Patil, C. L. (2016). “We don’t wear it on our sleeve”: Sickle cell disease and the (in)visible body in parts. Social Science and Medicine, 148, 131-138. https://www.sciencedirect.com/science/article/abs/pii/S0277953615302410#:~:text=More%20broadly%2C%20this%20indicates%20the,of%20mundane%20relationships%20of%20power
Collins, T. R. (2024, December). Superhero and Villan. ASH Clinical News. https://ashpublications.org/ashclinicalnews/news/8215/Superhero-and-Villain
Domaradzki, J. (2022). Treating rare diseases with the cinema: Can popular movies enhance public understanding of rare diseases? Orphanet Journal of Rare Diseases, 17(117), 1-12. https://doi.org/10.1186/s13023-022-02269-x
What is a rare or orphan disease? (2024, September 13). Cleveland Clinic.