Controversy over the new movie, “Five Feet Apart,” starts with its title, which relates to a real health guideline recommended for people who have cystic fibrosis (CF), a rare disease affecting the lungs and digestive tract.
To guard against potentially fatal infections that patients can transmit to one another, the guideline recommends that people who have CF stay six feet apart. The teen couple at the center of the film meet at the hospital dare to be closer than six feet apart and another star-crossed romance begins. Critics have compared the story to Romeo and Juliet and not always in a complimentary way. Gunnar Esiason, a prominent patient in the CF community, has been among the most outspoken.
“There’s really nothing romantic about cystic fibrosis, especially in a time when we’re seeing the rise in a multidrug resistant infection spread from patient to patient across the globe amidst a worldwide antibiotic crisis,” he wrote on his blog several months before the movie’s release.
Esiason more recently tweeted that the filmmakers “totally tuned out any criticism they received from the patient community.”
On the other side of the debate, some patients who have CF attended viewing parties for the film and supported it in social media. The filmmakers have said they took pains and consulted patients to accurately portray characters who have the disease. The Cystic Fibrosis Foundation, which wasn’t involved in the film’s production, released a statement saying it was “hopeful that the movie will provide a positive opportunity to increase awareness of CF and the challenges people with CF face living with their disease.”
The movie even prompted at least one of the nation’s leading Cystic Fibrosis Care Centers to send a letter to parents of children who have CF. The movie has potential to raise awareness but its subject matter could upset children and teens who have the disease, the letter said. Shortened life expectancy and death due to CF complications handily drive the plot, but the dramatization could leave children with new questions. The leading Cystic Fibrosis Care Center recommends parents preview the movie before their child sees it and then, if the child wants to see it, accompany their child to the film. The center also gave parents advice on how to talk about the movie’s themes and have supportive, validating conversations afterward.
At the heart of the discussion is a question: Who gets to tell the story of life with a rare disease?
The Immune Deficiency Foundation spoke up in 2017 when another teen movie, “Everything, Everything,” dramatized what it’s like to have a severe primary immunodeficiency. The female lead in this high-stakes romance could not leave her home, for fear of infection. But (spoiler alert) the twist was that she was not sick at all and it was a case of Munchausen by Proxy – her mother was making her sick.
The IDF, which represents patients, found this to be a troubling plot device because, in real life, people who have primary immunodeficiencies struggle to get a proper diagnosis and are often labeled as hypochondriacs.
“IDF would hope that entertainment is not an acceptable reason to do harm to an already vulnerable group by spreading false information about their condition,” the organization said at the time.
Another movie released in 2017, “The Big Sick,” fared much better with patient communities. It was among the films that patients praised for accurately representing the patient experience when CSL Behring asked patients and caregivers for movie recommendations.
What is the secret to dramatic portrayals that feel right, even to patients who know the minute details?
Daniel DeFabio has spent a lot of time thinking about that. His son, Lucas, has the rare disease Menkes syndrome, and DeFabio co-founded a rare disease film festival. DeFabio recently wrote a blog post on yet another teen movie about a rare disease, “Midnight Sun.” It’s easy to understand why filmmakers gravitate to the subject of rare diseases, he said.
“They are inherently unconventional with high-stakes drama and they generally have not been told before,” DeFabio said.
Hollywood gets into trouble, though, when they let a patient’s journey become a tired trope, squeezed for every last drop of melodrama. Instead, get all the details right, he recommends. That means more than just verifying medical facts.
“There's a surprising amount of shared experience across the 7,000 rare diseases,” he said. “Families facing Menkes Disease or Fabry or Fragile X might not know if you get the details of cystic fibrosis or another disease wrong, but they are likely to have a good sense of when you get the patient's struggle wrong.”