Teen flick about life with cystic fibrosis sparks controversy online

Another tear-jerker YA novel is getting the Hollywood treatment — and stirring up plenty controversy in the process.

The film “Five Feet Apart” follows the budding relationship between to teens living with cystic fibrosis (CF). “Riverdale” actor Cole Sprouse and “Edge of Seventeen” actress Haley Lu Richardson play Will and Stella, two hospitalized teens who must adhere to the “six feet apart” rule for fear of cross-infection.

Although the rule is common between people with CF, the lead characters decide to bend the rules as a sign of giving in to love, hence the film’s title.

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Slated as the next “The Fault in Our Stars,” the film has sparked debate in the CF community, as many say they are concerned that the film romanticizes the chronic illness.

“If we want to live a full life, we have to devote our energies to treatment that we are lucky enough to have,” Julia Rae, a 26-year-old woman with CF told Healthline.

Rae said she was “outraged” by the film’s title and worries young people with CF will copy the character’s actions in real life.

Others seem to think that although the characters break the rules for plot purposes, the film does bring attention to people living with CF.

“People are going to see what having CF can be like [although] that is not how every CF person is,” said Shelby Luebbert, a St. Louis, Missouri pharmacy tech living with CF.

Still, the film’s plot prompted a statement and a discussion guide from the Cystic Fibrosis Foundation (CFF) which reads, “‘Five Feet Apart,’ a movie about two teens with cystic fibrosis, is slated for release in the U.S. in March 2019. The CF Foundation was not involved in the production of the film. However, we are hopeful that the movie will be a positive opportunity to increase awareness of CF and the challenges with CF face living with their disease.”

What is Cystic Fibrosis?

Cystic Fibrosis is a genetic disease that causes build-up of thick mucus in various organs such as the lungs, pancreas and liver.

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Blocked airways due to mucus traps bacteria, resulting in persistent infections, inflammation and respiratory failure.

There is currently no cure for CF, however there have been some major improvements to CF treatment in the past 60 years. According to the CFF, in 1957 the average life expectancy for a child with CF was five years. Thanks to medical advances, half of people born with CF in 2017 are expected to live to be 44-years-of-age or older.

What is the six foot rule?

Germs can typically spread as far as six feet by coughing or sneezing, hence the creation of the six foot rule. People with CF are prone to infection, making it important that they avoid anyone with a cold, flu or infection of any kind.

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A person with CF is able to be close to, and touch a person without the disease, however the same isn’t true between people with CF.

The six foot rule must be in effect at all times between people with CF due to the high risk of cross-infection which can cause faster decline in lung function.

Since people with CF can’t break the six foot rule for one another, they are forced to build and form strong relationships online through support groups and virtual events.

The stars speak out

While the CFF is cautioning viewers to educate themselves on the facts of the disease the film’s star says there was great concern and attention given to the CF community.

“This ultimately is a story about romance, and the set of rules that the characters are given, that real people who are patients of cystic fibrosis are given in real life. Ultimately, I think our goal was to bring awareness to that community, in a way that helped move it forward. Move research forward,” lead actor Sprouse told Refinery29. “To be honest, I don’t really care too much about [criticism from outsiders] because the people that I care the most about are the people within the cystic fibrosis community, because that’s who we made the movie for. It wasn’t necessarily for the general public. It was for the people suffering through a disease that is incredibly underrepresented, who would like more attention from a public that cares.”

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