A film about two lovestruck teens with a disease that demands they keep their distance from each other — literally — has touched off a spirited debate among those living with the illness.
Scheduled for release next Friday, the PG-13 drama “Five Feet Apart” takes place against the backdrop of cystic fibrosis, a rare and ultimately fatal condition caused by a genetic mutation that attacks the lungs as well as other parts of the body.
About 30,000 people in the United States currently have the disease and an estimated 70,000 worldwide are affected.
The disease is progressive and there’s no cure. The average life expectancy of a person in United States with the disease is 37 years of age, although that number is rising as treatments become more effective.
The controversy surrounding “Five Feet Apart” starts with the movie’s title, which critics argue poses a danger to impressionable patients by implying that their condition isn’t as serious as it actually is.
The Cystic Fibrosis Foundation recommends that individuals with the disease stay at least 6 feet away from each other to reduce the risk of exposure to germs that become airborne with a cough or sneeze.
Mucus normally protects the airways by trapping germs until they’re expelled through coughing.
In the case of cystic fibrosis, however, the secretion becomes so thick that these pathogens remain stuck in the lungs, leading to infection and making it difficult to breathe.
Some who have come out against the movie object to the genre, saying there’s nothing romantic about cystic fibrosis and using it as a plot device to entertain the masses is exploitative.
One outspoken critic is Julia Rae, 26, a Philadelphia resident with cystic fibrosis. She said her initial reaction to the two teens flouting the strict 6-foot rule was outrage.
By romanticizing the rebelliousness, she fears the film will encourage young people with cystic fibrosis to emulate the actors.
“If we want to live a full life, we have to devote our energies to the treatment we are lucky enough to have,” Rae told Healthline.
Rather than face the hazards of hanging out with each other in person, many CFers, as they call themselves, cultivate a social life online. That’s how Rae met Gunnar Esiason, another of the movie’s detractors.
But although the two have become good friends, Rae says they haven’t met in person because they respect the restrictions.
Instead, when they attend New York Rangers games at Madison Square Garden, Rae and Esiason share selfies they take while seated in different sections of the arena.
If Rae has any common ground with those who are eagerly anticipating the movie’s release, it’s the hope that it will draw attention to a disease most people know little or nothing about.
“I totally agree that it will bring a new light to CF that is very much needed,” she said.
For his part, Esiason says the trailer depicts the lead characters as “weak, pathetic victims” who dwell on the quality of life they’ve lost by having to schedule their daily activities around treatments.
“It’s so sensational,” he told Healthline.
The 27-year-old from Long Island, New York, has big plans despite repeated hospitalizations.
“I always wanted more and still do,” said Esiason, who is on the board of a foundation that raises money on behalf of CF patients.
Esiason talks of starting a family someday, and recently applied to graduate school despite spending about 2½ hours a day on various treatments.
“I’m not sitting in a hospital bed saying, ‘Oh, my God, this is horrendous,’” he said.
Indeed, new drugs and other therapies are extending lives without the need for a lung transplant.
That’s why Cathy Chacon, a nurse coordinator with National Jewish Health in Denver, Colorado, thinks some found the atypical story of two young people needing lung surgery depressing.
Morgan Grindstaff, 28, wasn’t expecting much when he turned the video camera on himself to preview “Five Feet Apart” because all the television shows he’d seen featuring someone with cystic fibrosis had made mistakes with medications and used the wrong hospital equipment.
But this time the North Carolina resident was pleasantly surprised.
“They’ve done so much to portray CF accurately,” Grindstaff said.
He noted that a person with cystic fibrosis served as a consultant to the director to ensure the movie was believable.
That adviser was the late Claire Wineland, a well-known voice in the cystic fibrosis community who coached the lead actress on a coughing technique patients use to expel mucus. She also sat in on the cast’s first reading of the script to listen for the authenticity of emotions.
The defiant behavior in the film is realistic, said Grindstaff, who had some friends who didn’t follow doctor’s orders and cut their lives short as a result.
Wineland’s mother, Melissa Nordquist Yeager, disagrees with criticism that the movie glorifies an illicit romance. On the contrary, she says it emphasizes the teens’ emotional struggle as well as parents’ angst.
“It’s very clear that it’s not OK [to break the rules],” she told Healthline.
Shelby Luebbert, 27, has already seen the movie and agrees that it presents an unvarnished picture of cystic fibrosis.
The St. Louis, Missouri, pharmacy tech spoke to Healthline from the hospital, where she’d been admitted two weeks earlier after having come down with a garden-variety cold.
With her lungs functioning at only 30 percent of capacity, Luebbert had been getting treatments four times a day, inhaling medications and wearing a vibrating vest to break up the mucus.
“People are going to see what having CF can be like [although] that is not how every CF person is,” she said.
The movie might help foster a deeper appreciation for the simplest and most elemental gifts of life like being able to hug a friend — or breathe, Chacon said.
“Anything that brings out awareness for cystic fibrosis is good,” she said.
The public is invited to learn more about cystic fibrosis in a live Facebook forum at 12:30 p.m. PDT on Tuesday, March 19.
People can post questions on the Facebook page of Claire’s Place Foundation.
The event will be hosted by Yeager, the foundation’s executive director.
It will also have a doctor and other cystic fibrosis experts on hand to provide information.