What does ‘Five Feet Apart’ get right and wrong about cystic fibrosis?

By Michael Oliveira

Dr. Elizabeth Tullis didn’t nitpick as she watched the recently released movie “Five Feet Apart,” a teen romance that chronicles a relationship between two young people living with cystic fibrosis.

Medical professionals usually can’t go more than a few minutes during a medical drama without spotting some kind of badly staged shot, like an X-ray shown backwards, says Dr. Tullis, director of the Adult Cystic Fibrosis Clinic at St. Michael’s Hospital, the largest adult CF clinic in North America.

Dr. Tullis was expecting to spot plenty of inaccuracies throughout the movie — and there are a few significant facts and scenes that were off the mark, particularly for Canadian audiences — but her final verdict?

“This movie was generally well done,” says Dr. Tullis. “It was a twist on the Romeo and Juliet story, with a wealth of info about CF and the acting was good.”

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system, causing the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening infections. It is the most common fatal genetic disease affecting Canadian children and young adults.

Moviegoers could be forgiven for getting the impression that cystic fibrosis is a disease that only affects young people and that the survivor rates are low.

“The movie didn’t feature any older patients with CF — and we have 60-year-old patients in our CF clinic,” Dr. Tullis says. “The majority of our patients are much older than the film’s characters.”

Some of the film’s characters also talk about life expectancy rates that are unrealistically pessimistic for Canadians with CF.

“On a couple of occasions, the actor in the movie said the median survival for lung transplant was only five years but the average survival in Canada is like 10 to 12 years, so that’s a significant difference,” Dr. Tullis says.

“We have better survival rates in Canada than they do in the States and our reality for transplant is different too. In the movie, the main character said she had been waiting years for their lung transplant and in Canada, nobody waits for years. Here, if somebody waits nine months we’re like, ‘Whoa, that’s a long time.’ The average is about six months.”

One thing the film did very well was portray how difficult it can be for CF patients who are ill to experience intimacy, whether with a romantic partner or friends.

“The idea of two CF patients having a romantic relationship as in the movie is very believable, that certainly has happened with us, we’ve had patients who were married after meeting in the hospital or clinic,” says Dr. Tullis.

“The part of the movie I felt very sad about was the whole infection control side. The premise of people not being able to express how they feel about someone, whether it’s their friend or their partner — that you’re not allowed to touch someone, not allowed to kiss someone, not allowed to hug someone —that part is very true.”

That part of the film definitely felt close to home for 22-year-old Madeline Dubon, who also thought “Five Feet Apart” generally did a good job of depicting the lives of CF patients like herself.

“The struggle we go through in terms of connecting with each other when we can’t have that physical interaction is extremely hard, and that struggle was really, really well depicted in the movie,” Dubon says.

“It’s obviously not showing everything that we go through, because each person is so different and it’s very hard to capture everything.”

And because not every patient has the same experience with the disease, it’s likely that some people living with cystic fibrosis may not connect with the film, Dr. Tullis adds.

“There’s a group of patients who are really healthy and don’t see themselves like the film’s characters. These were young characters saying, ‘This could be my last breath,’ or ‘Every birthday could be my last,’ but there are people with CF who just don’t think that way because they’re healthier,” Dr. Tullis says.

“Some people with CF don’t like to see the illness portrayed that way because they think it makes them a victim, they think it makes people feel sorry for them. But other patients I think will certainly say it’s nice for people to see how hard people with CF have to work to stay well and how they’re also real people. And that came across very well in this movie.”

About St. Michael’s Hospital

St. Michael’s Hospital provides compassionate care to all who enter its doors. The hospital also provides outstanding medical education to future health care professionals in more than 27 academic disciplines. Critical care and trauma, heart disease, neurosurgery, diabetes, cancer care, care of the homeless and global health are among the Hospital’s recognized areas of expertise. Through the Keenan Research Centre and the Li Ka Shing International Healthcare Education Centre, which make up the Li Ka Shing Knowledge Institute, research and education at St. Michael’s Hospital are recognized and make an impact around the world. Founded in 1892, the hospital is fully affiliated with the University of Toronto.

About Unity Health Toronto

Unity Health Toronto, comprised of Providence Healthcare, St. Joseph’s Health Centre and St. Michael’s Hospital, works to advance the health of everyone in our urban communities and beyond. Our health network serves patients, residents and clients across the full spectrum of care, spanning primary care, secondary community care, tertiary and quaternary care services to post-acute through rehabilitation, palliative care and long-term care, while investing in world-class research and education. For more information, visit www.unityhealth.to.