“Five Feet Apart” Movie About Cystic Fibrosis Must Tread Carefully

An upcoming movie from director Justin Baldoni, Five Feet Apart, must tread carefully as it surrounds a sensitive subjectcystic fibrosis cross infection. The movie, slated to release next spring, will also be adapted into a Young Adult novel coming in November.

The premise of the story, coming from FlickeringMyth.com:

Stella (Haley Lu Richardson) and Will (Cole Sprouse) are seventeen years old and they are falling in love. The flirting in the hallways, the slipping away from adult supervision, the tension of every shared moment building toward something unknown but impossibly exciting. Complicating matters, their romance must exist within the boundaries of their lives as cystic fibrosis patients in the same hospital, where strict rules dictate that they must stay five feet apart at all times… As the connection between Will and Stella intensifies, so does their willingness to defy the rules that govern every moment of their lives. Teenage attraction gets complicated when touching is not an option, but the pair quickly learns that the possibilities are endless, even if it means staying out of reach…

It’s a teen romance that sounds similar to The Fault in Our Stars, but with a CF Twist.

The Six-Foot Rule (changed to five for purposes of a snappy title) comes from Cystic Fibrosis Foundation’s Infection Prevention and Control Guideline For Cystic Fibrosis , which recommends clinics, “Separate all people with CF from others with CF, regardless of their respiratory tract culture results, at least 6 feet (2 meters) in all settings, to reduce the risk of droplet transmission of CF pathogens.

Like any guideline, this study is not the law of the land, but rather it is a mechanism designed to minimize risk for the spread of infectious disease. It is supported by continued study, including one, which found:

Infections with ePA (Epidemic P. aeruginosa) are closely linked to past exposures, now routinely discouraged. As socialization is the greatest risk factor for ePA, infection control strategies for ePA must focus on discouraging face-to-face interactions amongst CF patients. As peer support remains a desire amongst patients, investment in technologies and strategies that enable indirect communication and support are required.

Epidemic P. aeruginosa is a strain of what we commonly call, Pseudomonas, and has ultimately shown to “have been associated with accelerated clinical decline.

Further, the infection prevention and control guideline does admit that adults with CF, “may struggle to accept the paradigm shift that has taken place for IP&C during the past decade on the basis of new knowledge of transmission of CF pathogens” and a different set of standards for siblings with CF is commonly accepted despite some of the risks.

I can appreciate that this sensitive topic is being talked about. On one hand CF and infection control are so unbearably isolating that I really can’t fault people for wanting to live beyond the six-foot rule, as stated above. Contrary to what people may think (as evidenced by the endless stream of insults, harassment, slander and threats thrown my way from a small number of people), I’ve always thought it is more than appropriate for people to make their own choices in life, especially adults living with CF who are able to understand, comprehend and discuss risks in an elegant way. Remember, people living with chronic illness are experts in the condition they live with. I don’t think Hollywood is going to have an influence on someone who has lived with CF for 30 years.

Unfortunately I can’t say the same for the family raising a young child dealing with CF. What I don’t appreciate is Hollywood romanticizing this issue, like we’ve seen from news outlets in the past, and potentially pointing out that people with CF are unable to develop relationships with otherwise healthy people. The latter we know to be false. Further, do we really want cystic fibrosis portrayed in pop culture through the lens of rebellious teenagers? Is that representative of our rare disease?

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 the worldwide antibiotic crisis.

The press around Five Feet Apart just seems tone deaf, “their willingness to defy the rules that govern every moment of their lives.” I think people should be able to assume risk and make choices according to their own free will. I don’t think Hollywood’s narcissism (I can present a story better than anyone else!) should be influencing medical decisions.

That being said, I think Justin Baldoni does have an opportunity here to enter the complex mind of a person living with cystic fibrosis and show the world what we are dealing with on a daily basis. How does one balance the isolation of the illness with conservative longevity or living on the edge?

I’d like to know what kind of point Baldoni’s hopes to make with this movie, and I’d be happy to have a conversation with him should he like to engage me (It’s pretty easy to get ahold of me).

It’s quite apparent that he seeks to address cross-infection and what it means to those of us with CF, but I hope he doesn’t make light of it, and inadvertently influence young people to disregard the seriousness of a public health concern, that is infection control. Admittedly, I’m a bit pessimistic since the vehicle for this conversation is a teen romance, and for that reason I stand by my statement saying that it is wrong to romanticize cystic fibrosis. However, we’re yet to see a great portrayal of cystic fibrosis on the silver screen, and maybe that is something we will get with Five Feet Apart.

Ultimately, I hope, more than anything, that this film does become a conduit for disease awareness in a new demographic. To that end, I don’t think they need to spin this as one of those things that donates proceeds to cystic fibrosis, as some have been suggesting on Twitter. The movie industry has power beyond that.

So… will I plan on seeing Five Feet Apart? I’m not sure. Aside from the simple fact that teen romance isn’t my go to genre, I just don’t know. I suppose a conversation with Justin Baldoni could change that. That remains to be seen.

What do you think of this?

The response to this movie on Twitter has been very mixed.

Some don’t mind it:

Others don’t seem to like that this movie is headed our way:

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