The film Five Feet Apart was released in the UK today, but even as it reaches audiences it is dividing the cystic fibrosis community.
The film is based on the fictional story of two teenagers with the illness. Because of the huge dangers of cross infection between cystic fibrosis patients, they are supposed to follow medical advice and stay six feet apart at all times. However, love gets in the way and they decide to take back control of their lives, their relationship and “just one foot”.
There are big questions regarding how the first Hollywood film to highlight the illness might impact both those who have the genetic disorder, but also the understanding of cystic fibrosis (CF) among the rest of the population.
As one of more than 10,400 people in the UK born with this degenerative and life-limiting disease, I’m not sure if I even want to see a film that hits so close to home considering that just under two years ago I very nearly died and am only here today thanks to a double lung transplant.
But despite my personal misgivings, it will surely provide a unique insight into lives that most viewers thankfully will never have to experience firsthand and shed light on the problem. And this is good for anyone with CF, or any invisible illness, who will tell you it can be frustrating growing up or living with illnesses that are often misunderstood.
The director, Justin Baldoni, and actors Haley Lu Richardson and Cole Sprouse, received advice from the CF and medical community in the US, including author, activist and CF patient Claire Wineland before she sadly died last year. From all accounts, despite some obvious creative licence (it is Hollywood after all), many of the symptoms are portrayed with alarming accuracy. There has been some criticism that the coughing isn’t frequent enough, and that a portable oxygen compressor would not be enough support for someone in end-stage lung failure, but generally the response from the CF community has been overwhelmingly positive.
Some people with CF, and their families, have been moved to tears by situations they say mirror ones they have experienced. People with CF have a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of symptoms affecting the entire body. Life expectancy is still only about 40 years old.
But movies so regularly blur the lines between reality and fiction that there is a danger people won’t appreciate the accuracy, or that they will just focus on the story of two teenagers falling in love, breaking the rules and suffering the grave consequences. Will the film, as many hope, really raise awareness around this incurable disease and inspire people to support research into breakthrough drugs and eventually a cure? Or, for most, will it simply be a film from which they can leave grateful not to be in similar circumstance?
At a time when the CF community in the UK is locked in a battle against the drug company Vertex to gain access to its live-saving drug Orkambi on the NHS, I believe that any increase in public awareness and support has to be positive. So I’d encourage as many people as possible to see it. As a community we need to use Five Feet Apart as a lever to highlight the situation, to point people towards the Cystic Fibrosis Trust and other organisations, in order to educate themselves. I’d also like to request their support – financially and practically – and to raise the awareness of this devastating disease so that one day CF can stand for Cure Found.
• Pippa Kent is 29 and has cystic fibrosis. She runs Now What Can I Eat? on Instagram based on her post-lung transplant journey and the food limitations of immune suppression
