“Five Feet Apart” - Cystic Fibrosis goes to Hollywood

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ASPartOfMe
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11 Mar 2019, 12:30 am

Cystic fibrosis advocates are worried about the upcoming film “Five Feet Apart”

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An upcoming romantic drama about two young people with cystic fibrosis is angering some in the community. Though the film aims to raise awareness of the life-shortening genetic disease, a number of advocates say it could do more harm than good.

The directorial debut of Jane the Virgin actor Justin Baldoni, Five Feet Apart stars Haley Lu Richardson and Cole Sprouse as cystic fibrosis patients in the same hospital who fall in love but aren’t allowed physical contact with each other due to their disease. The film’s title comes from the “six foot rule,” a guideline set by the Cystic Fibrosis Foundation that says two patients must be kept at a minimum of six feet (two meters) apart to minimize the risk of cross infection.

About 70,000 people worldwide have cystic fibrosis, which is usually diagnosed at a young age. A progressive genetic disorder with no known cure, it causes constant lung infections and difficulty breathing. The life expectancy is about 40 years.

Five Feet Apart consulted with Claire’s Place Foundation, a cystic fibrosis advocacy group named in honor of the late Claire Wineland, a patient and well-known advocate who had worked with the film’s actors on creating a realistic portrayal of the disorder before she died in September.

Still, other advocates say the trailer is worrying.

The trailer shows the main characters touching each others’ medications and walking together with no masks,” Julia Rae, a cystic fibrosis patient and advocate, wrote on her blog. “No responsible doctor or nurse would allow or promote this.”

Rae, who also called the film a “dangerous misrepresentation” of the disorder, added that she corresponded on Instagram with Baldoni, who told her the film had to take some creative license in order to tell the story in two hours. “I argue infection control is a serious issue in the cystic fibrosis community. It is not a topic that allows any room for “‘creative license.'”

Another cystic fibrosis advocate, Gunnar Esiason, argued the whole premise of the film is inherently a bad idea. “Some people seem to think it is an enormously positive thing to get cystic fibrosis out there on the silver screen. Other people, like me, think it’s a pathetic for profit attempt to capitalize on a very narrow issue that gives a lot of people with cystic fibrosis extreme anxiety and stress: cross-infection between two kids with CF,” he wrote.

The reaction hasn’t been unanimously negative, as many cystic fibrosis patients and advocates are thrilled to see the genetic disorder that affects them finally depicted in a mainstream Hollywood film. The film will be released March 22, 2019.



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ASPartOfMe
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12 Mar 2019, 8:37 am

I have watched several reviews of the trailor by people with cystic fybrosis. FWIW unlike the people quoted in the article they are very positive about it. As vloggers themselves they are thrilled that one of the two main charactors is a vlogger. While they are leading productive happy lives all view cystic fybrosis as a terrible medical disease that robs them. They call themselves CF’rs. They are thrilled to see what is real and and are not bothered by what is unreal because they understand it is a movie made for non CF'rs. They view the movie raising awareness as the important thing. They emotionally relate to the line “I was living for the treatments instead of getting the treatments to live.


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Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

"When Establishment figures declare that they’ve changed their mind on free speech and now think there should be less of it, know that they expect the speech that gets throttled to be yours, not theirs.” - Walter Olsen Cato Institute