UPDATE  (3/12/19) 4:30PM: The “video” advertisement discussed below, which was regrammed to @Breathe_In_Pod, was reported and then subsequently removed from Instagram. It’s a real shame because there was a constructive discourse in the comment sections between people living with cystic fibrosis. We’ve also been made aware some influencers commented apologies on the posts in question, before deleting them all together. Again, I don’t think anyone, certainly me included, is holding any of the influencers accountable, but I do appreciate their willingness to make (albeit temporary) statements. There has yet to be an official comment or retraction from the Five Feet Apart  camp, CBS Films or Justin Baldoni.

UPDATE (3/11/19 7:00PM): The remaining influencer posts were taken down.

UPDATE (3/11/19 3:33PM): The influencer Annie LeBlanc has deleted her Instagram post.

It was also discovered the Media company, ATTN, posted a video following the same stylistic approach – comparing lifestyle inconveniences to living with cystic fibrosis – to its social media channels. The company subsequently deleted ALL content off their social media platforms, but we were able to get a REPOST with the Breathe In Podcast Instagram, which you can see below. Breathe In will be recording an EMERGENCY podcast tonight to address the newest Five Feet Apart PR campaign.

https://www.instagram.com/p/Bu4S4qrHqqz/

The lead up to Five Feet Apart, which debuts this week, took a bizarre twist over the weekend when a number of “influencers” posted partnered advertisements on their Instagram accounts.

In paid support of the upcoming film, the six influencers, Bailee Madison, Annie LeBlanc, Jayden Bartles, Lily Chee, Brooke Butler and Alan Stokes (all of whom don’t have CF), compared inconveniences in their lives to the challenges facing people living with cystic fibrosis.

I think the posts are ignorant, really just a distasteful PR stunt, but quite a few people within the CF patient community are pretty offended. So, let’s talk about them, and then examine why these came across as so offensive. I think this could be a good learning moment about living with CF.

Here are the posts:

https://www.instagram.com/p/But7ChBg_fF/

#ad Thinking of my cousin Paige today! Similar to the new movie, @fivefeetapartfilm, she has always been there for me even though we’re separated by a distance – she lives in a different state but is always only a phone call away. She has always been someone who has taught me about compassion and being patient with others. Tag someone in the comments below who you might not be near to, but will always be close to your heart! For each person tagged on any partner’s post, $1 will be donated to cystic fibrosis research (up to $5K!) #FiveFeetApart #LoveConquersAll

https://www.instagram.com/p/BurttlbBZCL/

#ad My brothers moved away when I was younger, and I miss them so much. I can relate to the characters in @fivefeetapartfilm who can’t hug or touch, but still help each other overcome life’s obstacles. My brothers and I try to talk on the phone as much as possible and they are always there for me when I need them. Tag someone who may not be near you right now but will always be close to your heart. For each person tagged on any partner’s post, $1 will be donated to cystic fibrosis research (up to $5k!) #fivefeetapart #loveconquersall

https://www.instagram.com/p/Bub9RQ3gfH1/

#ad living in New York and having one of my best friends live in LA is so hard. just like in the movie Five Feet Apart – i could really relate to the distance between people and how to overcome it. she has always been so supportive of me and knows just what to say when I’m feeling stressed or anxious. i feel like I can tell her anything. we facetime everyday to stay close. ❤️ long distance relationships can be really challenging whether it’s your best friend, family, or that special someone. tag that special someone or friend you can’t be with but are close to your heart! for every person tagged on any partner’s post, $1 will be donated to cystic fibrosis research (up to $5k!)! #fivefeetapart #loveconquersall

https://www.instagram.com/p/BupUfYOhxj9/

So excited to be partnering with @fivefeetapartfilm, starring Hayley Lu Richardson and Cole Sprouse. It portrays a beautiful story surrounding two people with cystic fibrosis who fall in love and can’t be physically close to each other due to their condition. My grandma moved to Michigan a few years ago, after being an extremely influential and close-knit part of the lives of my little brother and mine. It was really difficult to see her go at first but from the experience we’ve learned that you can live in the same apartment or across the country and still have the same amount of love for one another. She is still a huge part of our lives and an inspiration to us both, just as the two characters in the film help to better the lives of one another while being forced to keep their distance. If you’ve made it this far, please tag a loved one in the comments. For each person tagged on any partner’s post, $1 will be donated to cystic fibrosis research (up to $5k!) Much love ♥️ Make sure to get your tickets and check out #fivefeetapart, in theaters March 15th. #loveconquersall

https://www.instagram.com/p/BuuOp6VnlIK/

#ad Long distance is difficult but love finds a way to overcome all obstacles. @fivefeetapartfilm with Cole Sprouse and Haley Lu Richardson made me realize how thankful I am to have my mom in my life, even if we can’t always be close to each other. Growing up, my mom was my best friend. I remember when I made the decision to move thousands of miles away to California, it was really hard on the both of us. She has always been there for me despite being thousands of miles away, FaceTiming me whenever I felt uneasy or uncertain about a situation. She’s helped me become the person I am today. For that, I thank you for our relationship and the other relationships you have helped me build. Tag someone who may not be near you right now but will always be close to your heart. For each person tagged on any partner’s post, $1 will be donated to cystic fibrosis research (up to $5k!) #fivefeetapart #loveconquersall

To her credit, Bailee Madison has since deleted her Instagram post following pressure from the patient community – mainly comments on her post – and a thread, which appeared in the Cystic Fibrosis Subreddit (I’m not going to put her post here since she took it down, but if you’d like to see it, it’s in the subreddit link).

If I had to guess, I’d say the posts and accompanying strategy were crafted by whatever PR team is supporting the film since they’re all very similar. I don’t think it’s likely the influencers knew what they were getting themselves into, nor is it likely they realized (clearly) what they were writing about. For that reason, I do not fault them. The blame lies with the production company, the PR team, and project leader, Justin Baldoni.

Given the enormity of the profiles we’re looking at, though, words matter, and only God knows how or why these things were approved.

I guess the strategy is supposed to somehow relate to the invisible contact precautions between people living with cystic fibrosis – the distance between us. The posts have been widely criticized and elicited a good discussion amongst patients.

https://www.instagram.com/p/Bu2koVuntGz/

https://twitter.com/DoubleTrojan/status/1104618763704459265

Personally… this is all just super disappointing. Honestly, the easy decision here would have been to hire people living with cystic fibrosis to spark the viral ad campaign (and they can still do it! There’s still time).

I’m more than happy to admit that there are some people out there in the community who are happy for this movie to hit the big screen… why not get into the #spoonie world and hire CF influencers to talk about it? The way they went about it, though, and enlisted a handful of social media influencers, just seems beyond ignorant. Again, all of this comes back to patient experience, expertise and lifestyle. We live with the illness! If you want to talk about the distance between people who feel so strongly about each other, why not talk to people who live like that. I think about the time before Tiffany and Lea were able to meet each other late last year. God that video gives me goosebumps every time I watch it.

https://www.instagram.com/p/Bgu6LoIlvIK/

Why are so many people offended, or like me, why do I think these are ignorant? I think they are worthy questions, and valid ones at that – I think it’s important we try to see that point of view.

We’re talking about personal independence here. So many people with CF are reliant on other people for survival, to the point where folks are sometimes denied the opportunity to dive into the world and live on their own. So when the inconvenience of traveling, or moving to a different city to pursue a career is compared to living with cystic fibrosis, it feels weird, and that’s exactly what the influencers are talking about:

“living in New York and having one of my best friends live in LA is so hard. just like in the movie Five Feet Apart – i could really relate to the distance between people and how to overcome it,”

“My brothers moved away when I was younger, and I miss them so much. I can relate to the characters in @fivefeetapartfilm who can’t hug or touch, but still help each other overcome life’s obstacles” 

“Thinking of my cousin Paige today! Similar to the new movie, @fivefeetapartfilm, she has always been there for me even though we’re separated by a distance – she lives in a different state but is always only a phone call away”

The common message in these posts is about growing up, learning to live and love from a distance, and overcoming those challenges, which minimizes the cystic fibrosis experience, and it has pissed off a growing list of people since last week. Personal independence is a huge stressor for people living with chronic illness, and if I’m being honest, it’s been a stressor for me! My life’s passions were all but taken away from me back in 2013 when I got very very sick after college, but I’ve spent the past 5 years battling back, to the point where I’m on the precipice of a big life move!

Here’s what some people are saying (plus, of course, the Reddit link above):

https://twitter.com/a_k_martin/status/1104959866177810433

https://twitter.com/DoubleTrojan/status/1104744611036069888

https://twitter.com/chlo_davy/status/1104739223276584960

https://twitter.com/ryanmonahan1/status/1104477600343306242

https://twitter.com/colleenlewis/status/1103886629473705984

I think we’re at the point where Justin Baldoni and the production company MUST now address the project’s critics within the patient community or, at the very least, soon after the film debuts. There is a large portion of the patient community who feels exploited, stereotyped, minimized and offended, and to this point it has not been addressed by anyone. It is a strange situation since the common message throughout the process has been, “This is for the CFers!”

The only remark from the production camps has been that we did our best to make sure it’s accurate, and all CFers know to stay away from each other!

Here’s an important distinction… no one is talking about accuracy. We’re talking about the mainstream portrayal of the illness, and I think it would do wonders if the filmmakers publicly addressed our concerns. Yes, it will be embarrassing, but accountability goes a long, long way, especially in our eyes, the ones living with the illness.

We’re not trying to stop the film, and believe it or not, we’re very happy for the folks in the community who are excited for the film. We, unfortunately, feel like the strange portrayal of CF through the lens of a teen romance, which has now been supported by a strange teen influencer ad campaign, feels disingenuous and ignorant.

Here’s the deal, I am a very easy person to get ahold of, and I would be more than happy to have a conversation with Justin about our growing list of issues. No one is calling anyone’s character into question, and I’m sure his heart is in the right place with Five Feet Apart, but it’s time we have actually have a discussion about some of the emotions this film is provoking within the patient community.

I’ll update this article if the Instagram posts are edited or taken down.