Raising money for cystic fibrosis: At what price?

Every morning in the metro, we are exposed to the “Drowning on the Inside” advertisement from the Canadian Cystic Fibrosis Foundation (CCFF). The ad is in so many public places, it is hard to avoid it (www.cysticfibrosis.ca/assets/files/pdf/Print_Ad_MagE.pdf). The ad depicts a child, literally drowning. It reads, “Cystic fibrosis is like drowning on the inside. You cough. You gasp. Your lungs fill with fluid. Every breath is a struggle. That’s how you live. And how you die.” With this ad, money is raised for cystic fibrosis (CF) research, but at the expense of tremendous harm to people with the disorder and to their families.

Living with CF is not easy. Does 14-year-old Karen need to stand in front of this advert with her first boyfriend? It is difficult enough at her age for Karen to have to expectorate her sputum every day and to realize that she’ll one day have to do it in the presence of her partner. It is hard enough for her to explain to her friends that, although she has a serious illness, she is okay right now. Later, when her boyfriend leaves her, does Karen wonder if it is because he thought she would die soon? And what about Dorothy, who has to bring her sensitive eight-year-old son Sam to the psychologist after he sees this ad? He is convinced that his mother lied to him because “she wants him to be happy.” What about Lisa and Alan, both CF carriers who elected against prenatal diagnosis? Do they also need to be exposed to this kind of misinformation?

Pediatricians are tasked with announcing the diagnosis of CF to families, many of whom have no knowledge about the disease other than what they’ve seen in the metro or on the side of a bus — pictures of a young child drowning. One of the goals of the CCFF is to promote public awareness. Living with the disease is not like drowning; dying with the disease may sometimes be like drowning. Children with CF do not gasp. Dying patients gasp. Another of the ads from CCFA shows a straw: “That’s what breathing is like with cystic fibrosis. No wonder so many people with CF stop breathing in their early 30s” (www.cysticfibrosis.ca/assets/files/pdf/BreathingCCFF_VertEng.pdf).

I once saw two adolescents standing in front on this ad; they took their straws from their McDonalds cups and had a contest to see who would last the longest in the “CF challenge.”

“Wow,” said one. “I guess they get really good at it if they do it all the time, poor guys. I would rather die than have to breathe like this.”

CF is not like breathing through a straw, at least not the straw shown in this ad.

With advances in medical care, patients born today live much longer than they did 30 years ago. It is ironic that we can find this information on the CCFA site: “[about patients born in 2006] the medical age of survival for Canadians with CF has increased 10 years since 2002 and is currently estimated to be at 47.7 years of age, which is quite remarkable” (www.cysticfibrosis.ca/assets/files/pdf/CPDR_ReportE.pdf).

The patients’ own foundation uses this language, not out of ignorance, but with full knowledge of the facts —just to make money. The goals achieved with the money raised are not worth the misinformation and the harm done to vulnerable patients and their families.