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By: Breathing As A Family  09-12-2011
Keywords: disease, Cystic Fibrosis, Genetic Disease

CF is like drowning on the inside

The Canadian Medical Association Journal (CMAJ) recently published an article and two letters (see footnotes at the end of this post) that dispute (one of the letters defends the marketing) the accuracy of the ads depiction of living with CF, and thus, question the effectiveness and appropriateness of the advertising campaigns themselves.

The criticism is mainly directed at protecting CF patients and their families. The main target of the criticism is an ad that depicts CF as being “like drowning on the inside” and the ad shows a child’s face barely held above the water, visibly struggling not to drown. This is most distressing for CF patients and their families, as it puts a very real visual of “what’s to come” to a disease that many live in denial about.

Many families that live with CF live in denial that CF will catch up with them. This is a survival tactic that allows patients to live a life of hope, living with the understanding that they may beat the disease. When vivid visuals are shown, it does provide a real-life horrific reminder of what CF patients live with and what they may experience as CF wears away at the lungs.

As a parent of a child with CF, I was horrified the first time I saw this ad. Others close to our family are unable to watch the ad. Most days, we do well to put it out of our minds, hoping that a cure will arrive before disease progresses to a point of no return.

According to the article, “Cystic fibrosis, a fatal genetic disease that affects about one in 1600 people, causes mucus to accumulate in the lungs, affecting breathing.” According to Dr Annie Janvier, a neonatologist and clinical ethicist at Sainte-Justine Hospital in Montreal, Quebec, “people receiving proper medical care would at no time, not even when dying, feel as if they were drowning or breathing through straws.”

In defence, June Pierotti, the director of communications for the Canadian Cystic Fibrosis Foundation, says, “the ads are not intended to mislead, scare or hurt anybody. Adults with cystic fibrosis are consulted on advertising concepts, as well as parents of children with the disease. Most people don’t know much about cystic fibrosis”, says Pierotti, “and hard-hitting advertisements are necessary to get people to realize it is a serious problem that deserves attention.”

In response to the letter referenced above, Karen Gliddon (Hamilton and Area Chapter President, Adult Committee Chairperson and CF patient) and Nathan Fish (Ontario Representative Adult Cystic Fibrosis Committee Advertising Campaign Working Group Member) urged, “Unfortunately, in contrast to other major diseases, cystic fibrosis is not well known or understood by Canadians. It is therefore vital that CF advertising campaigns present a powerful and real depiction of what it’s like to live with cystic fibrosis.” Further, “Prior to launching an advertising campaign, the Foundation consults and receives input from the CF community, including parents of children with cystic fibrosis, adults who are fighting CF personally, and healthcare professionals. As leading members of the CF community who approved the current campaign, we recognize that its hard-hitting message may affect some individuals negatively, and we try very hard to minimize this impact.”

The ethics of these advertising campaigns are unclear. The concern to protect CF patients from such graphic and scientifically debatable depictions of the disease is understandable. Yet, it is difficult to truly understand what CF feels like. Thus, “shock and awe” advertising does raise awareness, and with it, funds that are desperately needed for additional research to help find a cure.

I don’t know about you, but, I’m willing to tolerate a bit of debate over the accuracy of the ads if it means additional awareness. I say kudos to the Canadian Cystic Fibrosis Foundation for their campaign. While disturbing to those of us that live with CF each and every day, I am thankful for the awareness and the benefits that the advertising generates.

My two cents…


Articles referenced in this post:

Keywords: Cystic Fibrosis, disease, Genetic Disease

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Uncategorized « Breathing As A Family with Cystic Fibrosis

The finality of her death this past weekend was a reminder to us that our daughter suffers from a disease with no known cure and a cruelly short life span for over 50% of CF patients. Seeing someone die from this disease at the age of 25, when that person should be living life, growing a career, getting married, having children, seems horrific to any parent.