The Carleton University Student’s Association news story that broke yesterday has rightly provoked an outraged response. The students union there passed a motion to change their fundraising efforts from the CF foundation. It is, of course, entirely their right to decide to whom they direct their fundraising efforts. However, it is a great shame that not only did they choose to switch from CF but in the manner of doing so they have undermined all the tremendous good they will have done with their past fundraising for CF.
The problem with what CUSA did was not that they decided to switch their charitable efforts, but why they did. The motion the union executive voted on contained the following statement regarding CF: “Cystic Fibrosis has been recently revealed to only affect white people, and primarily men”. There has been an outraged response in the media because of the clear chauvenistic and racial implications of the CUSA motion. But it is even worse than that because it contains not one word of truth.
Firstly it is absolutely not true that that it is primarily a disease of men – the CF burden is almost equally split between males and females. Indeed, in the past it was actually the case that females with CF have not done as well on average as males in terms of median survival. Secondly, while it is true that a great many people with CF are classified as ‘white’, it most certainly is not true that it has been revealed that it is only white people affected. Indeed, the more research that is done, the more CF is found in other populations, often at a lower frequency than in Canada generally, but the literature describes cases in people from North Africa, to South America, to Israel, to Asian and Arabian countries.
When CF was first described the average survival was just 4 years. Due to the success of research, funded in large part by charitable CF organisations like the Canadian Cystic Fibrosis Foundation, this has now been extended to late 30s and promises to rise much higher with further advances. However, to make these advances, continued research funded by CF foundations is vital and so it is essential that any misconceptions in this story are debunked.
CF is a horrible disease. People with CF, their families and caregivers have a substantial range of major daily challenges in their life, from significant digestive problems to chronic lung infections. The biggest chunk of money raised by the CF foundation is spent on research to help improve the lives of people with CF. However, it is also important to understand how scientific research and advance is made. Research funded by the CF foundation does not get published in a box marked ‘only relevant for CF’. All research has a much broader relevance.
To take one example of this, one of the most common causes of infections in CF lungs is a bacterium called Pseudomonas aeruginosa. Dealing with Pseudomonas infections is vital in CF and so much research is funded on Pseudomonas. However, Pseudomonas aeruginosa does not only infect people with CF. It is a very significant cause of hospital acquired infections and among other things it can also cause severe, vision threatening, eye infections in people who do not clean their contact lenses properly. Therefore, any research funded to better understand Pseudomonas is clearly going to benefit anyone who may get a Pseudomonas infection.
The benefit of research on bacterial infections in CF is even wider than just one bacterium. One of the features of Pseudomonas aerginosa bacteria is that they are very resistant to a lot of commonly used antibiotics and so there has been a lot of CF foundation funded work in Canada and elsewhere to understand this. Because of this research, very significant advances have been made in understanding antibiotic resistance in a very wide range of bacteria that cause large numbers of infections in people without CF. A substantial amount of this research has been done in Vancouver and Canada.
This, of course, is just one example of how charitable money raised for CF helps not only CF but the whole world. Next year, like with the last few years, I will be actively raising money for the Canadian CF Foundation in the full knowledge that it is going to one of the most worthy causes there is. The generosity of donors in the last few years has been humbling for me. Anyone donating to CF can rest assured that only are they donating not only to improve the lives of Canadians afflicted with a very unpleasant disease but they also helping advance human knowledge in a way that helps humanity as a whole.
James E A Zlosnik, PhD (Cystic Fibrosis Microbiology Research Scientist), Nov 27 2008









