Journal Club Article for Monday March 7th

[Melanie Van Soeren]

Hi everyone,

Here is the Journal Club article for this Monday: http://www.eurordis.org/IMG/pdf/princeps_document-EN.pdf

This article is about rare diseases, something we have not yet talked about in JC and that I think warrants a good long discussion. It was published by the European Organization for Rare Diseases (EURODIS) in order to explore rare disease in a public health context.

Please try to read the whole document (only 12 pages). It's a very easy read, no data to analyze, and is packed with information regarding the prevalence and impact of rare diseases.

I hope you enjoy it, and I'll see lots of you on Monday!

Melanie

[Tim Smith]

I don't know if this is appropriate?, but I wanted to push out a thought while the paper was fresh in my mind. I think EURODIS's position is most concisely expressed in this paragraph:

Healthcare professionals, public health experts and policy makers cannot apply traditional responses and prioritisation to greater need. This approach is not valid for rare diseases and is not ethically sustainable.

I thought this was a surprising idea, especially presented without elaboration. I'll be interested to hear how y'all feel about the idea that utilitarian metrics (roughly, "the greatest health for the greatest number of people") are an intrinsically invalid way of partitioning research funds for disease research. (I suppose I'm not astonished that a rare disease advocacy group thinks so.)

cheers,
tim

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[Melanie Van Soeren]

Hi all,

Tim, thanks for bringing up what I believe to be the major issue when it comes to rare disease research and treatment:  how do we balance the public health concept of "utilitarian metrics" (as Tim put it) with the clinical goal of providing access to treatment for all?

Something to think about before we meet tomorrow! Looking forward to discussing this and other aspects of the paper with lots of you.

Mel

[Jiyoon Koo]

It's also interesting to note that Canada doesn't have a "orphan drug policy", while US has established one in 1983, Japan shortly thereafter, EU has really started implementing theirs in 2000...More on this pdf if anyone's interested:

http://www.raredisorders.ca/documents/CanadaOrphanDPFinal.pdf

Jiyoon Koo
604 700 5770