Monday, 28 February 2011

Survey and commemoration o' the day

It is that time of the year again, apparently, it being the Fourth World Rare Diseases Day.  And in a impressive show of foresight, the EU commissioned a survey on rare diseases, which today sees the light of day.

So to the findings.  A rather alarming 37% of those polled do not know what a rare disease is, with a special salute to the 3% that replied 'These are diseases that nobody cares about'.  In France that figure is 6% and Italy 5%, but a mere 2% in these parts.   Makes you proud, doesn't it?  Among those who 'know or who have heard of a case of a rare disease', the 'nobody cares' response still rates a 2% response rate, which is pretty harsh.

Anyway, on to the rare diseases that Eurobarometer addresses - Cystic fibrosis, haemophilia, osteogenesis imperfecta, progeria, Duchenne muscular dystrophy and Huntington’s disease.  CF is the best known at 65%, followed by haemophillia at 60%, DMD at 39%, Huntingdon's at 31%, OI at 19% and Progeria at 16%.  I had not heard of the last two, so have that in common with the majority of those polled.   The Bulgarians and the Austrians proved to be the least well informed, while our neighbours to the West and the South did rather well.  

Some 84% of Danes claim to know or to have heard of someone suffering from a rare disease, which makes me wonder whether they are enthusiastic hospital visitors or can't tear them selves away from medical stories in the media.  We come bottom of the heap at 40%.  Sieving it out a bit, 42% of Danes claim to know someone with a rare disease, compared to 6% of Greeks.  One does wonder whether our Danish chums just wanted to show off.  Elsewhere, there is a strong correlation between both higher social status and tertiary education and knowing someone with a rare disease.  Or lying about it.     

Asked whether 'the cost of ...drugs to treat people suffering from rare diseases should be fully reimbursed by the national health care system even if they are expensive' some 56% of us 'totally agree', which is one of the lower figures.

As cynics realists will have guessed, there is rarely a Eurobarometer poll which does not include a push question for an EU landgrab, and here it is:  'should there be more European co-operation in order to help the limited numbers of people suffering from rare diseases more efficiently'.  We have one of the lower 'total agreement' figures at 58% to the EU average of 66% and the Cypriot peak of 91%. 

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