In Politics by Numbers, broadcaster, author and spreadsheet stan Gavan Reilly takes a data deep dive into a political point of the week. 

IT IS HARD not to feel some empathetic joy at the images, in the last few days, of Friedreich’s Ataxia patients learning the HSE will cover the cost of a drug to slow its path. Skyclarys cannot cure their condition but can at least patients resist the progressive damage to their peripheral nerves.

In medicine, the phrase ‘time is muscle’ was originally coined in relation to heart attacks – the longer that blood flow is impeded, the more tissue of the heart dies. But for those with Friedreich’s Ataxia, and other degenerative conditions like muscular dystrophy, it has a different meaning: the quicker they can access drugs to slow the progression, the more muscle mass they can retain. Treatment delayed is treatment denied.

Dr Suzanne Crowe wrote eloquently here last week about the sprawling bureaucracy and impaired transparency behind the approval of new drugs like Skyclarys (or omaveloxolone, to give it its scientific name). The events of the last week – albeit with a satisfactory outcome for those who need the drug to prolong any quality of life – will certainly illustrate that Ireland’s is a system which knows the price of everything and the value of nothing.

For the record, those in the inner workings of the health service insist that many aspects of the long, drawn-out process of reimbursing Skyclarys were not of their own making. The patients’ fight to access the drug has been a two-year battle, but the manufacturer, Biogen, only listed its €288,000-a-year asking price to the HSE in May of this year. A cost-benefit analysis couldn’t have started any........

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