€288k is the Skyclarys asking price, but what is the cost to patients of waiting?
The Irish health service has agreed to fund the expensive drug Skyclarys for patients suffering from Friedreich’s Ataxia. The article highlights the bureaucratic delays and high costs associated with accessing life-prolonging treatments in Ireland.
Why it matters
It underscores the tension between pharmaceutical pricing and public healthcare accessibility for rare, degenerative diseases.
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.
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