Skyclarys: Campaigners march in Dublin ahead of crunch HSE decision

What the Skyclarys decision turns heads

The demonstration gathered at the Garden of Remembrance and made its way to Custom House Quay, three days before HSE senior management meet to decide.

Friedreich’s Ataxia is a rare, progressive neuromuscular condition that causes nerve damage, muscle weakness and loss of mobility. It is believed around 200 people in Ireland live with it.

Skyclarys is not a cure, but it has been shown to slow the progression of the condition. Earlier this month the HSE Drugs Group recommended that it should not be covered, having considered an assessment from the National Centre for Pharmacoeconomics.

The HSE stated that "there is evidence that Skyclarys may slow disease progression in Friedreich’s Ataxia, but there remain limitations and uncertainties associated with the available clinical efficacy data."

Cost sits at the centre of it.

Campaigners say that at its current price the drug would cost around €280,000 per patient per year, with a five-year budget impact of roughly €130 million.

As RTÉ News reported, there is broad political support for approval across Leinster House, including from opposition parties and within Fianna Fáil and Fine Gael.

The decision, though, rests with the HSE, which will make its call after Tuesday’s senior management meeting.