Further pressure on Taoiseach to intervene on provision of Skyclarys

Sinn Féin leader Mary Lou McDonald on Friday wrote to Micheál Martin asking that he take action. File picture: Niall Carson/PA

The Taoiseach has been urged by yet more politicians to intervene on the provision of Skyclarys.

Skyclarys is the only drug approved for the treatment of Friedrich's Ataxia, a rare progressive neuromuscular condition affecting around 200 people in Ireland.

Earlier this week, the HSE Drugs Group made its recommendation against the drug, raising concerns about “limitations and uncertainties” associated with the efficacy of the drug and its current price.

A final decision on the drug is expected to be made by the HSE later in August.

Sinn Féin leader Mary Lou McDonald on Friday wrote to Micheál Martin asking that he take action.

She said that Skyclarys “has been approved for use across the European Union since February 2024 and is now publicly funded or otherwise accessible in a number of European countries”.

“I am asking you, as Taoiseach, to intervene to ensure that there is full transparency around the HSE assessment, the findings of the Drugs Group and the basis upon which this decision was reached.

“Patients and their families are entitled to know what evidence was considered, what factors determined the outcome and, crucially, what options remain open to them.”

Independent Ireland leader Michael Collins said the Government should "cut the bullshit" around the drug.

He made the comments following a meeting with Emma O'Shea, a patient from Cork living with Friedreich’s Ataxia, who has been campaigning for access to Skyclarys.

“This is life and death. Patients like Emma are living with a devastating condition and every day matters. This isn't something that can be put off for four weeks or four months. The impact is happening right now," he said.

“Emma has been absolutely clear that Skyclarys will not cure her. But it could help slow the progression of this terrible disease and give her and other patients more time and a better quality of life."

Letters from 47 Fianna Fáil TDs, senators, and MEPs were sent on Thursday to Health Minister Jennifer Carroll MacNeill, Mr Martin, Tánaiste Simon Harris, and HSE chief executive Ann O'Connor. Spokespeople for the government members declined to comment.

In a statement earlier this week, the HSE said its Drugs Group had “considered an assessment from the National Centre for Pharmacoeconomics which found that while there is some evidence that this drug may slow disease progression in Friedreich’s Ataxia, that there remain limitations and uncertainties associated with the available clinical efficacy data”.

It added: “They also concluded that the current price was substantially above the level typically regarded as cost-effective in Ireland, having regard to the limited efficacy of the drug.”

A Government spokesperson said: “Government is deeply aware of the concerns of those with Friedreich’s Ataxia and their families in relation to access to Skyclarys. The statutory process regarding the consideration of the drug is ongoing.”

• Paul Hosford is Deputy Political Editor.