Monaghan woman encouraged by Fianna Fáil intervention on Skyclarys drug

A Monaghan woman campaigning for access to a potentially life-changing treatment for Friedreich's Ataxia has welcomed a major show of political support, following a setback in her fight for reimbursement.

Aoife Gavan (21), from Castleshane, had been deeply disappointed after the HSE Drugs Group upheld a recommendation not to reimburse Skyclarys, the first approved treatment for Friedreich's Ataxia, a rare progressive neurodegenerative condition.

The decision, made on Tuesday, August 11, reaffirmed an earlier recommendation by the National Centre for Pharmacoeconomics (NCPE), issued last December.

In response, more than 60 Fianna Fáil representatives, including members of the Parliamentary Party and three MEPs, signed an open letter urging Taoiseach Micheál Martin, Tánaiste Simon Harris, Health Minister Jennifer Carroll MacNeill, Minister of State Seán Canney and HSE chief executive Anne O'Connor to intervene.

The letter called on the Government to "use whatever powers are available" to ensure families affected by Friedreich's Ataxia are given access to treatment, arguing that patients with rare diseases are not receiving "a fair hearing within a reasonable timeframe".

Speaking to the Celt, Ms Gavan welcomed the intervention: "It's very, very encouraging and I suppose it has given me hope to hear Fianna Fáil taking it so seriously. They have been so helpful throughout the whole campaign. I do think Fianna Fáil have been the most helpful, the most proactive at this point."

While praising Fianna Fáil's efforts, Ms Gavan also acknowledged support from across the political spectrum.

"There are other politicians who are going above and beyond to help us out. I am so, so grateful to all of them. My concern lies with the HSE Leadership Group listening to the people."

She said the backing from elected representatives was welcome at a crucial stage of the campaign and showed that the concerns of patients and families are being heard.