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A demonstration outside Leinster House in Dublin to pressure the HSE to approve reimbursement for a drug treating a rare neurological condition. PA
emily felix
TDs call on pharma company to work with HSE to give access to life-changing drug Skyclarys
The HSE has refused to fund the drug, which costs €288,000 per patient per year.
FINE GAEL MEMBERS today met with the manufacturers of Skyclarys, a disease-modifying drug for the rare disease Friedreich’s Ataxia.
Pressure has been mounting on government leaders to intervene and reverse a HSE decision recommending against funding the treatment, which costs €288,000 per patient per year.
The treatment was approved by the European Medicines Agency in February 2024 and has been made available to patients in other European countries, but it is not available to around 200 patients in Ireland.
It is the only licensed treatment available for Friedreich’s Ataxia.
Last week, 47 members of the Fianna Fáil parliamentary party signed a letter to Health Minister Jennifer Carroll MacNeill, Taoiseach Micheál Martin, Tánaiste Simon Harris and Ann O’Connor, Chief Executive of the HSE calling for the decision to be reversed.
Meeting with Biogen company
Today, Fine Gael TDs Micheál Carrigy, Catherine Callaghan, Seán Kyne, David Maxwell, Noel McCarthy, John Paul O’Shea and Senator Noel O’Donovan, met with Biogen, the biotechnology company that makes the drug.
“We each have had a lot of contact with patients affected by this rare disease, as well as their families and advocacy groups and understand that the HSE’s drug group’s recommendation not to cover the cost of Skyclarys is devastating for them.
“We are committed to continuing to represent them to all stakeholders and today’s meeting with Biogen will, we hope, assist progress between the company and the HSE,” said Carrigy.
He said the objective of today’s meeting was to appeal to Biogen to engage fully with the HSE on what is possible to get patients access to this drug.
Biogen was also asked to give consideration to developing a compassionate access programme for patients and for this to be done in advance of the next HSE senior management meeting on 25 August.
Emily Felix, a trainee solicitor from Co Kilkenny, who has campaigned for the drug to be approved, has called on the public to attend a peaceful protest at Dublin’s Garden of Remembrance on Sunday at midday.
She said this is “more than a medicine, it is about our futures, our independence and our change to live fuller lives”.
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