Kilkenny woman suing HSE over delays to medication access
The HSE Drugs Group referred the decision to the Rare Diseases Technology Review Committee, producing another weeks-long delay
Kilkenny campaigner Emily Felix, who is living with the rare neuromuscular disease, Friedreich’s ataxia (FA), has commenced a lawsuit against the HSE due to delays in its decision on whether to reimburse groundbreaking medication to treat the condition.
Emily and other people in Ireland with the condition have been spearheading a push to gain access to Skyclarys, a medication which has been shown to be able to slow FA’s progression by up to 55%, but the decision on whether the HSE will provide it in Ireland has repeatedly been pushed back.
The case is asking the High Court to direct the HSE to finalise the decision on the approval and reimbursement of Skyclarys with Judge Cian Ferriter granting permission to Emily and her counsel to proceed with the judicial review.
Emily is also seeking provision for an interim access arrangement to the medication while the overall decision is pending with her lawyers’ submission stating that “without access to treatment capable of slowing progression now, her condition may deteriorate to such an extent that future treatment opportunities may ultimately be of little practical benefit to her.”
First approved by the European Medicines Agency (EMA) in February 2024, Skyclarys is publicly funded in multiple countries such as Italy with a recommendation for reimbursement also being made in Canada.
Despite this, National Centre for Pharmacoeconomics (NCPE) recommended that the drug not be considered for reimbursement in Ireland, a decision which sparked the current campaign.
Now 28, Emily was 12 when first diagnosed with the condition which affects motor skills, speech and can lead to health complications such as heart problems later in life.
Around 200 people in Ireland are living with Friedreich’s ataxia.