‘They feel helpless’ - Kilkenny TD criticises delay in access to rare disease medication
Local campaigners have been pushing for access to Skyclarys, a drug which can slow the progress of Friedreich’s Ataxia
Sinn Féin TD for Carlow/Kilkenny, Natasha Newsome Drennan, has labelled a Dáil exchange with the Taoiseach as “profoundly inadequate”, as the Taoiseach offered what she called a vague commitment to “talk to the Minister again” in response to urgent calls to end the near 700-day HSE reimbursement delay for the life-changing drug Skyclarys for those suffering with Friedreich’s Ataxia.
Despite the Taoiseach admitting the situation is serious and urgent, Deputy Newsome Drennan asserted that his response was dismissive, non-committal and has left families feeling abandoned.
Speaking in the Dáil, she detailed the harsh reality facing patients, notably young Kilkenny woman Emily Felix, whose condition has rapidly deteriorated during the HSE deliberation.
“It is now nearly 700 days and the HSE has still not made a decision on the reimbursement for the drug Skyclarys. Other EU citizens are receiving this transformational drug thanks to support from their governments,” she said.
“Why are the HSE and Irish Government not supporting Irish citizens who urgently need it? At the start of the year when Emily visited the Dáil, she only needed one person to help her. Now she needs two.”
“I spoke to Emily’s mother this week. They feel helpless. The Minister for Health will not meet with them, all they are receiving are generic replies,” she added.
Deputy Newsome Drennan called on the Taoiseach to intervene personally and to compel the Minister for Health to meet with the suffering families.
“The Taoiseach acknowledged the ‘urgency and seriousness’ but offered no concrete action or timeline. He described the engagement between the HSE and the drug’s manufacturer as ‘problematic’ and noted that ‘delays have taken place’.”
“His only commitment was to ‘talk to the Minister again to see if we can get an outcome to this as quickly as we possibly can,” she added.
Deputy Newsome Drennan has criticised the response as dangerously vague and dismissive: “Talking to the Minister again is not a plan. Nearly 700 days have passed.”
“While the HSE stalls, patients like Emily are losing more and more abilities. We need a binding decision on Skyclarys reimbursement now to ensure young people are given the support they need,” she concluded.