Skyclarys funding a hugely welcome decision for Friedreich’s ataxia patients
Skyclarys funding a hugely welcome decision for Friedreich’s ataxia patients - The Labour Party
Labour health spokesperson Marie Sherlock TD has welcomed the HSE’s decision to fund Skyclarys for people living with Friedreich’s ataxia, describing it as a hugely important day for patients and their families.
Deputy Sherlock said:
“This is a hugely welcome decision and, above all, a very important day for people living with Friedreich’s ataxia and their families.
“Skyclarys has the potential to slow the progression of this debilitating condition and offer patients greater independence and a better quality of life. For the small number of people in Ireland living with Friedreich’s ataxia, access to this treatment will bring real hope.
“I commend the patients, their families and supporters who have campaigned so strongly on this issue. Their determination has helped bring us to this point and I am delighted that today they finally have some good news.
“But people living with rare diseases, who are already dealing with debilitating and life-changing conditions, should not have to endure an excruciating process simply to access potentially transformative medicines. We need a specific and more compassionate approach to providing access to medicines for people with rare diseases.
“There is also a much bigger question about how Ireland negotiates with pharmaceutical manufacturers on high-cost medicines. Government must examine how we can secure fairer prices and faster access, including through greater cooperation at EU level. Today’s decision is hugely welcome, but it must also be a catalyst for a better approach.”