Labour health spokesperson Marie Sherlock has called on the Minister for Health to personally intervene ahead of the HSE’s decision on whether it will fund Skyclarys for people living with Friedreich’s ataxia.
The Dublin Central TD said the decision is “hugely important” for people living with Friedreich’s ataxia and for their families.
“I wrote to the Minister for Health last week asking her to personally intervene and make clear the importance of finding a way forward,” she said.
“We are acutely aware of the enormous cost involved but Friedreich’s ataxia is a debilitating condition. Skyclarys offers the potential to slow that progression. For the small number of people in Ireland living with this condition, that could mean precious additional time with greater independence and a better quality of life. It offers something that patients and their families desperately need: hope.”
Sherlock noted that the case highlights the wider challenge facing Ireland and other smaller countries when it comes to accessing high-cost medicines for rare diseases.
“The government, with the current EU Presidency, must push for much stronger leadership at EU level, including coordinated negotiations with pharmaceutical manufacturers to secure fairer and more sustainable prices,” Sherlock said.
“Minister Carroll MacNeill must take action now, engage directly on this decision and fight for a solution that gives people with Friedreich’s ataxia access to a treatment that could make a profound improvement to their lives.”