Minister must intervene to give green light to HSE Skyclarys decision tomorrow.
Minister must intervene to give green light to HSE Skyclarys decision tomorrow. - The Labour Party
- Clinical results demonstrate that for some Friedreich’s ataxia sufferers, Skyclarys offers real hope of slowing down progression.
- Green light to Skyclarys must come with commitment to end excruciating protracted medicines approval process for rare diseases sufferers. It must be overhauled.
- Minister must end the groundhog day situation where Ireland health system faces extraordinary prices negotiating for rare disease medicines and instead must seek to push for EU wide procurement processes.
Labour health spokesperson Deputy Marie Sherlock has called on Minister for Health to personally intervene ahead of the HSE’s decision tomorrow, 25th August, on funding Skyclarys for people living with Friedreich’s ataxia.
Deputy Sherlock said:
“Tomorrow’s 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.
“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.
“This case also highlights the wider challenge facing Ireland and other smaller countries when it comes to accessing high-cost medicines for rare diseases. 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.
“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.”