‘Such a relief’: Longford woman with rare disease very positive after drug approval

A North Longford woman with the rare, neuromuscular disease Friedreich’s ataxia has said she is ‘very positive about the future’ after HSE Skyclarys drug reimbursement decision. On Tuesday, the Health Service Executive approved the reimbursement of the drug Skyclary after the drug company Biogen made a significantly improved offer to the HSE. The HSE Drug Group had previously recommended several weeks ago that the treatment, which previously had an estimated cost of approximately €280,000 per person per year, was not cost effective. However, the HSE subsequently decided to approve Skyclarys for reimbursement once the improved offer was made. There are at least 12 people with Friedreich’s ataxia in county Longford and 200 across Ireland. Kiara Lynch, 42, from Aughnagarron, Granard, who was diagnosed when she was just 13 and her older brother Liam also has the disease. She said the news finally gives them a chance. “It is just such a relief. After 29 years of there being nothing to help me and everyone else with this disease, there is now finally a bit of hope.” Kiara said she was grateful to Longford TD Micheál Carrigy for his assistance. More than 1,200 people, including a large number of families from county Longford, also attended a peaceful demonstration in Dublin city centre on Sunday calling for the reimbursement of Skyclarys. Kiara said, “I am so grateful, thank you so much and t is so appreciated. “However, I do not feel that we should have had to go through this. “I think the process for deciding these things for rare diseases needs to change, as I found the last two years of waiting torturous. “But I will definitely take this win, and I am very positive about the future.”