The 29-year-old with a life-threatening condition campaigning for access to a drug which could improve her life
27 January - 10 minsAt 29 most young people are looking forward to building a life and settling down, but for Niamh Ni Hoireabhaird this takes a bit of adjustment. She is newly married, but is living with Friedreich’s ataxia which is a rare and progressive neuromuscular condition which is beginning to deteriorate.
Niamh was hoping that a new drug which could potentially help her condition and improve her life would be made available, but because this isn’t deemed cost-effective those hopes were dashed last month.
In a statement, The National Centre for Pharmacoeconomics confirmed that a HSE reimbursement decision has not been made as it is currently in the drug approval process.
Niamh Joined Sean to disc...
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