Woman, 28, with rare disease Friedreich's ataxia sues HSE over access to drug

Emily Felix, 28, was 12 years old when she was diagnosed with the rare, inherited, and progressive neuromuscular disease and wants High Court to direct the HSE to finalise its decision drug capable of slowing progression of disease

Emily Felix is taking a High Court action against the HSE seeking access to the medicine omaveloxolone. Picture: Collins Courts

A Kilkenny woman diagnosed with Friedreich’s ataxia (FA) has sued over alleged delays in the HSE determination of an application seeking the approval of a drug capable of treating the rare condition.

Emily Felix, 28, was 12 years old when she was diagnosed with the rare, inherited, and progressive neuromuscular disease. She is fully reliant on a wheelchair for mobility and requires assistance with “virtually all aspects of daily living” on account of her condition.