A treatment for a rare genetic disorder, Friedreich’s ataxia, should not be reimbursed by the Health Service Executive (HSE), its drug group has recommended.
The disease causes progressive damage to the nervous system, with individuals who have the condition having a shorter than average life expectancy.
In February 2023, the drug omaveloxolone, branded as Skyclarys, was approved in the US for the treatment of the disease. Europe followed suit 12 months later.
Skyclarys is not a cure, but patients and advocates say it has the ability to slow the progression of Friedreich’s ataxia by up to 55 per cent.
Despite its EU approval, the drug is not available through the HSE in Ireland.
