Sinn Féin leader Mary Lou McDonald has written to Taoiseach Micheál Martin asking him to intervene after a refusal by the HSE to fund a drug for the rare disease Friedreich’s ataxia.
In her letter she urged the Taoiseach to “use your office to ensure that patients and families are heard, and that every possible means of securing access to this treatment is pursued without further delay”.
McDonald’s letter comes after a majority of Fianna Fáil’s parliamentary party called on the HSE to reconsider its refusal to fund the drug, omaveloxolone, branded as Skyclarys.
Friedreich’s ataxia causes progressive damage to the nervous system. Individuals with the condition have a shorter-than-average life expectancy. About 200 people have the condition in Ireland.
In February 2023, Skyclarys was approved in the United States for the treatment of the disease. The EU 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.
