“Unforgivable” is how Kilkenny TD John McGuinness has described the HSE Drugs Group recommendation for the State to not fund Skyclarys, a drug used to treat Friedreich’s Ataxia.
Around 200 people in Ireland have the condition – yesterday we heard from Kilkenny woman Emily Felix who lives with the condition. (Hear what she had to say here).
HSE management will make a final ruling on the 25th of August and Deputy John McGuinness says he’ll be pressing them to following the example of other European countries, telling KCLR News; “I can assure you that I with many colleagues in the Dáil, across parties and none, have one thing on their mind right now and that is to put political pressure on all of the Government members, particularly the Taoiseach and Tánaiste to ensure that the HSE understands that this is not a case of putting funding or money first, this is the case of putting the health and well being of young people first”.
Colleague Peter ‘Chap’ Cleere has issued the following;
