Sinn Féin TD for Dublin South West Seán Crowe has welcomed the news that a drug treatment for Duchenne Muscular Dystrophy, Givinostat, has now been made available in the Belfast Trust and has opened the assessment stage, saying that the scheme should be extended to children living in the south in the interim while the treatment goes through the HSE’s authorisation process.

The Oireachtas Committee for the implementation of the Good Friday Agreement agreed this week to write to the two Health Ministers in the Oireachtas and Stormont to urge an agreement on provision of treatment be reached.

Teachta Crowe said:

“It is very welcome news that a treatment for Duchenne Muscular Dystrophy, the drug Givinostat, has now been made available in the Belfast Trust and has opened the assessment stage. This treatment can buy children valuable time as they fight against this life-limiting condition which leads to progressive muscle loss as a child grows.

“The scheme should be extended to children living in the south in the interim while the treatment goes through the HSE’s authorisation process. Children suffering from DMD do not have the luxury of waiting long months or years while civil servants and pharma companies compare notes.

“The Oireachtas Committee for the implementation of the Good Friday Agreement agreed this week to write to the two Health Ministers in the Oireachtas and Stormont to urge an agreement on the roll out of treatment be reached.

“Families of children with DMD say that ‘time is muscle’ and if we can get a child this new wonder drug even one day earlier, then we must reach an agreement and fast.”