People Before Profit TD Gino Kenny will raise the issue of access to the drug Kaftrio, a drug used for the treatment of cystic fibrosis in the Dáil today at Promised Legislation.
The TD will call on the Minister for Health to meet with the families of children who are under the age of 12 who are seeking access to the drug but are unable to get it. The children are being denied due to a price dispute between the HSE and the drug manufacturer.
According to the parents everyone over the age of 12 has access to this drug. It was made available to 140 other children aged 6-11 this month but because these 35 children have a rare genotype in this age bracket, they have been excluded from the deal that was originally signed in 2017.
The TD will press to Minister to resolve this issue quickly so that there is not a repeat of the protracted process experienced by those seeing the Orkambi drug.
He will say: “Children are being denied this life changing drug because of a dispute between the HSE and the drug manufacturer. The government and minister need to meet these families and resolve this issue immediately so these children can get access to this vital medication.”