Calls have been made to allow a group of children with Cystic Fibrosis to be allowed access to a potentially life-changing drug.
Anja Friel’s 5 year old son Tristan has the rare disease, and says that initially they were promised that Tristan would be allowed access to the drug Kaftrio.
However, Tristan and 34 other children with Cystic Fibrosis were told only a few weeks ago that they would be excluded from a HSE scheme to get the drug – despite 140 other children with CF receiving Kaftrio through the same scheme.
The main reason given for excluding the group of 35 children from the scheme is because they have a different genotype to the 140 who are now receiving the drug.
Tristan’s mother Anja claims that his exclusion from the scheme is a financial decision from the HSE:
