Cezy (pictured in the tiger hat) with Minister Simon Harris
A Kilkenny youngster who lives with a rare genetic condition has met with the Minister for Health, Simon Harris to raise awareness of her case.
Fianna Fáil Deputy Bobby Alyward has previously raised her case at national level and also attended the meeting at Leinster House.
Cezy Fosca (11) was diagnosed with Morquio Syndrome at the age of two - it is a rare genetic condition which results in the abnormal development of the bones including the spine, along with fatigue and painful joints.
The HSE has refused to pay for the drug, Vimizim, that Cezy has been using since 2011. Initially Cezy was selected to go on a trial for the drug - and she has remained on it since. The manufacturer has provided the drug free of charge on compassionate grounds while the family were waiting for it to be assessed by the National Centre of Pharamacoeconomics. The centre has now decided not to recommend it for reimbursement.
The HSE has stated that the final decision is with them and they have informed the maker, BioMarin that they would not be reimbursing it. However Minister Harris assured Cezy and her family that he would speak to the HSE in relation to the matter.
Deputy Alyward has also met with Eleanor Hannon of BioMarin International Limited in Leinster House to discuss the HSE reimbursement of the drug Vimizim.
Deputy Alyward told The Kilkenny People that he was ‘very eager to see the HSE reverse their decision so that such genuine cases will retain their access to the drug’.