11-year-old Cezy Fosca
Fianna Fáil Deputy Bobby Alyward has raised the case at national level of a Kilkenny youngster who desperately needs to remain on her medication.
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.
In 2011 Cezy was selected to go on a trial for a drug - Vimizim and she has remained on it since. The drug is a form of enzyme replacement treatment and was approved by the Euopean Medicines Agency in 2014. 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, which 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.
Deputy Alyward met with Eleanor Hannon of BioMarin International Limited in Leinster House this week to discuss the HSE reimbursement of the drug Vimizim.
“I have tabled a number of Dáil Questions on behalf of BioMarin to Minister Harris and I am seeking to personally discuss the matter with him at the earliest opportunity.
“I look forward to working further with BioMarin and our Spokesperson for Health, Billy Kelleher T.D in an effort to get this drug reimbursed in Ireland. I am very eager to see the HSE reverse their decision so that such genuine cases will retain their access to the drug," he said.