I don’t know how our little girl will cope after funding for medicine pulled by HSE
Cezy, 11, hit by rare genetic condition
Grace Cogan with her mum Grainne who live in Kilkenny, were delighted that Cezy was one of two Irish children included in the trials for Vimizim which began in September 2011.
It was approved by the European Medicines Agency in 2014 and the manufacturer Biomarin continued to provide it free of charge on compassionate grounds.
In the meantime they were waiting for Vimizim to be assessed by the National Centre for Pharmacoeconomics which decided in December not to recommend it for reimbursement.
The HSE said the final decision lay with them and last month they informed Biomarin that they would not be reimbursing it.
In a letter to the girl’s consultant in Temple Street Children’s Hospital, Dublin, the company said the HSE refused to reimburse Vimizim in Ireland “due to lack of clinical data and a perceived lack of value for money”.
“While Biomarin has been given leave to appeal this decision and is going through the appeal process, there is no guarantee, despite best efforts, that the appeal will be successful.” As a result, the letter said, it was “with regret” the company was ceasing free access to Vimizim in Ireland. Earlier this year Grace Cogan, 9, from Co Monaghan, succeeded in getting her treatment with Vimizim approved by the HSE after a campaign led by her mother Grainne. On Friday Grainne said that after 11 weekly transfusions of Vimizim “her joint pain has improved, her appetite is better, her breathing is better, she is brighter in herself and it definitely is working for her”. elaine.keogh@irishmirror.ie
It gives her stamina and energy and it is our only chance for her
ELENA FOCSA MOTHER OF CEZARA WHO FACES LOSING DRUG ACCESS
Vimizim