Cezy and her mother, Elena
The plight of a Kilkenny youngster, who lives with a life-limiting condition and has had her medication pulled, was raised in the Dáil last week.
Cezy Fosca (11) has Morquio Syndrome - a degenerative condition affecting major organ systems which substantially limits the quality of life of those affected.
Last month the medication, she has been taking for the past seven years, was withdrawn and Cezy no longer has access to the drug.
Deputy Bobby Aylward has previously raised the matter in the Dáil and the brave 11-year-old has personally pleaded with the Minister for Health, Simon Harris.
In 2011, Cezy was one of two children, included for trials for Vimizin - which is the only enzyme replacement therapy designed to target the underlying cause of this disease.
The Health Service Executive drugs group has denied a number of applications for reimbursement made by the manufacturer, Biomarin. A new application was made in December and a decision is expected over the coming weeks.
Deputy Bobby Aylward raised the matter in the Dáil and stated that the programme for Government commits to ensuring that every young person is enabled to reach their full potential.
"On this day four weeks ago, I raised as a Topical Issue the reimbursement of the drug Vimizim for the treatment of Morquio A syndrome on behalf of an 11 year old girl from Kilkenny who suffers from this condition. I met the Minister on two occasions when the family was seeking to have this issue sorted out.
"The HSE drugs group has denied a number of applications for reimbursement. However, written replies to parliamentary questions reveal the drug was discussed at a meeting of the group on 18 January. During the aforementioned Topical Issue debate, the Minister of State, Deputy Jim Daly, assured me that efforts would be redoubled and that the Department would make contact with the HSE that day to seek further updates. I had expected an update from the Minister, Deputy Harris, or the Minister of State, Deputy Jim Daly, but I have yet to receive one. Has the Minister contacted the HSE drugs group in respect of reimbursement of the drug?
"This drug is available in the UK and in most countries in Europe. It is endorsed by their governments and is handed out, yet, while it is manufactured here in Cork, we cannot use it in Ireland. What is wrong? What is wrong with the drugs group that it cannot come up with an answer and give these people some quality of life? It affects eight children in total but only three children who need it are getting it," added Deputy Alyward.
The Taoiseach, Leo Varadker replied and said that he will inform the Minister for Health, Deputy Harris, that Deputy Aylward has raised the matter.
"We are having a long, hard and deep look at medicines for rare diseases and orphan drugs. While it may not always be the right thing to reimburse a medicine, I do not think any of us like a situation where a medicine is available and reimbursed in another European country, particularly if it is the one next door, and not in Ireland. It is something we are going to make a move on, I suspect, in the next weeks or months," he added.
A spokesperson for the HSE confirmed that a further application for reimbursement is currently being considered by the HSE.
"Negotiations with the Pharmaceutical company are continuing and no further comment can be made by the HSE until these discussions are concluded," added the spokesman.