Our daughter is suffering while a drug is available five miles away
A little girl suffering from an extremely rare and painful condition is still waiting to hear if the HSE will pay for the only drug that can treat her, despite it being made generally available in the North of Ireland last week.
Although she lives five miles from the border, Grace Cogan (9), who is in constant pain, is still waiting to get access to the drug. Grace's mother Grainne said her daughter needs the drug Vimizim as she has Morquio - a rare but progressive debilitating disease.
"It is great news for Morquio patients living in the North, they have fought so hard to get access to this treatment," said Grainne.
Grace is one of just five children in Ireland with Morquio and Vimizim acts by replacing an enzyme that her body needs.
The condition has effected her growth, so she is the size of a 2-3 year old and she does not have the energy or mobility of her peers. However, the estimated cost of the drug is almost €400,000 per patient, per year.
Vimizim was last week sanctioned for general use by the North's Health Minister Michelle O'Neill; to date only those who took part in the clinical trials of it were able to get it.
Grace and her family live outside Carrickmacross, in County Monaghan, and Grainne said: "We live approximately five miles from Northern Ireland and Grace cannot get this treatment. The Government is now on 10 weeks' holidays, will we have to wait another 10 weeks?" She said Grace "is suffering needlessly."
The manufacturer, BioMarin, has made an application for it to be funded by the HSE, which said "the assessment process is ongoing."