Deputy Martin Kenny
Sinn Féin TD for Sligo-Leitrim, Martin Kenny, has today called again on Health Minister Simon Harris TD to compassionately intervene to encourage the HSE and the drug company Biomarin and find a way to provide the drug Vimizin to the two little girls who depend on it
Deputy Kenny said: “The two girls, Grace McIntyre from Leitrim and Cezy Fosca from Kilkenny have the potentially life-threatening and rare condition Morquio Syndrome, but both responded well during trials of the drug Vimizin.
“However, the manufacturer Biomarin has withdrawn the drug from the two girls while the HSE has denied a number of applications for reimbursement of its cost.
“This drug is the only enzyme replacement therapy designed to target the underlying cause of this disease. I have been working with the families of the two girls and facilitated meetings with Minister Harris. Now, it is up to the HSE Drugs Group, which up to now has rejected their plea for the cost of the drug.
“The drug manufacturer needs to continue to allow these children to have access to Vimizin, as the data from their use has been used to prove the effectiveness of this drug.
“I met Minister Harris twice last week on this issue. I am actively engaging with the Minister to get him to compassionately intervene to encourage the HSE and the drug company Biomarin and find a way to provide the drug Vimizin to the two little girls who depend on it.
“I believe it is not beyond the capacity of our health service and the drug manufacturer to come to some arrangement whereby the girls can continue to avail of this life-changing drug. I repeat my call to them to meet again and come to a compassionate solution.”