Deputy Marc MacSharry.
Fianna Fáil TD for Sligo-Leitrim Marc MacSharry has called on the Health Minister to ensure that Vimisim, a drug which treats the ultra-rare disease Morquio A Syndrome (MPS IVA) is added to the Drug Payment Scheme.
Deputy Mac Sharry says the relative budget impact for the HSE should be minimal as only a very small number of patients require the medication.
“I met some of the patients who take Vimisim last year during a visit to the Oireachtas and having discussed their condition with them and the difference that this drug has made to their quality of life, I am convinced that it should be added to the Drug Payment Scheme. Patients have been able to access the medication through a free drug scheme run by the manufacturer BioMarin as it cannot be bought here”, explained Deputy Mac Sharry.
“Vimism is available in Northern Ireland, the UK, France, Germany and other countries. If they are acknowledging that the drug works, I see no reason why the HSE Drugs Group should not also accept the evidence and ensure continued access to the drug. Indeed, it would be deeply ironic if this drug, which is manufactured in Ireland by BioMarin, is not available to patients in Ireland.
“I am calling on the Minister for Health Simon Harris, who met with the two girls in the Oireachtas before Christmas, to make a commitment to ensure that the drug will be reimbursed by the HSE and that patients who need the drug will be able to have access to it.”