HSE to extend Soliris drug to PNH & aHUS patients – Deering

4th February, 2015

Fine Gael Carlow/ Kilkenny TD, Pat Deering, has today (Wednesday) welcomed confirmation from the HSE that they are to extend access to the drug Eculizumab (trading as Soliris), for patients with the conditions Paroxysmal Nocturnal Hemoglobinuria (PNH) and atypical Haemolytic Uraemic (aHUS).

“I have been advocating for this drug to be State funded ever since I heard the story of Ballinakill woman Mary Gorman who has PNH, a very rare and debilitating disease.

“Unfortunately the drug Solaris, considered to be one of the most expensive drugs in the world, was not accessible for all patients who needed it, as the HSE didn’t fund it.

“Today’s move by the HSE to provide access to this drug is a significant step forward for these patients. Due to the exorbitant cost of this drug (approximately €430,000 per patient per year) the provision of Eculizumab for patients will be on the basis of clinical need. This screening process will commence immediately.”