There was good news last night as the HSE confirmed that they have reached an agreement to provide the drug Soliris to sufferers of two extremely rare diseases at an annual cost of €430,000 per patient.
The HSE say due to the cost of the drug, it will be administered to sufferers of Paroxysmal Nocturnal Hemoglobinuria (PNH) and atypical Haemolytic Uraemic (aHUS) on the basis of clinical need. They also say that staff treating the conditions have been asked to apply to the HSE’s Medicines Management Programme (MMP) in order to commence a screening process for their patients. The new screening process will commence immediately.
However the HSE have criticized the manufactures of the drug calling the price tag for the drug astronomical and have strongly appealed to Alexion to reduce the cost of supplying Soliris. The HSE released a statement, regarding the issue in which they say: “The HSE had attempted to negotiate a more reasonable cost for this important drug. However, the drug manufacturer concerned refused, and continues to refuse, to provide Eculizumab at a reasonable and sustainable price.”
Meanwhile the Director general of the HSE Tony O’Brien slammed the manufactures Alexion saying: “This is an astronomical price to pay for any drug. However, the HSE did not want the patients awaiting access to Eculizumab caught in the crossfire between a drug manufacturer attempting to enhance its corporate profits at all costs, versus the HSE attempting to protect scarce money for delivering health services.”