A decision by the HSE to extend the provision of a costly drug to people suffering with two rare genetic disorders has been welcomed.

The HSE has confirmed that suffers of the diseases Paroxysmal Nocturnal Hemoglobinuria (PNH) and atypical Haemolytic Uraemic (aHUS) will have their access to the drug eculizumab (Soliris) extended.

The drug costs around €430,00 per patient per year and according to the HSE, due to the ‘exorbitant cost, the provision of eculizumab for patients will be on the basis of clinical need'.

PNH is an acquired disease that destroys the body's red blood cells, which are essential as they help deliver oxygen and remove waste from the body. Meanwhile, aHUS is a rare, life-threatening, genetic disease which can damage vital organs such as the heart, kidneys and brain.

Doctors can now apply to the HSE's Medicines Management Programme (MMP) to begin a screening process for their patients. This screening process is to begin immediately. The patients themselves do not need to take any action at this time.

The HSE pointed out that it has tried to negotiate a ‘more reasonable cost' for this drug, however the manufacturer ‘refused and continues to refuse' to lower the price.

"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," commented HSE director general, Tony O'Brien.

He warned that the huge cost associated with providing this drug will eventually impact on the HSE's ability to fund other important services, such as other drugs and homecare packages.

He called on the manufacturer to again reconsider the price that it charges for this drug in Ireland.

The news was welcomed by patients such as PNH sufferer, John Duggan, from Meath, who was diagnosed with the disease in 2010. Speaking on RTE Radio, Mr Duggan said that he and his wife had been considering emigrating so that he could access the drug elsewhere.

The news was also welcomed by politicians, including Fine Gael TD and chairperson of the Oireachtas Committee on Health, Jerry Buttimer.

"There have been protracted efforts by patients, their representatives and public representatives to get the HSE to make this decision. I would like to thank the HSE for taking this decision which will make a huge difference to the day-to-day lives of people with these rare diseases," he said.