Time for talking on PNH drug price is over – McEntee

“The time for talking about providing the drug Soliris, which is used to treat the rare blood disorder paroxysmal nocturnal haemoglobinuria (PNH) is over. We must urgently find a solution and provide it to those who are currently in desperate need of it,” says Fine Gael TD for Meath East, Helen McEntee”

“John Duggan a young man from Bellewstown Co. Meath was diagnosed with this rare blood disorder in 2010 and since then has been living in fear blood clots, a heart attack, kidney failure and god knows what else. He is one of two known people in need of the drug and at the moment we are witnessing a standoff between the HSE and the drug company providing it, Alexion Pharma.”

Addressing the Minister for Health in the Dail this week Deputy McEntee outlined the fact that in 2008 the HSE entered into an interim agreement between Alexion Pharmaceuticals and St. James’s Hospital to treat 4 people. These 4 people went through trials and it was then decided in 2010 to include a further 6 people. 

Deputy McEntee told the Dail:  “We now have in 10 people in Ireland being treated for PNH through the HSE. But there are two people who are not. This is not just unfair, it is unethical. Having spoken to the pharmaceutical company this week I am aware that talks have reopened between themselves, the HSE and other relevant bodies. This is of course good news but while these talks are taking place John Duggan, is still going to bed every night not knowing whether or not he is going to be provided with this life saving drug. And that’s not good enough, we need a solution now.”

Deputy McEntee asked the Minister for Health to ensure that this matter is a top priority for the HSE. She also facilitated a meeting between John Duggan and his wife Aileen with the Oireachtas Health Committee Chair, Deputy Jerry Buttimer. The Chairman agreed to request the HSE and Alexion Pharma before the committee if an agreement is not reached shortly.