HSE must to come to a decision on Solaris drug price – Doherty

Fine Gael TD for Meath East, Regina Doherty, has today (Thursday) called on the HSE to accept or reject the new pricing offer from the pharmaceutical company Alexion for the drug eculizumab, or Soliris, which is used to treat paroxysmal nocturnal haemoglobinuria (PHN).

“A new, more financially favourable offer is on the table since last November 2014 and I believe the HSE should accept the offer. Time is not on the side of patients like John Duggan, from Bellewstown, Co. Meath, who is awaiting the outcome of these negotiations. 

“The HSE have the offer since last November. Meetings took place on Tuesday and Wednesday of this week to further move discussions on. The HSE now need to accept or reject the offer or seek a new offer if necessary. This cannot drag on; the HSE must declare its position and move forward. 

“The HSE has been paying for this drug for ten people since 2010, at a price that was agreed at that time. I want to know what is the difference between the 2010 price and the November 2014 offer price? How much cheaper is the new offer price?  What is the price the HSE wants to pay, and most importantly, what is the delay in making this decision? 

“The additional 6 PHN sufferers selected for treatment in 2010 were selected on the basis severity of diagnosis and frequency of blood transfusions. Well John Duggan is having blood transfusion every six weeks, he is constantly tired and he and his wife Aileen are both petrified of blood clots. The limbo they are both in is not acceptable.”