Fianna Fáil Leader Micheál Martin TD has welcomed the announcement that a life-saving drug will be provided to people suffering from a rare genetic blood disorder. Agreement has been reached between health authorities and the manufacturer and Soliris will be made available to a small number of patients suffering from the condition.
Deputy Martin commented, “I am delighted that this decision has finally been made. It will make a huge difference to the quality of life of people like Mary Gorman and John Duggan, who have been living with this rare disorder.
“The High Tech Drug Scheme was established specifically for cases like this, and I’m very pleased that the HSE has finally seen sense and taken the correct decision to supply this life-saving medication.
“Mary Gorman and John Duggan have invested huge personal energy by embarking on a public campaign to raise awareness about paroxysmal nocturnal haemoglobinuria (PNH), something they should not have had to do in order to get access to this medication. Without their tenacity and dedication this decision may never have come to pass. This outcome is a victory for them and for all of the families who are affected by this appalling condition”.