Fianna Fáil Local Area Representative Daithí de Róiste has today urged the Minister for Health James Reilly to reconsider the decision of the National Centre for Pharmaeconomics (NCPE) not to make available the drug “Pirfenidone” to sufferers of Idiopathic Pulmonary Fibrosis (IPF).
IPF is a rare, chronic, progressive and debilitating disease which involves the development of scar tissue (fibrosis) in the lungs. Pirfenidone slows down the progression of IPF in patients with mild to moderate disease. The development of Pirfenidone is recognised as a major advancement for the treatment of IPF and was welcomed by healthcare professionals and patients world-wide.
De Róiste commented “The decision by the NCPE has caused huge distress to patients and families of those suffering from IPF. In essence, their one fighting chance has been taken away from them. Pirfenidone gives patients a fighting chance in limiting IPF until they can avail of a transplant. The news that the only drug treatment option available to those facing a debilitating illness will be withheld on financial grounds is simply devastating and I would call on Minister Reilly to make himself aware of this decision (if he is not) and to reverse it as soon as possible.”
He continued “I have spoken to one sufferer who has been told by her consultant that she has a 1% chance of receiving a lung transplant due to the fact only 14 such operations are carried out each year. By taking away this drug, Minister Reilly and the NCPE have dramatically reduced the chances of keeping the disease at bay until a suitable transplant can occur. What slim chance she had of a successful transplant has literally been taken away by the NCPE.”
“I would like to publically call on the Minister to see sense, intervene in this situation and reverse this decision. Over 70 patients are affected with this illness and now place their lives in his hands. The decision rests with James Reilly, and him alone.”
“He demonstrated with Cystic Fibrosis sufferers and the availability of Kalydeco that he has the power to do so. I call on him to use it. Kalydeco costs 200,000 per per patient for treatment whilst Pirfenidone is €32,700 per annum. What makes the lives of a Cystic Fibrosis sufferer more important than an IPF sufferer?”
“A positive decision from Minister Reilly will go a long way to ease the anxiety of IPF patients, who are waiting with their lives in the balance.”