Order of Business: Cystic Fibrosis


Senator Katherine Zappone

I want to welcome and acknowledge the journalist, human rights activist and campaigner, Orla Tinsley, who is in the Visitors Gallery today. I invited Orla to the House because I wanted to acknowledge her extraordinary leadership, as a young woman, on the public record and in her presence.

We are all aware of the tireless, dignified and effective campaigning that Orla Tinsley has done on behalf of herself and all those with cystic fibrosis in Ireland. Most recently, her work and that of others has resulted in the Minister, Deputy Reilly’s very welcome announcement that the Kalydeco drug will be made available to the 120 cystic fibrosis patients who can reap the extraordinary benefits of this medicine.

As Mr. Tony O’Brien, director general designate of the HSE has said, the discussions surrounding the availability of this drug have raised “profound ethical and financial issues” for the State. To be sure, there are ethical issues involved. I might add that it is very welcome that policy makers and politicians acknowledge this. In fact, it is also true that all priorities related to financial issues have ethical implications for the way we recover as a society and as an economy, particularly in order that the foundations of our transformed Republic might reflect that reality. Otherwise, we would be simply involved in rebuilding a political and economic model that mirrors the one that brought us to the implosion of our financial security, with the consequent risk to the well-being of most of our people.

Like most Irish people, I wondered if Orla herself would benefit from the accessibility of this drug, which was assessed by the National Centre for Pharmacoeconomics in January 2013 and found to have significant benefits for those who take it. It will improve their quality of life and, given the significant improvements in lung function, it can be realistically hoped that many will be taken off the lung transplant list and be able to get back to work. I found out by tweet that, in fact, Orla is not one of those 120 with the mutation of the disease that would allow her to benefit from this treatment. Yet, she presents such an extraordinarily beautiful face of hope for those who can benefit, and puts out the message that other drugs will be developed, hopefully, for those who suffer with the disease. She is a hero and a leader to whom we, as lawmakers, must continue to listen.

In light of the developments within the health sector, I ask the Leader to organise a debate with the Minister, Deputy Reilly, to discuss future procedures for prioritising the access to new drug treatments.

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