Watch: Ireland has the highest rate in the western world of people who suffer with cystic fibrosis, Orkambi would transform lives

 

I thank the Leader for outlining the Order of Business. The Irish health system is pockmarked by the failures of the service itself and of politicians in terms of devising systems that do not work. In 2013, we highlighted that in the House with the recall of the Seanad to discuss organ donation. In one calendar year, 65 people on our organ donor waiting lists will die. Currently, there are 650 people waiting for liver, lung and heart transplants, of whom one in ten will die waiting. Other countries have systems that work to the point where they actually have an excess of donated organs. It has nothing to do with the generosity of the Irish people; it is simply a systems failure. Not only that, if we improved our system, it would save the taxpayer money. As the Leader knows, the cost of dialysis over a ten-year period is almost €325 million. Every organ transplant put in place would save money.

  The issue I raise specifically today relates to the Orkambi drug therapy for cystic fibrosis. The genetic profile of the Irish population means that Ireland has the highest rate in the western world of people who suffer with cystic fibrosis and who carry the gene which leads to that condition. Orkambi has transformed lives. There are a number of people who are on a trial of this drug therapy and the Government is carrying out a review of that. The cystic fibrosis website has welcomed the review, which is the second or third so far. Not all of the 500 cystic fibrosis sufferers in Ireland will benefit from the therapy, but it appears that the majority will. Research from the British Management Institute has outlined that every report commissioned by a Government Department over 20 years has ended up agreeing with that Department’s initial viewpoint. It is the case that he who pays the piper calls the tune. We are not, therefore, hopeful about the outcome of the Orkambi review. We realise the drug is expensive. Everybody understands that. However, the transformation in the lives of those who benefit from it is enormous.

  I ask the Leader to find an answer to the question. We have had debates on this in the House. The former Minister for Health, Deputy Leo Varadkar, attended the House to discuss the review. Meanwhile, people are suffering because they are not being given access to Orkambi and it is not made available more widely. I ask the Leader to organise an answer to the question in regard to Orkambi and to indicate when it will be available to those who will benefit from it.

Advertisements

Comments Off on Watch: Ireland has the highest rate in the western world of people who suffer with cystic fibrosis, Orkambi would transform lives

Filed under Active Citizenship

Comments are closed.