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Seanad
‹ Order of Business

Funding for Orkambi

Summary

Senator Daly calls for a debate and HSE funding for Orkambi, conveying a cystic-fibrosis patient’s plea for access to treatment and a normal life.

To add to Senator Paschal Mooney's comments, the Soviet Union was the first country to recognise the Irish Republic in 1919 and no less a man than Leon Trotsky was its foreign Minister at the time.

I second the amendment regarding the taking of No. 15, the non-Government motion on cystic fibrosis. I will read a note I received from a person who suffers from cystic fibrosis. He writes:

I suffer from cystic fibrosis, a debilitating disease which affects many organs of the body, eventually leading to premature death in many cases. I am 26 years of age with a life expectancy of 41. I spent three months of this year on intravenous antibiotics, a debilitating chest infection and I spent six months in hospital as an inpatient. Just last September, my lung capacity went to its lowest level ever of 23%. My condition will continue to deteriorate and I too, along with many other young Irish people, will have their lives cut short by cystic fibrosis. However, for the first time, there is now hope. A new drug that treats the underlying cause of cystic fibrosis has become available in Europe. Orkambi targets sufferers who have two copies of the cystic fibrosis gene. It has been shown to reduce lung exacerbation by 40% and greatly limits the amount of time that cystic fibrosis sufferers have to spend in hospital. And our hopes were shattered on December 6th by Tony O'Brien of the HSE who said he would not fund Orkambi. It is estimated the treatment will cost €160,000 per patient. This brings the total amount to €92 million. Orkambi will now undergo a rapid review within the national centre for pharmacology and pharmoeconomics. It is most likely that a health technical assessment will then be required to further assess the drug regarding cost-effectiveness and overall benefit to the patient. However, due to the costs, Orkambi will fail the HTA-----

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Paddy Burke An Cathaoirleach Fine Gael

Is the Senator supporting the call for a debate on this issue?

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Yes, I am calling for a debate. The note continues:

The Health Minister, Leo Varadkar, has stated if it gets to the point where this drug gets through the process and gets approved by the NCPE and the National Drug Committee I will go to Government and seek money for it. I hold the opinion that Mr. Varadkar is very much aware that Orkambi will fail the NCPE-----

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Paddy Burke An Cathaoirleach Fine Gael

The Senator may make these points during the debate.

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He continues:

We are tired of putting our lives on hold. I spend three hours per day taking treatment to alleviate the symptoms of cystic fibrosis.

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Paddy Burke An Cathaoirleach Fine Gael

We are not having a debate on the Order of Business.

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The note continues:

This isn't even a guarantee of prolonged good health because my efforts will be in vain. I will still end up battling consistent chest infections, enduring long hospitalisation stays, which will lead to my eventual death sooner rather than later.

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Paddy Burke An Cathaoirleach Fine Gael

The Senator is out of order.

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He continues:

I can't even hold down a job because of regular illness. I simply ask that I and my fellow CF sufferers be given a chance to lead a normal life without constant interruption and fear of the road ahead.

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Paddy Burke An Cathaoirleach Fine Gael

The Senator is way over time.

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The note concludes as follows, "For that to happen, the HSE needs to approve Orkambi."

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