Funding for cystic fibrosis drug Orkambi

Sir, – In "The drug that gave me back my life" (December 21st), Orla Tinsley provides a descriptive account of living with cystic fibrosis and how the drug Orkambi has improved her quality of life considerably. This indeed is heartening news.

In the course of her article, she referenced a recent Sunday newspaper article that carried some comments made by the director general of the HSE, Tony O'Brien, concerning the future funding of Orkambi in Ireland. Unfortunately, not all of Mr O'Brien's comments were included in The Irish Times article.

For the avoidance of doubt, what Mr O’Brien has said in a number of recent interviews on this matter is that while Orkambi has yet to undergo a full assessment by the National Centre for Pharmacoeconomics (NCPE), the current indicative cost of the drug would exceed the capacity of the HSE to pay for it. The HSE would therefore be obliged to request additional funding from Government in order to seek to make the drug available to those patients who would benefit from it.

Should the drug receive a positive recommendation from the NCPE, following full assessment, the HSE would, in accordance with usual practice, seek to negotiate an acceptable price with the manufacturer, Vertex Pharmaceuticals. – Yours, etc,

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PAUL CONNORS,

National Director

for Communications,

Health Services Executive,

Dr Steevens’s Hospital,

Dublin 8.