Northern Ireland

Cystic fibrosis: NI health department to discuss new drug

Older sister and child in the hospital breathing using an oxygen mask Image copyright Getty/KatarzynaBialasiewicz

The Department of Health in Northern Ireland has said it will look at the implications of the decision to make a life extending drug for cystic fibrosis patients available in England.

NHS England reached a deal with the manufacturers of Orkambi, Vertex Pharmaceuticals, after months of negotiations.

Patients including children should be able to get the drug within 30 days.

The drug improves lung function and can be given to children as young as two.

In September, the Scottish Government reached an agreement with the manufacturers.

In a statement, the Permanent Health Secretary Richard Pengelly said he welcomed the announcement.

He has asked the department and the Health and Social Care Board to "initiate urgent discussions on the implications of this decision for Northern Ireland".

"Commissioning these drugs would, of course, have budgetary implications at a time of serious financial pressures for health and social care," added Mr Pengelly.

"Notwithstanding the challenge that presents, we will endeavour to take this issue forward expeditiously."

The firm wanted to charge £100,000 per patient per year, but a compromise has been reached in a confidential deal.

NHS England said Wales and Northern Ireland have been part of the discussions and it has directed that the pharmaceutical company must make equivalent terms available to both jurisdictions.

Image caption More than 10,000 people in the UK suffer from cystic fibrosis, which causes fatal lung damage

It is estimated about half of the 10,000 patients in the UK will benefit from these drugs.

Cystic fibrosis is a life-shortening genetic condition that causes fatal lung damage.

Only around half of those with the condition live to celebrate their 40th birthday.

NHS England Chief Executive Simon Stevens said the deal was "good for patients and fair to British taxpayers".

Health Secretary Matt Hancock described it as "wonderful news".

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