Belfast Telegraph

Life-changing cystic fibrosis drugs available in weeks in Northern Ireland

Local families affected by cystic fibrosis have welcomed the news that revolutionary drugs will be available in the next few weeks after a deal was struck with the manufacturer
Local families affected by cystic fibrosis have welcomed the news that revolutionary drugs will be available in the next few weeks after a deal was struck with the manufacturer
Ralph Hewitt

By Ralph Hewitt

Local families affected by cystic fibrosis have welcomed the news that revolutionary drugs will be available in the next few weeks after a deal was struck with the manufacturer.

Department of Health (DoH) permanent secretary Richard Pengelly said an agreement had been reached with biotech firm Vertex Pharmaceuticals to provide access to Orkambi, Symkevi and Kalydeco.

The drugs will be supplied at price similar to the cost charged to NHS England.

Jen Banks, who has campaigned to have Orkambi made available for her son Lorcan Maguire (2), said the deal was wonderful news.

"They told us it would be released in a couple of weeks and it has actually been a couple of weeks, so I have to say I'm flabbergasted because it's not like things to go so well in Northern Ireland," added the 34-year-old from Downpatrick.

"It's just wonderful and even though the Department of Health and Richard Pengelly put us out of our misery by saying that they were going to do the same as England, I still had the fear a wee bit before things were finalised.

"Arrangements are being put in place to ensure clinicians will be able to begin prescribing the drugs to the first eligible patients within the next few weeks.

"It is estimated that in excess of 270 patients will be eligible for the new drugs under the agreement."

Ludovic Fenaux, the senior vice president of Vertex Pharmaceuticals, thanked the local health authorities for their efforts in reaching the new agreement.

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