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Cystic Fibrosis campaigner receives best possible gift

A CASTLEDERG man who has campaigned for years to have life-changing Cystic Fibrosis drugs made available in the North has said he has received the “best Christmas present ever”.

Liam McHugh was speaking outside Stormont on Tuesday after the Department of Health confirmed its intention to make CF drugs, Orkambi, Symkevi and Kalydeco, available to eligible patients in Northern Ireland.

Mr McHugh is well aware of the benefits these drugs can bring to a person living with Cystic Fibrosis.
He said his daughter Rachel’s life had been transformed after she was initially given Orkambi as part of a clinical trial in 2013.

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She remains on the drug to this day.

Before the trial began, the Castlederg man said it had been “panic stations” every time his daughter caught a cold. He claimed that, more often than not, the cold would develop into a chest infection and led to frequent hospital stays.

But he revealed that, in the intervening years, her lung functions had improved, she had gained weight and now suffered from less chest infections.

For the last four years, Mr McHugh has helped to spearhead the campaign to make Orkambi available in the North.

On Tuesday, he was invited to attend a briefing at Stormont with the Permanent Secretary of the Department of Health, Richard Pengelly, along with fellow campaigner Jen Banks.

Mr Pengelly’s confirmation that the drugs would be made available locally came a week after a pricing agreement was reached between NHS England and Vertex Pharmaceuticals, manufacturer of the drugs.

The Permanent Secretary said, “This has been a very difficult and sensitive process. For patients with Cystic Fibrosis and their families, it has been a long and frustrating road.

“Discussions are being commenced with Vertex Pharmaceuticals and, subject to that localised agreement being formally signed off, we will be able to start commissioning the drugs as a matter of urgency.”

Speaking after the briefing, Mr McHugh said that the announcement had been the “best Christmas present ever” and represented the culmination of an “unreal journey” for the campaigners.

In a personal message to the Castlederg man this week, the Permanent Secretary said he had been “absolutely delighted and humbled” to have been able to help in any way.

Mr Pengelly added, “You simply can’t put a value on the well-being of your loved ones. Take care, and I sincerely hope Rachel continues to flourish.”

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