Daily Mirror (Northern Ireland)
280 CF SUFFERERS SET TO START LIFE-SAVING DRUG
Maker & health officials strike deal
ALMOST 280 cystic fibrosis sufferers will get the “life-saving” drugs they have long campaigned.
The Department of Health revealed yesterday Us-based Vertex Pharmaceuticals has agreed an offer in line with the prices NHS England agreed for Orkambi, Symkevi and Kalydeco.
Permanent Secretary Richard Pengelly said: “A formal agreement will be finalised and signed in the very near future.
“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.”
Vertex International spokesman
Ludovic Fenaux said the deal also includes any “future indications” of the three drugs, which treat certain mutations of the genetic condition.
He added: “We are pleased eligible cystic fibrosis patients in Northern Ireland will soon have access to CFTR modulators to treat the underlying cause of their disease and we thank the authorities in Northern Ireland for their collaboration and commitment in this agreement.
“We will support the arrangements being put in place to ensure clinicians will be able to prescribe to eligible patients within the next few weeks.
Jen Banks, from
Co
TWO aircraft hangars used to build Stirling bombers during World War II are to be given protected status.
The local council was notified about plans to list the historic Maze hangars last month.
And despite planners’ advice to hold off a decision until future plans to develop the Maze site are secured, Lisburn and Castlereagh councillors voted to endorse the proposal.
The decision will go before the full council later this month.
The hangars sit on the site of the former
Maze Prison in an area previously earmarked for a peace and reconciliation centre.
Ray Burrows, chairman of the Ulster
Aviation Society, said listing the huge hangars would preserve their history and help with fundraising.
The society currently houses 30 aircraft in the two buildings and has a six-month rolling lease with the council. He said: “My own hopes are that it would lead to surety of
Down, said the news has been one of the best moments of her life.
She has been campaigning for Orkambi since the birth of her son Lorcan Maguire who was diagnosed with cystic fibrosis at just a few days old. She said: “Deep gratitude to Richard Pengelly, the Department of Health and Vertex Pharmaceuticals from the cystic fibrosis community. “If all further talks on future live saving drugs for CF happen as expeditiously as the action initiated and almost completed within the last two weeks many lives will be saved.” tenure, a long term lease, which would help us go for heritage money – and that in turn would help us [make] big improvements to what we have.”
The society has been unable to host open days since 2013 because of a deadlock at Stormont over use of the site – a stalemate they claim has cost them tens of thousands of pounds a year.
A report by the Historic Buildings Council said surviving WWII hangars were a rare find in Northern Ireland. It added it was important to protect the former RAF and army base.
Listing the hangars would require any proposed changes to the buildings or the land around them, to be considered by the council against HBC’S policy for buildings of special historic interest. The hangars and airfield were built shortly after the outbreak of World War II. The Royal Family, General Eisenhower and Field Marshal Montgomery visited the site in 1945.