Belfast Telegraph

Cystic fibrosis drug boost

Sufferers in Northern Ireland to benefit from revolutionary treatment

By David Young

Health chiefs are set to make a potentially revolutionary cystic fibrosis (CF) treatment accessible to patients in Northern Ireland.

Kalydeco has been hailed for targeting the underlying cause of the inherited disease for those with a specific genetic make-up.

Earlier this month health commissioners in England became the first in the UK to fund the drug, which is also called Ivacaftor, on the NHS.

One of the experts who has been involved in assessing the effectiveness of the treatment is Professor Stuart Elborn from Queen's University in Belfast.

The drug benefits patients who have inherited a specific defective gene (G551D), representing around 6% of people with cystic fibrosis in Northern Ireland.

It targets the malfunctioning protein that causes the disease's debilitating build-up of fluid in the lungs.

A spokesman for the Health and Social Care Board said: “On December 19 the Specialised Commissioning Groups (SCGs) in England confirmed that the drug Ivacaftor would be funded by the NHS in England for all patients aged six years and over with cystic fibrosis and the G551D gene mutation.

“Commissioners in Northern Ireland will be taking account of the decision in England and expect to be in a position early in 2013 to confirm the arrangements by which people with cystic fibrosis in Northern Ireland will be able to access this new treatment.”

Campaigners with the Cystic Fibrosis Trust have called for prompt action in Northern Ireland.

Ed Owen, chief executive of the trust, said: “Our position for all patients with cystic fibrosis in the UK who would benefit from Kalydeco is that they should receive this medicine as soon as possible.

“The positive decision in England means that people in Northern Ireland will now be looking for a swift answer from the Northern Ireland Assembly.

“Over 6% of people with CF in Northern Ireland carry the G551D mutation and we urge the NHS in Northern Ireland to follow England's lead and get this medicine to those who would benefit as quickly as possible.”

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