A BONHILL mum whose daughter has cystic fibrosis has slammed “red tape and excessive costs” for continuing to prevent a lifesaving drug being available on the NHS.


Maggie Gallacher says families with loved ones suffering from the disease are “very, very angry and disappointed” that the drug Orkambi is still unavailable – 1,000 days since it was licensed in the UK.


Maggie’s daughter, Kelli, 24, has cystic fibrosis (CF) and takes daily medication and undergoes physio to manage the debilitating condition.


Maggie said: “Kelli has a positive outlook but fears that without access to Orkambi, her life expectancy will be reduced.”


Now Dumbarton’s MSP Jackie Baillie has used the 1,000-day milestone since the drug being licensed to put renewed pressure on the Scottish Government to make access to Orkambi a reality in Scotland “as soon as possible”. 


Ms Baillie said it was clear the Scottish Government, the Scottish Medicines Consortium (SMC) and the drug’s manufacturer, Vertex, needed to find a solution which would allow Orkambi to be made available on the NHS in Scotland.


The MSP added: “It is unacceptable that cystic fibrosis sufferers in Scotland do not have the same access to life-changing drugs, such as Orkambi, as their peers in countries across Europe.


“I will continue to work with those impacted by cystic fibrosis, and other MSPs, to put pressure on the Scottish Government to make access to Orkambi a reality in Scotland as soon as possible.”

Dumbarton and Vale of Leven Reporter:

MSP Jackie Baillie has called on the Scottish Government to make the drug available 


Maggie told the Reporter that she was delighted with Ms Baillie’s support.

“Families across Scotland with CF sufferers are very, very angry and disappointed that this drug is not being made available through red tape, bureaucracy and pricing,” she said.


“Things seemed to be moving on during April, May and June but we have reached a stalemate.” 


She said that during the 1,000 days, more than 200 people who may have benefited from this life enhancing and potentially life prolonging drug had sadly died from the debilitating, life shortening illness which causes chronic lung infections and progressive lung damage.


Orkambi is a precision medicine that tackles the underlying genetic defects that cause the condition.


The drug has been found to slow decline in lung function by up to 42 per cent – the most common cause of death for people with cystic fibrosis. 
It has also been shown to reduce chest infections requiring hospital treatment by up to 61 per cent.


In 2016 the Scottish Medicines Consortium (SMC) recognised Orkambi as an important treatment, but did not recommend its use on the NHS because of cost, which is reported to be £104,000 per patient per year.


A spokesperson for the Scottish Government said doctors in Scotland are already able to prescribe licensed treatments that are not yet generally available on the NHS, including Orkambi if they consider that the individual patient’s clinical needs will be met.


They added: “We have sought further meetings with Vertex on several occasions to discuss the availability of Orkambi, and we strongly encourage them to submit a fresh application to the SMC as a matter of urgency.


“Decisions made by the Scottish Medicines Consortium (SMC) are independent of ministers and Parliament. However, we have significantly improved access to new medicines in recent years as a result of our investment and reforms.


 “These include the introduction of a new system for doctors, on behalf of individual patients, to access licensed treatments not yet generally available on the NHS in Scotland.


“In this system, the cost of the medicine must not be part of the decision making process.”