Cystic fibrosis

MSP’s plea to make fibrosis wonder drug available through local GPs

Patients in Dumbarton and the Vale would benefit from new, life saving drug.

Wednesday marked 1,000 days since the cystic fibrosis medicine Orkambi was licensed in the UK – but it is still unavailable here on the NHS.

During that time, more than 200 people who may have benefited from this life enhancing and potentially life prolonging drug have sadly died.

Cystic fibrosis is a terrible and debilitating life-shortening illness that leads to a severely reduced quality of life.

It causes a build-up of thick, sticky mucus, chronic lung infections and progressive lung damage.

Daily life itself can be a struggle and people with the condition face a huge burden of daily treatments.

Orkambi is a precision medicine that nearly half of the more than 10,000 people in the UK with cystic fibrosis, including children aged six or over, could benefit from.

While conventional cystic fibrosis treatments target the symptoms, precision medicines such as Orkambi tackle the underlying genetic defects that cause the condition.

Orkambi 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.

Orkambi received its European license on 20 November 2015 and in May the following year the Scottish Medicines Consortium (SMC) recognised Orkambi as an important treatment, but did not recommend its use on the NHS because of cost.

The drug is unavailable to most people with cystic fibrosis across Scotland. And  August 15 marked 1,000 days since it was licensed for use in Europe, including the UK.

In June, MSPs debated making Orkambi available and called on the Scottish Government to act to ensure that Cystic Fibrosis patients in Scotland can access these drugs as soon as possible.

MSP Jackie Baillie said: “I have been working with families from Dumbarton and the Vale of Leven who are affected by Cystic Fibrosis and organised a cross party meeting of MSPs to discuss access to Orkambi.

“I am clear that the to Scottish Government, Scottish Medicines Consortium and Vertex need to find a solution which would allow Orkambi to be made available on the NHS in Scotland.

“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”

Meanwhile, the MSP has asked the Government to address staff shortages in radiology across NHS Scotland.

A Parliamentary Question revealed that health boards, including NHS Greater Glasgow and Clyde, are using private companies to process imaging test results.

Jackie Baillie has been contacted by a number of constituents due to the length of time that they are having to wait to the receive results of x-rays, some of whom were being asked to wait in excess of six weeks.

A question at Holyrood revealed that 11 of the 15 health boards across Scotland are outsourcing diagnostic imaging reporting to private companies in a bid to meet demand.

The MSP said: “Just this week it was revealed that NHS Boards across Scotland are facing a severe shortage of radiologists and the Royal College of Radiologists in Scotland has warned that they are on red alert.

“It is clear that more training places are desperately needed to ensure that radiology services can be guaranteed in the future. Dr Grant Baxter, chair of the Royal College of Radiologists in Scotland has called on the Scottish Government to be bolder, increase the number of trainees and put in IT systems.”

This is just the latest in a long line of revelations which show the scale of the problems faced by health boards.

It was recently revealed that locum doctors are charging in excess of £100 per hour to fill gaps in staffing and now private companies are being used to supplement NHS processing of imaging tests.

Jackie Baillie added: “The NHS in Scotland is under immense pressure, with staff being overworked and underpaid and patients now being asked to wait longer and longer for results before they can even be considered for treatment.

“I have had several enquiries from constituents who have experienced huge waits for the results of their x-rays, some of whom even waiting up to six weeks in excruciating pain. Delays to their treatment because of a lack of diagnosis can worsen their condition, and in some cases, be life threatening.

“So, whilst these interim measures may be necessary, these locum doctors and private companies are draining health board resources, all in a bid to meet demand because of staff shortages.

“The SNP Government have been warned about these shortages time and time again but have been slow to act. Instead we have this sticking plaster approach to our NHS. It’s about time the SNP supported our hardworking NHS staff and patients with the resources needed to do the job.”

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