Docs want to give me life-saving drug .. but they can’t afford it
KELLI’S PLEA AS SHE RACES AGAINST TIME
DOCTORS have told a young cystic fibrosis sufferer they cannot give her a life-saving drug – because it is too expensive.
Consultants say the cost of prescribing Orkambi to Kelli Gallacher would be so high that services would have to be axed to pay for it.
It’s a bitter blow to Kelli, 24, who has been fighting a race against time for access to the drug.
The average lifespan for patients with CF is just 31 but Orkambi can extend that by halting the deterioration in lung capacity that the genetic disease causes.
The Scottish Medicines Consortium have rejected the drug for use in Scotland.
But the Scottish Government said there was still hope for patients as a new system called PACS Tier Two means doctors can apply, on a case by case basis, for access to medicines – including Orkambi – that don’t have SMC approval.
However, in a letter to Kelli, CF consultant Steve Bicknell said: “This system does not come with any clear additional funding. We would be obliged to apply for Orkambi for all eligible patients and the resulting cost would be several times greater than the entire current cost of CF services.”
Bicknell, consultant respiratory physician with NHS Greater Glasgow and Clyde, added: “This could mean substantial cuts in current services would need to be made.”
In June, the Record told how Kelli, of Alexandria, Dunbartonshire, had written to Nicola Sturgeon, begging for access to Orkambi. The First Minister advised her to apply under PACS Tier Two.
Kelli has now written to Health Secretary Jeane Freeman.
She told her: “I have now been informed that my application won’t be put forward as my consultant is unwilling to use this system.
“The CF community in Scotland have been misled over the use of this process. When it was announced, it gave so much hope to those affected. Please allow me and others to live the lives that we deserve.”
Kelli’s MSP Jackie Baillie stated: “The Scottish Government need to find a different route so patients can access these life-saving medicines.”
A Scottish Government spokeswoman said “a number of patients” were receiving Orkambi through PACS Tier Two.
She said: “We encourage clinicians to make use of the system where they consider it clinically appropriate.
“National guidance explicitly states that health boards should not take account of the cost of medicines when considering these applications.”
Please allow me and others to live the lives we deserve KELLI GALLCHER IN PLEA TO HEALTH SECRETARY