A CANCER patient who paid thousands of pounds for treatment that NHS Lothian refused to fund is calling for urgent change after discovering another woman who lives 50 miles away is receiving the same drug free of charge.
Lesley Stephen has incurable breast cancer which stopped responding to standard chemotherapy, but NHS Lothian refused to pay for a new medicine that can help keep patients alive.
The mum of four was then forced to use money left to her by her mother – who died of cancer herself just months after Mrs Stephen was diagnosed – to meet the £13,000 cost of the drug, Kadcyla.
But now she has discovered a fellow breast cancer patient in East Renfrewshire has been given Kadcyla on the NHS following an appeal.
Mrs Stephen, 50, from Edinburgh, said: “I am delighted for the other patient, but really annoyed about all these other women in Scotland who do not even know about the drug and who are dying.
“Consultants do not necessarily want to tell patients about Kadcyla because if they cannot prescribe it, it is tantalising – the treatment is out of reach.
“I have met women who have been on it for four years, so when it does work it can be amazing. These women were back at work and raising their families with a good quality of life.”
Patients and charities were left disappointed in 2014 when the committee that decides which new medicines can be routinely prescribed on the NHS rejected Kadcyla.
But patients can still apply to their health board for the drug and have their particular circumstances considered using the Individual Patient Treatment Request (IPTR) system.
Three years ago the Holyrood health committee heard evidence that clinicians have little faith in the system and the Scottish Government announced changes in 2014.
But some feel this has not gone far enough.
Labour’s health spokesperson Anas Sarwar has now written to health minister Shona Robison, calling on the SNP government to investigate the case, and reconsider the current access to rare cancer drugs on the NHS.
Mr Sarwar said: “This case makes a mockery of our health service based on patient need and not the ability to pay.”
Dr David Farquharson, medical director for NHS Lothian, said if Ms Stephen had shown improvement after paying for Kadcyla herself, NHS Lothian would have considered a new IPTR request but “unfortunately, this was not the case”.
A Scottish Government spokeswoman said changes made to the IPTR system had resulted in a ten-fold increase in access to drugs.
She added: “The Scottish Government, like patient groups, would encourage the pharmaceutical company to lower the price they charge for this drug [Kadcyla] so that people across Scotland can have the opportunity to benefit from more treatment options for breast cancer.”