BBC (KC) 10-Sep-08
From Kidney Cancer Resource
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Cancer drug system 'scandalous'
The daughter of a man with kidney cancer has used an open letter to Welsh Assembly Government Health Minister Edwina Hart to help get drug treatment.
The cancer has spread to the lungs and brain of John Jones, 61, of Gwynedd.
Anne Wolfenden called the system cruel and scandalous, with patients who buy the drugs themselves then refused other NHS treatment for the illness.
A spokesman said the minister was looking at issues surrounding the availability of drugs on the NHS.
In her letter, Ms Wolfenden told the health minister that her father, from Bangor, seemed to be responding well to treatment for tumours in his brain.
Every time we turn a corner to help my father we are faced with obstacles Anna Wolfenden, daughter of John Jones
Scans also show that the kidney and lung tumours have not grown.
The letter added that the process of applying for the kidney cancer drug Sunitinib was due to start in the next two weeks.
The drug is currently being reviewed by the National Institute for Health and Clinical Excellence (Nice), which oversees which drugs can be prescribed on the NHS, based on their effectiveness and cost.
Ms Wolfenden said the family appreciated "complicated medical calculations" had to be carried before deciding to recommend it for patient use.
But she added: "The drug should be given freely to my father and other cancer sufferers throughout Wales."
Ms Wolfenden said she thought denying patients drugs "is cruel in itself", but there was also a further obstacle.
Episode of care
The family had been told, she said, that sufferers who opt to top up their care with private drugs are not able to receive NHS treatment for the same "episode of care".
"What exactly does that mean?," she said.
The current system is "scandalous, and a cause for shame in a civilised society", she added.
Mr Jones's wife Mair told BBC Radio Wales that her husband and other cancer patients were suffering an "injustice", and the "grey area" surrounding patients paying for their own drugs was also unfair.
"We could struggle to pay for the drug, but not the NHS treatment as a whole," she said.
A Welsh Assembly Government spokesperson said that they could not comment on individual cases, and until NICE published its final guidance, the decision was taken locally.
The spokesman added that the health minister was considering the "broader issues" surrounding the availability of drugs on the NHS.
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