Cancer patient’s anger as drug denied

A TERMINALLY ill cancer patient has been denied a drug which could prolong his life and allow him more time with his young children.

Frank Searle, 57, has had no treatment for a month, after the drug he was taking stopped working. His request for the drug, Afinitor – on compassionate grounds so he could spend extra months with his three-year-old son Sean and daughter Evé, eight – has been rejected by NHS Lothian.

In a case that highlights differences in the way some cancer sufferers are treated north and south of the Border, Searle, from Edinburgh, said the treatment was available to patients in England thanks to a government-backed fund.

The Rarer Cancers Foundation has now called on the Scottish Government to bring Scotland into line with England to allow families like the Searles to have more time together. Chief executive Andrew Wilson said: “People like Frank should not be subjected to the exceptional cases lottery.

“His case is a very personal example of the devastating divide which has now opened up between England and Scotland. It is unacceptable that patients in Scotland are three times less likely to get access to drugs than their counterparts in England. The Scottish Government needs to recognise this inequality and urgently develop a policy to tackle it before more Scots miss out.”

Searle first developed kidney cancer seven years ago but was treated and remained free of the disease for five years.

But the cancer returned six months after he had a stroke that left him with speech and mobility problems.

“I was diagnosed in September 2009 with terminal cancer,” he said. “It was all down to the kidney, but it had spread into my blood and bone.”

He was given the cancer drug Sutent, which blocks the biological process that causes tumours to grow and spread. Searle had 16 cycles of treatment before the drug ceased to be effective.

His doctor then suggested they apply for him to be given Afinitor – which inhibits the spread of cancer cells – to help extend his life, believing he would respond well to the treatment.

But the request was rejected by NHS Lothian on 20 September, leaving him without treatment for the last month.

Speaking from his Morningside home, Searle said: “There is this treatment, but they are not offering me anything. Essentially they are washing their hands of the matter. They are putting you out to die.”

Searle, who met his partner, Keng, 12 years ago in Thailand, said the health board argued that good palliative care could offer a better quality of life than more drug treatment.

“I totally disagree with that. My application was on compassionate grounds. It probably wouldn’t cure that much, but when you see that walking through the door towards you,” he gestures to his young son running into the room, “I rest my case.”

Searle said one patient he was aware of had been paying for Afinitor himself for the last nine months at a cost of £99 per daily tablet. But he said his family could not afford to pay this extra cost themselves.

“I think it is grossly unfair that I have worked all my life and I’m denied this treatment which is available in parts of England,” he said. “What are they wanting? Cancer refugees going to live in England?”

He added that he had considered moving to Berwick, south of the Border, to be able to access the treatment, but had decided he did not want to uproot his children from their home and school.

Afinitor is not recommended for use in the NHS in Scotland by the Scottish Medicines Consortium (SMC). While watchdogs in England have also rejected blanket use of the treatment on the NHS, patients have been able to access it through the Cancer Drugs Fund which has been set up to extend access to expensive treatments. No such fund exists in Scotland.

Research shows that Afinitor can increase survival in kidney cancer patients by three months on average. Asked what his prognosis would be without treatment, Searle said: “They [doctors] won’t tell you that, but I have noticed a deterioration in my condition already. I have had pain, weakness in my body, in my legs and generally feeling run down. ”

Searle’s MSP, the SNP’s Jim Eadie, has asked NHS Lothian to grant access to the drug. He said: “I can fully understand why Mr Searle feels he has been let down by the NHS. When a doctor recommends access to a medicine it is fair and reasonable to expect the NHS to respond favourably and flexibly to that request.”

But Dr David Farquharson, medical director at NHS Lothian, said: “Requests for treatments which do not have SMC approval are considered on a case by case basis, and will only be approved where there is a clear clinical benefit for the patient,” he said. “I would be happy to meet with Mr Searle to discuss this directly with him.”

A Scottish Government spokesman said: “Where the SMC does not recommend a medicine for routine use, NHS boards are not expected to make it routinely available.”

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