Cancer patient takes fight to PM (From The Northern Echo)

John Pagella takes fight to PM

8:06am Monday 13th September 2010 in End NHS Injustice Exclusive By Barry Nelson, Health Editor

PLEA TO NO. 10: John and Kathy Pagella

A CANCER sufferer who was told he was an ideal patient for a new drug wants to meet Prime Minister David Cameron after the NHS turned down a funding application from one of the top specialists in Europe.

John Pagella, 76, suffers from a rare form of bone marrow cancer, known as myelodysplastic syndroms (MDS), for which there is no cure.

The retired businessman knows that without new drug azacitidine, which has been shown to extend life by nine months – his health will deteriorate.

While azacitidine is widely available in Europe and the US, so far, the drug-vetting agency Nice (National Institute for Health and Clinical Excellence) has provisionally ruled that the drug – which costs more than £45,000 a year per patient – is not cost effective.

“My consultant wants to nip this in the bud before I go downhill and my need for blood transfusions increases,” said Mr Pagella, who lives in Bolam, near Darlington.

Despite an application for funding by Professor Ghulan Mufti, one of the most eminent MDS experts in Europe, County Durham Primary Care Trust’s Exceptional Circumstances Committee has turned down the request.

Mr Pagella, who was diagnosed with MDS in 2003, plans to write to the PM requesting a meeting to discuss his case.

He said: “He (Prof Mufti) told me it is ideal for me, yet a committee of a GP, a public health doctor and a few NHS administrators has rejected his recommendation.

“It makes a mockery of what the professor is trying to do, which is to extend the lives of his patients.”

His wife, Kathy, said: “When you consider we have both worked all of our lives and paid into the NHS, what is the NHS for, where is it when you need it?”

The couple are now hoping that they could be some of the first to benefit from the Government’s plan to make it easier to get access to cancer drug funding, which is due to start next month.

The Government is planning to make an interim sum of £50m available across England to meet the demand from patients.

However, it is not clear whether new committees to assess claims will have the ability to overrule Nice recommendations.

There is also a glimmer of hope that Nice could change its decision.

Recently, MDS specialists from 32 hospitals across Europe wrote to the National Cancer Director to support better patient access to azacitidine in England.

And earlier this summer, the MDS UK Patient Support Group was one of eight organisations to present a 655 signature petition to 10 Downing Street urging the Prime Minister to persuade Nice to change its mind about azacitidine.

Yesterday, a spokeswoman for Nice said they were due to re-appraise azacitidine at a meeting on November 4 and a decision would be announced within four to six weeks.

A spokeswoman for NHS County Durham and Darlington said last night it was unable to comment on individual cases, but added: “At this time, the North of England Cancer Drugs Approvals Group, the Scottish Medicines Consortium and Nice have not approved Vidaza (azacitidine) for use in the North- East, NHS Scotland or in England.

“However, in making decisions about funding treatments, we also ensure the treatment options made available to patients are directly related to their individual clinical condition or expected clinical benefits.

“Should a decision be made not to fund, all patients have the right of appeal to an independent appeals panel.”