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'Dave's legacy has been ignored'

A powerful lung cancer drug, which is widely used across Europe, looks as if it is going to be banned by the NHS. Health Editor Barry Nelson investigates.

TINA Hill was devastated by the death of her husband Dave from lung cancer in February. But she took great solace from the fact that his fight to get access to the new lung cancer drug, Tarceva, helped persuade North-Eastern health authorities to fund the drug for anyone in the region who needed it.

To this day, the North-East remains the biggest cluster of primary care trusts in England to fund the drug on the NHS - but all this could change thanks to yesterday's decision by the drugs watchdog, Nice.

Early last year, Dave Hill, a 46-year-old father of four from Darlington, was told by his Newcastle-based cancer specialist that he would probably benefit from a new drug called Tarceva. The only problem was that the NHS in the North-East, at that stage, would not pay for the drug.

Fully licensed for use in the UK and widely prescribed in Europe and America, it remains largely unavailable to patients in England, although patients in Scotland can get it on the NHS.

Determined to try to prolong his life, Mr Hill enlisted the support of his then six-year-old daughter Chantelle to launch a fundraising campaign.

With Chantelle's face superimposed on a campaign van, above the slogan Help Me To Save My Daddy, Mr Hill managed to raise enough money to be able to start a course of Tarceva at a private hospital.

Costing around £1,630 a month, the average patient will be on the drug for six months, at a cost of £6,700.

By November last year, PCT officials in the region decided there was enough evidence that Tarceva could extend patients' lives and ruled that any consultant wishing to prescribe the drug could do so.

Tragically, Mr Hill lost his battle with lung cancer just six days after learning that his case had helped persuade PCT bosses to fund the drug.

Hundreds of mourners packed the chapel at Darlington Crematorium in February for Mr Hill's funeral to hear the minister say: "Many people across the North-East and Cumbria will live on because of his legacy."

Mrs Hill was so proud of her husband's part in the battle that she has had the words: "Your Legend Will Carry On" engraved on his headstone.

Now the news that Nice looks almost certain to recommend that Tarceva is not cost-effective enough for the NHS, has left her feeling desolate.

"I thought we had won that particular battle. It seems ridiculous when you think the drug can prolong people's lives," said Mrs Hill.

"The inscription is on the stone, I can't have it changed now," she added.

During the campaign, Mrs Hill met and drew inspiration from Jimmy Jenkyns, 55, from South Shields, who has been on Tarceva since April last year.

"I know Tarceva works, you just have to see Jimmy Jenkyns," she said.

Mr Jenkyns, who has campaigned for other patients in England to get access to Tarceva after winning an appeal against his local primary care trust to get funding, is convinced that he would not be alive today without the drug, which has reduced his tumour by a third.

"All I can say is that the drug worked for me. It seems absolutely crazy that we are the only country in Western Europe not to be able to get Tarceva," he said.

Mr Jenkyns questioned whether Nice had factored in the costs of hospital treatment for lung cancer patients who become acutely ill as a result of having intravenous chemotherapy rather than the new drug, which is taken as a daily tablet.

"If people have to go back to chemotherapy, the particular drug you take is so aggressive you can spend time in hospital... which takes up expensive nursing time. With Tarceva all you do is pop a pill," he said.

Drug makers, Roche, who intend to appeal against the Nice final appraisal, spent years and hundreds of millions of pounds developing Tarceva.

Licensed for use in the UK back in September 2005, Tarceva is a new type of biological therapy which uses natural body substances, or drugs made from natural body substances, to treat cancer.

Substances in the human body called growth factors encourage cells to grow by dividing into two new cells. They work by latching on to structures, called receptors, on the surface of the cell. The growth factor and receptor then signal to the inside of the cell, telling it to start to grow.

Tarceva blocks a particular receptor, slowing down or even stopping the growth of cancer cells.

According to Roche, the drug has been shown to reduce the debilitating side-effects of lung cancer and increase the number of patients alive after one year of treatment by 41 per cent, when compared to a placebo, or dummy pill.

In one trial around 15 per cent of patients on Tarceva lived more than two years, which Roche said is an unprecedented result for this kind of illness.

Tarceva was approved by the Scottish Medicines Consortium - the Scottish equivalent of Nice - in June 2006.

Roche calculates that patients are 11 times more likely in France and five more times more likely in Germany to receive Tarceva than in the UK.

Professor Nick Thatcher, head of medical oncology at the famous Christies cancer hospital in Manchester and one of the world's leading lung cancer experts, said lung cancer specialists in the UK were "unanimous" in wanting to be able to prescribe Tarceva.

"What is not understandable is that Nice didn't accept that the toxicity of Tarceva is less than the intravenous drug it replaces, which is so toxic that some patients actually die," said Prof Thatcher.

He also challenged the notion that Tarceva was too expensive.

"It is not outrageously expensive when you think that it keeps patients out of hospital, keeps them at home and reduces the burden on relatives. What is expensive is not giving it to them."

10:38am Friday 25th April 2008

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