A new drug is bringing hope to lung cancer patients in Scotland, but patients in England are unable to get it on the NHS. Health Editor Barry Nelson investigates.

Deanne Jenkyns can hardly believe how much her husband, Jimmy, has improved since going on the revolutionary new cancer drug, Tarceva. Effectively banned across most of England, the drug has been enthusiastically prescribed by cancer specialists in Scotland for more than a year.

Like Jimmy Jenkyns, 55, from South Shields, Scottish patients with advanced non-small cell lung cancer have begun to have a better quality of life.

But the difference between Scotland and England is that on Tyneside, the couple are having to pay around £1,700 a month to get Tarceva privately.

"Before Jimmy went on Tarceva in April he was so ill that it was hard for me just to see him," says Deanne, 40.

"He was having to take a lot of painkillers just to keep going.

"Since he started this drug he is basically back to normal. He has been able to go back to work and we went to Cuba on holiday."

Instead of having to have intravenous chemotherapy, all Jimmy has to do is take a pill every day.

"That is what really annoys us. If this drug is so good for Jimmy, why can't he have it on the NHS and why can't other patients have it as well?" she adds.

She said it was "outrageous" that patients in Scotland could get Tarceva on the NHS but not in England.

Even more significant, a recent hospital scan shows that Jimmy's main tumour has shrunk by nearly a third.

The couple are hoping that this evidence, to be presented to South Tyneside Primary Care Trust by their cancer specialist, will persuade the NHS to fund treatment.

A spokeswoman for the PCT confirmed that they had listened to the couple but were still unable to fund the drug. However, the PCT remained open to new evidence, she added.

Deanne and Jimmy feel so strongly about the restrictions placed on Tarceva that they were among campaigners lobbying the London headquarters of Nice (National Institute for Health and Clinical Excellence) on June 6.

Nice is the independent watchdog set up to vet newly licensed drugs to see if they represent value for money for the NHS.

So far, Nice has decided that the evidence does not justify its adoption by the NHS.

Nice argues that Tarceva is not cost effective enough compared with existing lung cancer therapies.

But this view is strongly opposed by the Roy Castle Lung Cancer Foundation which on June 6 backed an appeal against the Nice guidance by drug maker, Roche.

They were supported by the British Thoracic Society and The Royal College of Physicians.

Roche has appealed on the basis that the evidence submitted "has been assessed neither fairly not appropriately."

The company also described it as "particularly disappointing" that Nice had turned down the drug as it has been accepted as being cost-effective by the Scottish Medicines Consortium as long ago as June 2006.

Since that date, cancer specialists in Scotland have been busily prescribing Tarceva to patients with advanced lung cancer.

Dr Marianne Nicolson, consultant oncologist at Aberdeen Royal Infirmary, said the drug could help patients who have "very few other options for treatment".

She says patients with advanced non-small cell lung cancer needed to spend what she described as "quality time" with their families and Tarceva could help control symptoms and prolong life.

"For patients to know there is a drug out there but they can't get access, it makes them feel they are being penalised again," she adds.

Ironically, the Roy Castle charity's national help line and patient support organisation is based in Glasgow.

Joyce Dunlop, director of patient care for the charity, says callers from south of the border are often desperate.

"We get a lot of calls from people in England. We are also hearing heartbreaking stories of people trying and failing to get Tarceva from their local primary care trust."

"Doctors have been prescribing Tarceva in Scotland for more than a year and the take-up has been good."

Mrs Dunlop says that only "a handful" of patients in England are getting Tarceva on the NHS.

"There are a fair few people who are buying this drug now and some PCTs are using that against them, which I think is outrageous."

Susan Christie, who runs the charity's helpline, says lung cancer patients are "unwell and upset and don't have the energy to pursue this with their PC".

"We know of several patients who were told they only had three months left. A year later, because of the drug, they are still with us."

One of the handful of English lung cancer patients getting Tarceva is Pauline Stokes, 58, from Scunthorpe.

"I have been one of the very fortunate ones. It came as a huge surprise. I count myself very lucky," says Pauline.

A non-smoker, who was working as a holistic health therapist when she was diagnosed with non-small cell lung cancer, Pauline made her application to her local PCT via her consultant, making use of an exceptional circumstances appeals process.

Before she went on Tarceva, she was almost housebound because of excess fluid on her chest which made her breathless.

"Within a few days I could not believe the difference. Friends couldn't understand why I wasn't gasping for breath. It really was so dramatic," she adds.

What she can't understand is why Tarceva is so difficult to get in England.

"They say it is not cost-effective, but it is actually more expensive than some of the other drugs which are available. Some people are able to go back to work and pay tax again," she says.

The grandmother- of-four, who recently celebrated 40 years of marriage to her husband, Raymond, says her heart goes out to people who cannot get funding.

"I am in my fifth month on Tarceva and I don't think I would be here without it."

Meanwhile, Dave Hill, 48, from Darlington, has been forced to launch a fundraising campaign - fronted by his six-year-old daughter, Chantelle - to help pay for his supplies of Tarceva.

Despite his NHS cancer doctor advising him that he should try Tarceva, his local primary care trust is so far not making funds available for this drug.

"If he doesn't get on this drug, there is nothing else they can give him. This is the last option for him," says Dave's wife, Tina.

"We were shocked that we will have to pay for this drug that he needs so much, what is the NHS for, anyway?" she adds.

Tarceva - The Facts

*Tarceva is the brand name for a new drug called erlotinib. It is a new type of targeted anti-cancer drug which disrupts the way that cancer cells grow and divide.

*Tarceva is licensed in the UK for the treatment of non small cell lung cancer where it has spread and after at least one previous chemotherapy regime has failed.

*Tarceva is a pill taken once a day. While it is not seen as a cure, it has been shown to help reduce symptoms such as breathlessness and fatigue in some patients. Patients who do well on the drug may need to take it for as long as two years or more.

*Tarceva has been approved for use in the NHS in Scotland but not in England. It was licensed in the UK in September 2005 and is widely available across Europe and the United States.

*Tarceva costs around £1,700 per month or around £6,800 for the average course of treatment.

*Tarceva patients in France are 15 times more likely to get the drug compared to patients in England. Patients in Germany are ten times more likely to get it.

*Tarceva was largely developed in the United States and cost around £550m.

*Tarceva (according to makers, Roche) increases one-year survival, when compared with best supportive care, by 41 per cent and significantly increases progression-free survival by 39 per cent.

*Tarceva was described as 'not cost-effective' by the National Institute for Health and Clinical Excellence.