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Bristol grandmother is refused cancer drug

Saturday, April 25, 2009, 07:00

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Grandmother Beryl Jarvis, who is battling cancer for the fourth time, has been refused a drug that could save her life – because the NHS says it has already spent enough money on her treatment.

Mrs Jarvis has been told a drug cleared for use last November could help reduce a tumour in her lungs.

But the NHS says it is not cost-effective to prescribe the drug.

Mrs Jarvis, 66, said: "They are saying that for the sake of £10,000 a year my life is not worth saving. How could they put that price on my life?"

Her daughter has described the decision as handing her mother a "death sentence".

Mrs Jarvis first contracted ovarian cancer in the early 1980s.

She overcame the disease after she underwent a course of chemotherapy. But in January 2004 she was diagnosed with lung cancer.

The former cleaner had a round of chemotherapy, followed by radiotherapy, and was free of the cancer for three years.

Early in 2007 the disease returned and Mrs Jarvis, of Home Close, Southmead, was given another round of chemotherapy.

Last spring, her tumour grew again and she underwent more chemotherapy.

In November the cancer increased in size and her consultant at Bristol Oncology Centre recommended a drug called Tarceva. He believed it could help reduce the size of the tumour.

He applied to NHS Bristol – which is in charge of health spending in the city – to see if they would treat her as an exceptional funding case, but was turned down.

Mrs Jarvis said: "When I heard that Tarceva had been approved I thought I might be entitled to it."

But she was turned down because the National Institute of Health and Clinical Excellence (NICE) had not approved it for cases like hers.

Other treatments were tried by Mrs Jarvis but she suffered side-effects.

She said: "I did not know then that if you had already had two chemotherapy treatments you could not have it.

"It seems as though if you have had cancer for so long they don't want to pay money."

Despite this, Mrs Jarvis is determined to continue battling the disease. She desperately wants to attend the wedding of her grandson Lee Brewer in July.

It was this determination to see him grow up and get married which got her through her first battle with cancer in the 1980s.

Her husband, Nigel, 59, said: "Beryl has been fighting for five and a half years now because she won't give up. The fight is there, why should she be denied this?"

Mrs Jarvis' daughter, Nikki Brewer, said: "When they sent the letter saying they would not pay for the treatment it was a death sentence. They call it exceptional funding, but we are also facing exceptional circumstances."

The drug hit the headlines last year with the case of Carol Rummels, from Stoke Lodge, who was eventually given Tarceva just before the change of guidelines.

Mrs Jarvis, and her husband have been in contact with Mrs Rummels and have also written to their MP, Doug Naysmith. He has passed their concerns on to Bristol South MP Dawn Primarolo in her capacity as a health minister.

A spokesman for NICE said: "The guidance does not recommend erlotinib (Tarceva) for the second-line treatment of locally advanced or metastatic non-small-cell lung cancer in patients who are intolerant of docetaxel, or for third-line treatment after docetaxel therapy because it is not a cost-effective use of NHS resources when used in this way."

NHS Bristol spokeswoman, Julie Hendry, said: "While NHS Bristol has sympathy for Mrs Jarvis, NICE guidelines state that Erlotinib (Tarceva) therapy is not recommended for patients undergoing third- line treatment after docetaxel therapy and our local network of experts have endorsed this guidance. "Every application NHS Bristol receives for this treatment is considered using this guidance in order to ensure fair and equitable treatment for all patients."

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Comments (8)

A short while ago, in the recession as the country borrows money ,the Blessed Gordon gave £100 million pounds to assist farming in Africa. Most altruistic,however if that cash goes through the usual channels it will be creamed off by corrupt leaders.Meanwhile this poor lady is condemned to death by NICE (what an awful acronym) for £10,000.

wellaar, Devon

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commented on 26-Apr-2009 12:50

This is yet another ludicrous decision made by NICE, an unelected New Labour Quango, and Sally I agree with you, the money has stop somewhere, well how about stop paying the Chief Executive of NICE Andrew Dillon over £15,500 a MONTH of tax payers money. The methodology used by NICE to assess cost effectiveness is both discriminatory and inhumane, Quality adjusted Life Year (QALY) the standard adopted by NICE insists those in our society who are older and suffering from very poor health have to prove a quality of life similar to that of a younger and fitter person to reach an ICER (Incremental Cost Effectiveness Ratio), when all you have is a drug that offers you hope you should be allowed to have that drug. Bearing in mind QALY is £30,000 per year and has been since the inception of NICE in 1999, had this figure risen in line with inflation and the absurd immigration fiasco that has put extreme financial pressure on the NHS then money or the justification by NICE for not allowing funding would fly out the window. Just to prove to readers how ineffective financially NICE are, in December '07 they refused funding for Velcade (Bortezomib) for multiple myeloma sufferers, on appeal they overturned this decision and allowed it at first relapse only which effectively condemned to death 75% of the myeloma community, the reason why this was such a stupid decision is because there are other cheaper drugs on the NHS that should be tried first, Velcade being the last resort. I had followed the drug through the appraisal schedule and down loaded, from the NICE website documentation, when the appeal decision was made NICE removed this documentation from their website as many of us knew they had altered the wording from "after first relapse" to "at first relapse", one word condemned hundreds. This week the myeloma community were relieved to hear Revlimid (Lenalidomide) has been approved by NICE, this drug could prolong life for between 18-24 months. In January of this year NICE were told to make other considerations when appraising end of life medicines, there was a whole load of things the patient had to do meet this new criteria, one of them was "have no more than 24 months of life expectancy" what have NICE done to save the taxpayer money and to justify the exhorbitant amount of money they spend? They've agreed to NHS funding of this drug for 24 months, after that the drug company will fund it! I just can't get my breath. So I think it's about time the public started policing NICE, I certainly have, I have a personal interest though my husband is a myeloma sufferer and I will fight tooth and nail to keep him alive, as far as I'm aware the death penalty was removed from the statute books in the late '60s yet this government has reinstated it in the guise of NICE, if you are a convicted criminal you have more human rights than an older member of our society who happens to be ill. 12 years ago you were past you sell-by date around 80 years of age, within 2 years of this government that had been reduced to 70 years of age, we have now reached 55 years of age, thank God for the elections next year.

Ruddie, Doncaster

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commented on 25-Apr-2009 20:56

Funny how the Gov't can find Billions of pounds for illegal wars and bank bailouts but they can't find the money to invest in the NHS budget so that these issues never have cause to arise. And strange how the Pharmaceutical companies are allowed to charge such outrageous prices for their drugs (yes I KNOW they have to research them etc but even so...)

Shelly, Bristol

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commented on 25-Apr-2009 14:40

What really gets me is the fact that I have paid contributions to the 'system' for over 40years (taxes and contributions) and hardly ever used it, but think about this if I should be unfortunate to have an accident and needed to attend the BRI I would have to take my place in the queue with all these NON contributors,,,,,,,,makes me mad.

michael, Bemmy

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commented on 25-Apr-2009 10:44

Lets not forget those "low lives" on our own shores that swindle the system with no intention of ever working. The NHS is in a state because government spending on it has doubled but the money has not filtered to services, instead staff see pay rises as services drop but hey we can't upset them can we !

Spend the money ON the nhs and it might be able to cope. Either that or sterilse immigrants and a adopt a one baby rule on true Brits, would that make you happier ? (please note the sarcasm there, not my opinion)

Monica, Westbury

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commented on 25-Apr-2009 10:37

And we need to put aside money for all those people who have never contributed to the system, that is why our NHS is in a state.

Look at all the low life in France try to get to the soft UK, ( the land of plenty for spongers)and the ones who get here will get free treatment.

Michael, Bemmy

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commented on 25-Apr-2009 09:58

Very true sally.

Blueblood, Bristol

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commented on 25-Apr-2009 08:20

A horrible situation to be in but if you read the story it is not a purely funding issue. This lady has had reactions to drugs that make Tarceva unsuitable for her to use in this case. The disease has metastasised to other areas, she has had 3 rounds of treatment yet it still moves and comes back. There is a limited pot of money to fund "exceptional cases" and Mrs Jarvis has had a good chance and prolonged time so far. This pot would also fund a 10yr child needing Tarceva, they may well respond to it better but by forcing the issue Mrs Jarvis would get it, the child would not have the chance to reach the 66yrs that Mrs Jarvis has had.

A cruel and brutal position but the flow of money has to stop somewhere.

Sally, Whitchurch

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commented on 25-Apr-2009 08:15

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Randy I come from Bristol and my sister still lives there.

She has told many stories like this including her friend being refused a new chemo for brain cancer because she lived on the WRONG SIDE OF THE STREET.....had she lived across the road it would apparently have been available to her (a different branch of the NHS that could afford to pay for it)!

Her friend died a few months later because her husband couldn't afford to pay for the drug himself.

Go figure,


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