There'll always be an England, but ...

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  • 05/11/2007
There may very well "always be an England," but there won't always be the drugs you need to survive if you live there. Welcome to the world of heathcare technology assessment aka comparative effectiveness aka evidence-based medicine.

When it comes down to brass tacks, what all these fancy phrases means for patients is "sorry -- no medicines for you." So much for "universal" health care. "Government" health care is more like it.

It's reached such a state in the UK that the following appears in today's edition of The Telegraph:

The drugs the NHS won't give you

Suninitib (Sutent)
For kidney cancer.
Licensed, but the Department of Health has yet to refer it to Nice for a recommendation.

John Quance, 57

The former fireman was told he could not have the drug Sutent because the NHS would not pay for it.

Mr Quance, who has been diagnosed with kidney cancer, cashed in his pension and remortgaged his house to pay for it privately, but fears that he may have to sell his home unless the NHS steps in. Cornwall Primary Care Trust said it was not prepared to pay the £22,000-a-year cost of the drug until it was approved by Nice.

Mr Quance said: "I have worked all my life, I have been in the forces, the prison service and the fire service for 30-odd years and I feel a little bit abandoned.

"The staff and the hospital have been excellent but it is a little disappointing not to get funding when it has been proved [the drug] is working."


Bevacizumab (Avastin)
For bowel cancer.
Licensed for colon cancer in January 2005, but turned down on the grounds of cost-effectiveness in January.

Victoria Otley, 56

Miss Otley was diagnosed with bowel cancer at the end of 2005. She had complained of being in pain but doctors told her that it was nothing to worry about.

By the time her cancer was diagnosed it had spread. She took other drugs and later asked about getting Avastin after her sister read about it on the internet. Yesterday, Miss Otley, a former hairdresser from Dagenham, said: "I asked my consultant but he said it wasn't available on the NHS."

She and her sister paid £15,000 for a course of Avastin and the cancer shrunk, however they cannot afford to pay for any more. "You work all your life and pay your taxes and this is what you get. I think it's disgusting."


Cetuximab (Erbitux)
For bowel cancer.
Licensed in June 2004 and turned down by Nice in January this year.

Ian MacDonald

The former bridge inspector's doctor told him that he would have liked to have prescribed Erbitux, but that he could not because it was not available on the NHS.

Mr Macdonald has tried various drugs and radiotherapy since being diagnosed with bowel cancer in the year 2000.

His wife Catherine, who has given up work to care for him full-time, said yesterday: "My husband has worked all his life in this country and never had a day off sick and yet he is refused a drug that might stabilise or shrink his tumour.

"I can't understand why it is not available here but it is in other countries. It's awful."


Erlotinib (Tarceva)
For non-small cell lung cancer.
Licensed in Sept 2005, approved by the Scottish Medicines Consortium in June last year and rejected by Nice in March on the grounds that it was not clinically or cost effective. Manufacturers Roche are appealing against the decision.

Susan Allen, 43

She was told she had ten months to live after being diagnosed with lung cancer in December 2005.

A non-smoker, whose hobbies include cycling and running, the mother-of-one underwent chemotherapy and radiotherapy and was prescribed Tarceva by her oncologist in October last year. She had to pay for the daily pills herself initially, at a cost of £70 per day, until her local health authority eventually changed its mind.

She said: "Denying the drug is condemning patients to death."


(Bortezomib) Velcade
For bone marrow cancer patients who have had at least one earlier therapy or are unsuitable for a bone marrow transplant.
Nice has agreed to review its rejection of the drug in March. Patients in Scotland, Wales and Northern Ireland have been able to get it since last year.

George King, 57

Mr King, who is terminally ill with bone marrow cancer was forced to consider moving to Scotland to get access to Velcade in an attempt to prolong his life.

Mr King, an electrical engineer from Teesside, said earlier this year: "People with terminal illnesses shouldn't have to fight for treatment. It's so frustrating. This drug is available not only in Europe, but just a few miles north of where I live. I don't have any option but to move away from my family, friends and the people who have helped me through the cancer until now."


Pemetrexed (Alimta)
For mesothelioma, a cancer caused by exposure to asbestos, and small-cell lung cancer.
Patient groups are waiting for the results of an appeal against Nice's rejection of the treatment in February for lung cancer. A decision on funding for mesothelioma is expected in September.

Bernard Hoyland

The retired mechanical fitter spent the last years of his life fighting to make Alimta available for patients in his area.

After he was diagnosed with mesothelioma he was told his primary care trust would not pay for him to receive Alimta because it was too expensive. He launched a legal attempt for compensation against his former employers, began travelling to London every three weeks to receive cancer treatment and joined a campaign to force NHS bosses in Teesside to fund Alimta. Six months after funding was agreed, Nice ruled that it was too costly.

Mr Hoyland, who called the decision "simply unacceptable", died last November.

His son Paul said: "He ended up having to travel to central London after finding he could get the chemotherapy down there. He was a victim of the postcode lottery."

Center for Medicine in the Public Interest is a nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness.

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