The Velcade Three
Rare cancers drug survey highlights cruel 'lottery'
Huge variations in NHS provision of life-saving treatments revealed
CANCER patients are being left to die amid a "bizarre and demeaning" postcode lottery over who gets access to drugs for treatment, a survey published today has revealed.
The report has unearthed huge variations throughout England in the provision of drugs to battle rare cancers, with at least one of Yorkshire's health trusts denying more than a third of requests for the life-saving treatments.
The Rarer Cancers Forum has released the shocking statistics, revealing that 100 per cent of applications were rejected in some areas while in others every single request was approved.
The figures were obtained from 62 of England's 152 primary care trusts (PCTs) using the Freedom of Information Act, and campaigners called today for a radical overhaul of the NHS to ensure all patients are receiving the same access to treatment.
The study revealed that the North Yorkshire and York PCT had refused the highest percentage of applications for drug treatment in the region. Out of 147 requests a total of 51, or 35 per cent, were rejected.
However, other PCTs elsewhere in England had a 100 per cent refusal rate – the Nottingham City trust declined all seven requests it received.
A total of 96 per cent of the 25 requests in Mid-Essex were approved, while all three applications in neighbouring South-West Essex were rejected.
Overall, one in four exceptional requests for cancer treatment were denied, the research by the Rarer Cancers Forum found.
The charity's chief executive, Penny Wilson-Webb, said: "The NHS should be available to all who need it. Yet 1,300 cancer patients were denied the treatment that could have made all the difference to them.
"This audit shows that the exceptional cases process is in chaos and patients are suffering."
Ms Wilson-Webb said thousands of cancer patients had been forced to plead for their lives since October 2006, the period covered by the survey.
"There has to be a better way," she added. "We urge the Government to accept our 10-point plan to end this bizarre and demeaning lottery."
PCTs are not forced to fund treatments which have not yet been considered by the National Institute for Health and Clinical Excellence (Nice) or which are not being appraised.
Doctors and patients must appeal for the drugs, saying the need for treatment represents an "exceptional case".
But campaigners say requests are being denied even though the drugs could help prolong the lives of cancer patients.
Cancer patient John McNamara, 47, of Pannal, near Harrogate, was initially denied a vital drug to prolong his life by the North Yorkshire and York PCT.
The father-of-three was refused a course of Velcade, while other patients at the same hospital received the treatment.
After the Yorkshire Post highlighted his plight, the PCT did relent and gave Mr McNamara a course of Velcade, although he lost his battle against a bone marrow cancer, multiple myeloma, in February.
Midwife Jacky Pickles, 46, of Keighley, was diagnosed with multiple myeloma in January 2002, but has since received two successful courses of the drug Velcade.
She said: "Without Velcade I certainly would not be here now.
"Of course, an informed decision needs to be made as to whether a patient should receive a course of a specific drug. But there is so much bureaucracy in the NHS today that people are having to appeal two or three times before they are eventually granted the treatment.
"It is vital that patients are given access to the drugs at the earliest opportunity to have a chance of surviving. Without the bureaucracy there would be more money in the pot to pay for the actual treatment."
According to the research between 30 and 50 per cent of all cancer cases could be classified as "rarer", falling outside the common cancers such as colon, breast, lung and prostate.
A cancer may be classed as "rarer" because it affects an unusual location in the body or because it is of an unusual type, is difficult to diagnose or requires special treatment.
Examples include some neck and head cancers, eye cancers and rare cancers of the endocrine system.
Drug company Roche supplied funding for the research but the charity maintained it had retained editorial control.
Last week Nice rejected four drugs for treating advanced kidney cancer.
A Department of Health spokesman stressed that guidance issued to the NHS at the end of 2006 made it clear that decisions on funding for treatments should be made on evidence for each case – and should not be withheld solely if Nice guidance is unavailable.
The spokesman added: "The guidance also suggests sources of information NHS organisations can consult in the absence of Nice guidance."
Copyright © The Velcade Three, 2010.