Tamar Bailey, a 26-year-old whose case was highlighted by this paper, died of bowel cancer in her sleep on Tuesday. The advertising art director from Wimbledon, south-west London, had to raise thousands of pounds to buy the tumour-shrinking drug Avastin after her health trust declared her case to be not "exceptional".
Ms Bailey diedhours before the announcement that Herceptin, a drug similar to Avastin, had been cleared for NHS use on breast cancer patients.
Despite the jubilation over Herceptin, cancer charities say that many more people like Ms Bailey may die because of bureaucracy. Delays of up to three years are condemning thousands of patients a year to unnecessary suffering and premature death.
Ms Bailey's mother, Sona, told The Independent on Sunday that Tamar had been "desperate" to live, even if only for a little longer. "We are still in shock but feel very angry," she said. "I blame the system and the individuals in it for the death of my daughter. Our daughter was so desperate for a few more months."
Ms Bailey began suffering painful symptoms towards the end of last year, but it took doctors six months to discover the life-threatening tumour on her bowel. A specialist recommended that she try Avastin, but her local primary care trust, Sutton and Merton, turned her down. Avastin is one of a backlog of at least 20 other cancer drugs awaiting the verdict of the National Institute for Health and Clinical Excellence (Nice), the NHS appraising body.
Mrs Bailey says that her daughter never gave up hope and fought the disease to the end. Despairing of getting Avastin on the NHS, Tamar had raised £70,000 from friends and family for a private prescription of the drug that can shrink tumours by up to 40 per cent.
"We never said it would cure her, but at least she would have been given a chance, if only to give her more time," said Mrs Bailey.
Cancer charities are now pressing for interim funding for medicines that are awaiting official approval. Joanne Rule, chief executive of Cancerbackup, said: "The Department of Health should help primary care trusts by announcing an innovations fund to assist local areas absorb the cost of new treatments."
Cancer charities point out that primary care trusts (PCTs) can wait a further four months before they are legally obliged to fund even Herceptin, and still may appeal against the Nice ruling, leading to further delay.
Patricia Hewitt, the Secretary of State for Health, will tomorrow say health chiefs cannot plead poverty over the breast cancer drug: "It's been crystal clear for a long time which way the Herceptin decision was going to go. Sensible PCTs will have put money aside for this some time ago."
Whatever happens, it makes little difference to Tamar Bailey's family. Her mother is left to reflect on a life whose last days were spent fighting bureaucracy. "The bottom line is money," she said. "But politicians should not put a price on life, especially on one so young. She was just starting life and only wanted a chance to live."
STILL WAITING FOR APPROVAL
Cost: £20K pa.
What is it? Monoclonal antibody for use against colon cancers.
What it does: Shrinks a tumour by up to 40 per cent.
How to get it: In Scotland now. England, Wales waiting.
Cost: £7,000 for 12 doses.
What is it? Monoclonal antibody used on cancers of head, neck, lung and colon.
What it does: Stops cancer cells dividing and growing.
How to get it: On NHS in 'exceptional' cases only.
Cost: £1,300 per year.
What is it? Cancer drug.
What it does: Delivers chemotherapy orally.
How to get it: Available privately, rarely on the NHS. Nice guidance next month.
Cost: £15,000 over 15 years. What is it? Monoclonal antibody.
What it does: Attacks non-Hodgkin's lymphoma.
How to get it: In Scotland now; England,Wales, 2007.
Cost: £ 1,084 per year
What is it? Hormonal therapy for breast cancer.
What it does: Reduces oestrogen cancer feeds on.
How to get it: May be prescribed at local discretion. Decision by Nice awaited.