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A heroine betrayed: Jane Tomlinson was denied drug that could've extended her life
05 October 2007
The charity fundraiser was angry at suffering from a "postcode lottery" but refused to go public even though she was close to death, said Mike Tomlinson.
The mother of three had raised £1.75million, including "hundreds of thousands" for facilities run by the trust which refused to help her.
She preferred to "die early" rather than use her celebrity to get special treatment, said Mr Tomlinson.
"Jane has been fundamentally let down by an unjust system," he said in an emotional press conference held on his late wife's instructions.
"This is the National Health Service - potential life expectancy should not depend on where the person resides."
Mrs Tomlinson did get the drug lapatinib from another hospital but her condition had seriously deteriorated during the three-month delay.
She died last month of breast cancer, aged 43, but her family believes she could still be alive if it had been given to her promptly.
Her condition had improved dramatically when she started taking lapatinib - only available for patients with advanced breast cancer - with a second drug in April.
For a while, the disease was "under control" but she deteriorated again after 12 weeks of a research trial and died in early September.
Her widower received a personal apology from Dr Phil Ayres, deputy medical director of the Leeds Teaching Hospitals NHS Trust. He admitted more could have been done to find the money.
Mr Tomlinson said his wife was 'very unwell' after her final gruelling charity event in the US last year.
She had chemotherapy in her home city of Leeds but in January her oncologist said she needed lapatinib.
Taken in pill form, it can hold tumours at bay but is not yet licensed by the NHS.
It was available from GlaxoSmithKline as part of the trial. The drug was free but "additional costs" were £6,700 per patient.
The manufacturer also refused to supply Mrs Tomlinson on a "compassionate" individual basis. Eventually the City Hospital in Nottingham agreed to treat her.
"It caused a lot of distress," said Mr Tomlinson.
"The delay seriously affected her health. It is felt by the family this shortened her life."
He said the couple wanted to highlight the problems caused by a postcode lottery for patients.
He urged Gordon Brown - who paid tribute to Mrs Tomlinson when she died - to introduce a "consistent" policy in which all patients suitable for unlicensed trial drugs had access to the same treatment.
Such drugs should be available in an approved trial if licensed by another nation, said Mr Tomlinson.
"Jane wanted the issue to be drawn to the wider attention of the public," he said.
"She was extremely cross there were inconsistencies."
Lapatinib was approved in the US in March. A trial of 324 women given it with the drug Xeloda showed it delayed advanced breast cancer by eight months compared to four months for Xeloda alone.
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