Gran pleads for vital drug

A grandmother suffering from leukaemia has pleaded with health chiefs to pay for a drug she believes will help her live for another 20 years.

A grandmother suffering from leukaemia has pleaded with health chiefs to pay for a drug she believes will help her live for another 20 years.

Glenis Soanes, 63, of Blundeston, near Lowestoft, said she was shocked to be told her primary care trust (PCT) would not pay for the drug Disatinib, which had originally been prescribed by her consultant and costs about £20,000 a year.

Yesterday, a spokesman for the Great Yarmouth and Waveney PCT said the decision had been taken by five clinical specialists because the drug did not fit into its normal treatment programme. He insisted it was not a financial issue.

But retired Mrs Soanes, a parish councillor, who lives in Meadowlands, said she and her husband John were ready to fight to get the PCT to change its mind.

“I'm not going to lie down and die; I'm going to fight this all the way,” said Mrs Soanes, who has a daughter and six-year-old granddaughter.

“They are cutting years off my life, but I don't see how someone sitting round a table can say I shouldn't have the drug. I think the underlying reason is money.

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“If I don't take the drug, my life expectancy is five to 10 years, but if I do get it I could live for more than 20 years. I want to see my granddaughter grow up.”

Mrs Soanes was diagnosed with chronic myeloid leukaemia a year ago. It is the rarest of the four main types of the disease.

She was initially prescribed a drug called Glivec, but suffered an allergic reaction so her consultant, Dr Shalal Sadullah, from the James Paget University Hospital at Gorleston, decided to put her on Disatinib. However, earlier this month, the PCT made the decision not to fund the drug.

Mrs Soanes added: “If my specialist says that this is the right drug for me then I am going to trust his judgement. I was shocked when I heard about the PCT's decision.

“My husband is hopping mad and is going to fight the PCT tooth and nail. My daughter is also shocked and we are all hoping that the PCT will change its mind.”

Dr Alistair Lipp, director of Great Yarmouth and Waveney PCT, said a request for funding Disatinib was considered by two consultant haematologists, two GPs and a public health consultant.

“Based on the information presented to that meeting, members decided that Disatinib, which is not part of the normal care pathway, was not appropriate and recommended an alternative.

“This recommendation has been accepted by Great Yarmouth and Waveney PCT. However, if different information comes to light, it is possible the decision will be reconsidered.”

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