Drugs decision joy for leukaemia woman

A grandmother yesterday spoke of her joy after winning a battle with health chiefs to fund a drug that could help her live for another 20 years.

A grandmother yesterday spoke of her joy after winning a battle with health chiefs to fund a drug that could help her live for another 20 years.

Leukaemia patient Glenis Soanes, 63, said she was now looking forward to watching her granddaughter grow up after the U-turn from bosses at her local primary care trust (PCT).

Last month Mrs Soanes, of Blundeston, near Lowestoft, told of her devastation after officials from the Yarmouth and Waveney PCT refused to pay for her to take Disatinib, which had been prescribed as an alternative to a drug she was allergic to.

Consultant Dr Shalal Sadullah, who is based at Gorleston's James Paget University Hospital, learned of the change of heart after writing to the PCT explaining the importance of Disatinib to Mrs Soanes' battle against chronic myeloid leukaemia.

Mrs Soanes said: "It is wonderful and I was gobsmacked when I heard. Dr Sadullah has been so positive. He said we might have a fight on our hands, but that we would win.

"I've just seen my daughter get married and, hopefully, I'll live to see my granddaughter, who is six, get married as well. We are now going to be doing an awful lot of celebrating."

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Retired Mrs Soanes, who lives in Meadowlands with her husband, John, was diagnosed with chronic myeloid leukaemia a year ago. She was initially prescribed a drug called Glivec, but suffered an allergic reaction and received Disatinib, which costs at least £20,000 a year. She was told the drug could help her live for another 20 years, but withdrawal of treatment would slash her life expectancy to five to 10 years.

The PCT insisted the initial refusal to pay for Disatinib was not based on money, but because it did not fit into its normal treatment programme.

Mrs Soanes, a parish councillor, added: "The people at the PCT are only doing their jobs and I don't feel bitter. I don't think they got the full story, but my specialist sent a letter explaining it in detail and that's what possibly changed their minds.

"I'm sorry that I had to go through it. I shouldn't have to fight for something that I should get by rights. My message to other people is to keep fighting and not to give up."

Dr Alistair Lipp, director of public health at the Great Yarmouth and Waveney PCT, said: "Leading on from our initial decision, we sought and received further information about the patient's previous care and have now updated our decision."

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