Sturgeon urged to end Scotland’s drug lottery

Senior News Reporter

Wednesday 13 July 2011

SCOTTISH patients have demanded Health Secretary Nicola Sturgeon end the "postcode lottery" in drug provision after a second person with a rare blood disorder was refused potentially life-prolonging treatment despite a plea from a top clinician.

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MARTIN WILLIAMS

Retired barmaid Joyce Juszcak, 65, was refused the drug eculizumab for paroxysmal nocturnal haemoglobinuria (PNH) on appeal by an NHS Greater Glasgow and Clyde panel weeks after another patient William Devine died shortly after receiving his rejection letter.

Mrs Juszcak, of Gourock, Inverclyde, who describes herself as a “walking timebomb”, had been recommended for the treatment by haematologist Dr Henry Hambley, from Inverclyde Royal Hospital, who told the panel he was “astonished” by their decision to refuse the drug. Patients want Ms Sturgeon to end to the situation where eculizumab can be prescribed in England, Wales and Northern Ire-land, while it is not recommended for use in Scotland by the Scottish Medicines Consortium (SMC).Mrs Juszcak, who has had six blood transfusions since October, told The Herald: “My life was in their hands but it was all down to money. It means I could take blood clots and die at any minute.”Dr Hambley said: “This again appears to be an extreme example of postcode lottery where patients living in Scotland are disadvantaged. SMC does not have the means of assessing these drugs for orphan indications (rare diseases) whereas the other three countries in the UK have appropriate mechanisms to consider these drugs”The SMC, which analyses which newly licensed drugs represent good value, said yesterday it is still to be convinced by the drug’s manufacturers, Alexion Pharmaceuticals UK, about the cost effectiveness of the £250,000-a-year medication.Latest figures show seven PNH sufferers – in the Lanarkshire, Forth Valley, Ayrshire and Arran and Greater Glasgow and Lothian health board areas – are being treated with the drug.The PNH Alliance pressure group, which has funding from Alexion, has written to Ms Sturgeon to ask her to take action. “It has been difficult to get someone to accept responsibility for this issue but the only person that can make a change, is the minister,” said a spokesman.Alastair Kent, chairman of Rare Disease UK, added: “There is the inequitable situation where a patient in one part of the country is not able to access a treatment which is benefiting patients in other parts.” A spokeswoman for NHS Greater Glasgow and Clyde would not say why Mrs Juszcak was refused the drug, but said “insufficient evidence had been offered” to support the prescription of eculizumab.A Scottish Government spokeswoman said: “Health boards have arrangements in place to provide this drug for individual patients in certain circumstances. This is a clinical decision based on a robust national framework – not a postcode lottery.”

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Sturgeon urged to end Scotland’s drug lottery

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