A CONSULTANT haemotologist whose patient was refused potentially life-saving NHS treatment for a rare blood disorder has called on the Scottish Government to end the postcode lottery of health provision.
Dr Henry Hambley, from Inverclyde Royal Hospital, tried in vain on his last day before retirement to get Joyce Juszcak the “miracle drug” eculizumab for the stem-cell disorder paroxysmal nocturnal haemoglobinuria (PNH) on appeal to NHS Greater Glasgow and Clyde.
The treatment is given south of the Border, but has been rejected by the Scottish Medicines Consortium. The NHSGGC refused the treatment a matter of weeks after another patient William Devine died within days of receiving his rejection letter.
Now Dr Hambley, who described the rejection at the end of his distinguished career as a “kick in the teeth”, says he will continue to fight for Mrs Juszcak, a 65-year-old retired barmaid from Gourock. He is making a written appeal to health board chairman Andrew Robertson and chief executive Robert Calderwood in an attempt to secure a change of mind.
Dr Hambley told The Herald: “Greater Glasgow and Clyde are only following the rules. It is Nicola Sturgeon’s and Alex Salmond’s responsibility. They are the people denying her therapy she would get if she was living 95 miles further south.”
The Scottish Medicines Consortium decides which newly licensed drugs represent good value and ruled against eculizumab in November last year, saying it is yet to be convinced of the cost-effectiveness of the £250,000-a-year drug.
Patient groups say Scotland is failing more than 350,000 people who will be affected by a rare disease. They have demanded an advisory group to deal with specialist medication, similar to that in England and Wales, is established in Scotland.
Dr Hambley, who revealed another elderly patient had been refused eculizumab for PNH and died of an unrelated lung cancer, said he wanted the health board to “think outside the box”.
“I feel so angry,” said Dr Hambley, formerly medical director of the Welsh Blood Service and clinical director of the Aberdeen and North East Scotland Blood Transfusion Centre. “This is not something to be considered on the basis of guidelines and hard-and-fast rules. This is a patient. This is a woman who is suffering and whose suffering we can alleviate.
“She is left five days a week struggling to live any kind of normal life and that’s what makes me so angry.
“One of the reasons I came into haemotology was because it meant dealing with patients, that I could do some good. So to be faced with this refusal on your last day, really, to me felt like a kick in the teeth.
“This is just an absolute awful scenario to retire on. At the end of the career you should be able to look back, but this leaves such a dreadful taste, that this woman is being denied treatment.
“There will only be four or five patients in the health board area that would be having the treatment, so you’re talking about a million pounds a year and the health board budget will be many times that.
“If this lady was living in England she would be seen and on assessment they would say she is suitable for the drug and it would happen. It seems to add cruelness to what is already a very cruel situation.”
PNH affects one in a million, causes red blood cells to explode, leaves patients too exhausted for simple tasks and at risk of kidney failure and potentially fatal blood clots. Experts say eculizumab is a potentially life-saving drug obviating the need for regular blood transfusions in two-thirds of patients and virtually abolishing the risk of blood clots, the main killer.
A Scottish Government spokesman said: “Scotland has robust, equitable and transparent arrangements for the introduction of newly licensed and cost-effective medicines to treat all conditions, including rare conditions, through the Scottish Medicines Consortium and NHS Quality Improvement Scotland.
“These bodies operate independently from the Scottish Government and are widely acknowledged to be robust.
“While eculizumab is not currently recommended by the SMC for use within NHS Scotland, NHS boards consider each case according to the specific needs of the patient, and can approve its use on that basis.”
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