NoBlood

Government reviews vCJD alerts for transfusion patients
James Meikle
Thursday August 17, 2006

Guardian

The government revealed yesterday it was reviewing the way it warns people they may be incubating the human form of BSE after transfusion with contaminated blood or being infected by tainted surgical instruments, as a coroner called for an urgent shake-up in the present system.

John Hooper, deputy coroner for Brighton & Hove, made the appeal after the family of a patient who died from the disease complained that the blood authorities had known he was in danger for years before he was told.

Mark Buckland, 32 when he died in May this year, had received blood during the course of an operation in September 1997 from a donor who went on to die from variant CJD in April 2000.

But it was not until January 2004 that Mr Buckland learned by letter of the risk, shortly after the government announced that another person was found after a postmortem examination to have been infected by vCJD from a blood transfusion from another donor years before. Even then, his family alleges, Mark was not made aware by doctors of the true danger he was in despite already being unwell. He thought he was suffering from ME or chronic fatigue syndrome.

Mr Hooper said that even though the disease was not at present curable, "patients should have the opportunity of appropriate assessment, advice and treatment if they wish. Patients and families could then prepare themselves properly."

He added that improvements to the system might also help others if a cure became available.

Mr Hooper supported a suggestion from Stephen Wroe, consultant neurologist at the National Prion Clinic, London, the centre for vCJD diagnosis, that the unit automatically be notified of those at risk or having caught the disease from other people since the monitoring of such a rare neurological condition which has non-specific symptoms in its early stages could not be left to general practitioners or even neurologists who were not experts in vCJD. Dr Wroe told the Guardian: "If Mark had been seen by an expert in prion disease [like vCJD], they may have been able to diagnose it earlier."

The unit should be told at the same time as individuals at risk, GPs and public health officials. The unit specialists could then advise patients both on the risk and the management of the disease.

Dr Wroe said: "There are other cases of people who are now at very serious risk and should be told."

At present 20 people are still alive at least five years after transfusion. Up to 6,000 more, mainly people with haemophilia, who have received plasma products, but also people who might have been infected by surgical instruments, have been notified. Most experts believe they are not at such high risk as those who have received whole blood transfusions.

Guardian Unlimited © Guardian Newspapers Limited 2006

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