At present there are no suitable blood screening tests available, although there are tests under development which are currently being assessed. Advice on the suitability of candidate tests will be given by the UK Blood Service's Prion Assay Working Group and by the Advisory Committee on the Safety of Blood Tissues and Organs. If a suitable test is identified the offer of such a test to individuals will be for agreement between the individual and their clinician.
(2) what communication strategy his Department has undertaken in order to inform patients with bleeding disorders of the risk of infection of vCJD from NHS transfusions; what the cost of that strategy is; and if he will make a statement.
In 2004, haemophiliacs were notified that they were considered as ‘at risk of variant Creutzfeldt-Jakob Disease (vCJD) for public health purposes’. The Health Protection Agency (HPA) wrote to all haemophiliac care centres asking them to notify haemophilia patients and give them the opportunity to discuss the implications.
On the advice of the UK Haemophilia Centre Doctors' Organisation (UKHCDO) and the CJD Incidents Panel, it was agreed that all patients with bleeding disorders who had received plasma product clotting factors between 1980 and 2001 should be managed as ‘at risk' whether or not they were known to have received specific product batches manufactured from donors who subsequently developed clinical vCJD. Haemophilia centre doctors were asked to give patients the choice of finding out whether or not they had been treated with products known to have been manufactured using plasma from donors who developed vCJD. In 2006 when further implicated batches were identified, doctors were asked to notify those patients who had received these batches.
In February 2009, the HPA coordinated a patient notification exercise about a finding at post mortem of abnormal vCJD prion protein detected in the spleen of a patient with haemophilia. The HPA and the UKHCDO wrote to centres asking that a letter be sent to all patients informing them of this finding and emphasising that it did not change the status of patients already informed that they were ‘at risk'. The doctors were asked to give patients the opportunity to discuss the finding if they wished.
The patient notification exercises were supported by a wider communication strategy in which documentation was sent to others, including medical directors of NHS trusts, general practitioners and clinician and patient organisations, including the Haemophilia Society, and information placed on the HPA website.
There are thought to be approximately 4,000 patients who received plasma products between 1980 and 2001, and these patients were contacted by their clinicians. However, the precise numbers of patients contacted in each exercises is not collected centrally.
Expenditure on these notification exercises has not been separately costed.