We know many of our members have been told that they are at risk for public health purposes (the at risk group) in relation to vCJD. It is important to remember that there have been no cases of anyone contracting vCJD from a blood product. However, the prion associated to the condition can be transmitted by blood and implicated prions have been discovered at post-mortem in a man with Haemophilia who died of other causes. With that in mind it is important that the community stays vigilant.
Today’s report from the House of Commons Science and Technology Committee is called After the storm? UK blood safety and the risk of variant Creutzfeldt-Jakob Disease and it makes some important recommendations.
The committee says that they “cannot be confident that prions are not present in the blood supply” and therefore “consider it imperative that a precautionary approach to this risk be maintained until further evidence becomes available.”
They also recognise that “Pathogens are constantly emerging and evolving; novel pathogens will therefore always pose a threat to the blood supply. In the past, it has often taken multiple cases of transfusion-transmitted infection before these threats have been recognised and mitigated. This will remain the case as long as risk mitigation measures remain pathogen-specific.” They go on to “urge the Government to take steps to support the development of broader spectrum technologies with the potential to mitigate the risk of both known and unknown pathogens.”
To always assume that there might be a new and undiscovered threat to blood safety and to act accordingly is an important lesson from the contaminated blood disaster and it is very welcome to see an influential committee adopt this position.
The report is critical of the amount of support the Westminster Government has given to the testing and adoption of the DuPont’s prion inactivation product in relation to the decontamination of surgical instruments. The committee also stresses the need for better access to the rare vCJD samples to promote the development of a vCJD blood test. They also recommend that “the Government ensures that a large-scale vCJD blood prevalence study be initiated in the UK within the next 12 months.”
However, the recommendations which will probably be of most interested to people with bleeding disorders are recommendations 16 to 19 which deal specifically with people who are in the at risk group. These recommendations call for people in the at risk group to have developments explained to them in person; for the prototype vCJD blood test to be offered to people in the at risk group; for improved monitoring of the at risk group; and for Government to be more involved in decisions about who is in the at risk group. These recommendations are reproduced below for your ease of reference.
People who are notified that they may have been exposed to CJD will inevitably be alarmed by this information and will likely have questions that cannot be answered in the leaflets currently provided by Public Health England. We consider it totally inappropriate for this news to be communicated solely in writing. We recommend that the Government put robust measures in place to ensure that all individuals assigned this designation receive the news verbally, either from a healthcare provider or from a CJD specialist with experience in patient communication.
It is clear that the prototype vCJD blood test developed by the MRC Prion Unit cannot yet be relied upon for universal screening purposes. However, it could be of significant value to those people who have been notified that they are at increased risk of carrying the disease. Until the implications of a negative test result can be more firmly established, current precautions must remain in place for those considered to be ‘at risk’ of vCJD. However, the results of an imperfect test may provide comfort to some. We therefore recommend that ‘at risk’ individuals be given the opportunity to participate in the blood prevalence study recommended in paragraph 66.
The Government claims to be undertaking close surveillance of those it considers to be ‘at risk’ of CJD. Yet it cannot provide reliable data either on the total number of people designated ‘at risk’ or the number who have been notified of this fact. This is unacceptable. We recommend that the Government conduct an immediate audit of the entire ‘at risk’ cohort to establish whether any notifications remain outstanding and to ensure that appropriate support and follow-up is in place for all those affected. We also propose that the Government commission an independent review of the transfusion data pathway to ensure that, in the event of any future blood contamination incident, it can promptly trace, notify and provide support to affected recipients.
We were disappointed by the evident lack of support provided to those designated ‘at risk’ of CJD. We consider it inappropriate for the Government to have effectively delegated responsibility for the care and surveillance of a large proportion of these individuals to external bodies such as the UK Haemophilia Centre Doctors’ Organisation—a charitable organisation with no formal relationship with the Executive. We recommend that the Government, through its public health agencies, assume direct responsibility for the surveillance and support of all those considered to be at ‘risk’ of CJD, with input from other specialist organisations as required.