18 May 2022: Presentation (CJD Timeline) - B

Also in 2000, several of the key response bodies were set up or beefed up; including the vCJD Incident Panel. A Compensation scheme was set up, alongside the support fund. The Haemophilia Society published specific information on vCJD to its members. In Scotland, Dr Lowe and Prof Keel issued information about a Northern Ireland linked incident. The UK Government announced that it had arranged for the purchase of fresh frozen plasma from the US for use with neonates.

In 2002, the DH bought the biggest plasma collector in the US as security for the nations’ plasma needs.

In 2003, major guidance which included the Framework Document, was finalised and prepared for publication.

In 2004, the decision was made was made to notify bleeding disorder patients of their risk status under the umbrella approach. John Reid announced the second death by vCJD from a blood transmission route.

In 2006, new assessment protocols were put in place for use prior to surgery or endoscopy, called “Annex J”, with the aim of screening out those who might be vCJD infected. The questions included, “Have you ever been told you might have been exposed to vCJD?”

In 2007, the number of cases of transmission by a blood route was up to four. New guidance on follow-up care, support, and monitoring of anyone implicated as having been put at risk of vCJD was published.

In 2008, the PFC in Edinburgh closed.

In 2009, Haemophilia Centres were advised that a person with haemophilia had been diagnosed in post-mortem as having vCJD. There was also new guidance in Scotland for people who had received multiple transfusions. For those considered at higher risk (i.e. having received blood from 80 or more donors), they were to be advised of being at risk and to be supported by Health Protection Scotland and their GP.

In 2011, Prof Collinge’s work on a vCJD screening assay was published.

In 2013, updated guidance was issued about the process of de-notification. Haemophiliacs who received factor products between 1990 and 2001 would remain notified. Those who only received product between 1980 and 1989 were to be re-assessed and if appropriate de-notified.

In 2014, a House of Commons Committee published the report “After the Storm”. It concluded that while new cases of vCJD were rare, studies indicated the possibility that tens of thousands of the UK population might be “silent carriers” of the prions. It noted how the Government had adopted a more optimistic approach due to the low numbers of new cases and used that to justify inaction. This was seen in its lack of enthusiasm to support risk mitigation technologies such as prion filtration and the prototype vCJD blood assay developed by Prof Collinge and his team at the MRC Prion Unit. The Government were accused of ignoring the risks and having a casual attitude. The Committee recommended a major study to carry out a full assessment of the risks the UK blood supply faces or may face, to fill missing knowledge gaps, and to support risk reduction measures.

In 2016, there was the last known case of a death due to vCJD.

And on that very sobering human note, the presentation ended.

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