13 May 2022: Collinge - C

There is a couple in attendance today whose son sadly died as a result of vCJD infection. Recalling the slow, traumatic, and tortuous nature of the end-of-life conditions caused by this awful illness, it can’t have been easy to sit through the descriptive answers needing to be heard today.

Another even more recent attempt to get the DDA assay funded has again fallen. The view seems to be that since there has not been a new UK case of vCJD for a number of years, it is not a priority. Prof Collinge was able to give a number of reasons why allowing the continuation of the research would be valuable, which go beyond just the issue of blood-borne infection, but these reasonable and important considerations do not seem to be valued by the decision-makers, for some reason.

There are people from the contaminated blood world who have contacted the witness for themselves. This has mostly been for counselling not testing. Importantly, it is still the case that should a diagnostic test be administered, there remain uncertainties over a negative result due to the 30% who don’t have prions in the blood, but they may be hidden in the brain, spine, and elsewhere (hence the need for more research), plus there is still no actual curative treatment to offer.

It will be an early finish today, since all that remains is for questions from core participants, after a short break.

The parents of the vCJD victim are currently speaking with Counsel. Their dignity is commendable.

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