1 April 2022: Perry - C
Back to the car crash. The option of cryo as a short-term alternative to known to be infectious factor was mooted by the likes of Prof Jones, at least for children. But this option was hampered by the extent to which production processes had shifted to factor manufacturing. I guess it was just too much hassle. Our critical health needs were an inconvenience. Add to that the various vested interests in promoting factor concentrates, then cryo reversion was increasingly doomed. Cryo was not alone in that sorry prospect; or rather than doomed, were we simply damned? They could make some cryo in "an emergency" since "it can be produced in a relatively quick process". Think about what you are saying, Dr Perry. Yesterday you were picking up the baton to stick exclusively with factor production.
As if the stripes to Dr Perry's back were not already hurting enough, the evidence turned to the "Edinburgh Cohort". The reaction was shocking (but somehow not a shock in terms of "how could this have happened" - what?). Dr Foster's assertion that it was "only a matter of time" was not exclusively his. This outcome was expected by the PFC collectively, so the news from Edinburgh about the first HTLV.III positive patients was maybe just shocking for the moment in time of actuality (like waiting for the scary bit in a horror film, you still jump out your skin when it happens, even though the music tells you it coming). Dr Perry was in Groningen when the news broke internally. He heard a week after Prof Ludlum made that fateful night-time call to Dr McClelland. For the first time the activity of tracing back on the implicated batches that were used, and the donations/donors from which it was derived, kicked in. The fact that at least one patient's batch was not identified was never resolved, so what happened to their systems? Four batches were infected, while at least one more went undiscovered. Also, at least one batch had already been used up.
Then there was a question about the formal "recall", or not formal recall. It was actually described as a "product exchange". This sounds like further denial of the full facts to patients. If this had been a foodstuff in shops, they don't wait until all the evidence is in. We'd sue them if they did.
The news of the AIDS infections certainly focused minds towards hastening the production and use of heat-treated product. In the meantime, it was seen as an ethical dilemma whether to tell patients. Say what?!? Eventually there had to be the public meeting in Edinburgh in December of the same year. Dr Perry was not there. He did not see it as PFC's responsibility to be involved in telling patients what was happening about AIDS virus in new haemophilia treatments.
The consideration of Edinburgh as a hotspot for higher-risk donors was a real thing at the time. It feels like they were clutching at straws, and mirroring the feeding frenzy of highlighting the propensity of "alternative lifestyles" in San Francisco and New York. So as experts they were not immune to prejudice as an easy way out. After all, the explanation for our HCV was that we were just a bunch of alcoholics.
Then it was the turn of Glasgow to come under the spotlight; the world of Forbes and Madhok (the latter being someone we are still treated by). The first item of note is the reference to those who had turned out to be positive to HTLV.III, calling them "seroconverters", not just "patients" or "people". At least thosexpoor folks were not reduced to being "just a number", yet.
The issues keep coming thick and fast; next was batch dedication. From 1985, patients were put in "lanes" (of a motorway?) based on geography. Each lane would be allocated only certain batches. This was seen as a way of minimising the exposure of patients to even larger numbers of donors (potential infectors). By then, heat treatment was in place, so it might be a case of "too little, too late". While batch dedication could have been introduced earlier, it would not have stopped the Edinburgh infections, says Dr Perry. Of course the question that is hanging in the air is, why go down this route when the horse had bolted? Was there another reason for batch dedication? You bet.
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