Volume 6: Human Health, 1989-96
7. Human health developments from January 1996 to 20 March 1996
The SEAC meeting of 5 January 1996
5 January update on CJD surveillance

7.76 We now turn to the first of the important meetings of SEAC: that of 5 January 1996. In respect of this and the following meeting of 1 February, we propose to consider the following questions:

1. What was said at the meeting about the CJDSU findings?
2. What was reported about those findings and to whom?
3. Were the reports adequate?
4. What action, if any, was taken as a result of the reports?
5. Was this action adequate?

5 January update on CJD surveillance

7.77 The minutes of the meeting record:

Dr Will reaffirmed that the incidence of CJD in dairy farmers in Europe showed an excess over the incidence for the population as a whole except in the Netherlands. There was no excess if data for all farmers were used.

He confirmed that there is now a CJD suspect in a 52 year old from York who had a history of having been an abattoir worker . . . Dr Will's current view was that the patient was 'no more than a suspect' at this stage . . . The patient worked in a mixed abattoir for 18 months in 1989, largely in lairage, occasionally stunning cows, where he would wash out the stunning pen and would not normally have worn gloves. He occasionally pithed animals but had much less exposure than other abattoir workers and was essentially a stockman . . . ¹

7.78 Professor Smith is recorded as having said that:

with the figures provided by MAFF of 11,500 workers in the red meat slaughterhouse industry, 30 per cent annual turnover, and a potential exposed population of 60,000 over 10 years, one would expect 0.2 cases over a five year period. He felt that it was not possible to come to any conclusions on the basis of this case alone even if CJD was confirmed. Nevertheless, taking into consideration the affected farmers as well, and even though the abattoir worker was in an apparently relatively low risk category, the 'box' of 'at risk' occupations was getting full compared to expectation on pure chance, and could not be dismissed. ²

7.79 The record states that the Chairman agreed but reminded those present that the case was only a suspect at this stage.

7.80 Dr Will then reviewed the age distribution of cases of CJD:

He continued to have no concern about the incidence of disease in those aged over 30 but the number of cases under 30 was worrying. Between 1970 and 1989 there had been no cases under 30 except for those due to growth hormone treatment. Since 1990 there have been four definites and one possible. These comprised the 17 and 19 year olds which were already published, a 29 year old diagnosed on the basis of cerebral biopsy, a 29 year old diagnosed post mortem and a 29 year old who was still alive and classified as no more than 'possible'. There were also a 30 and 38 year old confirmed and a 35 year old suspect, who now looks unlike CJD. In one of the 29 year olds and the 30 year old the pathology is unique with very extensive plaques in both the cerebellum and cerebral cortex and Dr Will considered there is a very high chance that these two are genetic. ³

7.81 Dr Kimberlin asked whether the lack of previous cases had been due to mis-diagnosis. Dr Will replied that he:

. . . thought this unlikely because the disease was unusual in the young . . . Other members were of the view that CJD in patients under 30 would not have been misdiagnosed because of the rarity of symptoms in this age category. When asked if he knew of a second case in an abattoir works as mentioned in the press Dr Will stated that the 30 year old case had visited an abattoir for two days whilst a 38 year old case had worked in a butcher's shop for a year in 1975 and a 29 year old case had a husband who worked in an abattoir . . . Dr Will reminded the committee that if two of the cases in young adults were genetic, then the figures were perhaps not so worrying at this stage, given the fact that there had been two cases in France, although over a 15 year period, and two in Japan and other cases reported in the Netherlands and Australia under 30. ⁴

7.82 The final version of the minutes concluded its section on CJD surveillance, as follows:

Dr Will was not unduly concerned at the overall number of CJD suspect cases that had occurred in the under 30 age bracket, what he did find worrying was that all the cases had occurred over a very short period. Professor Collinge was extremely worried at the occurrence of this number of young cases in such a short period, which could suggest a link to BSE. He requested that a formal statistical analysis be carried out to assess this further. The Committee concluded that the situation demanded the continuation of the intensive monitoring of CJD. ⁵

7.83 In a statement Professor Will told the Inquiry:

The minutes of the meeting are not a complete account of the discussions that took place. I cannot remember the details of what was discussed, but I am confident that there was a more extended discussion than that recorded and that this included some of the caveats to the interpretation of the data . . . ⁶

7.84 The process of drafting these minutes spanned some two months. The draft seems to have been based on a note prepared by Mr Eddy, which he used in preparing a minute to Mr Keith Meldrum (see paragraph 7.90).

7.85 The minuted comment of Professor Collinge was amended at his request. In an earlier draft circulated to Dr Danny Matthews on 22 January 1996, the relevant passage read as follows:

Dr Will was not unduly concerned at the overall number of CJD suspect cases that had occurred in the under 30 age bracket, what he did find worrying was that all the cases had occurred over a very short period. Dr Collinge considered that there was a strong possibility that these cases may be attributable to BSE. The Committee concluded that the CJD situation needed close monitoring. ⁷

7.86 It was only by his fax of 1 March 1996 to Mrs Stephanie Townsend, SEAC Secretariat, MAFF, that Professor Collinge provided the wording which appeared in the final minute. ⁸

7.87 Professor Collinge told us:

. . . I was profoundly concerned by two pieces of information at this meeting. Firstly, by reports that bovine spinal cord was being incompletely removed from some carcasses. Secondly, Dr Will reported that he was now aware of five cases of apparently sporadic CJD in young people. While one, two or possibly three such cases could be argued to be simply a chance phenomenon, five remarkably unusual cases of sporadic CJD over a such short period of time in the United Kingdom seemed most unlikely in my opinion. Although this was not sufficient evidence on its own to conclude a BSE link, and urgent experimental work needed to be performed to examine this possibility, I felt that this was the most likely explanation. I asked that my concerns on both these issues be appropriately minuted. ⁹