Case that set alarm ringing for scientists

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The Independent Online
Scientists first began to suspect there was a new strain of Creutzfeldt- Jakob Disease in 1994 when an 18-year-old was diagnosed as having the disease.

The fact that the victim was unusually young attracted the attention of the CJD Surveillance Unit in Edinburgh, which later matched it with a growing number of cases in British teenagers. There had previously been only four cases in the world in people aged under 30.

The first person to contract CJD is still alive. Victoria Rimmer, 18, is on a life-support system in Wrexham Maelor Hospital, north Wales, and first showed signs of the disease in 1993. CJD was diagnosed by brain biopsy after she fell into a coma, in which she remains.

The government's expert advisory panel, the Spongiform Encephalopathy Advisory Committee (SEAC), was strengthened in December by specialists with a wider range of knowledge. The work of the surveillance unit also became increasingly important. But diagnosing CJD is a slow business, requiring a full post-mortem and analysis of brain tissue samples.

But the evidence from the four teenagers who died most recently led Rob Will, the unit's director, to an alarming conclusion - that a new form of CJD had cropped up.

SEAC's chairman, Sir John Pattison, realised that the new scientific evidence from Edinburgh was so serious that it would have to be drawn to the attention of the Government. He convened a meeting of the committee last Saturday to consider the report, and passed on SEAC's conclusions to Sir Kenneth Calman, the Chief Medical Officer, later that weekend. Ministers were given his summary on Monday morning.

By Tuesday Whitehall went into overdrive as SEAC met until nearly midnight to draft their recommendations - resuming to finalise their report yesterday morning, an effort which left them "exhausted". John Major summoned Stephen Dorrell, Secretary of State for Health, and Douglas Hogg, Agriculture Minister, for a meeting at Downing Street - at which it as agreed that a ministerial statement would have to be made.

The SEAC papers were then brought to Mr Hogg and Mr Dorrell, already at Downing Street for a Cabinet meeting on electoral strategy. But ministers discussed CJD for almost an hour and approved Mr Dorrell's request to SEAC to consider at its meeting next weekend what advice to give parents.