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Monday, 6 January, 2003, 17:44 GMT
Hospital ready for CJD surgery
High Court gave the go-ahead for surgery
A hospital planning to provide pioneering treatment on a Northern Ireland vCJD victim has said it soon expects to go ahead with the procedure.
The UK hospital - which cannot be named for legal reasons - confirmed on Monday that it had the drug required to carry out the operation. However, the family of Jonathan Simms said they understood further discussions had to take place before the surgery could begin. The drug - pentosan polysulphate - had to be obtained in its pure form. Normally it comes with preservatives added.
Jonathan's father Don Simms has been campaigning for the move for the past seven months.
Last month, the High Court in Belfast ruled the teenager - who is dying from the brain disease - could have the pioneering treatment performed on him in the UK. His parents took further legal action to clear the way for the treatment. The previous week, Jonathan's parents won the right to have a drug injected into their son's brain after the High Court in London ruled it was both lawful and in his best interests. The family took further legal action in the High Court in Belfast because the original verdict did not apply in Northern Ireland.
The controversial experimental procedure has not yet been tested on humans, but some scientists are hopeful the treatment could stall the progress of the disease. Jonathan, from Belfast, and a 15-year-old girl in England, who cannot be named for legal reasons, won the right to have the treatment. The case sets a legal precedent that could radically alter the way that unproven treatments are used in people with a terminal illness. Slow decline The previous advice from vCJD experts in the UK was not to use pentosan - but that is now to be reviewed. vCJD is thought to be caused by "rogue" proteins called prions, which corrupt other proteins in the brain and form clumps which slowly kill brain cells. At present there is no available treatment that can reverse or even slow down this decline. Pentosan, it is hoped, may be able to latch onto prions, rendering them less harmful, and perhaps allowing them to be flushed out of brain cells. The drug molecule has to be injected directly into the brain because it is too big to pass from the bloodstream across a protective filter called the "blood brain barrier".
What doctors are unsure about is how much pentosan would have to be given to have an impact on vCJD in the human brain, and how much it is safe to give. Some studies have already suggested that it could have a role in patients who have been "infected" with vCJD prions, but have not yet developed clinical signs of the disease. Statistical experts say that although the number of people who have so far developed vCJD, probably as a result of exposure to BSE infected meat during the 1980s and early 1990s, is currently only in the hundreds, the true numbers likely to go on to develop it are unknown, as it may incubate for decades in the body.
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See also:
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