Drug treatment of CJD victim cleared by court

Alan Erwin
Tuesday 24 December 2002 01:00 GMT

A teenager dying from the human form of BSE is to be allowed to have radical surgery in Northern Ireland after a ruling yesterday by the High Court in Belfast. Jonathan Simms, 18, from Belfast, will have the treatment in a final attempt to slow damage caused by variant CJD.

His parents won the right to have the blood-thinning compound pentosan polysulphate (PPS), which has never been tried on humans, injected into his brain after the High Court in London ruled it was lawful and in his best interests.

A Northern Ireland hospital had agreed to perform the operation but the family was forced into a legal re-run because the original verdict did not cover the province.

Sir Robert Carswell, Lord Chief Justice of Northern Ireland, backed the original ruling and surgery is expected within weeks.Sir Robert ordered that neither the hospital where the CJD victim will be treated nor the surgeon performing the operation should be identified.

The decision was a victory for the parents of Jonathan, once aNorthern Ireland schoolboy football international, who was diagnosed with v-CJD a year ago and is now gravely ill.

The court was told the treatment was unlikely to make him any better but could stabilise his condition. The neurosurgeon who has agreed to perform the operation told the court that Jonathan had been given "exemplary" care at home. He estimated the risks associated with the treatment were very low.

Don Simms, Jonathan's father, said after yesterday's hearing: "We are relieved and we hope treatment can be carried out as rapidly as possible to get the maximum benefit of PPS. It's now up to the trust involved how quickly this can be done."

Dame Elizabeth Butler-Sloss, head of the Family Division at the High Court in London, had ruled that Jonathan and an unidentified teenage girl should be given PPS. She said that the patients' lives were worth preserving and even though the chance of improvement was slight, medical experts had found it was not impossible.

The Simms family had conducted a worldwide internet hunt for experts and found a neurosurgeon who agreed to perform the operation, but the UK trust he works for decided not to allow it. Intensive studies on mice and dogs infected with scrapie had led the family to believe PPS could help their son.

After Dame Elizabeth's ruling, the ethics committee of a Northern Ireland trust met and gave initial consent for Jonathan's treatment.

Unless serious complications arise, doctors believe the teenager could be back home in his family's care within two weeks of the operation taking place. All surgical equipment used during the procedure will be destroyed to ensure no risk of infection spreading.

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