Belfast teenager with CJD to be allowed pioneering surgery in Northern Ireland

 

A Belfast teenager suffering from variant CJD, the human form of BSE, is to be allowed pioneering surgery in Northern Ireland, the Belfast High Court ruled yesterday.

Mr Jonathan Simms (18) won the right last week to have a drug injected into his brain after the High Court in London ruled it was both lawful and in his best interests. The original ruling did not apply in Northern Ireland, but the Lord Chief Justice, Sir Robert Carswell, sitting in the High Court in Belfast, found that it should apply in this jurisdiction.

The drug, Pentosan Polysulphate (PPS), is injected directly into the brain as it is not suitable for intravenous treatment. It is an experimental procedure which has not been tested on humans, but Jonathan's parents are keen for it to be tested on their son. They hope it will delay the onset of the disease further and buy time while other forms of treatment are tested.

His father, Mr Don Simms, has been campaigning for the move for the past seven months. "The animal studies carried out with this particular compound have given those animals up to 40 per cent extension of life and who knows, with medical science as rapid as it is, what may be around the corner.

"If it were the case Jonathan died out of this, his death will not have been in vain," he told the BBC yesterday.

He added: "We are relieved and we hope that treatment can be carried out as rapidly as possible in order to get the maximum benefit of PPS. It's now up to the trust involved how quickly this can be done."

Jonathan's case may open the door for other unproven forms of treatment to be performed on human patients should they give their consent.

One healthcare trust refused to sanction the treatment even though the teenager's parents were campaigning for it and doctors at the hospital under its control were willing to perform it.

Doctors do not yet know how much PPS should be injected into the human brain to achieve results, nor do they fully understand what the safe limits may be. The procedure is expected to be carried out within weeks.