Family of vCJD victim claim untried treatment is success

The family of a teenage boy dying from variant Creutzfeldt-Jakob disease who defied medical advice to give him an experimental drug claims that the treatment is beginning to work.

The family of a teenage boy dying from variant Creutzfeldt-Jakob disease who defied medical advice to give him an experimental drug claims that the treatment is beginning to work.

Don Simms, whose son Jonathan was given a year to live, said that since starting the treatment involving injections directly into the brain there were signs that the disease, linked with eating BSE-infected meat, had been brought under control.

"We see that he is more responsive. It is a suggestion that the treatment is working," he says on the BBC 1 programme Real Story, to be broadcast tonight.

In December 2002, the Simms family won a High Court ruling to allow the untried treatment to go ahead, despite warnings of the dangers from specialists. The Committee on Safety of Medicines said there was "no rational basis" for prescribing the drug and the CJD Therapy Advisory Group said there was insufficient data on its effect and safety.

After hearings in London and Belfast, Dame Elizabeth Butler-Sloss decided the risk was acceptable because without treatment Jonathan would die.

Surgeons placed an ommaya reservoir, a plastic dome-like device, under his scalp with a tube leading into the brain. The drug pentosan polysulphate was put in the reservoir and infused slowly. The drug had not been used to treat vCJD before, although it had slowed the disease's progress in animals.

The case set a legal precedent for the use of experimental treatments on people with a terminal illness who are incapable of giving consent, and opened the way for other patients with vCJD to seek the same treatment.