Doctors treating an 18 year old girl in the north of England with variant Creutzfeldt-Jakob disease (vCJD) were given the go-ahead last week to inject her brain with pentosan polysulphate, an experimental treatment tried earlier this year on a Belfast teenager with the disease.
Dame Elizabeth Butler-Sloss, president of the High Court's family division, who gave the green light last December for 19 year old Jonathan Simms to have the treatment (BMJ 2003;326: 812511437), last week authorised doctors to use it on the girl, named only as M. The judge granted an injunction banning the media from revealing the identity of the girl or the hospital treating her.
In Jonathan Simms' case, experts have noted some improvement in neurological functions. M's deterioration is not so far advanced—she can still walk short distances and enjoys swimming, though she needs help dressing, washing, and eating.
Nikolai Rainov of the Walton Centre for Neurology and Neurosurgery is one of the neurologists reviewing Jonathan Simms' eight months of treatment. He told the BMJ earlier this month: “I believe that instigating treatment at an early stage could achieve significant extension of the life span of these patients” (4 October, p 765).
M's case has come to court because she lacks the capacity to decide for herself whether to have the treatment. The judge said her current understanding was “childlike.”
Dame Elizabeth added: “M is a much loved member of a strong and devoted family. Her parents have thought carefully about the risks. They believe that M would choose to have the treatment if she were able.
“I find that the family's wishes carry considerable weight. Were the treatment not to be approved it would be a great blow to them, which would be contrary to M's interests.”
She said that M had a definite quality of life, which could be compromised or even destroyed if the treatment did not go well. There was a risk of brain haemorrhage, neurological damage, and death.
But Jonathan Simms had shown encouraging signs since treatment, and experts said he would no longer be alive without it.
Dame Elizabeth said M should be given the chance of extending the length of her life or of improving or maintaining its quality.