Belfast Telegraph

Home News UK

CJD treatment for patient given go-ahead by judge for first time

Mr Justice Cohen on Monday ruled that doctors could administer the therapy to a human for the first time.

Signage for The Court of Protection and Central Family Court (Nick Ansell/PA)
Signage for The Court of Protection and Central Family Court (Nick Ansell/PA)

A judge in a specialist court has given medical experts the go-ahead to try a pioneering treatment on a man suffering from Creutzfeldt-Jakob disease (CJD).

Specialists say the “novel therapy” has been developed over many years.

They say it has not undergone clinical trials but tests have been conducted on animals.

Mr Justice Cohen on Monday ruled that doctors could administer the therapy to a human for the first time.

The judge had analysed evidence at a hearing in the Court of Protection, where issues relating to people who lack the mental capacity to make decisions are considered, in London.

He said approving the treatment was plainly in the man’s best interests.

Bosses at University College London Hospitals NHS Foundation Trust had asked for permission to treat the man.

The man had wanted the treatment and his wife had wanted him to have the treatment.

Doctors want to try a new treatment (Peter Byrne/PA)

Staff at the office of the Official Solicitor, who help people lacking the mental capacity to make decisions and had represented the man during litigation, were also in favour.

Mr Justice Cohen said the man, who is married and comes from eastern England, could not be identified in media reports.

Lawyers representing the trust had told how the man had recently been diagnosed with the sporadic form of CJD.

They said sporadic CJD was a form of “prion disease” and said there was, at present, no treatment.

The judge was told how a rogue version of a naturally-occurring protein built up in the brain, causing loss of cognitive function and death within a relatively short time.

He heard that the therapy had been developed at a specialist unit at University College, London.

A trust spokesman said, after the hearing, that the therapy, an antibody called PRN100, was “pioneering” and a “world-first”.

Every day he spends with his family is special to him Mr Justice Cohen

Barrister Victoria Butler-Cole, who led the trust’s legal team, had told the judge that evidence from animal testing gave “reasonable cause for hope”.

She said animal tests indicated that the therapy would do “what it is supposed to do” – although she warned that there could be side-effects.

“Every day he spends with his family is special to him,” said Mr Justice Cohen.

“He wants that to continue as long as possible.”

The judge added: “It seems to me it is plainly in his best interests that he should have treatment and that I should approve it.”

Trust chief executive Professor Marcel Levi said after the hearing: “CJD is a rare and cruel disease which rapidly destroys the brain, affecting memory, thinking, speech, balance, movement and behaviour.

“There is currently no cure or treatment for CJD.

“At present, caring for patients with CJD involves trying to use medicines to alleviate symptoms only.”

He added: “The court’s confirmation today is an important step forward in tackling this devastating illness.”

Lawyers said the man was not suffering from variant CJD (vCJD), which has been linked to eating meat from cows which had spongiform encephalopathy (BSE) – a condition known as “mad cow disease”.

Symptoms of CJD include loss of intellect and memory, changes in personality, loss of balance and co-ordination, slurred speech, vision problems and blindness, abnormal jerking movements and progressive loss of brain function and mobility, according to information on an NHS website.

“Most people with CJD will die within a year of the symptoms starting, usually from infection,” says the website.

“This is because the immobility caused by CJD can make people with the condition vulnerable to infection.

“CJD appears to be caused by an abnormal infectious protein called a prion.”

The website says sporadic CJD is the most common type of the disease.

Mr Justice Cohen heard that the Cure CJD Campaign had raised significant amounts of money to fund the therapy research.

A spokeswoman for the charity told him her husband had died aged 56. She said the campaign wanted specialists to try the therapy on the man.



From Belfast Telegraph