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. Last Updated: 07/27/2016

Fatal Brain Disease Spurs Suit

LONDON -- Every time Paul Andrews forgets something, he wonders whether his brain is slowly turning into a sponge.


It is a real fear. Andrews believes he is at risk of developing the brain-rotting Creutzfeldt-Jakob Disease after treatment to help him reach a normal height as a teenager.


"You have the fear every day," said Andrews, a 30-year-old student teacher. "The initial symptoms that you get are exactly like everybody gets when they are tired -- you get dizzy, you forget things. I'm always forgetting things, all the bloody time."


He is one of 1,900 Britons given Human Growth Hormone to boost their stunted height as children. The hormone was taken from the pituitary glands of corpses.


Sixteen British children given the treatment between 1958 and 1985 have died of CJD and one is suffering from it.


A lawsuit that opened in London's High Court last week alleges they contracted CJD as a result of the treatment.


Eight families are suing the Health Department and the government-funded Medical Research Council in a case sure to attract attention in the midst of a scare over mad cow disease.


CJD was an extremely rare and obscure disease and probably still would be -- it affects one in a million people -- if it hadn't been for mad cow disease.


Bovine Spongiform Encephalopathy is the version of CJD seen in cattle. Just as in humans, they lose coordination and start to behave oddly before dying. Autopsies show their brains have literally turned spongelike, riddled with holes.


Research indicates both are caused by a mutation of a brain protein known as a prion. The latest findings indicate prions are vital to the health of brain cells, which die when the prions change.


BSE reached epidemic proportions in British herds in the 1980s and is still a major problem. Officials believe the cows got BSE from being fed the ground-up remains of sheep, which commonly get scrapie, a related disease.


Doctors said last month there was a chance people could get CJD from eating infected beef -- launching a worldwide scare and ban on British beef.


Andrews says the scare, while not related to the lawsuit, has given it more prominence.


"Nobody knew what CJD was when we started campaigning. And it's such a horrible death. You've just got to say Creutzfeldt-Jakob Disease and people are pricking their ears up." From the ages of 11 to 17, Andrews was given three hormone injections a week. For him it did work -- he grew a third of a meter to 165 centimeters.


But in 1985 two people in the United States and one in Britain died of CJD. All three were on HGH regimes.


It is accepted that the hormone injections caused the CJD. Children are now given a synthetic form.


"It isn't disputed that the disease arose in any other fashion," said lawyer David Body of Irwin Mitchell, a Sheffield firm that is representing the eight lead plaintiffs in the case.


"This is a grim business. I don't think anyone can think of a worse way to die than CJD."


The lawsuit, which will be binding for the 17 families whose children got CJD, seeks to discover what the government and the MRC knew and when -- and whether anything could have been done to protect the children. If Body's group wins, the others, including Andrews, may also have cause to sue.


"The case rests upon whether the processing of the product was appropriate and whether it took into account the dangerous transmission of a slow virus or prion diseases," said Body.


The Health Department has said it will fight the case, but a spokeswoman declined to go into details.


"We are neither claiming responsibility or denying it," said an MRC spokesman. "The whole thing is a sorry affair and we have the greatest sympathy for the families. But ... it's for the courts to decide."


Parents of the dead children say they were never told the HGH was being taken from corpses. They say more precautions should have been taken over a transplant of human material.


"The risk involved was pointed out to the Medical Research Council by agricultural scientists who had an interest in scrapie and who told them there was a risk," Body said.


Although the parents are seeking compensation, Body, a specialist in medical claims, says they really just want to know what happened and why.


"There's an anger to it. There's considerable anger that no form of inquiry was forthcoming," he said.


"In Australia, the reaction of the government, faced with similar problems, was to set up an inquiry, which reported within 11 months. ... We have asked for an inquiry but none has been forthcoming."