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Last Updated: Wednesday, 9 July, 2003, 21:48 GMT 22:48 UK
CJD family criticise disease plan
Jonathan Simms
Jonathan's condition "has stabilised despite doctors' predictions"
The father of a Belfast teenager who is suffering from variant CJD has accused the government of putting money before human life over plans to change regulations aimed at preventing the disease.

Don Simms, whose son Jonathan is receiving revolutionary treatment to prevent the spread of the disease, is calling on people to lobby their MPs to try to stop the changes.

Mr Simms only won the right for his son Jonathan, 18, to receive treatment which has not been tested on humans, after a long court battle.

He is now determined to do all in his power to stop changes to regulations which could mean more people contract the disease.

The Food Safety Agency is to consider calls for a lifting of the ban on cattle over 30 months entering the food chain.

Instead, new BSE testing measures, which it is estimated will save around 300m a year, would be introduced.

There is no monetary value that can be placed on a human life and 2.5 victims of variant CJD is 2.5 too many
Don Simms

Experts say the change would result in a worst case scenario of an extra 2.5 cases of variant CJD over the next 60 years.

But Mr Simms says no family should face what his has faced for the sake of saving money.

"There is no monetary value that can be placed on a human life, one human life, and 2.5 victims of variant CJD is 2.5 too many," he said.

"My son today fights for his life, a boy who never had a day's illness in his life.

"We don't want any family to go through what we have gone through."

A lobby group formed by families of vCJD victims said they deeply regretted that the Foods Standards Agency would be recommending relaxation of the "over 30 month" rule.

Vice chair of the Human BSE Foundation Graham Steel said the number of victims, "albeit slight", would increase in the years to come.

Earlier this year, Jonathan Simms was given repeated infusions of the drug pentosan polysulphate directly into his brain.

Jonathan requires round-the-clock care
Jonathan requires round-the-clock care

While laboratory experiments suggest the drug has the potential to tackle the condition, the drug is controversial because it has only received limited testing in animals.

However, fears remain that the treatment may cause harm.

Jonathan's progress is being monitored using regular scans checking for the presence of bleeding around the injection site.

The teenager's condition has deteriorated in the months that his father has been campaigning for him to have the treatment.

He now requires round-the-clock care and the disease has severely affected his speech and eyesight.

More than 100 people in the UK are known to have died from the variant form of CJD so far, with a handful now living with the illness.

CJD teenager 'stable'
12 May 03  |  Northern Ireland
Teenagers get CJD drug go-ahead
17 Dec 02  |  Health
CJD case: The judgement
17 Dec 02  |  Health
CJD drug: A scientist's view
17 Dec 02  |  Health
Q&A: High Court CJD battle
17 Dec 02  |  Health

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