Hopes raised over CJD treatment

Hopes raised over CJD treatment

August 13, 2001 Press Association by Mark Sage

Families of victims of the human form of mad cow disease have given a cautious welcome to an "encouraging" new treatment that appears to have produced remarkable results.

Rachel Forber, 20, was diagnosed with suspected variant Creutzfeldt-Jakob Disease in June.

As the disease attacked her nervous system she was confined to a wheelchair, could not recognise her parents and was given just a year to live.

But Nobel Prize winner Professor Stanley Prusiner conducted a pioneering drug trial which led to a complete transformation in the health of the former soldier from Newton-le-Willows, Merseyside.

After just 19 days of treatment at the University of California School of Medicine in San Francisco, she was able to walk unaided, talk, use a knife and fork and complete co-ordination tests which were previously impossible.

Miss Forber's mother Jane Taylor said the family decided to go ahead with the treatment as a last resort.

"At the end of the day we had nothing to lose because we were told that Rachel would die and we had everything to gain if this did work.

"What they said was this treatment had only ever been done in test tubes in the laboratory and had never been tried on a human being."

Her brother Jason Taylor added: "It was in tablet form, three times a day with meals and all that she was staying in hospital for was to be monitored."

Ms Taylor said her daughter's walking had not improved - she still needed to be supported - but Mr Taylor added her co-ordination "seemed to be getting better".

"It may have been through practice she was getting better but she seemed to be getting better with her memory as well."

Her mother called for the pioneering treatment to be made available to all sufferers of the disease and for the tests to be more widespread.

"We have to be optimistic but cautiously optimistic because it is going to take time, so what we need are more trials," she said.

The drug trials may bring hope to sufferers and their families - 99 people have died from the disease since 1996 and seven more suspected sufferers are still alive.

British officials have been in contact with Prof Prusiner's team and found the results promising, a Department of Health spokesman said.

"Based on informal discussions between the researchers and the Department of Health, the findings appear to be encouraging.

"On the basis of that, there will be further work done to find out whether the treatments which the studies have been looking at would provide effective treatment for people with vCJD."

But he added: "Until the work is published and we have a chance to look at it properly, we cannot comment properly.

"I think it is a bit early to say it is a miracle cure."

David Body, the solicitor representing vCJD victims and their families, echoed the calls for caution but added: "Anything that is seen to bring an improvement should be welcomed with great enthusiasm.

"It has been ages since there has been any glimmer of hope but there will great caution about being too optimistic."

He added: "If it is proved to be effective it is vital that we have it in this country, and we would be calling on the Government to introduce it - America is a long way to travel for treatment."

However, even if the cure is found to be successful it could be difficult to implement as there is no conclusive test for vCJD on living sufferers - the only test can be done at a post-mortem examination.

The Department of Health spokesman said Government work to develop such a test was continuing as rapidly as possible.

"If you are going to treat someone for a disease you need to be sure that they are suffering from it in the first place," he said.

There would be further delays from clinical trials, licensing and manufacturing, he added.

Prof Prusiner, professor of neurology and biochemistry at the university, won the 1997 Nobel prize for medicine for his work on prions - the infectious agents thought to underlie a number of conditions including Creutzfeldt-Jakob Disease.

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