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Last Updated: Monday, 17 November, 2003, 13:45 GMT
Plans to treat human form of BSE
Jonathan Simms started the treatment last year
The Department of Health has drawn up plans to allow more people with vCJD to receive an experimental treatment which may help to slow the disease.

Officials want "a small number" of NHS hospitals to start offering the drug pentosan to people with the disease.

The unlicensed drug was first given to a Belfast teenager last year. Experts say it may have improved his condition.

However, the treatment only started after a lengthy court battle, something ministers want to avoid in future.

Hopes raised

Jonathan Simms had been given only months to live before the experimental drug pentosan polysulphate (PPS) was injected into his brain last year.

In September, experts attending a meeting to review the initial results of his case, said the drug appears to be safe and may have improved his condition.

This is something that can be tried
Francis Hall,
Human BSE Foundation
Their comments raised hopes that even if the treatment does not cure the disease it could delay the deterioration of patients, significantly extending their lives.

According to doctors, vCJD is invariably fatal in both young and old and usually takes hold rapidly. There is no cure or treatment to slow the disease.

Jonathan Simms had already suffered extensive brain damage by the time he was finally allowed to have the drug.

His father Donald Simms said he was continuing to make progress.

"He has lived far longer, 27 months now approximately. The average is 14 months.

"The longest surviving person of CJD has been 39 months.

"I am of the opinion that it is only whenever Jonathan is lucky enough to reach 40 months that a lot of the sceptics will sit up and say 'Wow, what is happening here?'"

Jonathan only received treatment after a High Court ruling.

At the time, High Court judge Dame Elizabeth Butler Sloss asked the Department of Health to consider drawing up plans to help other families in similar conditions.

The Department of Health said its plan to select a small number of NHS trusts to offer the treatment should cut delays.

"Following a request to the Department of Health from the High Court in December 2002 to consider how to best help the families involved in that case, we are now seeking to identify a small number of specialist centres in NHS hospitals that might be willing to offer pentosan treatment," said a spokesman.

"This should enable families, their clinicians and their healthcare commissioners to quickly obtain information about the treatment, and significantly reduce the difficulties and delays currently being experienced by patients and their families in obtaining treatment decisions."

The department said the move would also allow doctors to gather more information on the treatment.

"There is insufficient information to provide a rational basis for prescribing pentosan as a treatment for CJD.

Clinical trials

"There is a need to collect safety and efficacy data on the use of pentosan polysulphate as a treatment for clinical disease and this can best be collected as part of a clinical trial," the spokesman said.

"The pentosan treatments currently taking place are not part of an established clinical trial. They are being carried out under the personal responsibility of individual clinicians.

"The Department of Health would like to maximise the information that can be gained from these treatments, and is seeking expert advice on a common set of clinical parameters that trusts could be asked to use to monitor these patients."

Francis Hall, secretary of the Human BSE Foundation, welcomed the move.

"The first person to use this treatment had to go through the courts and it took several months before the treatment started," she told BBC News Online.

"If there is a treatment for this condition it needs to be started quickly. The disease is an automatic death sentence. There is no treatment so families afflicted by it will want to try anything that is on offer.

"This treatment could offer them light at the end of the tunnel. This is something that can be tried."

CJD drug gamble 'helps teenager'
26 Sep 03  |  Health
Q&A: vCJD treatment
25 Sep 03  |  Health
CJD drug: A scientist's view
17 Dec 02  |  Health

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