NI vCJD victim given go-ahead for drug therapy

In a landmark ruling, the High Court in London has found that a Belfast teenager who is suffering from vCJD – the human form of Mad Cow Disease – can receive treatment from experimental drug treatment, despite its never having been tested on humans before.

The court ruled that victims of the incurable disease could receive the treatment which is designed to reduce the deteriorating effects the disease has on the brain.

The decision means that 18-year-old Jonathan Simms from Belfast, and a 15-year-old girl who cannot be named for legal reasons, are free to seek treatment immediately. However, the hospital trust which the families had been talking with has refused to carry out the procedure. The families have been advised to find another trust to administer the drug.

The drug, pentosan polysulphate, has been proposed as a potential "therapeutic agent" for CJD and it would require an operation to inject the drugs directly into the brain.

There is scepticism among government and health agencies that the drug will be effective. In October the health department asked the Committee on Safety of Medicines (CSM), and the newly-formed CJD Therapy Advisory Group, to review the current research, including recent unpublished data, and to advise on their findings.

The CJD Therapy Advisory Group considered that there was insufficient clinical data available to support the claim that the drug may be effective during clinical disease. In addition, the committee said, there was insufficient safety data upon which to base a treatment regime in humans as further experimental study in animal models was necessary.

Whilst incidents of vCJD are decreasing, as of November 4 of this year, UK health experts received 118 referrals for suspected vCJD. Thirteen deaths have been confirmed as linked to the disease this year, and according to health department records, there have been 117 deaths confirmed as linked to vCJD since 1990.

(GMcG)