Column

Treatment for CJD on the NHS

‘Variant CJD was a man-made disease and it is a disgrace that this country, of all countries, is doing so little to produce a way of stopping it.’

So said the father of Jonathan Simms before a High Court ruling last December that allowed his son and one other patient with vCJD to receive a new and unproven treatment for their condition.

Against the recommendations of the Department of Health CJD Therapy Advisory Group and the Committee on the Safety of Medicines, the court held that administration of pentosan polysulphate (PPS) would be in the best interests of the patients, even though it had not yet been tested on human subjects.

In her judgment, Dame Elizabeth Butler-Sloss found that the risks of pain and bleeding posed by intracranial infusion of PPS were outweighed by the possibility of avoiding or rather delaying the inevitable deaths of the two young people.

The decision is important because it permits ad hoc medical experimentation on incompetent individuals. While this may have been tolerable given the dire situation of the patients, I would argue that theirs must remain an exceptional case. Although Dame Elizabeth correctly refused to obstruct the march of scientific progress, law and ethics demand that medical research be rigorously designed in nearly all cases. And the informed and freely given consent of the subject is an essential pillar of justifiable experimentation.

Where subjects, as in this case, lack the capacity to consent, extra care is necessary to ensure that those who consent on their behalf are wholly free from coercion, whether overt or insidious.

In the case in question, the sincerity of the parents and the integrity of the attending doctors was beyond doubt. Other cases may, however, be different and the courts need to ensure that vulnerable and incompetent patients are not sacrificed to the achievement of dubious scientific breakthroughs.

Though the High Court’s decision was only permissive – allowing rather than compelling doctors to proceed with treatment – in effect it has been complied with since. As such it has important implications for NHS resources.

The number of vCJD cases confirmed in the UK, although still low in absolute terms, is certain to increase dramatically over the next ten years, particularly if tests are developed allowing pre-clinical diagnosis.

As Mr Simms suggested, the state may have a moral obligation to provide treatment to those who have been so seriously affected by low standards of food production and inept regulation. This will, however, impose a significant, unplanned cost on one sector (the health service) in return for benefits that are disputed by its own experts.