Hormone drugs hid the deadly disease

PATRICIA WYNN DAVIES

Human growth hormone was once hailed as the miracle cure for abnormally small children who faced a life of ridicule - and it produced some astonishingly good results.

But for some patients there was a fatal downside, the ticking time bomb of the agent for Creutzfeldt-Jakob disease (CJD) that was present in the hormone they received. Sixteen lives have so far been lost, and three more people involved in yesterday's legal action have contracted the disease. A further 200 of the "worried well" - those who fear they might contract it - have cases pending or about to be launched. The final tally of claimants might run into hundreds.

CJD, a neurological condition similar to scrapie in sheep and bovine spongiform enceph-alopathy (BSE) in cattle (though yesterday's cases have nothing to do with "mad cow" disease) has a lengthy incubation period. Forty-two years is the longest recorded, 30 is quite common - but once it has attacked the brain it is incurable, and fatal.

The natural incidence of CJD in the UK is very low. It is thought that it causes only one death per million of the population a year, compared with 1 per 100 among the human growth hormone (hGH) programme patients.

In order to collect enough hGH to restore normal growth patterns to the children, large numbers of human pituitary glands - tiny organs at the base of the brain - were routinely collected from corpses in hospitals and mortuaries from 1959 to the end of the programme in 1985.

The first death from CJD of a participant in the hGH programme was of Alison Lay, 22 , in February 1985. She had received the treatment between nine and 13. By then almost 2,000 children in the programme had been injected with hGH.

Abruptly in May 1985, and without explanation, the programme was withdrawn. The Department of Health decided that since there was no means of detecting CJD and no cure, it would cause unnecessary panic to go into the reasons why. A synthetic version of hGH was soon introduced.

The first sign to victims' families that there might have been a price to pay for their children's miraculous progress came in a letter from the Institute of Child Health in 1992 warning former patients not to donate blood or organs.

The only established criterion for the selection of pituitaries appears to have been that they should not come from the site of a primary disease. But there was no established inspection system - while mortuary attendants were paid a fee for every pituitary extracted.

Because batches of pituitaries were "pooled" the risk of the CJD agent reaching large numbers of patients was spread, helping to create the medical disaster that was waiting to happen.