Families fight for help over lethal growth treatment: People dying after being given hormones say their case is like that of haemophiliacs with HIV: they also want compensation. Liz Hunt reports

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The Independent Online
'IT IS HARD to talk about dying to your son, and it is even harder when he's full of fighting talk about beating the disease, but you know that he knows in his heart and soul that he can't beat it and he is going to die.' Noel Baldwin's son Patrick died in December but his father regards his death as a blessing for all concerned.

For almost a year Noel and his wife Janet, of Gainsborough, Lincolnshire, had watched the rapid decline of a fit and healthy 31-year- old with a promising career in the Royal Navy, to someone who was more dependent than a baby. In the later stages he was bed-bound, had to be fed by tube and was unable to move, speak or communicate.

Patrick is the most recent British victim of Creutzfeld-Jakob Disease (CJD), a rare degenerative brain condition related to 'mad cow disease'. He contracted CJD from treatment he had undergone as a teenager with growth hormone prepared from human pituitary glands. Some of the hormone contained the CJD agent. Between 1959 and 1985 when the treatment was stopped, 1,908 children were given the injections to help them grow. Many of these people are now in their mid- twenties or early thirties with young families. There have been eight deaths in Britain so far but no one knows how many of the others are at risk. There is no test for CJD, nor is there any treatment and its incubation period may be anything up to 35 years.

The Government has refused to consider compensation, claiming that medical knowledge was insufficient to have known of the risks at the time. But critics of that stance say these patients are in a similar position to the haemophiliacs who contracted HIV through contaminated blood transfusions.

Yesterday an all-party group was launched which seeks the establishment of a trust fund similar to the McFarlane trust for haemophiliacs. Angela Eagle, Labour MP for Wallasey, who has gathered 120 names in support of a Commons motion on compensation, said: 'Many MPs, like myself, have constituents who are faced with this disease . . . Because there is no test for CJD, the 1,908 children who were given the treatment, their families and friends must now live with great uncertainty. Their lives are fraught with constant worry and planning for their futures remains difficult.'

Tam Fry, director of the Child Growth Foundation and father of one of the children at risk, said that lives were being ruined by the threat of CJD. One young man had called off his marriage because he felt he could not risk leaving a young family fatherless. Others found it impossible to get life insurance or a mortgage.

From the start, the recipients of human growth hormone have been the victims of appalling management by the Department of Health. By June last year only 500 of the recipients had been traced and counselled about the risks.

In the United States, in contrast, as soon as the risk of CJD became apparent in early 1985, information and counselling of recipients was given and by 1987 all 6,000 had been contacted.

Michael Preece, professor of growth and development at the Institute of Child Health in London, said that most of the living recipients had now been traced.

The families and doctors of the eight people who have developed CJD have faced a battle to get information about the disease, and help in caring for the victims.

According to Noel Baldwin it was a 'brick wall'. 'The GPs were marvellous and did their best but they did not know what they were coping with. They were scrabbling around for information. Patrick's care was good but it could have been better.'

(Photograph omitted)