Over a quarter of the letters (27%) reported deterioration in general health whilst using genetically engineered insulin. People complained of not feeling well, being lethargic, tired all the time and listless. Their relatives were concerned that they did not seem to be their usual selves, looked pale and ill, and lacked interest in things. In some cases, this change of insulin regimen appeared to be the beginning of a downhill slide in their health which ended in their death from a cause not immediately related to their diabetes.

A small number of people (Table 1) reported that they began to have aches and pains in their limbs and, or, difficulty getting around since starting on genetically engineered insulin. In several cases these symptoms disappeared when the patient reverted to animal derived insulin. In others, the change in insulin appeared to precipitate the development of MS symptoms. Small percentages of people complained of a distinct deterioration in their eyesight and of persistent headaches which had occurred since they had been using genetically engineered insulin. The problems with vision took various forms: the development of cataracts, retinopathic changes, and blurred vision. A few people complained of gaining or losing weight on the new insulin.

There were a few reports of unusual symptoms developing after the initiation of genetically engineered insulin therapy and clearing on the reversion to animal derived insulin.

DETERIORATION IN QUALITY OF LIFE

The letters as a whole are a testament to the effect of uncontrolled diabetes and vulnerability to hypos without warning on the quality of life of life of the person with the condition and his or her family. There were many vivid descriptions of the impact of the change over to genetically engineered insulin for this group of people with diabetes.

For 4 ½ years I was on human insulin. It was the most difficult and distressing 4 ½ years I have ever spent-in fact it was the only time during the two decades I have been a diabetic that I actually felt handicapped. No.34

Correspondents reported the consequences of loss of control of the diabetes, deterioration in general health or accidents meant increased dependence on others (5% mentioned this though it applied to many more); and loss of confidence about controlling the diabetes (9%) so that there was fear of going out alone, going to bed or driving (table 2). Some people (5%) had lost their job, been made redundant or found that they were unable to work. A few had been refused renewal of their driving licenses. There were several reports of people who had been prosecuted by the police after being involved in accidents while having a hypo.

There were some reports of personality changes since people with diabetes had been using genetically engineered insulin. These changes most often involved loss of interest of life, vitality and motivation (Table 2). Depression or suicidal feelings (6%) and bad temper, irritability, unruly and aggressive behaviour (3%) were also reported. One correspondent reported that his family noticed:

The complete change of character. I was becoming moody, critical, confused, forgetful and seemed to lack total concentration. But more and more I seemed to have unnoticed hypos. No.308