Section A
PROBLEMS WITH HYPOGLYCAEMIA
Most of the letters (77%) mentioned a problem with hypoglycaemia after changing over to genetically engineered insulin. Nearly half (48%) of the correspondents experienced loss of warning signs of an approaching hypo (Fig.2). An additional 5% said they had very little warning. In 3% of the cases, signs noticed by others, usually a spouse, were noticed. Over a quarter (27%) complained that hypoglycaemia episodes were more frequent, and 18% that they were more severe. In a small proportion (5%), they were accompanied by convulsions or the person was reported to be violent or otherwise difficult to help (5%). Thirteen percent complained of having hypos at night. Correspondents described severe hypos they had experienced as "alarming","dangerous","frightening",appalling","dreadful",ghastly",Massive", "violent", and behaving like a mad bull".
This catalogue of increased and problematic insulin reactions was accompanied by other symptoms which appeared to be related to hypoglycaemia episodes. These included memory loss (mentioned by 10%, Fig.2), disorientation, confusion and inability to concentrate (9%), dizzy spells or panic attacks (2%), shaking and poor coordination (1%). One correspondent wrote that "it is impossible to explain what it is like to live each day with a brain that does not work or respond properly" (no.322). Several people also mentioned a sense of a split between mind and body which resulted in a state of awareness accompanied by inability to or great difficulty in making movements. Others wrote of drifting off into unconsciousness' after feeling very tired and sitting down.
People reported finding it more difficult than previously to counteract the effects of a hypo. Where people were experiencing lack of warning signs of hypoglycaemia, they were reliant on their glucose meters or BM strips and sometimes did frequent tests. A few reported that they had on occasion found very low blood sugar levels indeed (less than 1.0mmol/1) without experiencing physical symptoms. In more than one case a nil blood sugar reading was reported.
The lack of warning of an impending hypo, coupled with the rapidity and severity of the reaction caused most immediate problems because it could put the person with diabetes and possible others, in dangerous situations, sometimes resulting injuries and accidents (see below). It meant that the person with diabetes could no longer feel confident that they were in control of their bodily condition and this could become obvious in public. It also meant that they were more dependant on others to rescue them from unconsciousness since they themselves were unable to take remedial action and sometimes were resistant to it. When, in addition, the person with diabetes was living on their own and thus without someone watching out for hypo's, this development could lead to life-threatening situations. A mother writing about her concern for her son said that
There is no doubt in my mind that had he been living alone he would now be dead. Many of the hypos occur during the night, for no reason. No.80
Some of the hypos resulted in accidents (5%) and in prolonged unconsciousness with the person with diabetes being taken to hospital (12%). In the letters examined and included in this sample, there were 14 deaths (4%) attributed to insulin reactions. The injuries from falls and accidents resulted in broken legs and ankles, a cracked skull, cracked spinal vertebrae, a fractured neck and femur, an extensive burn needing a skin graft, a shoulder injury resulting in a shoulder replacement and a broken neck. The man cracked his skull commented:
Since human insulin is supposed to give you a longer trouble free lifespan, I find it annoying to think that twice in two months I could have been dead, if I had been in the wrong place at the wrong time; even worse I could have killed somebody else. No.349
The mother of a young man who had lost his warning signs and had a hypo while driving and crashed into a stone wall breaking his neck and ankles, wrote that he had just been on human insulin for six weeks. "As a direct result of being on human insulin and is very lucky to be here at all". Later on in the letter she added:
The clinic argues that the human insulin is better for him in the long run than animal insulin-that is if he can survive. No80.
The sister of a retired diabetic who fell while having a hypo when out shopping and temporarily parted from her, pointed out that she had been in a position to observe the effects of her sister's treatment closely and wrote:
I am…in no doubt that human insulin is the cause of my sisters problems…I hope that note will be taken of relatives and carers comments as in my experience the diabetic… knows nothing about the hypo (which can be a devastating experience) until after he event, and is quite unable to deal with it. No.130
An elderly diabetic living alone who had never previously spent a night in hospital, described a very difficult period she had recently experienced as a result if injuries in relation to hypos. She collapsed down a staircase and need a skin graft because of the injuries. This was followed by a further collapse which resulted in a compound fracture of her wrist. No sooner had she got the plaster off when she fell again and needed a hip replacement-"all because of the no warning insulin" she commented (No.158).
DETERIORATION IN CONTROL
Between a quarter and a third (28%) of the correspondents specifically mentioned deterioration in control of the diabetic condition since being changed over to genetically engineered insulin. The problems with control resulted from blood sugar levels which varied rapidly and inexplicably, and from a tendency to hypoglycaemia which could not be predicted or easily counteracted. Together, these problems could seriously undermine a person's confidence in their ability to lead a normal life and to feel in control of their diabetes. Many felt their diabetes was unstable and out of control for the first time in their diabetic history. A person who had been insulin dependant for 42 years wrote:
It was only when I went onto human insulin that I thought I was not in control of my diabetes. I went into hypo attacks daily with no warning what so ever. (Thanks to paramedics and good neighbours plus the casualty department at the local hospital I am still here to tell the tale). No 320
There were people that were clearly conscientious patients doing everything they could not try to maintain stability but facing very difficult management situations. There were also people who appeared to be in need of much more assistance with management on their "human" insulin regime and who, without it, were very much at the mercy of their more unstable diabetic condition. In an attempt to avoid the disasters which could result from sudden hypos, a few people mentioned that they were keeping their blood sugar levels at certain times higher than they would otherwise done.