"…as a nurse I come into contact with a lot of Diabetics who I am sure will also be very worried, I would like to be able to reaaure them, my fiancé and myself". (37)

Some sought information about research, or saw the BDA's role as doing research to clarify the situation.

"I would like to see the BDA look into this and find out why there is so much trouble with human insulin". (39)

The earliest of the letters (January 1989) suggested a survey of members. (At least two have of course been reported by BDA.)

Another theme which recurred was:

"I only wish there was someone who would listen." (41) or "Please read this carefully and understand that this Insulin, as was reported in all the Daily Papers, has had effects on patients." (9)

Doctors

The epidemiologist began his letter with reference to "recent scare stories in newspapers about deaths associated with human insulin" and Wolff's article states: "there will always be a fraction of the patient population which Imagines unpleasant symptoms with a new drug." Could it be that there was some tendency within the profession to pooh pooh reports of problems, in the light of the general success of the new treatments? Some of the letters told of feeling their plight rejected:

"My consultant was unsympathetic and made me feel inadequate and stupid, rapidly diminishing my confidence and, in fact, aggravating my condition through stress." (40)

"… you kindly supplied me with the name of Professor S as someone may like to see for a second opinion. …. The whole team … are genuinely caring people and we find their attitude is entirely different from that at our local hospital - at least we feel that we are human and that our problems are taken seriously." (1)

"I have always suggested that the problems have arisen since the use of Human insulin, but not one Specialist has admitted that this could be a possibility. Recently I saw a new Consultant at my local clinic and was amazed at his flippant attitude. He seemed to think that the situation was amusing. I am totally frustrated with the Medical Profession and cannot understand why they have been so tunnel-visioned with regard to Human Insulin … I feel the local Consultant would wait until I have been brain damaged or worse, before taking any action! (16)

One patient (who wrote 2 letters in the series) understood that she would never recover warning signals "as the nerves are damaged", following a slight stroke while taking part in Human insulin trials. (35,36)

Legal Redress

This letter, and 5 others, raised the question of possible legal action against the manufacturers of human insulin. But another sufferer argued strongly against such a course, having suffered also from sudden loss of warning symptoms, although never having other than human insulin.

"It would be wonderful to pin the blame on someone, but I think the cause can be attributed to a side effect of the diabetes itself, rather than a side-effect of insulin, albeit animal or human. I remain convinced that there must be many diabetics, like myself, who have suffered the loss of warning signs of hypos, but who do not seek to make others responsible for this." (10)

This is perhaps an unusually sophisticated reaction; it seems understandable if many people would prefer a simple explanation for their problems, especially if it suggests a single solution.

Conclusions

Most of the patients and relatives represented here had undoubtedly been very distressed. Some felt sure their difficulties were resolved by returning to animal insulin.

Diabetes causes complex problems and it must be disturbing and disappointing to find that the treatment prescribed no longer controls the effects of the condition. It would seem that some doctors were, or appeared to be, reluctant to acknowledge some patient's difficulties or to try the apparently backward step of reverting to animal insulins. Experts are still disagreeing about the evidence - eg correspondence in the Lancet vol 340 August 1 1922 pp 301-3; S.Wolff (op cit); "So far, there is no consensus on the physiological basis of a slight (but clinically important) difference in physiological response to human insulin, which in any case remains unproven, and nobody seems to be able to agree on ways of measuring any difference." So it would seem that the ability to recognise the onset of hypoglycaemia remains of vital importance, but the factors controlling this ability are not fully understood.

The Association has worked to set up research, discuss the evidence available, explain what is known to patients, families and medical advisors, to ensure that animal insulins remain available and are known to be so, and to listen and respond to enquiries by post or telephone.

Only two of the letters were written this year (January and May). If this reflects the pattern of the whole it may be that problems are diminishing as information about them filters down. On the other hand another public expose might release another flood.

It may be that these are the problems of a particular period, following the wholesale changeover to human insulin, and a situation which could in future be avoided or quickly recognised and dealt with.