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Insulin
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DIABETIC COMMONSENSE
BALANCE AND CHOICE
A PERSONAL ACCOUNT
BEATRICE REID
Published on I DDT website by kind permission of the late Beatrice Reid
"In most healthcare systems there is no recognition of the capabilities or expertise of the consumer, while the physician frequently regards himself as the only trained member of the physician/patient relationship. Given this scenario, it is natural for the healthcare provider not to consult the patient. Further, diabetes education is often given only to enable the person with diabetes to follow instructions and not to empower him to take decisions. All this gives rise to consumers who are passive, fragile and extremely dependent.
These traditional roles account for the dependency of a lay person and the paternalism of a physician. It creates resentment and frustration when an assertive and knowledgeable lay individual does not behave 'traditionally' and questions a healthcare provider .... This traditional relationship often continues within a diabetes organisation, and causes its failure.
People with diabetes and healthcare providers have to dispose of the roles they have played for centuries and start acting as equal partners when they work together in a diabetes association."
Maria de Alva, President of the Internation Diabetes Federation, who is not a physician but is a consumer - she has diabetes.
CONTENTS
1. Introduction: Enter Dr Lawrence.
2. Balance: Signpost to Success.
3. Juggling the Blue Carbohydrate and Red Insulin Balls.
4. The Great Debate: Natural Animal or Artificial 'Human' Insulin?
5. Conclusion: Commonsense Rules.
HEALTH WARNING
This little book is intended for ordinary people: diabetic specialists would be well-advised to steer clear of it. My commonsense approach might disturb the medical fraternity, for it will challenge the assumptions of recent practice and expose the folly that can result from behaving towards diabetics as if they were scientific experiments instead of human beings.
The views expressed here are my own, based on a long-term partnership with diabetes. They do not belong to any other individual or organisation.
DIABETIC DEFINITIONS
DIABETES is present when the sugar (glucose) level in the blood is too high and stays that way. The diabetic is unable to burn carbohydrates properly. This is due to a defect in the pancreas, a gland in the abdomen which produces INSULIN. This hormone is needed to keep blood sugar levels within the normal, healthy range. Diabetes may be present either when no insulin is made or when insulin is made but is not working properly.
CARBOHYDRATES, sugar and starch, produce energy which supplies fuel for the body. They are found in bread, pasta, porridge, rice, potatoes, cakes, biscuits, jam and sweets.
HYPOGLYCAEMIA, known to diabetics as HYPO, is abnormally low blood sugar.
INTRODUCTION: ENTER DR. LAWRENCE
I am a diabetic and have been on insulin for seventy years. For much of that time, I was a patient of Dr. R. D. Lawrence, 1892 - 1968. The wisdom and compassion he bestowed on me has enriched and protected my life. I shall be happy if I can pass on to my fellow diabetics some of what I gained from knowing him.
Dr. Lawrence was one of the first people whose life was saved by the discovery of insulin in 1921. "In the successful treatment of diabetics the patient, the nurse, the practitioner and the specialist are often partners working together to establish the patient's health. In the long run the most important part, the melody, is played by the patient and the accompaniment may be almost unheard."(1)
When patients visited Dr. Lawrence in his Harley Street rooms, he greeted them with a hearty handshake. He always had a pink carnation in his buttonhole and never wore a white coat. After a friendly exchange of family news, I remember he would always ask to be shown the glucose sweets I was carrying. He would explain, with a twinkle in his eye, that in the past his patients had seemed too good to be true. Every one of them said they always carried glucose sweets ready for an emergency. When he asked to see what they were carrying, he found his fears were justified. Only about one in ten could produce the sweets they said they had. He told me he wouldn't like me to be one of those irresponsible people on insulin who go around without the sugar they will need to counteract a hypo.
The next conversation would be about blood sugar. Dr. Lawrence would say, "We'll both guess what we think your blood sugar is now. I'll write down the answers and put them in front of us on my desk. No cheating! Of course, you should be right and I should be wrong. I can't expect to know as much about how your body works as you can." Sometimes we were both slightly wrong but most times I was the winner.
We would then discuss the new medium and long-lasting insulins that were coming on to the market. He would try them out on himself in different strengths and combinations. He would often say, "Your diabetes seems to be happy as it is. I see no advantage for you in disturbing things. Why should you change?"
I have followed his advice to this day. Neutral, quick-acting animal insulin is the only one I have ever used, except for the distressing interlude when I hoped to take advantage of the promised, but never fulfilled, wonders of 'human' insulin. The result of this conservative behaviour is that my body has fallen into the habit of good diabetic control. It has not had to undergo the stress of fitting itself into the rhythms of new insulins or learn to tolerate the additives mixed in to make insulin last for a longer or shorter time. Perhaps this simplicity is what has found favour with my hormones and helps to explain the health and happiness that have coloured my life.
Fate was kind on that overcast afternoon so long ago in 1930 when it sent me to see Dr. Lawrence for the first time. He taught me many things, and one of these was not to regard the doctor as a god. One day, after examining my eyes to detect early signs of diabetic retinopathy, he looked worried and said "Always remember, Beatrice, for all our expertise and training, we doctors really know very little about the fundamental problems of life. We don't understand the cause of diabetic retinopathy, we can't prevent liver cancer or even cure the common cold." This humility and wisdom gave me lifelong courage and insight. The wise man is the one who knows he does not know.
BALANCE: SIGNPOST TO SUCCESS.
Diabetes, to
my surprise, forced me to become a juggler, learning to balance the blue
carbohydrate balls against the red insulin balls. My aim is to keep the
blood sugar steady, to throw the coloured balls so they will not fly too
high nor fall too low. Either extreme leads to disaster. This balancing
act is the secret which I have found to be the key to managing my
diabetes and my life.
The message Dr. Lawrence passed on to me was, "Never let diabetes stop you doing anything you want to do. And remember you must control your diabetes: never let it control you." Every diabetic, like every human being, is different and you are the only one who can listen to what your body is telling you. However caring and clever other people may be, they cannot overhear what your body is saying. No-one but you can decide which of many available treatments fits your lifestyle and suits you best. The job of the doctor, nurse and diabetic clinic should be to empower you to make an informed choice and help you put your choice into practice. The care team is there to provide a gentle accompaniment in the background: the melody is for you to play.
My focus on being a juggler and seeking balance is based on experience; it is not a will o' the wisp, a passing fancy. It goes back a long way. "In 1932, for the first time in the history of any disease, a group of diabetics, aided by their interested doctors, began to form what became the British Diabetic Association to assist themselves and other diabetics. By 1934, an office was set up and a journal was established to link the members together."(2) It is no accident that, to this day, their magazine is called BALANCE. This title sums up in one word what we diabetics must do to stay healthy.
Diabetes is not an illness any more than having red hair or flat feet is an illness. It is a permanent condition that has to be accepted and organised. If anyone from the diabetic establishment tries to persuade you that you have an illness, close your ears and go elsewhere for help and guidance. What did it mean, therefore, when I was told seventy years ago that I had diabetes? How was I different from those around me? First, it meant that while other people who are not diabetic produce enough insulin to digest the food they eat: I do not. My insulin shortage leaves energy-producing carbohydrates unprocessed and this causes blood sugar levels to rise. These undigested carbohydrates clog up the system like untreated sewage and, if not dealt with, the persistent poisoning is deadly. Second, it meant that other people have a natural system to control the level of their blood sugar: I do not. This is something I can do nothing to remedy and is less easy to cope with than the lack of insulin. Yet, strangely enough, it is a problem which has received little attention from diabetic specialists and has not attracted the curiosity of research scientists who seem unwilling or unable to notice how important its solution would be. Success here would be more valuable to ordinary diabetics like you and me than the money and ingenuity set aside to develop new insulin cocktails which only serve to complicate our juggling.
When, as good jugglers, we observe what is happening to us, we notice that doctors now push us towards low blood sugar. Imbalance has become woven into the pattern of modern treatment. Commonsense has been forgotten. Patients are warned that high blood sugar must be avoided at all costs because it will threaten their health and make them more vulnerable to long-term complications. This may well be true, but current medical advice leads patients into the unfriendly territory of low blood sugar and the dangers of more frequent hypos. The middle way is lost.
Why do some people fail to consider both the long and short-term complications that may be piling up in the aftermath of these repeated low blood sugar episodes? When a hypo hits us, the result is always distressing. The brain is starved of sugar, we sweat profusely and nothing works properly. This disrupts normal life, sometimes causes serious accidents and occasionally, especially after a sudden hypo at night, lands a diabetic in hospital in a coma. If one extreme is bad, would it not be prudent to expect the other extreme to be just as bad? Why is all the blame for long-term complications heaped on high blood sugar? Has any research been done to establish whether routine exposure to low blood sugar might also have to bear some of the guilt? This may sound like heresy, but doctors who are not themselves diabetic need to be constantly reminded that their diabetic patients can carry on when blood sugar rises but are flattened when it falls below normal. Whatever warnings the experts may issue to frighten us away from high blood sugar, I still prefer what happens to me when blood sugar rises to what happens when it falls too low. Prophesies of future complications seem a long way away, hidden in the shadows of Never-Never Land, while sudden hypos, felt in our blood and bones, crowd around us and demand immediate attention.
I have been a diabetic juggler for almost a lifetime and the balancing game has become second nature. This experience enables me to suggest that in modern treatment the scales should be weighted more evenly to help us keep the blood sugar steady. Our doctors will be able to help us better after they accept the truth, obvious to us diabetics, that abnormally low and abnormally high blood sugars are equally bad. Changes in treatment will not come about spontaneously, but it would be an advantage if all diabetic jugglers knew what they wanted and were determined to get it. Let us hope that a time will come when doctors will have the confidence to emerge from behind the protection of their white coats and listen to what we tell them. Together we may then clear the air and talk the same language.
JUGGLING THE BLUE CARBOHYDRATE AND THE RED INSULIN BALLS
Jugglers need to know the shape, size and weight of the balls they are
juggling. I have met diabetics who were hopelessly lost because the word
carbohydrate had never been explained to them and they had no idea of
how much carbohydrate to eat each day. Their blue carbohydrate balls
were therefore falling about in all directions, unrelated to the insulin
or tablets they were taking and completely out of control. This chaos
need not happen to you. With the help of your doctor and dietician, you
can be sensible and decide what to do. Modern treatment gives you
freedom. You do not have to be starved, deprived or over-fed. The only
thing that matters is to adopt a mindset that encourages us to keep our
carbohydrate intake the same each day. Commonsense shouts the message
that anybody who eats a lot of carbohydrate on Monday and very little on
Tuesday is not going to feel well. Because diabetics have lost the
automatic blood sugar control system which others enjoy, this is
especially true for them. To keep carbohydrate intake steady is as
important as to keep the blood sugar steady.
This message had not reached an elderly lady who shared a hospital ward with me. She became bad-tempered and cranky when her blood sugar went out of control, although she insisted that she always obeyed the rules. I watched her and was horrified to notice that she was constantly helping herself to the fruit that her visitors showered upon her. She would not listen to me when I told her that the extra carbohydrate in the fruit was enough to explain her unwelcome high blood sugar. Her doctor had told her that fruit was good for her and that was that.
How much you want to eat each day is for you to decide. Your dietician can suggest various choices but only you can make a true commitment and determine to fulfil it. I know this is difficult because I have been a Captain in the Fight-Against-Flab Army for many years and my indiscretions have always prevented my promotion to Colonel. Keeping the balance right, not eating too much or too little, will never be easy but the good health reward for success makes the effort worthwhile. You have only to scrutinise your naked body in the mirror to see whether the billows and bulges are attractive or just floppy rolls of ugly fat getting in the way. The stark truth is that slimming means eating less and exercising more. Huge profits are made at our expense from special diets and slimming aids. These are costly ways of telling us that our will power is weak and it is time we tried harder.
Once you have taken your first flight and are on the way to becoming a fully-fledged diabetic, you will become aware that insulin and carbohydrate work together. If you decide to take extra carbohydrate, you will need extra insulin to digest it. Imagine you are invited to a birthday dinner on Saturday. When you return home after the feast, you will have to consider how much extra carbohydrate you consumed. Do not panic or feel guilty; an occasional high blood sugar is not a crime. To digest the extra carbohydrate and restore the balance, you could take a brisk walk, eat less carbohydrate at the next meal, or inject a little extra insulin - two or four units will probably be enough.
When we know the amount of carbohydrate we need to balance the insulin, how do we help ourselves to keep the balance right? For me, the easiest way is to divide the day into three parts - morning, afternoon, evening. If my dietician and I have selected 300 grams as the daily norm, then 100 grams is eaten for breakfast and elevenses, 100 grams for lunch and tea, and 100 grams for supper and bedtime. This plan allows flexibility and a sensible spread over time. If you are hungry, more can be eaten for lunch and less for tea; if you are not hungry or in a rush, you can eat less for lunch and make up by eating an extra bun or sandwich for tea. Diabetics are often told they must have three main meals and three snacks daily. These instructions suggest a timetable that is difficult to carry out for a person leading a hectic life. All that is necessary is to know what you are doing and avoid stuffing yourself at one moment and starving yourself the next. Your body cannot be expected to perform well if you throw different amounts of food at it every day and never allow it to integrate with the insulin flowing through your veins.
Being diabetic has the great advantage that it requires you to stick to a pattern of eating that is healthy for everybody. There is no such thing as a diabetic diet. A healthy diet for you is also a healthy diet for your family. You need not waste money on special diabetic foods. An emancipated diabetic can eat anything; the only limitation is to eat the right amount at the right time. The signpost pointing to healthy eating will read 'low fat, high fibre, with plenty of fresh fruit and vegetables.' It is the carbohydrates that need to be carefully managed, whether you are on insulin, tablets or diet. Proteins (meat, fish, eggs, nuts, beans, lentils) and fats can be eaten in normal helpings.
A true, cautionary tale might be useful here to embroider the word 'normal'. At a diabetic clinic, I found myself sitting beside a handsome, but overweight, young man. He complained that he never felt really well and could not lose weight although he always kept strictly to his diet sheet. I asked him to tell me everything he had eaten yesterday and what he planned to eat tomorrow. I was appalled to discover he thought he could eat as much cheese as he liked, and he was eating nearly a pound of cheese each day. No wonder he felt ill and could not lose weight! He badly needed an injection of commonsense.
I have found the easiest way to eat the right amount of carbohydrate is to follow the ten-gram exchange system invented by Dr. Lawrence. This method has fallen out of favour lately, perhaps because it can be followed without the help of a qualified dietician. It simply tells you how much of each food is equivalent to ten grams carbohydrate and leaves you to mix and match the ten gram portions to your taste. For example, one slice of bread counts as about one ten-gram portion. It can be exchanged for any one of the following: two cream crackers, one egg-sized potato, one medium apple, one orange, half a large banana, ten strawberries or ten grapes, three large plums or apricots, and so on. This list of ten-gram exchanges can be extended at will. The idea is even simple enough for young children to use.
I remember, as a rebellious seven year old, kicking against injections and food rules, how Dr. Lawrence took the wind out of my sails by telling me I could eat whatever I liked; all I had to do was to remember what I had eaten and tell my mum about it, and not try to deceive her or myself. It did not take me long to put this teaching into practice. At school, my teacher and my classmates knew about my diabetes and that I had to eat one large banana, twenty grams carbohydrate, at break. This routine bored me stiff. I cut my banana in two, ten grams each, and started to swap with what my class friends had brought for their mid-morning break. Banana was a novelty for them and they were as keen to try it as I was to be rid of it. This developed into a fascinating barter system. One day half a banana was swapped for a digestive biscuit, next day for half a sandwich, then for three toffees. Becoming braver, both halves of the banana were exchanged for a biscuit and an apple, or an orange and ten smarties. Break became exciting, not boring. I did not feel deprived any longer and have not done so since. I remembered the second part of Dr. Lawrence's instructions. I always told my mother exactly what I had eaten and I was always praised for doing this. When she called to collect me from school, my friends would rush over to tell her all about that day's banana exchanges!
Health and happiness are dislocated if you eat too much or too little carbohydrate. What matters is that the bullseye of the carbohydrate target is hit each day. When this is achieved, the insulin and the carbohydrate will fall into each other's arms and waltz along happily together. A clever juggler will be able to keep the blue balls balanced and have the confidence to try wonderful new ways of eating and living.
We juggled with the carbohydrate first because this is easier to balance than the insulin. We can control and measure what we put into our mouths even if we sometimes cheat. Although insulin, too, can be accurately measured, it is more difficult to balance because its behaviour is influenced by many factors, some of them outside our control. Remember, insulin does not work on its own. It plays an essential part in our hormone orchestra. If other hormones, for example, adrenalin or thyroid, are discordant, we will have a hard job trying to keep the insulin in tune. We also need to be aware that exercise, infection, stress and weather are four awkward customers, difficult to deal with because they change all the time, upsetting the insulin balance and defying scientific measurement. Perhaps this could explain why diabetic experts often ignore these factors when teaching us how to live with our diabetes.
It might be helpful to explore the features of these four awkward customers. Consider exercise first. If you think about it for a minute, you will realise that whenever you take physical exercise not part of the normal routine, you will burn up extra energy (sugar) and therefore need less insulin or more carbohydrate to keep the balance right. For example, before playing a strenuous game of tennis, you should take a carbohydrate snack to provide the extra energy you will be using. This is the moment to indulge in a chocolate digestive biscuit without the bitter taste of guilt that might spoil the flavour at other times.
The second awkward customer is infection which can play havoc with the required insulin dose. Be prepared. Note carefully what is happening and do not be taken by surprise. A sudden increase in insulin dosage is nothing to worry about and when you get better, the fall back to normal may be equally sudden. Recently, a bad bout of influenza caused my insulin need to double almost overnight. Three days later, as healing progressed, my body picked up its normal rhythm and the insulin went back during the next day to its usual dose.
Stress is the third awkward customer that you need to be aware of as it arrives uninvited, upsets the balance and is difficult to counteract. Dr. Lawrence used to warn us, "When the stock exchange falls, the blood sugar rises!" Moving house, unemployment, exams, family problems, bereavement and accidents are some of the experiences that may trigger stress-related insulin upsets.
The fourth awkward customer, the weather, is the one that is completely beyond our control. It creates variable conditions that affect the rate at which we burn up energy and use up insulin. As my husband used to say, on a frosty morning or a hot, dry summer day, "Watch out! This is hypo weather. Be careful. Be sure to have your glucose sweets in your pocket." In my experience, on a crisp, dry day, I would feel symptoms of an approaching hypo half an hour earlier than on a sultry, humid day. Knowing this, I could be prepared and avoid trouble. 'Fore-warned is fore-armed,' says the old proverb.
These variables, the four awkward customers, make juggling the red insulin balls a difficult but fascinating challenge. Their existence reminds us that we are not a chemical experiment, whatever the diabetic clinic thinks. No insulin dose is ever perfect, but we can feel pleased and proud when the blood sugar obeys our instructions and remains reasonably steady.
It will be easier to manage these delicate red insulin balls when we investigate how our blood sugar levels rise and fall during the day. To do this, I suggest we set aside a testing week when the weather, your carbohydrate intake, and your stress levels are pretty stable. Test your blood sugar four times a day for seven days. It is clearer if you enter the results on graph paper. If the first test is on waking and the second around midday, the third at teatime and the fourth at bedtime, you join these four dots and this shows the blood sugar profile for the first day. Repeat this for seven days. The results at the end of the week make it possible to draw an average daily blood sugar profile. Next time you attend the diabetic clinic or see your consultant, ask them to draw their version of your blood sugar profile and compare notes. It will be interesting to find out which of you is more accurate.
Nobody likes to test but it has to be done, whether we use a urine or blood sample. We need to do this to control our diabetes and not let it control us. We should not test to please a relative, a doctor, a scientific study or an enthusiastic salesman. Be careful not to become a diabetic bore, obsessed with constant testing. Doing a test is a waste of time and money unless the result can be used to plan future action and manage our diabetes better.
Finger-pricking blood tests are faster, more accurate, more expensive and more painful than using a urine sample. This does not always make them the best. Nowadays, home testing blood sugar meters have become popular. They are in universal use in rich countries where the expensive test strips can be afforded. The decrease in hypo warnings and the quicker action of the new 'human' insulins make frequent testing more necessary. The manufacturers of these high-tech machines must be rubbing their hands in glee as they watch their profits mount. The remarkable accuracy of these meters is one of their chief selling points. The fact is, however, that such accuracy is irrelevant.
Every doctor knows that blood sugar, like blood pressure, does not remain static for diabetics or non-diabetics. By the time the result has been recorded, the precise measurement will have changed. If the test result is 5.6 mm now, it will have moved up or down to perhaps 6.2 or 4.3 mm half an hour later. The amazing accuracy of these high-tech blood testing meters does not greatly help us when what we really want to know, to understand our diabetes, is whether the blood sugar is low, medium or high and whether it is rising or falling. Their detailed information only serves to distract us from the truth that blood sugar is always rising or falling, constantly changing, whatever test method is used.
These modern machines are not yet clever enough to respond to this fundamental truth. Professionals do not seem to acknowledge how important it is for diabetics to know about the rise and fall of blood sugar, or if they do, they do not always tell this to patients. After many years experience, I have found that dipping a test strip in urine, though the results are less accurate and less immediate, tells me all I need to know. If the bladder is emptied and a second sample taken fifteen minutes later, the answer is immediate enough for normal purposes and I am not diverted by misleading accuracy.
The diabetic establishment favours synthetic 'human' insulin and finger-pricking blood sugar testing machines. Some of us, not part of the establishment, may think differently. Just as we may prefer to stay with the slow, gentle action and more satisfactory warnings of hypos that animal insulin gives us, so we may also wish to use the urine testing method to avoid the sore fingers caused by frequent finger-pricking. Expert advisers, perhaps influenced by pharmaceutical companies, seem to have forgotten that clever machines have no natural instincts. We would have to stop the clock and hang in suspended animation to give meaning to the delicate precision presented to us by these modern test meters. Time moves on and we move with it.
The red insulin balls gradually become more friendly and familiar as we learn not to expect miracles, or be disappointed when stress, infection or weather temporarily disrupt blood sugar levels. Our confidence increases, we make fewer mistakes and we handle them better. We train ourselves to tune in to the song of our own good health.
THE GREAT DEBATE: NATURAL ANIMAL OR ARTIFICIAL 'HUMAN' INSULIN?
Progress
towards becoming a well-balanced diabetic is not helped by the wide
range and increasing choice of insulins being put on the market. Is this
complication really necessary? Over forty varieties of insulin (3) are
advertised and none of them would be on the shelves unless manufacturers
could make a profit by selling them. Commonsense tells me to complain
loudly about having to find my way and make the right choices through
the insulin maze. It does not matter if we select the wrong toothpaste
or cat food, but insulin is different. The diabetic community cannot
survive without this life-saving drug. We therefore form a captive
market and, as any economist will tell you, this creates a perfect
opportunity for experts to manipulate and exploit us. Have our gurus the
time or inclination to guide us through this jungle of short, medium,
long-term and mixed insulins? Do they explain the scientific jargon and
help us make a free and informed choice?
In this search for the right insulin, newly-diagnosed diabetics, handcuffed by ignorance and fear, are particularly vulnerable. No way can they decide for themselves which insulin to use. They have to be guided by the care team who, in these circumstances, have no option but to take control. Let us hope that sooner rather than later, these fledgling diabetics will be able to fly from the nest and act on their own initiative to make an informed choice of which insulin suits them best.
Three clues will help us make up our mind. The first is not to abdicate in favour of the care team or encourage them to steal our melody. The second clue is not to make a decision until you have in front of you a complete list of all insulins on the market, both animal and 'human'. Thus fortified, you and your helpers can work out what is possible for you. An informed, rather than an imposed, choice will result. The third clue is not to believe what the printed instructions tell you about the strength and duration of action of each kind of insulin. In my body, short-acting, neutral insulin reaches its peak after six hours and remains active for at least twelve hours. Two injections daily are enough. The label, however, informs us that it lasts only six hours and peaks after three hours. If my doctor or I had believed what the manufacturers told us, we would have been up the creek in a big way!
The debate about whether to choose animal or 'human' insulin has raged ever since the latter was invented in 1982. Two red herrings, now rotten and stinking, must be cleared away before rational argument can proceed. Whenever the 'human'/animal insulin issue raises its head, there are people around who talk rubbish and tell us we need synthetic 'human' insulin because the world is threatened with a shortage of animal insulin. This is nonsense because such a shortage is not real. IDDT has figures to show that there are plenty of animal pancreases. Enough cattle and beef pancreases from slaughtered animals are available worldwide to supply what might be needed for two hundred million people. In the United Kingdom about three hundred and fifty thousand people are dependent on insulin. We are a long way from being short of animal pancreases to supply insulin for all who need it everywhere. Human insulin is not required now or in the foreseeable future to make up for a non-existent shortage of animal insulin. Let this red herring be buried once and for all. Those who persist in keeping this rumour alive are foolish; their behaviour in the face of the known evidence is unworthy of their training as doctors and scientists.
The other red herring, that there is no difference between natural animal and synthetic 'human' insulin, is equally far-fetched. Animal insulin is extracted from the pancreas of dead cows and pigs. Human insulin is produced in a completely different way, in a laboratory. "A great deal of research went into producing human insulin by means of genetic engineering. The genetic material of a bacterium of a yeast is reprogrammed to make insulin instead of the proteins it would normally produce. This insulin is purified so that it contains no trace of the original bacterium." (4)
Synthetic human and natural animal insulins are produced from different raw materials in different ways. It follows that they are as unlike as chalk and cheese. I find it hard to believe that any reasonably intelligent doctor or scientist could be so misguided as to expect them to be the same and have the same effects. Complicated and costly research with double-blind samples and vast arrays of figures are not necessary to prove what any normal person can work out on the back of an envelope. Yet, in spite of this, when I started to use 'human' insulin in 1985, and found it played havoc with my life and my diabetic control, two eminent diabetic consultants told me that there was no difference between animal and 'human' insulin. My troubles, they insisted, were entirely imaginary, although my local doctor, my carers and friends all supported me. In my distress, I phoned the British Diabetic Association and found they had received three thousand unsolicited letters, all complaining about the difficulties experienced with 'human' insulin. This information made me realise I was not going mad and my self- confidence began to return. Is it too much to ask the medical profession to recognise that some people are not suited to synthetic 'human' insulin?
"The dismissal of patients' reports of problems with 'human' insulin, because this is only anecdotal evidence, is quite wrong. All reported side effects for any drugs are always anecdotal. The demand for scientific evidence to prove that these side effects exist, is unrealistic because it is impossible to prove a negative." (5)
It is hard to understand why this delusion of sameness persists. Even today, some experts are unwilling to believe that this difference between 'human' and animal insulin is real and that the 'human' variety can disagree with some diabetics. Let us hope that this red herring can be cast out and forgotten with its twin, the mythical shortage of animal pancreases.
When we have cleared away this confusion, the next task is to expose the censorship surrounding animal insulin. Many doctors leave us ignorant about animal insulin. The depth of this ignorance was exposed to me recently. It has shattered any fragile remnants I retained of good-will towards the medical and pharmaceutical establishments. I was being driven home one evening by a diabetic friend on 'human' insulin. I asked her how she was coping with it and told her it had not suited me. "Oh, I find it's fine. It suits me perfectly. The only trouble is that I get hypos in the middle of the night. My husband has to feed me and rescue me. It worries him a lot. I don't know what to do. I am going away to an international meeting for four nights and I won't have him to sleep beside me." I replied, "But if you change to animal insulin you will be all right. I live alone and don't have to bother about sudden hypos by day or night." She replied, "I couldn't do that! My doctor wouldn't hear of it. He would not approve. He says human insulin is the best!" Professor Tauscher pointed out at the 1999 AGM. of IDDT: "The problems are always blamed on the patient and never on the product. Where 'human' insulin and hypoglycaemia are concerned, it is a product problem and not a patient problem!"
I did not want to believe my ears. My friend is a highly intelligent professional woman working in a hospital. What had gone wrong? Surely, at least anybody who experiences sudden hypos by day or night should be encouraged to overcome this difficulty by changing to animal insulin. But apparently she is condemned to suffer needlessly. "There is a need to convince healthcare professionals and doctors that if a person is experiencing frequent and/or severe hypos or any other unexplained symptoms, then they should try natural animal insulin."(6) It is amazing that, in this information age, thousands of diabetics are kept in ignorance of the availability and advantages of animal insulin and are allowed to suffer the fear and indignity of avoidable sudden hypos.
Whenever anybody tries to lift the veil of secrecy surrounding animal insulin, or mentions the limitations and difficulties of 'human' insulin, an angry chorus tries to shut them up, saying it is unfair to frighten and upset diabetics and their carers who are happy and settled on 'human' insulin. If this is so, and they are really happy, then why should they be upset? "And what does happy on 'human' insulin mean anyway? If you have never tried any other insulin you actually do not know how happy you are on human! I always remember a doctor saying to me about being unwell - the trouble is when you are unwell you don't realise how unwell you are until you are well again. This also applies to happiness - how do we know if the people who are said to be happy on human insulin are as happy as they could be? We don't know, nor do they and nor do their doctors." (7) How do they know they have to put up with the problem, if they have never been told that there is an alternative treatment? Could you honestly say you preferred tinned salmon if you had never been lucky enough to taste fresh salmon?
Those who are satisfied with the status quo will not be involved, but a sizeable minority, including myself, cannot function on 'human' insulin. Currently about fifty thousand diabetics in the United Kingdom are on animal insulin and their number does not seem to be decreasing as the elderly die off. Their welfare should not be swept under the carpet to simplify life for doctors, reduce distribution costs for manufacturers, allow them to benefit from economies of scale and increase profits. We are informed that synthetic 'human' insulin will probably become standard. Those of us who need animal insulin will be victims of considerable commercial pressure. "Drug companies function on an international level and so do the medical profession, added to which they also have partnerships with each other. These partnerships exclude patients but include an agenda that may well be different from ours. We have only one agenda: to have the treatment that we need with the species of insulin that suits those needs."(8)
To make matters worse, ignorance about the availability of animal insulin is widespread amongst professionals - doctors, diabetes specialist nurses and pharmacists. This can embarrass patients and they often have to become assertive to obtain the prescription they need. Already, to my dismay, animal insulin has been systematically withdrawn from the USA, Canada, Australia, France and the Irish Republic. For those who are lucky enough to live in the United Kingdom, it can still be found in Wrexham, Wales, where it is manufactured by C.P. Pharmaceuticals in many varieties in both bottles and cartridges, and if you order cartridges, a well-designed insulin pen will be supplied free of charge.
What differences do those of us who have tried both kinds of insulin notice? The fundamental difference seems to be that animal insulin, as any of the thousands of diabetics using it can tell you, works more slowly and gently in your body and gives longer warnings of an approaching hypo. It helps your hormones play in tune without the discordant notes that seem to sound with 'human' insulins. This may have something to do with the antibodies still present in animal insulin which have been taken out of the 'human' variety. These antibodies may also explain why warnings of impending hypos come sooner and last longer. Perhaps it is the extreme purity of human insulin that makes it difficult for some of us to use, and causes us to question its value. It provides the extra insulin that diabetics need but, in doing so, does nothing to restore the system that regulates the blood sugar. The insulin supply is OK but the balancing mechanism is as cranky as ever. Could it be that those antibodies in the old-fashioned animal insulin made it work more gently and slowly within our body and helped our hormone system warn us earlier when the blood sugar was falling dangerously low? Did those clever genetic engineers concentrate so hard on making insulin that they forgot that we ordinary diabetics urgently needed help to know when blood sugar is falling abnormally low? Please could they remove their one-eyed goggles, swallow a mug of commonsense and look at the whole picture of being diabetic which is not simply the need for insulin. Please, if we have to be programmed for synthetic 'human' insulin, could we have our antibodies back? After this is done, we shall all feel a lot safer.
More than fifteen years have passed since synthetic 'human' insulin was launched on the market. Its advent was heralded as the start of a new era. Absorbing the propaganda, I could not wait to get my needle into this scientific miracle. I was disappointed and frustrated. Diabetics are still waiting to enjoy the benefits, scientific or anecdotal, that this discovery was supposed to have brought them. The promised progress, widely advertised at the time, has never materialised beyond an illusion invented by clever spin-doctors. It is time scientists stopped wooing and confusing us with all these wonderful new 'designer' insulins. They are only tinkering with our real problems and leading us up blind alleys. They need to roll up their sleeves and have the courage to tackle a more difficult project. The urgent need is to try to discover how to replace the reliable blood sugar control system we lost when we became diabetic. I believe that until success is achieved in doing this, we will need animal insulin, with its helpful antibodies, to lessen the unacceptable threat of sudden hypos that seems to be inherent in the use of 'human' insulins. I hope I am wrong and that some time in the future the promised wonders of this artificial insulin will appear. Until then, I cannot help feeling cheated. I have done nothing to deserve being caught up in this conspiracy of silence about alternative treatments. Which God was it that empowered the medical fraternity to feed me with misinformation and deny me the right to choose between using natural animal or genetically engineered 'human' insulin?
CONCLUSION: COMMONSENSE RULES.
Has there been any progress in the treatment of diabetes since Dr.
Lawrence died on 28 August 1968? The traditional treatment which he
devised involved two injections in twenty four hours. Nowadays, some
diabetics on insulin are expected to prick the skin as often as five or
even six times a day. This can hardly be regarded as progress. "There is
nothing wrong with what is called conventional therapy, twice daily
doses of short and longer acting insulins, and it is quite possible to
achieve 'good' control on this regime.
The multi-dose treatment encourages people to keep changing doses and then there can be too many variables involved to achieve stability."(9) Despite all the modern methods of treatment and so many professionals working with diabetics, there is not much to show for it. The Cohort Study, carried out from 1972 to 1997 by the British Diabetic Association (now Diabetes UK), based on research into trends or causes of death, states that "although care has been improving and quality of life for people with diabetes has improved, the study does not show that there has been the reduction in the rates of death among younger diabetics under the age of forty that might have been expected. Only further studies will show if this improved knowledge will reduce deaths in the future." Unfortunately, some people on insulin are still at risk of being found dead in their beds and, as Dr. Gerlis points out, these are avoidable deaths that should never occur.
Could it be that commonsense has been forgotten and research has taken a wrong turn? Recently, genetically modified 'human' insulins have appeared in bewildering varieties. This has confused everybody. In the effort to make a right choice, the possible advantages of old-fashioned animal insulin, with its slower action and better warning of hypos, can be overlooked. With these new insulins, the threat of sudden hypos has increased rather than decreased, cutting away our safety net. When we recover from the distress of a sudden hypo, we wonder why nothing has been done to replace the blood sugar control system we lost when we became diabetic. It is high time that scientific research should concentrate on giving us back this valuable warning system instead of flooding the market with new 'designer' insulins of doubtful value. Dr. Laurence Gerlis has stated that there is not a shred of evidence to show that human insulin has any benefits over animal insulins.(10) Indeed, many thousands of us have suffered from its disadvantages. Commercial pressure seems to be the main reason for promoting these synthetic insulins. Perhaps this explains why information about animal insulin as a viable alternative has been suppressed and, worse still, why it has been taken off the market in many countries.
Of course it would be wonderful if a cure for diabetes could be found. In the meantime, however, a general problem in modern medicine has to be addressed, to allow for individual personal dynamics. For people with diabetes, this is especially true. An awareness of the many differences in treatment and dietary needs is crucial for good medicine and good health. Knowing this, patients and doctors must find out how to co-operate on equal terms. My hope for the future is that the capabilities and expertise of the patient may come to the surface, and that commonsense will rule, with balance close beside it on one side and informed choice on the other. We must become skilled jugglers, working with the blue carbohydrate and the red insulin balls before we can live successfully with our diabetes. Sadly, diabetic welfare can be threatened by commercial interests. The right to decide which treatment suits us best should not be negotiable. I shall end as I began, by reverting to the wisdom of Dr. Lawrence. The care team should provide the accompaniment but, as an intelligent diabetic, it is for me to play my own melody and to be in control.
© Copyright Beatrice Reid 2000
FOOTNOTES
1. R.D.Lawrence, Almost All About Diabetes, London: A Family Doctor Booklet, British Medical Association. P. 2.
2. ibid. P. 31.
3. Peter Sonksen, Dr. Charles Fox, Sue Judd, Diatetes at Your Fingertips, London: Class Publishing, Fourth Edition Reprinted 1999. P. 58.
4. ibid. P. 56.
5. Dr. Laurence Gerlis, report from AGM of IDDT, Birmingham, October 1999. P. 5.
6. ibid. P. 6.
7. Jenny Hirst, IDDT Newsletter No. 21, July 1999.
8. Report from AGM of IDDT, October 1999. P. 1.
9. Dr. Laurence Gerlis, ibid. P. 5.
10. ibid.
USEFUL ADDRESSES
Insulin
Dependent Diabetes Trust
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NN1 4XS
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Tel 01604 622837
Fax 01604 622838
e-mail
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Diabetes UK [formerly
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Telephone: 01 171 3231531
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