Letters to the Editor

Nov 1, 1997

Thanks a Thousand

I was excited to hear that I had won the $1000 raffle offered by Diabetes Health during the 1997 American Association of Diabetes Educators (AADE) annual meeting in Denver, Colorado. Diabetes Health is a thorough information resource not only for the diabetic patient, but also for anyone interested in the latest on diabetes. Sugarless Humor is a collectors item that I look forward to every issue. I encourage all interested parties to attend the AADE's annual meetings for great information, terrific networking and the chance to become a winner. Thank you.

Tywonia Giles, RN, MSN, CDE
Camden, Miss.

Money Talks, Ethics Walk

I'm reading your information about Lilly's plans for Iletin I insulin with great worries. I have some type 1 patients who have been on Lilly's animal insulins for 30 to 50 years who absolutely refuse to change.

In 1923, Lilly was one of the first companies to profit from the discovery of insulin by Banting and Best. These Nobel prize winners donated their research voluntarily to Toronto University with the desire that diabetic patients around the world would benefit from insulin.

After 75 years of making a profit, they're discontinuing the production of Iletin I to get higher profits from gene technology (human insulin) and discriminating against hundreds of thousands of diabetic patients who experience adverse effects when using human insulins.

Lilly was also the first company in the world to ask the FDA to include a warning on the labeling of human insulin because of problems with hypoglycemia - after the insulin had been marketed already. This warning is now compulsory for all human insulin distributors in the United States and it must be printed in bold letters.

Lilly's track record has been great. What a shame if profit is now more important than ethics!

Arthur Teuscher, MD
Diabetes Center Lindenhof
Berne, Switzerland

Equal Opportunity for Insulins

Congratulations on your article about human versus animal insulins. However, you do not state that there is another very good reason why animal insulins should not be discontinued. There has never been evidence to support the widespread use of human insulin, because sufficiently large trials were not carried out to show that it has benefits over animal insulin. In addition, if only five to 10 percent of the diabetic community experience problems with human insulins, small trials or studies do not have the power to detect the problems that many patients know exist.

Research published in 1980 gave human insulin the OK, and by 1982 it was licensed and being marketed. In those two years it was not possible to have carried out all the necessary trials in the various categories of people with diabetes - the young, old, pregnant and those with complications. Considering that human insulin was the first genetically produced drug to be used on mankind, one would think greater care would have been taken in requiring large-scale trials.

I must also note that the British Diabetic Association's statement failed to point out that since April 1997 CP Pharmaceuticals, a small British company, has expanded its range of animal insulins to include both beef and pork insulins in vials and cartridges. CP has listened to patients, unlike the major companies.

We need not only patients, but doctors to support us and ensure that the minority do not suffer because they are denied the insulin that suits them best.

This minority does exist and should not be ignored.

Jenny Hirst
Insulin Dependent Diabetes Trust
Northampton, England

How Can I Help To Get Iletin Back?

I couldn't agree with you more on your feeling that pulling Iletin I insulin (beef/pork) is wrong. What can we do to let our country know that we want insulin choices like England and Canada have?

How can I help animal insulins remain on the market for those of us who wish to have a choice in the United States?

Marilyn R. Schnabl Guenther
Lakeport, Calif.

Editors' Reply:

Right now we at Diabetes Health know of no surefire way to ensure that current insulin choices remain available. Lilly can be contacted at (800) 545-5979, and requests to continue Iletin I production will be filed.

School Administrators Get An "F" in Common Sense

I've had type 1 diabetes for 41 years. When I was in school, my parents made sure each of my teachers knew about my diabetes and what to do in case of an insulin reaction. Back in those dinosaur days, we didn't have glucose tablets - just plain sugar cubes.

I am not surprised by what I read in the latest newsletter about schools keeping students with diabetes from using glucose tablets freely. Our school system administrators seem to have lost all common sense.

Although neither of my children has diabetes, my youngest daughter has epilepsy. Three years ago when she was in high school we had the same fight over seizure medication. The school wanted her to rely on a secretary to administer the medication to her. I never did see why a secretary had the credentials to administer this kind of medication. If the secretary happened to be busy or away from the desk, my daughter would miss her medication and very likely have a seizure.

I am so glad my children are out of school, and my heart goes out to those parents dealing with such incredibly stupid people!

Marilyn W. Holland

Turn On, Tune In, Drop a Glucose Tablet?

As a former teacher, educational advocate and due process hearing officer (as well as a type 1 diabetic for 33 years) I am appalled by the difficulties diabetic students and their parents are encountering in the use of glucose tablets. The fact that schools are daring to brand these students as drug dealers is even more disturbing.

These schools appear to give very little thought to dispensing prescribed drugs (like Ritalin and Prozac) based on subjective psychiatric diagnosis without insuring that medical and educational components have been made part of the treatment plan. At the same time, they are deciding that glucose tablets are a drug and must be controlled. We should be seriously concerned that people of this level of "competence" are administering the education of our children!

The diagnosis of diabetes comes with a comprehensive treatment plan that apparently is very frightening to school personnel. I cannot understand why these same school personnel are willing participants in the use of controlled substances such as Ritalin without the benefit of a comprehensive treatment plan for what may very likely be an educational problem rather than a medical one. Parents, grandparents, physicians, educators and taxpayers take note!

In the event that Eric Carr's family (and others) cannot clear the disciplinary notations from their children's school records, they should exercise their rights under the Federal Student Records Act. The Act allows them to submit their side of the situation. Periodic monitoring should be done of those records to ensure that the information is not deleted.

Name Withheld Upon Request
The Borderline Bard

In the letters column of your June '97 issue you printed a few lines of light verse I wrote about a young diabetic. So, here I go again.

It doesn't matter when you dine
And have that extra glass of wine;
What you have is quite benign,
Your disease is borderline.

If someone gives you that advice
He's trying hard to just be nice.
Perhaps one day he'll think it kind
To say you're just a little blind.

He'll say your painful legs and feet
Do not depend on what you eat.
So don't despair, you're doing fine.
Your disease is borderline.

And what's a missing toe or two?
The foot is covered by the shoe.
If carefree living is your goal
Forget about that tight control.

He'll say some candy now and then
May put your sugar up again.
But if you're groggy, just recline.
Your disease is borderline.

But sooner or later you'll get the bill.
It's now you need a doctor who will
With honest words predict your fate,
And scare you silly before it's too late.

Walter Winn
Arlington, Va.

A Mixed Message?

As a diabetes educator I question whether we are giving a mixed message to the young type 1 patients that are being newly diagnosed. It has been proven with the DCCT trials that keeping blood sugars as close to normal as possible decreases the chances of complications. The American Dietary Association has stated that the body can't tell table sugar from fruit or potatoes. The physician tells the families to let the child eat as he wants so he can grow normally and he, the physician, will adjust the insulin dose.

What I have seen with this kind of information is that the families and patient are not learning the correct method of eating in order to keep their blood sugars within the newly established guidelines of no higher than 140 and between 70-110. We are seeing patients in their 20's that are blind or in renal failure. They have related that they were never told that they had to control what they ate.

I recently met a man who had been diagnosed with type 1 diabetes 60 years ago. He had no known complications! When asked how he had managed this, he replied that he owed it to his parents who taught him how to measure his food and watch what he ate as early as 5 years of age. He had continued this through college and his adult years.

Obviously it was valuable information. Shouldn't we, as the caregivers, at least give this information to these young, vulnerable patients so that they can choose the best way to take care of their health and ensure a healthier future?

Shirley Vining, RN, CDE
Winter Park, Fla.

No Assurance From Insurance

This is an excerpt from a reader's letter to her Congressman concerning insurance coverage for diabetes.

I was diagnosed with type 1 diabetes in December 1992, my senior year of college. Thankfully, I received outstanding medical care and extensive diabetes education and support. Without the emotional support and knowledge I was given to help me better understand my chronic disease, I would not be where I am today - still in good health and free of complications that plague many diabetics. However, it has been only five years, and I still have a long road ahead of me.

I want to continue on this path of healthy living, but often I feel thwarted in my efforts, through no fault of my own.

Changes desperately need to occur in insurance coverage for diabetics, like myself, who want to live long, healthy lives. We can only do so with your help in modifying the current insurance reimbursement system.

My primary concern is that medical professionals consistently and fervently preach the importance of education and emotional support as keys to healthy living and preventing diabetes complications. But very few insurance companies reimburse for anything but primary care physician appointments.

I repeatedly read in diabetes research and literature that to achieve optimal control of my BGs, I must see a "team of health care providers." This team should include a primary doctor, a diabetes nurse educator, a dietitian, an exercise physiologist and a psychologist. Each should be seen at least once a year, if not more.

There are multiple reasons for this. Diabetes can be a very isolating disease and it can often exacerbate the stress of everyday life. I often yearn for that additional emotional support and understanding that only a nurse educator or psychologist can provide. How many other 26-year-olds have to prick their finger six to eight times a day to monitor their blood glucose levels; inject their stomach and arms four to six times a day with insulin, which often causes bruising; and live with the constant fear and threat that one day they may lose their eyesight, suffer from kidney failure or die of a heart attack at age 35 - even when they did everything they were "supposed" to do to take care of themselves?

Wouldn't you need some emotional support too?

Additional diabetes education and support can be incredibly beneficial. A nurse educator might help me modify my method of injection to reduce the bruising; a dietitian might help me modify my meal plan for the days I don't have time to exercise; a psychologist might teach me stress management techniques to enable me to reduce my anxiety and help me find other ways of coping besides overeating.

You see, the idea of the "health care team" sounds wonderful in theory, but in reality, many of us just don't have the financial resources to pay for these appointments, which can range from 60 to 140 dollars a session. Therefore, I just do without. As a result, during particularly stressful times in my life, my diabetes control suffers and the fears and anxieties about one day getting one of those dreadful complications become even more real.

Hopefully, once we can convince you of the dire need to have every state offer insurance coverage for diabetes education and mental health services, we can persuade you to be open to the idea of insurance coverage for alternative therapy methods as well. This would also aid in the prevention of devastating and costly diabetes complications.

In sum, I urge you to begin to think more about the long-term effects of this disease and focus on PREVENTION. Think of the savings that would be possible if you invested in our mental and physical health today rather than 20 years from now. Many complications could be reduced, if not completely avoided, if we received all of the proper care, education and support that we needed.

Please help me and all of us who desperately want to give ourselves the best care possible in our efforts to live long, healthy lives. Don't we all - rich and poor, young and old, chronically ill and healthy deserve a fair chance at a long, healthy and fulfilling life?!

Jacqueline E. Stinehart
Brookline, Mass.

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