THE EVOLUTION OF THE DIABETIC INDUSTRY

I never knew my grandfather. He died in 1914 at the age of thirty-nine of what is now called Juvenile onset diabetes (Type 1). This was ten years before I was born.
In 1934, at the same age, my father was diagnosed with the same disease. I was nine years old at the time. The family doctor assured him that if he followed a rigid diet, (which allowed honey) he might survive. Obviously my father soon discovered that insulin was by now being used as a treatment for Diabetes mellitus. After talking to a diabetic doctor who knew a lot about diabetes he procured what he needed to carry on with his life as a diabetic. My sister, mother, and I watched as he set up his equipment in the dressing room next to the bathroom There was a tray container for boiling water to sterilize the 25 gage needles and syringe before every injection. At that time there was only one type of insulin which he took every morning. That was about it for supplies – none of the testing or frills that are available today. My mother followed detailed instructions on what he could eat or not eat and I remember helping with weighing or measuring his food. I especially recall her baking these horrible bran muffins with no sugar or additives. He was the only one that could stomach them. The family began taking evening walks together in various areas within driving distance where we often shopped for food we liked. He seemed to be happy with the fact that the rest of us could still enjoy eating his forbidden food. It was a tough struggle for a father in those days – raising a family through a depression, a son and daughter in the war. This, living in the fast lane during the roaring twenties, and the diabetes finally caught up with him in 1955 when he died of a heart attack a week after his sixtieth birthday.

I got married toward the end of my three and a half years of military service, in 1945. My first son was born in January, 1946 and my second a year later. My daughter, Sharon, arrived in August, 1951, At about this same time, because of a loosely knit cadre of capitalists, the ‘Diabetic Industry’ was both inadvertently and inchoately created,
When my youngest son, DJ, was about 13 months old (in March, 1948) my wife and I noticed that he was becoming listless, developing a bad facial rash, and urinating excessively. Even with a history of Type 1 diabetes in the family, our family doctor , just a month previously, had not tested for this. She stated that “babies never get diabetes”. When we could not arouse our son on March 19, my wife rushed him to the Emergency Room at our local hospital while I took a urine sample to my fathers’ office where our test indicated extremely high blood sugar. DJ recovered rapidly and we brought him home in eight days to start him on a life long routine of caring for this insidious, debilitating disease. At the time the cost of supplies seemed reasonable. For $15.00 we procured his basic diabetic requirements: protamin and zinc crystal insulin, 26 gage needles, 3 syringes, miscellaneous stuff. At this point our son became a contributor to the diabetic industry. Unfortunately this was also about the time when producing a new for-profit industry instead of an altruistic group dedicated to putting all money available into finding a cure for this new, but “manageable” disease seemed to be the only solution available. Establishing money as our “bottom line” for success leaves little room for humanitarianism to enter the equation.
In my search for answers I came up with some interesting statistics on the relationship between the money spent on basic research expended on finding an actual cure for diabetes and on the exploding costs of treating it, The only direct correlation I could find was in a study made by the government of Great Britain in 2010. This study indicated that out of a total cost for drugs and supplies of 600 million pounds the total cost of government “research into research into diabetes” amounted to only 50 million pounds, or 8.3 %. When the total cost of 9 billion pounds for treatment for diabetes and its related complications is added into total, the figure is about one half of one per cent devoted to research. Although there are some very worthwhile research projects going on both in the United States and Worldwide the half per-cent of the total for research seemed consistent with what I discovered elsewhere.
Both of my sons and I have endured the hardships of diabetes for many years now and I have become very cynical about the relatively small amount of money that has been devoted to an actual cure for diabetes.
This research, from my own experience, is not even to mention the extreme waste of perefectly good high priced cloned insulin and sharps (needles and lancets) necessitated by “Rules” put out by the manufacturers limiting the use of cloned insulin to 28 days after the first use of a 300 ml vial, the lack of a recycling program for the expensive pen needles, and the strict admonition by all to use sharps only ONE time. Adhering to this one rule would cost me over 500 dollars per year more. This is after my private insurance and Medicare have absorbed their part of the cost.
The Diabetic Industry is a true “for profit” industry and as such a cure will be hard to come by. Only time will tell.

Views: 342

Comment by Donald H. Jones on August 31, 2012 at 6:43pm

This expository won Best of Division (prose) for Nevada County Fair (CA).

Comment by karebear1966 on September 1, 2012 at 8:41am

Wow! Thank you for sharing.I found this to be very interesting.

Comment by Terrie on September 1, 2012 at 11:25am

Unfortunately, too many agree with you. Too much of the money goes to administrative costs and fundraising, etc. instead of to research where
it is meant to go.

Thank heavens DJ has smart Parents and was saved in time to live his Life.

Thank you for telling us about some of your life experiences and your well noted concerns.

Comment by NatalieHodge on September 1, 2012 at 5:23pm

very well thought out post!! MY grandfather too had diabetes, probably lada and lived to the ripe old age of 87... I remember his sugar free jello at holidays... I am healthy ( well that's debatable, ha ha ) but a year ago my 12 year old daughter was diagnosed type one. We are raking out a fortune cash pay for her supplies, I will just contract to the kinds of numbers you put together... 300$ a month for pods, 200$ a month for strips, getting ready to pay 1K for dexom and then another 300$ monthly for those sensors... plus 35$ a month for apidra ( which is with my free gift card) But if she lives even a single day longer than my grandfather, it will be worth it for me. I am fortunate to be able to afford it, ( barely) and I wish she could have a cure, but right now, the artificial pancreas technology and research is the closest she may get for the next ten years... I did buy stock in both omnipod and dexcom, as I figure perhaps I can offset the costs as a shareholder... I do believe in both companies... I think they will make her like easier and help her maintain control... what does everyone else think??

Comment by Betty J on September 1, 2012 at 6:51pm

I too am cynical, I agree with what you said the Diabetes field is a for profit business. I have lived with this disease for over 50 years and I guess my enthusiasm has worn me down. But I don't voice how I feel so others won't inherit my feelings...they have to find out in their time. When I order my supplies the supply companies are always concerned why I don't order sharps...I reuse mine and let them know.

Comment by BriannaM on September 1, 2012 at 8:48pm

Unfortunately that seems to be the case. Every new diagnosed person told that the ever elusive "cure" is only 5 yrs. away. Unfortunately we are a part of the health care industry, so instead of a patient we often become another number. It's easy to sit and say this person has disease A or B and because they can't follow the doc.'s orders their non-compliant. The whole person isn't addressed; what they can afford, their daily lifestyle, fears, dreams, etc. all play into how a person is going to take care of themselves. We have become the "customer" of an "industry" just like buying hamburgers from McDonald's. I think it's more disappointing to be told a "cure" is 5 yrs. in coming than to be told the truth. One day you wake up and realize that in my case it's been 17 yrs. and they don't seem to be any closer to a cure, just more costly "maintenance" procedures.

Comment by Clare on September 2, 2012 at 4:45am

I was diagnosed in 1975 well before blood glucose meters, pumps, cgm's etc, but well after we had stopped having to boil our syringes. The single biggest development in diabetes care over the last almost century is the disposible syringe. The speaks a lot to the diabetic industry. We are a "herd" and the most important thing to the diabetic industry is to "maintain the herd". Not cure the herd because they would all be out of jobs and lose billions of dollars. I am very cynical about it now but I do appreciate not having to bring in a 24 hour urine specimin with me to my clinic appointments anymore, a log book is a whole lot easier. I was never told a "cure" was 5 years away, my parents were told that getting diabetes at 14 would shorten my expected lifespan by 1/3 and if that were the case I should already be dead. What galls me is things like computers, cell phones, ipods, and ipads. 40 years ago a computer took up an entire room, now it can fit on the tip of your finger. The first insulin pump was massive the size of a backpack but the newest pump while somewhat smaller still requires a tube to carry the insulin from the pump to your body. Even the Omnipod while not requiring a tube still has issues. And everything comes with a huge cost. It's disheartening sometimes. But the money is in "maintaining the herd".

Comment by Doris D on September 2, 2012 at 7:07am

We owe our lines to ur dad & ur son. I apperacete thm GREATLY for when I was diagnosed in the 70's for all that they done. It even goes to urg-father. I have a family history of D myself and have lost quite a few family member's the invension of insulin looking at their pucs really bring it into focus for me

Comment by pancreaswanted on September 2, 2012 at 7:13am

thanks os much for sharing your story, really interesting to read.
i am under no illusions that we will ever have a cure either.

Comment by Steve R on September 2, 2012 at 7:45am

I keep thinking with a cure must only be about 5 years away, with all the good research going on now. I've been type 1 since 1966. Where did that magic number "5" come from? When was it first used? I think it was just used as a means to offer hope to new patients and their families. A new diagnosis of type 1 is difficult thing to deal with.

When I was a teenager, I stumbled across a book that stated that my life expectancy was about 53. I outlived that number, and I don't think it's because I'm on the high end of the life expectancy curve. It's because we have better understanding and better means to take care of type 1.

There's a number of confusing issues to me, including cost of diabetes, health insurance, capitalism, value of life. Type 1 and its side effects are expensive to maintain. As I move toward retirement years, I hope that Medicare recipients are not reduced to receiving a check from the US government to help purchase private health insurance. I hope I'm wrong, but I get the distinct feeling that I will continue to be in the very high risk insurance pool and, therefore, uninsurable.

Happy Labor Day weekend!!

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