The end of a year and the marker of a decade are a time to reflect. None of the insulins I inject were on the market ten years ago. I combine Lantus in the morning and Levemir at night to get basal insulin pretty close to what my islets would have given me. I can inject Novolog when I eat (rather than prior to the meal when my meal insulin was Regular), lowering social anxiety (“Excuse me, can you tell me when exactly we will eat? I have a metabolic disease.”) Best of all I can measure my blood sugar as often as I want, and quickly adjust insulin as needed. In short, I have the tools I need to manage my diabetes and lead a pretty healthy life.
And I am lucky because I don’t seem innately susceptible to vascular disease. Kidneys work fine and my retinas have been stable for years. In addition to good glucose control from the injected insulin, the oral pharmaceuticals do their part. My ACE inhibitor helps my kidneys, and hydrochlorothiazide keeps my blood pressure low. My statin keeps my blood lipids in line. In fact, there is no reason I can’t lead a close to normal life, in both length and quality.
Years ago I read that a senior medical researcher was asked how best to assure a long life. He thought for a moment and said “develop a chronic disease early then care for it well.”
I am grateful because the diabetes has shaped my career. My reputation on Wall Street (I was a medical investment analyst) was sealed by my report, “Prospects in Diabetes Therapy,” in 1980. Wall Street led to venture capital and the entrepreneurial life. So it was 30 years ago that I decided that the closest to a cure I would live to see would be islet transplantation. And 30 years later not only do I believe it still, I pursue it in my medical research.
I am grateful that in 2001 funding for our research evaporated. With no alternative, our little research group (thanks Rick and Randy!) took our islet transplant skills and began to apply them to other areas of cell therapy. It turned out that we are good at cell therapy: our technologies dominate the autologous cell market. The royalties from those products make it possible to work again on islet cell therapy with some deliberation. And what we have learned from working on stem cells and thrombocytes has come around to expanding the options for islet therapy.
I am grateful for learning so much about diabetes. It is both a well-understood disease, including an accurate model of metabolism, and deeply mysterious. I think the root causes of type 1 are baffling. Why do islets light up and burn out and die? The root causes of type 2 are equally mysterious. Is the standard idea that cells “resist” insulin correct? Or is insulin insensitivity a healthy adaptation that somehow goes wrong? I think the latter, and have some ideas on how to fix it. I look forward to working on that once the Islet Sheet project is over the hump.
I am most grateful that this is the year that we will find out if the Islet Sheet can correct blood sugars in type 1 diabetics. I had feared that the lack of funding would forever keep us in the dark. Large animal studies are expensive, and there is no cheap substitute. Thanks to the Hanuman Medical Foundation we will know, probably in 2010. I cannot be sure that it will work but I think it will, I hope it will, and we will have the answer soon.
Life is good; hope is real.
Thanks for keeping us updated! Have a great year -for the sake of all of us-!
It seems that we always see things from opposing perspectives, and this subject is no exception.
I was diagnosed with type 1 diabetes in 1966, and so I spent the first 20 years of my ‘adventure’ with diabetes without home blood sugar meters. This meant that ’strict control’ was simply impossible, and the medical profession recognized this. All we had to measure our metabolic status was home urine sugar devices, which measured the amount of water we had drunk as much as the amount of sugar in the body. The changing renal glucose threshold also constantly changed the ratio between the amount of glucose in the blood and that which was registered in the urine. The urine sugar test only measured the accumulated sugar since the last urination and would of course be higher the less frequently the patient was urinating. So testing urine sugar amounted to an empty ritual to keep the patient busy, make the doctors seem less helpless, and create a false sense of efficacy in diabetics. We were forbidden to take insulin any more often than once a day, in the morning, since bolusing insulin was thought simply to generate more chaos. Instead, blood sugar ‘control’ consisted of adjusting the daily insulin dose up or down a few units the following morning according to the previous day’s results.
Every few years I would report in to the Joslin’s Clinic for an actual blood glucose determination, and the result was usually around 240. I expressed concern to one of the staff physicians about this, and he reassured me that that was not all that high, since the average among patients reporting into the clinic was around 280. I smile now when I hear of patients in a state of panic over a single result above 200.
But, although blood sugar control was poor, my life then was excellent. I truly felt and functioned like a normal person. All I had to do was take a single injection in the morning — at the same time as it was normal for people to set aside some private time for morning ablutions — and then, beyond avoiding sweets, that was the last time I was bothered with diabetes for the rest of the day, since the pointless ritual of urine sugar testing could safely be neglected. Hypoglycemia was rare, since I could not deliberately hug the razor’s edge of unconsciousness all day and all night, the way we are supposed to do today.
But then came the home blood sugar meter, the DCCT, and suddenly medical journals were filled with medical sadism about ‘aggressive management,’ ’strict control,’ and ‘intense interventions.’ My life rapidly degenerated into constant blood sugar testing, constant injecting and re-injecting of insulin, frequent and often catastrophic hypoglycemic episodes, carbohydrate counting, rituals of shaming and blaming over HbA1c values, and I was essentially transformed from a normal person who had to take one injection in the morning between showering and shaving into a medicalized freak burdened with a thousand gadgets, measurements, medical interventions, and self-torments a day, every day, forever.
So has there really been any progress in diabetology? All medical interventions are rated for their costs and benefits in terms of QUALYs, that is, ‘quality adjusted life years.’ For example, a year of life for a normal, productive, healthy person is set at 1.0, while a life so burdened with medical interventions that it is only worth half a normal life is set at 0.5. I suspect that in my own case and in that of many other diabetics, especially those with labile type 1 diabetes, my quality of life, which was 0.8 prior to the home glucose meter and strict control, has fallen by 50% to 0.4 after that regimen became possible and required. If you add the QUALYs I may have gained from strict blood sugar control postponing the lethal complications and their reduction in life quality prior to death, but subtract the QUALYs I have lost by intensive management of the disease, I suspect that the net impact of the home glucose meter has been profoundly negative. Interestingly, beyond a single letter to the editor of the Lancet in 1994 entitled ‘Good Control or Good Life?’ I have never seen any indication that the medical profession is aware of this problem.