JDRF San Diego’s Chris Stiehl on Living with T1D for 54 Years

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Chris stiehl

The recent Google Hangout on Diabetes sparked what I thought was a great conversation about the status of research on diabetes today. The topics dealt primarily with type 1 diabetes, but there were implications for type 2 as well. We packed a lot into the one-hour Hangout, but there were so many things we didn’t get a chance to talk about that I wanted to write this blog to fill in those gaps.

I have had type 1 diabetes for 54 years. I have advocated for the stem cell agency and stem cell research for a decade, since supporting the campaign for Prop 71 in 2004 that created the California Institute for Regenerative Medicine (CIRM).

Primitive past
Life and care for type 1 diabetics has improved greatly over the past 5 decades. In 1961, when I was diagnosed, my father would take me to the hospital on Saturday morning to have my blood drawn. I would find out what my Saturday morning blood sugar level was on Tuesday afternoon, as if anyone could manage their diabetes that way. Later, we had test strips that relied on urine to measure blood sugar levels. Those levels were hours out of date and certainly did not offer a real time measurement but it was better than waiting 3 days for the result. My situation was complicated by the fact that I was partially color blind, like many men, so the color comparison from the strip to the vial was difficult to determine.

It’s very different today. We now have improved insulins, including human insulin. Researchers are investigating “smart” insulin that may be able to react to a patient’s blood sugar appropriately, rather than just in a predictable pattern. We have insulin pumps, which can be programmed to dose appropriately, even during sleep.

One of the problems decades ago was that Saturday morning blood sugars were always high, due to the “dawn” phenomenon; that’s when a person’s liver releases sugar into the blood stream a couple of hours before they awaken, during REM sleep, as a way of getting the body ready for the new day. This physiological response to the coming dawn was not understood in the early 1960s and so my parents were always questioning me, asking if I was cheating on my diet because my blood sugars were always high in the tests. Today, the pumps we use can be adjusted to increase the insulin levels while the patient sleeps.  

Measurable improvements
Measuring blood sugar levels has improved greatly as well. These days continuous glucose meters are available that can measure your blood sugar level every 5 minutes, so treatment can be more immediate and appropriate. Research is underway to marry these two technologies in an “artificial pancreas.” One day soon, we may be able to trust (with human monitoring) a medical device to deal with much of the day-to-day treatment of diabetes.

New advances
The CIRM-funded research at ViaCyte is very exciting because it will enable patients to receive functioning beta cells inside their body (the cells that measure and react to blood sugar levels in a non-diabetic). The technology is fascinating. Human trials will begin soon on this solution.

A little over a year ago I was given insulin-producing beta cells from an organ donor in the lining of my stomach. I was the first human to have this procedure done. The doctors at the University of California San Francisco (UCSF) knew me and knew that I was a compliant patient because they had given me a kidney transplant in 2008 (my son donated a kidney to me). I was already on immuno-suppressant drugs and had adjusted well to the protocol. The beta cells were implanted into my stomach lining via a procedure very similar to an endoscopy. The cells functioned for about 8 weeks. They eventually died, since the cells starve from not connecting up to my blood vessels and because I was not given enough cells to start with. The research had been conducted on pigs prior to my procedure. Some of the pigs had died due to having too many cells implanted, so the doctors were reluctant to put too many into me. We may try again, with more cells and with me taking a drug that has been developed from cancer research to promote blood vessel formation.

This collaboration between researchers working on different diseases is one of the hallmarks of CIRM research. If this procedure can be perfected, any type 1 patient who gets a kidney transplant can potentially be cured using a simple endoscopic procedure lasting about 30 minutes. Even though my procedure did not work as we had hoped, we were able to bypass 10 years of research on dogs and monkeys, so it was worth the effort, I believe. While the cells were working, there were fewer highs and lows in my blood sugar. The readings were constant. I did not worry about having a low blood sugar during my sleep (the worry of many type 1 patients and their caregivers).  

Profile of a survivor
Research is being conducted at the Joslin Diabetes Center in Boston on long-term diabetics like me. The people who have survived 50 years or more of type 1 diabetes have several things in common. These people all have outgoing personalities; they build networks of friends easily, which creates a healthy support network for them. They tend to be very intelligent with IQs over 120. The mental abilities are adaptive because of the calculations they need to do constantly (when was the last time I ate? How much insulin is left in my pump? What about the pump battery, etc.). These survivors are all active (they exercise). The Joslin research has shown that people with poor attitudes about their diabetes tend to die early. Of the 850 survivors studied so far (there are only 3,000 of us who have lived with type 1 diabetes for 50 years or more), very few have Alzheimer’s or dementia, despite having had low blood sugars through the years. Conventional wisdom always was that since low blood sugars are know to destroy brain cells, perhaps the Joslin survivors would have more brain issues. We tend to have greater bone density than non-diabetics our age. These results are being investigated to understand why these results are there for the survivors.

Looking to the future
This discussion is just a taste of what is going on in diabetes research today. We are now looking at clinical trails with humans, rather than the mice that have been studied for decades. For me, that is a tremendous change in the nature of the research. CIRM is funding research in diabetes that will greatly improve the lives of diabetics, and greatly reduce the costs of diabetes to the public, as well as reducing the lost productivity from these patients. The future looks very bright for diabetes treatment and a cure. I thank CIRM for inviting me to participate in this program and to write this blog entry.

Chris Stiehl
President, StiehlWorks