Tuesday, April 21, 2015

Clinical Trials - If You Are Eligible, Do It

From time to time, I check out clinical trials that might be of benefit to those with Type 1 diabetes. If I find one that intrigues me, I check out the criteria for participants. Unfortunately, I do not qualify for the vast majority of the ones that interest me. For two reasons:
   1) I'm in the wrong part of the country.
   2) I've been a Type 1 diabetic for too long.
   The first reason is one I can accept easily enough. Because maybe the study can eventually move to my neck of the woods. The second reason stabs me like a knife. Because there is nothing that I can do to change that. I can't go back in time. And I resent being excluded from something that could very well physically improve or change my life. All because I've been a Type 1 diabetic for almost 28 years. And I know many fellow Type 1s are in the same boat as myself.
   A lot of the trials require newly diagnosed diabetics. For example, a close-by study by Sanford Research in Sioux Falls, SD is trying to get to the heart of the problem - the faulty immune system. And I started frothing at the mouth when I saw that. But, the requirement was you had to have been diagnosed within in the last three months. I know a lot of Type 1 diabetics. And there is only one that fits that bill. That diabetic fits the requirement of the length of the disease, but not of the age, which is 18-45. So, none of us can participate. And it is discouraging.  
   The people in charge of the studies always say that people who have Type 1 for extended periods of time will eventually be able to participate. But, that can take years. The trial has to go through phases. Money has to be raised for each phase. The federal government has to give its stamp of approval. How many of the unfortunate diabetics will be left untouched by complications?
   I participated in a study about seven years ago. My endo asked me when he found that I fit all of the criteria. Unfortunately, it was not for a cure. It was for a basal insulin called SIBA (also called Tresiba). And it works so much better than Lantus. I was in the study for a year and I was under better control because of the SIBA (and also because I had required weekly visits with my endo). Not only was I under better control, but all of my insulin was free! And I got paid for participating! It was a dream come true! 
   I asked my last endo (about six months ago) if I could get a prescription for SIBA and he said that was not possible. The federal government has frozen it until studies can determine it will not cause cardiovascular problems. The conspiracy alarms started ringing in my head when I heard that.
   Anyway, I will be looking for additional clinical trials that I can participate in and hopefully will find some that give promise for better control or a cure and I will pass that information on to you.

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