Yeah, But….But…They’re on Immunosuppression…..Let’s Just Take a Look….

butWhen it comes to research, there are so many occurrences simultaneously that it’s very difficult, at times, to keep one’s hand on the pulse of so much activity. When it comes to the notion of research in our diabetes world, there is something I have noticed that I want to address. It’s this notion of the immediate discounting of research projects because the patient is on some sort of immunosuppression regime. I get it. More than that, so do the research centers.

Let’s be clear, this is about diabetes research as a whole, and not specifically of the work being done at any one place. I have a very unique perspective because of my constant involvement in the research world, and when it comes to that, I have often shared my thoughts and surely welcome yours.*

The people who undergo clinical trials are, usually, in a very dire position with their diabetes. It’s not as if there is a protocol in place and volunteers are merely chosen because they live with type one diabetes; there is more consideration than just that point. In many cases, due to severe glycemic reactions, these patients are in dire need of intervention. For whatever the reason, people seem to believe that patients in these protocols are just like their loved ones at home but are now on immunosuppression. I know this because I constantly see the comment from the uninformed, “Yeah, but they are on immunosuppression drugs” as if to discount what is going on.

Hypoglycemia unawareness is a very dangerous complication to having diabetes and usually required in many of the diabetes protocols to be involved in clinical trials; dealing with having something placed inside the patient’s body. This is not a phenomena of just having a low blood sugar; hypoglycemia unawareness stops people from functioning in a normal surrounding.  Without warning, to collapse from a low blood sugar…….again, WITHOUT WARNING.  It can make driving, functioning, and in many cases from even living alone extremely difficult. It’s very serious. So is severe hyperglycemia allowing for almost a constant threat of DKA.  Imagine the impact of having high blood sugar and keytones almost always.

When applying for a clinical trial these patients, after an exhausting process, have come to the conclusion that living with the immunosuppression drugs outweighs the quality of life they are presently living. Immunosuppression drugs prevent the body from rejecting anything not recognized ‘as self’ and usually not used in children unless their life is in jeopardy.  Understanding that point; if someone needed a kidney transplant, they would be on immunosuppression drugs; a heart transplant results in the same regime and yet, no one states, “ah yes but they are on immunosuppression drugs” because the procedure outweighs where the patient’s physical status is at the time of the transplant.

All things Islet Cell come into mind here. Donated, porcine, stem-cell derived, implantable device, and other means of placing cells in a patient’s body and functioning is an amazing progression to the end game being sought.  For the present, it’s in patients that need a better quality of life than what they have, living with this diabetes complication every day. And it’s just that, a severe diabetes complication.

Now in as much as these protocols occurring around the world are what they are; they are also MAJOR STEPS in every research lab’s Holy Grail. To perfect the process and create a protocol that someday CAN be used in everyone with diabetes, without anything else that must be administered. Of course that is what each lab out there searches continuously to achieve.

I have shared with you all a million times that my regret is that I have been at this for over 23 years. I have learned a few things. I lived in a world before the everyday use of pumps, pork insulin (although people diagnosed after 2005 might be more familiar with the word ‘porcine’ than ‘pork’ or ‘pig’—-oh we have come so far), and when the letters CGM were mere letters that followed BFL. There was a time this world emphatically believed that islet cells COULD NOT EVER function in another human being. IT WOULD NEVER WORK under ANY circumstances was the belief. My question, of late, has always been with so many labs doing SO MUCH regarding the use of Islet Cells; why is not every penny of research money in this world going to perfect the hurdles to MAKE work what we know CAN work?

So the next time you find yourself saying the rhetoric phrase of, “Yeah but they are on immunosuppression drugs……..” perhaps we might all be better served to ask, “Okay, it needs to work for my child to use it, but it does work in some, how can I help to perfect it?”  Of course this is just my opinion and as always, I surely welcome yours.

If it was said that one day we will walk on the moon, and we did; is it not just as important for us as parents to say, one day my child will walk without diabetes.  As it stands now in our diabetes world, we have one small step for man……..it’s the next large leap for mankind that needs all of our attention.

I am a DiabetesDad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

* My disclaimer is, as always, that I have chosen to be an employee of the Diabetes Research Institute Foundation which supports the work of the Diabetes Research Institute at the University of Miami Miller School of Medicine.

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