Schulze Diabetes Institute – Islet Cell Transplants

Last Tuesday I attended a Diabetes Symposium put on by the Richard M. Schulze Family Foundation.

Richard Schulze, a Minneapolis area native, is the founder of Best Buy.  His daughter lives with type 1 diabetes.  In 2008 he and his foundation donated $40 Million dollars to the University of Minnesota (pioneers in diabetes), specifically for type 1 diabetes research.  The University has renamed its Diabetes Institute for Immunology and Transplantation to the Schulze Diabetes Institute.

Picture of a newsletter from 5/2010 featuring Kathy White's story
Dr. Bernard Hering & Kathy White

The symposium was held to help raise awareness of the work being done at the Schulze Diabetes Institute, and to educate people about islet cell transplants.  It was held at the Best Buy corporate headquarters.  Their auditorium was filled beyond capacity, and there were people watching the event on TV’s in the overflow areas.

We heard from Mr. Schulze himself, Dr.  Hering, as well as Nancy JS Tellor (executive director of the foundation) before the panelists were brought out. Jeff Passolt, a local news anchor in the Twin Cities who also lives with type 1 diabetes, facilitated the discussion.

We heard from each of the panelists about what life was like before the transplant, and what life is like now.  All of them shared hypoglycemia unawareness, which means they could not tell when their blood sugar was dropping too low.  It is a devastating complication of type 1 diabetes.   It is a show stopper.  Life is no longer safe.

Imagine having a perfectly coherent conversation one second, and being unconscious and on the way to the ground the next.  Without warning, without symptoms.   Another scenario is that you go from being in perfect control of yourself to losing all control of your thoughts and actions.  I’m not sure which is worse or more dangerous.   They are both terrifying to think about.

Lisa, one of the panelists, talked about someone always watching her to tell her when she’s having a low.  Can you imagine that?  Can you imagine having a babysitter all of the time?  And how do you react when someone asks if you are low?

Melissa said that you don’t realize how sick you are, and how disruptive it is, until you are better.  Christine talked of the freedom from the HUGE ramifications of diabetes.  Sandra talked about her husband not worrying at bedtime anymore.

Each and every one of them said they would do it all over again.   Without hesitation they all agreed that the side effects of the immunosuppressive drugs are far easier to live with than hypoglycemic unawareness.  Without hesitation.

Panelists at the 2011 Richard M. Schulze Family Foundation Diabetes Symposium
Panelists at the Diabetes Symposium

For all of the panelists, an islet cell transplant fixed a really difficult problem for them.

It is important to understand that this, while incredible, is still a very small step in the big picture of a cure for diabetes.

All of the recipients are on immunosuppressive medications, though the side effects are much less drastic than we typically think.  It is still a trade-off.

Kathy today, almost four years post-transplant, takes a small amount of insulin each day (which maintains almost perfect blood sugars for her, exercise and all).  She’s not sure if it is from the stress of the anti-rejection drugs, or if the islet cells may be weakening.  Nobody knows the answers to these sorts of questions yet.  Might everyone end up back on insulin after a while?  Maybe.  If it were me, and if I had to take a little bit of insulin each day to maintain perfect blood sugars, that’s heads and shoulders above what I’m doing now.

Again, this is a small step in the big picture.  But all of these people have their lives back, and that is a huge step, the only step that matters, in their big picture.

This therapy, human donor islet cell transplant, is close to going to the FDA for review.  Dr. Hering said it is conceivable that within a few years a person with type 1 diabetes could walk out of their doctor’s office with a prescription for an islet cell transplant.

But supply is a huge issue.  These islet cells are harvested from cadaver donors, and there are just not enough to go around.  Dr. Hering and his group are working with the Spring Point Project to use islet cells from medical grade pigs, which would eliminate the supply issue.

At the same time, there is a lot of progress being made around the anti-rejection/immunosuppressive therapies.  The cocktail of drugs these recipients take are much different than what someone would have taken ten years ago.   Dr. Hering feels that patients are often over-concerned about the anti-rejection drugs, and feels the general healthcare industry needs to be better educated.  Based on what I have heard and seen, I would agree.  But it is still a concern, however small.

I hope that you see this is a multi-step thing, and to call it a genuine cure for type 1 diabetes would be a stretch in my book.  That being said, these people have their lives back, and are feeling better than ever.  That’s pretty strong testimony.

I am encouraged by what I heard and learned, and am also encouraged by the many brilliant groups working on this from all angles (the procedure, the supply, the anti-rejection therapy).    The more I learn, the more I understand just how complicated this problem is.

I have hope.

The entire program was recorded, and you can watch the Entire program, courtesy of the Schulze Family Foundation (1 hour, 44 minutes).

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Scott K. Johnson

Patient voice, speaker, writer, advocate, and Senior Community Manager at Blue Circle Health. Living life with diabetes and telling my story. All opinions expressed are my own and do not necessarily represent my employer’s position. Read more…

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