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).

Dinner With Kathy and Her New Islets

Life is all about spending time with great people, which is exactly what I did on Monday night.  Kathy White blogs at “my new islets” and writes about her experiences receiving an islet cell transplant at the University of Minnesota’s Schulze Diabetes Institute. Kathy hails from Ohio and she has been coming to Minneapolis periodically for the last 2.5 years to do testing related to the transplant and research study.

A while back I met a couple of great families involved with the local JDRF office (hi Camille, Geoff, & Debbie!), and they invited me to join them for dinner with Kathy while she was here this time.  How could I refuse?

Camille, Kathy, Debbie, Scott

Camille, Kathy, Debbie, Scott

We spent almost four hours chatting away.  I had so many questions for Kathy.  As soon as she would finish answering one questi0n, I was throwing another at her.  I must have hit her with 15-20 questions in the first few minutes.  Poor gal.  She handled it like a champ.  I had to apologize to Camile, Geoff, & Debbie for completely dominating the conversation – I don’t think they got a chance to talk for at least an hour.

I learned that Kathy’s experience has been almost all good.  She had a little trouble with one of the immunosuppressant regimens, which showed itself as some gastro issues, and has also written a little about mouth sores.  She’s on a different combination of medicines now, which are not causing her any physical issues.

The immunosuppression is scary to me, and many others I think, but she said compared to diabetes it is nothing.

It’s been about 30 months since her transplant.  She’s currently taking a small amount of insulin daily (I think she said three units of lantus per day, and a couple units of regular before breakfast and dinner (did I get that right Kathy?)).  It’s not clear whether that is because her islet cells are fading or if it is a result of the immunosuppression stress.  She said before this cocktail of meds she didn’t need any insulin at all.

What stuck with me was Kathy saying “I finally feel successful with it.”  So, yes, she’s back on insulin again, but it’s been 2.5 years since she’s had a low or high blood sugar.  It’s been 2.5 years since she’s had to worry about blood sugar while exercising.  It’s been 2.5 years since she’s had a night of sleep interrupted because of a high or low.  It’s been 2.5 years since she’s had to do any math before eating.

That sounds pretty nice to me…

There are, of course, a lot of unknowns at this point.  It’s not clear if her new islets will work forever, or if the immunosuppressants are hurting her body in other ways, or what the next few years hold for her (the research study ends in another 6 months).

Kathy seemed to have a certain peace about the uncertainty of the coming years.  She doesn’t know what is going to happen, but is clearly very thankful for the 2.5 years she’s had so far, and will be thankful and grateful for every new day her islets give her.

I am very thankful to have Kathy, and others like her, doing so much to help figure all of this stuff out.  She’s done us all a great service by simply participating in this research study.  She’ll tell you that she signed up to help herself, which is true too.  Sounds like a win/win to me.

Thank you Kathy, for all that you have done, and for sharing your evening with me.  I really enjoyed your company, and look forward to the big party when you come back in the summer.  Don’t forget to bring your kayaks!

Camille, Geoff, Debbie – thank you for inviting me to dinner with you all.  It was a real treat for me, and I enjoyed having some time to get to know you three better too.