I wanted to raise awareness of the Islet Cell Transplantation protocol that has been being used in Canada for over 15 years. It is call the ‘Edmonton Protocol’ and I believe it is now being trialed in the U.S. at places like the Mayo Clinic.
According to the literature there are people who have been insulin free for 10-15 years.
As well, recently there was an interesting breakthrough:
Unfortunately, the Edmonton Protocol did not demonstrate success. Dr. Shapiro reported in 2006 that two years after receiving islet cell transplants, only five of 36 patients with type 1 diabetes remained free of the need for insulin injections. And counting all the centers involved in the studies, only 15% of the subjects remain free of insulin injections after five years.
This “cure” requires does not stop the autoimmune attack, requireing a lifetime of immunosuppressive drugs. Additionally, each Edmonton transplant requires islet cells isolated from two donor pancreases, which means there would never be enough islet cells to cure the majority of T1’s.
However, IMO the two most promising avenues to a cure right now are Dr. Faustman’s research in the US and the work done by Living Cell Technologies in Russia. (Neither of which are funded by JDRF.)
I had an Islet transplant May 2006 at University of Illinios Medical Center at Chicago. I’ve been off insulin since July 14, 2006 and so far so good. For me at least. of the 10 study participants that recieved transplant I believe two of us finished the protocol (ie 15months post transplant) with one transplant (I’m one of the two). Most have required two and I believe one person had three. I’m not positive on the last stat. The FDA has approved of up to 4 transplants per person in this phase of the study.
What reports from Edmonton have failed to note is that people that have had an islet transplant and need to go back on insulin require less insulin, have fewer, less severe hypos and do not go as high as they did prior to transplantation. Prior to transplant I was so insulin sensitive that I went low (below 55mg/dl) 3-5 times a week. I had hypoglycemia unawareness, which meant that I would often be below 55 and have zero symptoms until I required assistance from others. That being said, if I need a 2nd, 3rd, 4th transplant I’ll do it and after that option is exhausted if i need to go back on insulin I’ll go knowing I’ll still have better control then I had pre-transplant.
Islet transplant is a functional cure. It’s treatment for difficult to control type 1 diabetes. It doesn’t cure the underlying cause of the disease, a frustration researchers are working on in conjunction with islet transplants. How to get enough islets for everyone and how to best preserve the graft once transplanted. This is why its in clinical trials still.
I knew the risks of complications, risk of drug side effects and risk of possible graft failure when I went into the study. I had complications during the transplant (hematoma on the liver, it hurt. I was anemic for awhile, I got over it) and some minor side effects from medications (increased blood pressure, they raised the bp med i was already on, and mouth ulcers which are a pain but manageable). I’d still do the whole thing over.
It’s not for everyone. I agree to that, but I think it’s got more promise then many want to admit. If anyone wants information on the study I’m in you can find it at http://www.thechicagoproject.org/home.html and general information about islet transplant studies can be found at https://web.emmes.com/study/isl/
you can find information about the effects of islet transplantation and the immunosupressants used at http://www.citregistry.org/ look under “reports”, “exhibits”. in the 2009 report, adverse events are listed in Chapter 7. This includes adverse events for all reporting centers since CITR started collecting data, not just for 2009.
Personally, I’ve had no immunosupression or transplant related issues with my kidneys or liver. And the only issues I have had have been minor things like mouth ulcers, increased blood pressure which is managed with an increase in the blood pressure medication I was already taking prior to the transplant, and anemia.
I hope the URL is helpful.
And yes, almost 4 years later I am still free of insulin injections.
Mikheil Elizbarashvili.
Thank you for this helpfull information.
Where did you have islet transplantation?
You never took immunosupressive medicine, after the islet transplantation?
