Has anyone had an islet cell transplant? I know it is standard of care in many countries and I am interested in learning more about it and your personal experiences.
Hello @drkagreer welcome to Breakthrough T1D. Islet cell transplant is not a standard of care in any country. The specific cell transplant systems are all experimental at this time. Some use an implant with islet cells and require anti rejection drugs which can be difficult to manage in long term. Some use a cell masking membrane (to avoid immune system attack) and wouldn’t require anti rejection drugs but the only one I’ve heard of didn’t work. There is also research in stem cell or other blank cell systems none are approved treatments.
a pancreas can be transplanted but it is considered risky and requires anti rejection drugs for the rest of the person’s life. Certainly not a standard of care when insulin therapy in most cases gets the patients to reasonable glucose control. it is typically considered if a patient has kidney failure and as a result requires a kidney transplant (and anti rejection drugs anyway)
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@joe. Your information is a bit outdated. A simple Google pulls up:
Islet Cell Transplantation in Type 1 DiabetesIslet cell transplantation is a standard of care for type 1 diabetes in regions of Canada, Europe, Australia, and Asia. This procedure is performed by academic medical institutions and is part of the Clinical Islet Transplantation Consortium, sponsored by the National Institutes of Health. The goal of islet cell transplantation is to restore glucose-regulated endogenous insulin secretion, arrest the progression of diabetes-related complications, and improve quality of life. The procedure requires lifelong immunosuppression to prevent rejection of the graft.
Of course immunosuppression is required and closely monitored. The procedure is reserved for difficult to control, or “brittle” type 1 diabetes. These patients cannot get adequate control with even the most intense measures- closed loop pumps. In my case of brittle type 1, immunosuppressive medication would be a blessing compared to what I face with diabetes highs and un-aware dangerous lows every day.
Im sorry for misinterpreting “standard of care” which im taking to mean treatments of similar circumstances. The use of insulin for glycemic control for type 1 is the most prevalent treatment. In extreme cases, and in cases with other-than-typical complications, transplants might be the only option.
in the USA, there is only 1 islet transplant (allogeneic pancreatic islet cellular therapy) approved by the FDA, so in the US, the treatment is far from standard, and you essentially have only 1 option. Well over 99% of our participants here are US based, so the request for feedback from outside the US might not get many answers. We have zero participants from Asia, a only a few from the UK and Canada.
I hope you do get feedback on other transplant therapies, and some relief for your situation. Not being able to get to an acceptable glucose control with insulin sounds frightening. good luck!
Welcome to the forum @drkagreer A quirk of islet cell transplants when you go down that route you don’t have diabetes anymore so this forum becomes less useful. A nice problem to have. I can’t recall anyone posting in the last 6 months mentioning they had the transplant done. The site search tool goes way back to 2010 so you can try to find someone that way. Put @usernme in a message and if they still have notifications turned on the site will try to email them.
Continue to explore the literature on Islet Cell Transplants. The paper you linked to is based on a control group (no transplant) between 2010-2012 with is before really good CGMs and HCL pumps were available. I searched for other papers and came across A Worldwide Survey of Activities and Practices in Clinical Islet of Langerhans Transplantation - PMC which shows quantities of islet cell transplant patients worldwide in the CITR database.
What country are you living in? I was starting to look at what the ADA 2025 Standards of Care said about islet transplants but realized it might not be helpful.
I am in the US and I am a geneticist who has been involved in academic medical clinical research for numerous years. I have followed islet cell isolation and transplant protocols since the early 2000s via medical journals and physician reports. Therefore, I am very familiar with all of these things.
Since the FDA has not approved islet transplants in the US, we cannot get them done here as people in other countries can (and covered by insurance). It’s an FDA glitch- a very old rule on the books that says “manipulated” cells/organs cannot be classified as “transplants”. The rule was made long before we had the technology to isolate islet cells out of pancreas. So, the issue in the US is that although the medical records indicate significantly improved quality of life, decrease in complications, and insulin independence with an islet cell transplant, the FDA won’t approve the procedure as a transplant since the cells are a “manipulation” of the whole organ.
There is no pharma funding to push the FDA to change their outdated rule…go figure. (pharma makes a killing off T1D) Clinical investigators in the field have tried and published numerous papers to advocate for a change, but again, they do not have the time nor the resources to pursue the FDA.
If you’ll allow me to define “islet cell transplant” as any procedure that puts working islet cells in the body then there is one option in the US at the moment.
FDA Approves First Cellular Therapy to Treat Patients with Type 1 Diabetes
Lantidra | type 1 diabetes treatment | Chicago, IL, USA
For a good time connecting with other with T1D and the docs who are contributing to the ADA standards of care check out ONE 2025 - Taking Control Of Your Diabetes® The page says sold out but the registration page still shows 2 tickets available if you want to vacation in San Diego this weekend. I’m planning to watch the live stream this year. Looks like they are going to repeat the Diabetes Jeopardy panel they did at last months ADA conference.