NYT on stem cell trials for islet restoration

The Edmonton Protocol uses islet cells from cadaveric donors. These are injected into the recipient T1D’s liver. Two injections are needed and are spaced apart by a short time period. Success has been mixed; a friend underwent the Protocol about 18 years ago and had working islet cells for about 12 years. She’s currently still producing some insulin but has to supplement with injections. She was delighted to be 12 years insulin-free. She was immunosuppressed and remains so.

I’ve been T1D for 52 years and had a kidney transplant in 1987, so have been on immunosuppressants for 34 years. They cause me no problems at this stage; the worst that occurred was osteopenia, because of the heavy Prednisone dose they socked me with immediately post-transplant. The subsequent maintenance dose is very low and causes me no trouble. Yes, immunosuppressants increase the chances of several unwanted side-effects, but as my mother, an MD, used to say: if you read all the side effects of Aspirin you’d never touch the stuff.
I have mixed feelings about the erstwhile “cure” but stem cells are miraculous and it’s certainly some progress. One of the biggest pitfalls is t hat this “cure”, once sorted out, may be unaffordable. It won’t be like Banting and Best selling their patent for $1. And that was a centigrade dollar to boot! :canada:

Thanks for reporting your long term real world experience with immunosuppressants, @AuntieFi. Hearing from patients about this persuades me much more than hearing from people with conflicts of interest.

Since you received a kidney transplant, any reason why you didn’t get a pancreas transplant at the same time? I’m impressed that your kidney transplant has endured for 34 years. Is that a long time as far as kidney transplants go?

I’ve been following Dr. Melton’s research on growing new beta cells. Based on everything I’ve read I feel like this has the best chance of being a functional cure one day.

I’m not saying this will work but it seems like one of the only things that is a “functional cure”.

Personally I don’t expect I’ll be interested until there is a method not involving immunosuppression.

I don’t think in the next 50 years they will be able to correct the multiple reasons our immune systems go off the tracks or replace our beta cells with our own cells so I feel like the “functional cure” is the best I can hope for.

I’m happy to see the NYT writing about this. Hopefully it helps them get more attention and support.

Hi Terry,

That many years ago they weren’t doing too many combo transplants. I did subsequently look into a pancreas transplant 15 years ago but was told that I was doing so well that they wouldn’t recomment the risk of another transplant. I was also dissuaded from trying the Edmonton Protocol because of its less-than-impressive results. The doc whom I consulted in Toronto had actually been on the research team in Edmonton and gave me an article from the American Journal of Transplantation that did not speak favourably of the procedure.

I was transplanted in Toronto although I live in Ottawa. I think I’m currently the longest-living graft in the city and there are quite a few of us.

With my adoption of the Omnipod pump and Dexcom CGM my sugars are steady but naturally sometimes I’d like to chuck all this bumph out the window!

Cheers,
Fiona

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