I met someone on IG who is type 1 who had a stem cell transplant in Brazil. He has been off insulin for 10 years and he doesn’t need anti rejection drugs. I hope he shares his story here.
Has anyone heard anything about this research study / program?
Its unlikely unless the stem cell transplant somehow rebuilt his autoimmune system. I cant say it will never happen, but mark me skeptical.
It IS possible if they used his own cells to produce the stem cells and continued to periodically give him more or used a barrier of some sort to protect the stem cells. In other words, keeping one step ahead of the autoimmune attack or preventing attacking cells from reaching the stem cells. There has been extensive research in this direction in Israel and Australia.
There is very little research being done in this country on cures, not only for diabetes but for other illnesses as well. Not to say that all research done outside of the U.S. is safe. They were doing bariatric surgery in Brazil 20 years ago with elimination of Type 2 DM as a side effect. Some were successful and some were not. In this country, fear of law suits curbs a lot of experimentation. Not saying it is good or bad… it is just the way it is.
IG is instagram
Thanks! I wondered too! LOL
I asked him to come here to share his story etc. There was a photo of him with a doctor who treated him at the hospital where it was done I guess. It was a research program so he said it was free. It was done with his own stem cells I think.
I only know of one other case where a type 1 got off of insulin- Jason Turner who posted here. He had two islet cell transplants from a donor, done in Winnepeg. He has been off of insulin for 10 years or more now.
I thought that was the shorthand for it😹
He said they used his own stem cells but did not give details about other transplants etc. Maybe he is one of the lucky ones who had his whole system reset by this. I read of one instance on yt not long after my diagnosis- a woman said her sister was diagnosed in dka type 1 and was on insulin and then a year or so later she did not need insulin anymore.
Interesting. I will read about that. One of my docs was doing some research in Israel. It is too bad there isn’t more here. I thought jdrf was still doing a lot.
I read on an older post here about stem cell transplants where someone said that they attach to the liver or pancreas I think, usually the liver and they cause scarring on the organs which causes problems. He doesn’t seem to be having problems though.
Yet in the meantime US pharma is telling us that insulin and other medications cost at list price is 10 times higher in the US than in other countries because of all the breakthrough research advances being made in the US and shared with the world. If that were even remotely true, why is it that technologies and medications not even available in the US are readily available in other countries?
I have been using digital Korean pens that can be imported from Germany that dose insulin in 0.1 units for more than a decade, giving 10 times better control than pens available in US. My insulin (Humalog/Lantus) costs 1/10th of the US list price in other countries.
The US health system for diabetics is worse than what is available in countries we claim are third world. We are inefficient, and laden with greed masked as extreme patient care. Repeating that we have the best medical systems in the world does not make it so.
That’s because research here is concentrated on potential money making treatments and technology. Cures do not produce profit.
I think we produce cures for things that they can’t find a long term treatment for, or that most people could go without treatment for (and would therefore make developing a treatment not profitable).
I’m sure the collective they who develop these treatments would charge a fortune for any cure type of treatment too. If it is something like continual injections/ transplants there will still be profits but maybe not as much as having everyone on overpriced maintenance etc. It costs $4000 a month I think for anti rejection drugs in the US.
JDRF supports a company (ViaCyte) actively working on encapsulated beta cells derived from stem cells as a cure for T1. They’ve been working on this a long time. I made presentations about it for the Illinois JDRF chapter when I was one of their Research Information Volunteers. That was more than five years ago and I haven’t followed up until now. I’m impressed with their progress. Maybe encapsulated beta cells someday in the US???
And would they have to be replaced periodically?
Yes- probably it would depend on how long it functions if it is an implantation of cells.
I think you’re right. ViaCyte places the beta cells in a pouch or sorts with a membrane that allows smaller molecules (nutrients, insulin) to move in and out, but prevents large molecules associated with the immune system out. They just started human trials, but in this video they talk about it lasting for ‘years’. I imagine they haven’t run the studies long enough to know the end point. Start the video at around 11:30 if you want see more.
I contacted them about their first study but because I don’t live in CA they would not let me apply for it.
Then there’s Dr Denise Faustman at Mass General in Boston…
https://www.faustmanlab.org/
https://www.massgeneral.org/News/pressrelease.aspx?id=2262
I particpated in her study donating blood along with a non d friend as my control. But I was not selected for the trial even though I qualified and I was in the pool. I haven’t heard much about this now.
At one point they asked me to get tested for epstein barr because they were studying people with type 1 and eb. I was too tired to go back the next year for another blood test for the study. It turned out I had a reactivation of EB when I was in the hospital in dka.
I think they still have to be on insulin from what I did read though? But an improvement would be great.
