“The Cure” for Type 1, Perhaps

Wow! There’s a lot of buzz right now about the British man who was “cured” of Type 1 diabetes with islet cells from donor pancreases transplanted into his liver. He’s apparently producing his own insulin and is entirely free from hypoglycemia.

This looks to be the first completely successful islet cell transplantation. Previous patients escaped from hypoglycemia but continued to require insulin in small doses.

Perfecting a procedure known as the the “Edmonton Protocol,” doctors at King’s College Hospital in London obtained islet cells from donor pancreases and transplanted these by injection into the liver of the recipient. Once in the liver, the cells develop their own blood supply and begin producing insulin. This is no invasive surgery, but a 45-minute clinical procedure. Wow! (Did I already say that?)

But then again, I’ve seen an awful lot of headlines lately announcing the impending end of insulin dependence. There was the mother-donor-to-daughter islet cell transplantation in Japan. And there were there were the eight woman in Minnesota in whom doctors successfully transplanted islet cells from single donors — as opposed to using multiple donors, previously considered necessary for success. And then there was the one about a University of Maryland study showing that overdoses of the human protein Zonulin may counteract the effects of autoimmune diseases like Type 1 diabetes. So far, they’ve only tried that one on rats.

All the transplantation procedures (including the new one, I believe) call for patients to take immuno-suppressive drugs or a combination of steroids to keep the body from rejecting the new cells -– which of course can lead to a LOT of other problems.

So is it time to get excited? Is islet cell transplantation really getting close to mainstream? My diabetic-herself educator says, “There’s so much news of advancements… I hold back on getting too excited. It’s my defense mechanism.” And a diabetes activist I just met who’s had the disease for 44 years (since 8 years old!) says: “We used to go around saying there’ll be a cure by the year 2000. Now I just keep charging on…

The advancements are exciting, yes, but I’m bracing myself for a few more years of being “stuck in the realm of possibilities.” Which means making peace with my insulin pen and meter, for now. And getting my derrière to the gym!


30 Responses

  1. Kathleen Weaver
    Kathleen Weaver March 11, 2005 at 10:56 am | | Reply

    I’ve already learned my lesson. I used to get all excited about the prospects of a continous glucose monitor, even bought a glucowatch, and now, I’m all …

    …okay, I’ll believe it when I can buy it and it actually works well enough to be useful.

  2. Amy Tenderich
    Amy Tenderich March 13, 2005 at 3:08 am | | Reply

    I know what you mean, Kathleen. I don’t want to quell anyones high hopes, but I think it’s really important to make peace with the tools and methods we have available to us now.

  3. Rickie L
    Rickie L March 14, 2005 at 1:33 pm | | Reply

    I’ve been a type 1 since I was 3 to 31/2 and am now 58 and will be 59 in June of this year.If we surrender up hope of a cure ever being found then we also surrender up our lives to an insidious desease and if we give up at this stage of the game then we all lose not just one but all.We must not give in to the onslaught of the desease but continue to fight and hope for a cure whether by science or by the hand of God I for one don’t care how it comes as long as it comes while I still live….Rickie L

  4. gina
    gina March 14, 2005 at 9:10 pm | | Reply

    There are patients undergoing clinical trials in the Diabetes Research Institute in Miami that have been insulin free for over two years.


  5. denson smith
    denson smith June 28, 2005 at 10:39 pm | | Reply

    This looks to me like something that will someday be supplanted by stem cell research. If we ever get serious about stem cell research.

  6. estelle jeskey
    estelle jeskey September 9, 2005 at 5:07 pm | | Reply

    my son who is 30 has developed diabetes, my friend says she saw on chammel5 or 7 that someone went into the hospital and somehow got cleared out and is no longer a diabetic, did anyone see or hear this can help me.
    i am devasted in chicago please e mail me asap

  7. Peter Rowe
    Peter Rowe October 2, 2005 at 10:38 pm | | Reply

    The thing to remember, clearly, about islet cell transplant, including the Edmonton studies and those that have come after modeled on their protocol (some of which trials have and are being done right here in Seattle’s Beneroya research clinic where I go for diabetes care) is that although these treatments “cure” diabetes by replacing the islet cells and restoring proper insulin production, there still remains the very sticky problem of immunosupression. So far, my doctors tell me that although the long term side effects of diabetes are nasty, and eventually fatal for many of us, even the gentler immunosuppression regimine of the Edmontom protocol is still treatment with things like steroids, etc, and so far, the long term damage and side effects, including mortality, from that treatment remains somewhat worse than the effects of long term diabetes when it’s under decent control I’m told that so far, only those diabetics who’s disease has proven very difficult to control, or for whom it’s become a life and death matter to simply fix the diabetes today, no matter what the costs, end up being considered. Or those who are already needing immunosuppression due to other transplant, such as kidney. For those of us who’re still managing to control the diabetes fairly well, getting decent A1C values and not suffering really dangerous symptoms of hypos or the like, we’re still better off without the transplants. When they fix that immunosuppression problemm, only THEN will this really be a viable treatment for the majority of us.
    Peter Rowe (dx 1968, T1, also insulin resistant too (T1 +T2, does that mean I’m T3?.) Insulin pump MM712 since 2003.

  8. Jason
    Jason October 12, 2005 at 1:22 pm | | Reply

    Well I received an islet transplantation 3 months ago here in Edmonton, and life is great.

    I have little to no side effects from the immunosuppression, and currently I am taking 3U on Humilin N at night – as a measure to no overwork my new cells I am told.

    I have only had the one transplant, and the doctors are quite pleased with my results. For me, the goal is not to get off of insulin, but to have stable sugars.

    My HgA1C was completely normal last week, reflecting the last 3 month period.

    I am expecting to be taken off of insulin at some point to ‘see’ how it goes, but as I mentioned, that is not a priority for me.

    I feel better then I have in the past 10 years, and am suddenly hopeful in my outlook towards everything now.

    If you want more information, or have questions, please email me at jasturn@gmail.com

  9. Scott
    Scott December 21, 2005 at 11:43 am | | Reply

    While all of these developments (and more) are promising, it is entirely inappropriate to talk of anything as “the” cure for type 1. There have been so many failed promises that I cannot get excited. BTW, there are some other promising developments worth considering as well, including the immunology research that is scheduled to begin human clinical trials at Massachusetts Gen. Hospital next year. Lee Iacocca just announced that he had surpassed the halfway point toward raising $11 million to do human clinical trials, and these could begin sometime in 2006.

    While none of these is likely to be “the” cure, I think each discovery is an improvement, raising the possibility that we can take islet transplants from being an experimental procedure requiring immunosuppression to an actual treatment without immunosuppression someday. Each is a vital step in the progress towards a cure.

  10. BillyWarhol
    BillyWarhol June 6, 2006 at 10:12 pm | | Reply

    yeah i hope so!

    i echo the caution of the other folks!

    but this news on INGAP maybe the ticket!


  11. Ron
    Ron June 12, 2006 at 4:08 pm | | Reply

    Wake up people! This is not a cure! You are trading insulin injections for life long immunosuppresive drugs. Doing so you a) trade insulin for one or multiple immunosuppresive drugs b) increase you risk of various forms of cancer 10 fold!
    The life expectancy for a person with Type 1 diabetes far exceeds those with any type of organ transplant!

  12. Terry
    Terry August 1, 2006 at 7:41 am | | Reply

    Thanks for this site! Very informative and supportive. It’s comforting to know there is a whole community of people who live like I do and who worry about the same things. Having diabetes is like having a fourth child to take care of (I have 3 and a dog . . .)

  13. Kitty
    Kitty August 9, 2006 at 11:01 am | | Reply

    Billy Warhol is RIGHT!

  14. Catherine Harrison
    Catherine Harrison September 12, 2006 at 4:35 pm | | Reply

    I have three daughters ages 9, 7 1/2 and 4 and recently had a scare w/my 7 year old Gabriela. She had sugar in her urine and a finger stick of 146 and was thoroughly worked up at CHOP. There her labs were WNL with a BS of 81 & HgA1C of 5.3 so it was concluded she doesn’t have Type I–BUT based on the “diabetic antibody” results which came back a few weeks later, she is at risk for developing Type I Diabetes. I have been sick w/worry and have been enforcing adequate exercise and a healthy diet. Has anyone been in this situation? I feel like I am waiting for a bomb to drop! Any advice would be GREAT! Thanks in advance.

  15. Gloria sayler
    Gloria sayler September 13, 2006 at 9:13 am | | Reply

    I’ve just found this blog – kudos to you!
    I have to comment on the Islet cell transplantation – I agree that as long as there is the immunosuppression problem – the transplantation is a problem. I had an islet cell transplant at NIH in 2001. I was never insulin free, and after a year I was back to taking insulin almost as frequently as I had before transplant, but my HbA1cs were much better. Then I stopped gaining ground ,and began to lose it – my friends no longer said how well I looked.
    I’ve had diabetes since 1960, with some complications, and now having a very difficult time due to menopause. There are so many very difficult diseases to live with in this world (I’m an HIV social worker) – I would be happy if we could just find a really useful glucose monitor that could give you frequent results,and an implantable pump. Even more important, I would want universal access to health coverage so people with whatever disease could get effective treatment for it.

  16. alec holden
    alec holden September 14, 2006 at 9:13 am | | Reply

    i’ve had diabetes for 6 years,(i am 16) i really don’t think they will make a cure in my lifetime.

  17. Rich
    Rich February 21, 2007 at 9:10 pm | | Reply

    To much money, jobs and businesses will be lost if they find a cure. Think about it, when was the last time they found a cure for something. The cure has been there for years. All they do is find things to make more money, ie insulin pumps, CGMS, lantis, insulin that can be inhaled, etc.

  18. Andrew Wladyka
    Andrew Wladyka April 25, 2007 at 10:03 pm | | Reply

    My 4 yr old son was diagnosed with type 1 Friday 13th 2007. I look at him and would give everything up to have him have a normal lifestyle where he doesnt need monitoring day to day. There are too many do gooders in society who dont want things to change because thats the way our life was intended..RUBBISH!
    If we were all created equal we would all have this disease.Rich on 21st Feb post i think was correct. Many people would lose jobs over a cure but for people who wrk with diabetics would say they would give their job up to have people cured.
    I just want my son back to where he was without finger pricks, and insulin shots, and he can have the icecream without worry about BGL’s.
    I want him to have the lifestyle that i had growing up and eating rubbish but learning from what you do and the mistakes you make.
    Now it all seems like i have a new
    born again but with needles.

  19. BillyWarhol
    BillyWarhol June 26, 2007 at 9:01 am | | Reply

    this is why i’m pushing hard for Embryonic Stem Cell Research* so hopefully the Immunosupressant Drugs won’t be needed* Here we are in June 2007 & Bush had the pompous arrogant audacity to Veto Embryonic Stem Cell Research – beyond all belief*

    Cheers Everybody!! Billy ;) )

  20. TerryDowd
    TerryDowd July 27, 2007 at 4:23 am | | Reply

    I have been reading about these potential cures for 38 years and have concluded it is not ‘good business practice’ to find a cure, do your sums.
    Type 1 diabetic for 38 years, no problems as yet thanks to I assume 500mg-1000mg natural vitamin E daily.

  21. kim
    kim August 6, 2007 at 7:40 pm | | Reply

    i have been type 1 diabetic for 36yrs. like you all i have given up hope for a cure due to learning who would cure it to many people would be out of business. to everyone out there try reading a book by hulda clark the cure for all diseases i have after 5yrs having rhumatoid athritis massive chemical sensitivities.only having her book for 11 months have fixed these to problems now my sugars are the best i have ever seen them. i dont know whether i can fix my diabetes but i am trying. for people who have not had it long you might be able to i had underlying issues to fix first. it is worth reading.

  22. jshanewhit
    jshanewhit November 8, 2007 at 7:23 pm | | Reply

    a comment for alec holden,

    don’t buy into the “they already have a cure” crap! No researcher will ever pass up a Nobel prize and millions, to give some drug company money. The person or lab that cures type 1 diabetes will have fame, fortune and the admiration of millions. No company wants to see another company beat them to the punch. We have “cured” many diseases in the past, polio is extinct! The average human lifespan has nearly tripled in less than 100 yrs.

  23. jshanewhit
    jshanewhit November 8, 2007 at 7:34 pm | | Reply

    Sorry to get angry with my last post, but get real.
    I have been a type 1 for over 18 yrs. It is a harsh life at times, but it could be much worse. I look forward to better treatment, if not a cure. Treatment has improved vastly even in the short time I have been diabetic.
    On another note, I was looking for information that would give me a clue to my weight loss. I have gone from 140# to about 127. My sugars are not that bad, the only new factor is the Lantis. I was curious if there was any info on Lantis and perhaps rare side effects that would match my symptoms. Any info would be welcome. My doctor has ran many tests with no answers, I am getting frustrated as I look very bad.

  24. jshanewhit
    jshanewhit November 10, 2007 at 1:53 pm | | Reply

    I apologize to alec, my response was aimed at rich, I was unaware of the format of these posts. I get angry when people seem to think quacks and crap is the same as real test results. People are unforgivably uninformed about the scientific process. Even people who’s lives depend on that process.

  25. DiabeticDame
    DiabeticDame January 17, 2008 at 10:14 pm | | Reply

    Ok, I’m confused (I’ve been type-1 diabetic for 30 years)…What about studies of taking ONE’S OWN CELLS and cultivating them to fix ONE’S OWN PROBLEMS IN THEIR BODIES? NO rejection drugs necessary. They’re doing this on animals to repair joint/cartilidge damage and the recovery time/results are extraordinary…Maybe I don’t have all the details, but this way no fighting over “killing” babies (ridiculous)for their stem cells. Just wondering

  26. Chris
    Chris March 18, 2008 at 2:36 pm | | Reply

    Hey Alec and Kim,

    Well they “kind of” have a cure. The whole transplant thing, in all its variations is a sort of cure, though some would argue the cure is worse than the disease if you end up stuck on immunosuppresive drugs.

    The problem is the medium of the cure. There are simply not enough islet cells out there for massive implantation. Frankly that’s part of the reason why they’ve never called the transplants out from the tops of every building. That’s why stem cells are important because if they can make islet cells that do not trigger an immune response, then you’re home free. Then it’s just a matter of if your body tries to kill the new cells, perhaps for the same messed up reason it killed your first pancreas.

    As for Nobel peace prizes et al, I call shenanigans on that. University researchers are WORTHLESS and all they do is study the same crap over and over again. I can’t tell you how many times I’ve seen studies done on rats with cell implantation. HELLO? Been done, move on to the next level. I mean heck, as much as he was a jerk, and some would say a charlatan, Patrick Sunshiong (may have spelled that wrong) did implant a guy like FIFTEEN YEARS AGO with a semi permeable membrane around the islet cells. I know because I met the transplant recipient before the jerk divorced his wife, spent all his money on some sort of wierd spree, and blew his own head off. The islets worked, and they didn’t require immunosuppressive drugs. FIFTEEN YEARS AGO.

    If there is to be a cure it will come from a private company, and it probably won’t be a big pharma because they make too much $$ selling us needles and test strips.

    That’s just my two cents after 32 years as a type I.


  27. Jenn
    Jenn March 23, 2008 at 9:11 am | | Reply

    I’ve had type 1 since I was 12 years old (1978).

    Lots of talk re a “cure in 5 years.” The reason there’s no cure? Because type 1 is not preventable. Think about it, folks. How much press do the unpreventable diseases get? Zero.
    And since type 1 isn’t all that common, who cares? Yep, we’re in the same boat as those with cystic fibrosis. The worst part? We really have no spokesperson. There’s nothing like a Susan G. Komen group (and I strongly support their strong efforts) for type 1.

    Type 1′s silently take it. Those with breast cancer and AIDS speak very loudly.

  28. Jeff
    Jeff May 9, 2008 at 5:37 am | | Reply

    DiabeticDime – I think one of the problems that arises from trying to use your own cells to fix the problem is that the reason Type I occurs is due to your immune system suddenly “not recognizing” your islet cells, and then attacking and killing them because they seem like a foreign presence in your body. In theory, this would mean that your own islet cells would still require immuno-suppressive therapy, because they are as foreign to your immune system as some stranger on the street. This is just my deduction from my understanding of the disease, haven’t actually discussed it with a doctor though.

  29. billy
    billy January 23, 2011 at 6:44 am | | Reply

    my son was hit with type one when he turned four…a heartbreaking blow. he is now 21 years old. we have been hearing about a cure for a long time it seems stem cells were the best best.. but of course all the holy rollers say its ungodly…. all the politicians back away from supporting it because they wont get the votes from the holy rollers…well they way i see it and i hope i dont offend anyone is if it would get you elected they would support it.but the drug companies who give money to these politicians dont want to cure anything..they make billions selling us they supplies…so no major politician will get behind the cause to help….its just like gas and the oil business..to many rich people make tons of money from it and they are not going to let someone solve that problem either….if the president who ever it would be obama or the next one would have loved ones in need of a cure you bet they would get behind it…. its different when its your problem….i hope that someone comes up with a cure…i know its possible.. but it wont come from this country..to many rich companies would bury it…. i wish you all the best..

  30. Tony D.
    Tony D. January 23, 2011 at 4:58 pm | | Reply

    I am wondering if anyone is aware of ongoing clinical trails that are examining immunomodulatory agents that arrest the auto-immune attack against pancreatic beta cells. Preserving beta cell function is the primary objective of such research efforts.

    I am aware that a number of investigation sites in North America are participating in trials such as the DEFEND-2 trial. Preserving beta cell function in patients newly diagnosed with type 1 diabetes may have quite a number of implications.

    Additional information can be found at http://www.defendagainstdiabetes.com.

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