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What A Cure Looks Like.

October 18, 2007

I have had diabetes for close to fourteen years, and I have been an active diabetes advocate (sometimes it’s a second career) for just over six years and it all started when I was selected as a delegate for JDRF’s biannual Children’s Congress.

The Juvenile Diabetes Research Foundation has been one of the strongest proponents for finding a cure for diabetes, and is the leading funder for cure research. They awarded more than a billion dollars to fund research.

Their research is all over the map. Among their projects are: islet cell regeneration, islet cell transplants, stem cell research and the artificial pancreas. They don’t fund everything, but they fund a lot.

Last night I was having dinner with a friend and the topic of the cure came up. As we discussed JDRF’s research, he asked me, “What does a cure look like to you?”

It struck me as an odd question at first.

Not wearing an insulin pump and pricking my finger, I thought. Perhaps that’s what you were thinking, too. But is that really all there is to it?

Having a guarantee that I wouldn’t ever get complications is another important qualification in whether or not I think something is a cure.

Let me ask you something. When JDRF announced they were going to oversee the research for the artificial pancreas, there was a big hullabaloo that this wasn’t a cure. But what if this artificial pancreas, this perfect closed-loop system, really did keep the blood sugars in the normal range forever and you only had to occasionally refill it with new insulin? You wouldn’t have to test your blood sugar, you would always have normal blood sugars, you would not suffer complications or stumble into the kitchen at three a.m. with a low blood sugar or worry about counting carbohydrates or get sick from ketones.

Take this other scenario. Islet cell transplants have been taking place since 2002. While they have not perfected the transplantation process to the point that the islet cells last forever, if they were able to transplant islet cells from a cadaver and you did not have to undergo any additional surgeries but you had to take anti-rejection medication (because any immunologist will tell you that if you put any foreign object – no matter how tiny it is – your body will reject it immediately), would you consider that a cure?

There is also islet cell regeneration, but even if you could regrow your islet cells, there is always the possibility your immune system would attack your cells again. Would taking a medication to prevent another assault be a cure?

Funding for something that you can’t really define must be very difficult, especially when you have limited funding and understanding of how research progresses. Everyone has their own idea of what their cure would be like, and perhaps it’s ona sliding scale. I would like stem cell research, but I’ll take the artificial pancreas or I want an unlimited supply of islet cells with no extra surgeries and no more drugs or I can do a surgery every couple of years, but otherwise, I don’t want to think about it.

When you think about it, none of these may really get rid of diabetes. There are remnants of what happened, a shadow on our daily life that reminds us of what we endured for years. But is it worth funding? I think so. I am in favor of anything that guarantees that diabetes will not cause any limitations like hypoglycemia and complications from affecting my ability to live out my dreams.

Is that the cure?

13 Comments
  1. October 18, 2007 12:29 PM

    Hmmm, good question. Another important element that I think needs to be considered is that the cost associated with this disease also disappears, and on that basis, an artificial pancreas fails miserably. Even if it works, it will still cost a small fortune to keep that thing running with new infusion sets, sensors, insulin and whatnot, so I’d also include the elimination of cost on my list of requirements for a cure.

  2. Shannon permalink
    October 18, 2007 12:38 PM

    My idea of a cure is the classic scenario….the nonexistance of diabetes without any outside assistance whether it’s by machine or medicine.

    But then if no cure ever comes about, there are things I’d rather Brendon use than the pump….like the closed loop system if it indeed allows him to live without managing his diabetes manually.

  3. Allison permalink*
    October 18, 2007 12:43 PM

    There is always the possibility that insurance companies would food the bill… perhaps not right away, but after a few years and a few pioneers have tried it out, they might concede that this is worth the money. Though I totally see your point. That’s why I’m asking the question, to see what else I missed.

  4. October 18, 2007 1:18 PM

    Good post Allison.

    I think a cure would be trading insulin, etc., for something like a weekly or monthly injection. The injection (whatever is in it) would keep your pancreas functioning so your blood sugars were controlled.

    What’s a ‘real‘ cure? Taking a single treatment (pill, injection, surgical intervention) and never having to worry about diabetes again in your life. Call me a cynic, but that won’t happen.

    I’d take the weekly or monthly shot for the CRAP I have to put up with now.

  5. October 18, 2007 1:21 PM

    Y’know, I’ve spent so long NOT getting my hopes up and so convinced that there will never BE a cure that I can’t even imagine what I would consider a cure.

    Like Shannon, a cure is a complete cessation of diabetes. Islet cells that work, a pancreas that functions. Full stop. Not a closed loop, not transplants or implants or any of that. That’s not to say I wouldn’t embrace any or all of those things as treatments but for me, they wouldn’t be a cure. Just a better management system.

  6. October 18, 2007 1:55 PM

    I guess a true cure has to mean different things to different people. I mean let’s face it, diabetes is just a blanket term for hyperglycemia, when in fact there are sooo many causes.

    For me, the cure would be to retrain my immune system, then replace my islets. Hopefully that would lead to the complete end of my diabetic life. Sounds so simple, and it is still so far away.

  7. Jamie permalink
    October 18, 2007 2:20 PM

    I’m with Julia on this one.

    Anything but the cessation of Diabetes is just another form of management.

    Not saying that I wouldn’t embrace any of them though – but I wouldn’t consider them a cure. The only cure in my mind, is a procedure, injection, drug, whatever – that eliminates Diabetes in its entirety putting the body back to normal. Sounds impossible at this point in time though – but I never say never🙂

  8. kassie permalink
    October 18, 2007 2:32 PM

    A cure is a cure, plain and simple. The question for me is, in the absence of a cure, with what highly effective treatment would I be satisfied?

    The affordable, accessible, reliable, minimally invasive, did I mention reliable?, complication-preventing, management tool that does not require additional medications with their own side effects would be acceptable.

    Which is why I’m hoping for a cure.

  9. October 18, 2007 2:37 PM

    Allison,

    To me anything that involves machines and medicine that you have to keep using on a daily, weekly, or monthly basis is not a cure. Machines and medicines inevitably fail. (of course, so did Riley’s own pancreas)

    To me a cure is irradication of the disease all together. A treatment that stops the immune response and some way to regenerate beta cells is what I’m hoping for. I’ve always been a dreamer.

  10. Allison permalink
    October 18, 2007 10:21 PM

    Allison,

    I’ve been thinking about this alot too, since I just finished reading Cheating Destiny (which I saw was on yours and a bunch of other people’s book meme a few weeks ago).

    To me, a cure is not having to worry about any of this. No machines, no maintenance , nothing. It’s not having to think about what you body is doing and not trying to replicate something that it isn’t doing.

  11. October 19, 2007 9:41 AM

    I believe in JDRF too! However lets look at the four major branches for a possible cure: the artificial pancreas, stem cell transplants, stem cell research and islet cell regeneration. All are promising, BUT there remain HUGE steps to be taken in all four branches.

    I wouldn’t mind an artificial pancreas, the perfect close-looped system, but I do not think that we today understand even half of the factors that influence our blood glucose values. Today our doctors only seem to talk about insulin, exercise, stress and food as the elements that influence bg values. My last blog entry at http://chrissieinbelgium.blogspot.com discusses exactly THIS point! Yes these four elements DO definitely influence our bg values but other things do too, and we have very little understanding ot these “other things”. How can we create a perfect closed loop system if we do not understand how the hormone produced by our BONES affect our bg values? Please see the article linked in my blog entry. If the mechanism behind our bg values is much more complicated than previously thought, how can we produce the artificial pancreas until we fully understand the background mechanism?

    Concerning stem cell transplants, I certainly do not want to trade off diabetes for the negative side effects of immuno-repressive drugs! I don’t want one illness instead of another!

    Stem cell research is of course interesting, but again stem cells become easily cancerous….. And there are so many people with diabetes worldwide – how can we help everyone?!

    Islet cell regeneration is coupled with the problem that pobably after the islet cells are regenerated, our body may not know how to regulate the amount of insulin that needs to be produced. In other words, even if we can again produce insulin, our body must know how much and when it is necessary to produce the insulin. I think this was also discussed in the linked article.

    So OK, what does this mean? Should we stop trying? Of course not! But we have a long way to go. ….and that is the magic of science – perhaps one day we will discover the missing links and all will fit together perfectly! Sometimes a missing link just pops up out of the blue and all is solved very, very quickly.

  12. Aaron permalink
    October 19, 2007 10:30 AM

    In some ways, I haven’t given this important question much thought. However, in essence, a cure would be something that once it was applied would mean that you would’nt have to do anything considered as “diabetes management” again.

    On the other hand, anything that would reduce the amount of diabetes management that I have to do daily would be a right step towards a cure.

    At the moment, possibly more important to me is a prevention – i.e. a vaccine that once given would prevent diabetes from ever occuring. This way, I would no longer have to worry about the possibility of my children developing diabetes.

  13. October 20, 2007 6:42 PM

    It just dawned on me. Is the cure for us who have diabetes or a cure for those yet to become diabetic? I had polio as a child. There’s a cure for polio but it hasn’t returned the strength to my legs.

    Where is the emphasis in the search for a cure?

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