Saturday, October 2, 2010
We're Not Stuck
I attended a JDRF Research and Technology Update today. I'm not sure what I expected, but I was curious. I didn't expect to get fired up about the prospect of a cure.
I know, I'm asking all my friends and family to donate to the JDRF, which was founded and is dedicated to the search for a cure for type 1 diabetes. But I wasn't going to get my hopes up that it would happen soon. And I still don't believe a cure is right around the corner.
But one of the local JDRF Outreach Managers, Elizabeth Romero, speaking at the seminar, said something very simple that really hit home for me.
She noted that many of us who have had type 1 diabetes for a long time have become somewhat jaded. We heard when we were diagnosed that a cure was only a few years away, and we've heard that over and over ever since. It's been 36 years for me. That's how long I've been hearing and reading about cures around the corner.
Elizabeth said she understands that. And she said, "But we're not stuck."
She went on to point out many of the things that have come about partly because of the presence of the JDRF, since it was founded 40 years ago.
The essential thing is that there has been a lot of progress. We know more about diabetes now than we have ever known before, and next year we will know more. And the rate of progress is accelerating.
We're not stuck.
We don't have a cure yet, but we're not stuck.
So that's the good part.
The other part of this story is where it seems like we aren't making progress.
There was a pediatric endocrinologist on the panel of speakers, the only doctor in the group. He referred to multiple daily injections as "conventional" treatment, even though he said that it is better to have a pump. How long will it be before a pump is "conventional?" Why isn't it now, when studies show that people manage their blood sugars better on pumps?
Some parents of diabetic children expressed some frustration that they were having to wait for insurance coverage, and the doctor seemed to feel the delaying tactics were a good thing, that for some reason people should learn to deal with injected insulin before they were allowed to use a pump. He said that it was a "red flag" to him when someone newly diagnosed wanted an insulin pump.
To me, requiring people to get used to injections before teaching them to use a pump is like making them learn to drive a stick shift before they can use an automatic transmission, or maybe more like making them prove they can steer with their knees for a few months before you let them put their hands on the wheel.
I just don't get that.
All in all, I'm glad I went. I got another back-up meter, that may become my main meter, I like it so much, I met some great people, and I got a little bit fired up about the search for a cure.
.
I know, I'm asking all my friends and family to donate to the JDRF, which was founded and is dedicated to the search for a cure for type 1 diabetes. But I wasn't going to get my hopes up that it would happen soon. And I still don't believe a cure is right around the corner.
But one of the local JDRF Outreach Managers, Elizabeth Romero, speaking at the seminar, said something very simple that really hit home for me.
She noted that many of us who have had type 1 diabetes for a long time have become somewhat jaded. We heard when we were diagnosed that a cure was only a few years away, and we've heard that over and over ever since. It's been 36 years for me. That's how long I've been hearing and reading about cures around the corner.
Elizabeth said she understands that. And she said, "But we're not stuck."
She went on to point out many of the things that have come about partly because of the presence of the JDRF, since it was founded 40 years ago.
The essential thing is that there has been a lot of progress. We know more about diabetes now than we have ever known before, and next year we will know more. And the rate of progress is accelerating.
We're not stuck.
We don't have a cure yet, but we're not stuck.
So that's the good part.
The other part of this story is where it seems like we aren't making progress.
There was a pediatric endocrinologist on the panel of speakers, the only doctor in the group. He referred to multiple daily injections as "conventional" treatment, even though he said that it is better to have a pump. How long will it be before a pump is "conventional?" Why isn't it now, when studies show that people manage their blood sugars better on pumps?
Some parents of diabetic children expressed some frustration that they were having to wait for insurance coverage, and the doctor seemed to feel the delaying tactics were a good thing, that for some reason people should learn to deal with injected insulin before they were allowed to use a pump. He said that it was a "red flag" to him when someone newly diagnosed wanted an insulin pump.
To me, requiring people to get used to injections before teaching them to use a pump is like making them learn to drive a stick shift before they can use an automatic transmission, or maybe more like making them prove they can steer with their knees for a few months before you let them put their hands on the wheel.
I just don't get that.
All in all, I'm glad I went. I got another back-up meter, that may become my main meter, I like it so much, I met some great people, and I got a little bit fired up about the search for a cure.
.
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8 comments:
I just learned about InsulinDependence a couple of month ago on a flight to Colorado Springs. I meet one of the board members and will be having them on my show in the next couple of months. Great organization!
I agree with you. I have become jaded and tend to disregard comments made about a cure. Although I don't think one will come soon, it is something I hope for.
I'm in the same vote about being jaded as I've heard all about the "cure around the corner" for 23 years now. And re: the doctor's theory about starting on needles first, I agree that's kind of messed up. I was on needles for more than 22 years and for me, the needles were more a really good guessing game than 100 per cent accuracy. Ten months into being on the pump, it's still a huge learning process for me that I haven't yet mastered, but I can see how much better it can be once I do finally master it.
I think it is important to look at a cure two ways; one is curing those who already have type 1 diabetes, and the other is curing those who will get diabetes in the future. Currently the scientists are getting closer to curing the disease for those who will get it in the future. I was diagnosed last October and was able to get into a stage 3 clinical trial where they implanted antibodies for eight days. These antibodies are supposed to protect what is left of my beta cells and retrain my t-cells to quit attacking my beta cells. I have been insulin free for seven months. It is too early to tell if it is a crazy honeymoon period or if it is truly the drug but I am a believer. As a stage 3 trial this could be on the market in a matter of years. It may not by itself be the cure but it is a good start. And this trial was funded by the JDRF. Here is an article about a similar drug in Popular Science last year: Link text
I think the trouble is helping those who have already lost all of their beta cells. I think that sadly we are a lot farther off in that regard.
Thanks everyone for your comments.
Jonathan,
That's very good to hear about the trial you're in going so well.
I think there's a possibility that if the immune system problem can be solved, it will cure a remarkable number of long term type 1 diabetics.
A recent study of diabetics who had gotten the fifty year medal from Joslin found that most of them were still producing a small amount of insulin. The pancreas apparently keeps trying to produce beta cells even as the immune system is destroying them.
The same thing has been observed in diabetic mice. Researchers were surprised when they were simply trying to correct the immune system that insulin production spontaneously returned.
We'll see. Thanks for sharing.
Jerry, excellent topic. I would be interested in knowing that Endo's reasoning behind such a statement.
In today's world of diabetes it makes clear sense that a newbie T1 would start out with a pump. Yes, it's very important to know how to use a syringe as emergency back-up (every Type 1 should know that), but there's no reason one should start off Old School only and then maybe later update to far better and more accurate technology. There's nothing novel in the use of a syringe.
Thanks for sharing another great insight.
Jerry, few things....
1. About the pump
They made me wait a year before I could get on the pump. I remember I just couldn't wait. Then FINALLY I got on it, probably one of the top ten days of my life. Obviously my doctor and that doctor read the same book at med-school.
2. About a cure
That's all I have ever heard. TOMORROW. Right. I am jaded too. I was told "by the time your 20 you'll be cured". Well I'm about to be 24, no cure. Not even close.
3. Treatment VS. a cure
A lot of times, the doctor well then say "well there isn't a cure but treatment is better". That's too but it's like saying "the stuff tasted bad and we are making it taste better but it's still not Kobe Beef". If it's not a cure, it's not a cure. The doctors need to stop spinning it.
Hey...I was there too!
I left totally inspired.
It really helped me refocus. My daughter was dx over 5 years ago, and sometimes I feel bad going to the same people every year asking for money to support our walk team. This update is what I needed to get my brain back in the game.
I'm completely inspired by your ride. Seriously.
Thanks.
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