Thursday, February 3, 2011

My 2 Cents Worth

I found myself on Facebook a couple days ago and saw a lot of links to an article on diaTribe.  It was an interview that was done with The President and CEO of JDRF Jeffery Brewer.  Of course, the article caught my attention since it involves the JDRF. A organization that I support whole heartedly.  

I read the article for myself and see what all the "hype" was about.  (You should read it too and see what you think, just click HERE) I actually read and re-read the article numerous times making sure I wasn't taking anything the wrong way or reading too much into what Mr. Brewer was saying in the article.  

I know there are people in the DOC that disagree with what Mr. Brewer has said in the article.  They believe he is moving the JDRF away from it's original focus, which is to fund a cure for Type 1 Diabetes. After reading this article I have to respectfully disagree with these people. 

I do not feel that JDRF is moving away from their original focus, they are expanding it. I agree we need research for a cure.  JDRF is not the only ones looking for a cure.  The DRI and Faustman Lab  are other wonderful organizations out there actively researching a cure.  That is a good thing! The more organizations and people we have out there working on finding a cure the more likely we are to find one.  

The JDRF is expanding their efforts to make the lives of Type 1 diabetics, children and adults better, NOW.  We need better treatment and better technology to make diabetes easier to live with.  There is a good chance that those advancements in treatment and technology very well could lead to helping find a cure.  

The JDRF wants to help out across the board, not just with research but with clinical trials, FDA regulation and making sure new technology is covered by insurance companies.  Call me crazy but how can this not be a good thing? 

We need to find ways to make it safer for children and adults a like to live with diabetes.  Remember those with Type 1 live with it 24/7. There is NO rest from diabetes.  I have to think about it when Lovebug is awake, sleeping, whenever she puts anything into her mouth, exercise, stress and sickness.  Anything and everything effects her blood sugar levels and how she feels.  

There is technology out there that would help save Lovebug (and others who suffer from Type 1) from hypoglycemia in the middle of the night (or any time of day really) with a low glucose suspend that shuts off the basal rate on an insulin pump when blood sugar readings go below a certain level.  This is life saving technology out there that the FDA is dragging their feet on approving!! Mr. Brewer stated it perfectly

"...JDRF is trying to help the FDA understand how to make diabetes safe to live with then it is today. The example of the automatic shut off during hypoglycemia is a no-brainer. An absolute no-brainer.  The fact that we have to go through tens of millions of dollars to clinical trials in order to prove to the FDA that that's a good thing is really a shame."
Simply put, the changes at the JDRF are for the better. If a cure was right around the corner I would be the first one beating the drum screaming at them that their focus is wrong. That isn't the case though.  A cure is (unfortunately) at least 10 years down the road.  They are not just focusing on a cure but focusing on improving the lives of our kids (and adults) on a day to day basis!  That my friends is WONDERFUL!!

After all the negative backlash from the DOC I Mr. Brewer responded to it HERE (you have to scroll down the page just a bit to read it since it was posted on a forum) and did  a wonderful job.  Thank you Mr. Brewer for not only wanting a cure but wanting to make the lives of our children better.  

My friend Nicole also did a wonder post on this subject, check it out  HERE!!! 


Unknown said...

I agree that I didn't take it in a negative light either. I think improved technology options while maintaining a cure focus is a great thing.

The only beef I have right now with JDRF (along with any other *International* diabetes advocacy organization) is that insulin was developed almost 100 years ago....helping people in underdeveloped countries access it would go a long way to improve their lives...unless, of course...are they picking and choosing which lives are worthy of improving?

Just sayin'.

Sorry to get off on a tangent there. I just think that God's plan demands that we respond to the crisis that exists within the global T1 community:

1 John 3:17 But if someone who is supposed to be a Christian has money enough to live well, and sees a brother in need, and won't help him--how can God's love be within him ? 1 John 3:18 Little children, let us stop just saying we love people; let us really love them, and show it by our actions. 1 John 3:19 Then we will know for sure, by our actions, that we are on God's side, and our consciences will be clear, even when we stand before the Lord.

Donna said...

Loved this Heather! After all the negativity the past couple of days, its GREAT to read something so refreshing and positive.

Thank you!

Unknown said...

I agree and I like the way you were very diplomatic in your post Heather.

Alexis Nicole said...

This is why I love yall. Youre my breed of D mama lol.

Seriously wonderful post and I too think its wonderful!

LaLa said...

I'm so glad I missed all of the negativity -

Great post my friend - great post!!!

Amy said...

A post of fabulousity!!!!! (Yes, I totally made up that word but I love it and am going to use it)

I want to fist bump Wendy. Well said and verse quoted.

I have been trying to stay quiet on this whole issue tyo let it settle and find a spot in my heart, but I had to comment on your post because it really 'speaks' to me.

Thank you Heather!!! Love ya!!

connie said...

I think this was a beautifully written post and I agree with you completely!

Well done, my friend :)

Anonymous said...

Posted elsewhere on my feelings on the subject, but I do not think the comments posted on the CWD website reflect the majority of parents of children with diabetes, just a vocal minority. Most parents know that each new technology is YEARS away and the cure many more years farther still. Unless some accidental miricle of science occurs... and accidental miracles in science are responsible for a lot of cures. If we also focus on noninvasive cgms, implantable perhaps, Smart Insulin, islet sheets without the need for immunosuppression and more technologies like these, our kids will have a more carefree and safe adulthood. Vitally important is more research into treatment and prevention of complications. Unfortunately, these technologies will not be available for them to have a carefree childhood. Both long-term and short-term goals are necessary. I am more focused on the immediate day to day quality of life.

Jessica said...

I just have to tell you that your story about your little Lovebug reminded me so much of our Type 1 story. Our son, Evan, was diagnosed type 1 just 2 days after his 3rd birthday. He is now 4 and a half. Thank you for all the information you are putting out there on this blog! Someday it would be nice to chat with you. Our Evan is not on a pump yet but will be in the future (they say he's too young now). I will need some advice!!!


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