I Could Really Use That

Friday, February 11, 2011

** Playlist Selection:  A Change Gonna Come by Sam Cooke.... It's been a long time comin'... Go click PLAY**

It was one of those moments that just take your breath away.  From completely out of the blue...  Shifts your perspective...  Breaks your heart...  And leaves you shaken...


Swetpea stayed home sick from school on Tuesday.  She infected Mimi so Mimi and Gaga were unable to babysit.  I had a very important meeting at school.  So Daddy got to stay home with Sweets.


During the day... completely out of nowhere... came THIS conversation:


Sweetpea:  Dad, Do you think there will be a cure for diabetes?
J:  I sure hope so.  We will do everything we can... and keep raising money so there can be a cure.
Sweetpea:  Thanks, Dad.  I could really use that. 


THE CURE

The topic of a cure has been tossed around the DOC quite a bit recently.

It all started with Jeffrey Brewer's interview with diaTribe about the new direction of JDRF, thoughts on a cure and the progress of the Artificial Pancreas Project. 

In case you didn't catch it.... that interview sparked quite the debate in some circles.  Here are a few quotes:

The first very big transition is we’re moving away from the over reliance on the cure as the central part of our message and funding. This does not mean JDRF is any less committed in its focus to find a cure, but we have some work to do in order to get there. And in the meantime, there are many people who will live with diabetes for a relatively long period of time. We have a responsibility and an opportunity to help them live better, healthier, longer, and less stressful lives. And so one of the big changes that we’re undergoing is focusing on improving the lives of people living with diabetes on a day-to-day basis.
This expanded mission will also develop into an emphasis on prevention.

The second big change at JDRF is moving away from an exclusive focus on children and also embracing the adult type 1 diabetes audience. At the end of the day, at least 85% of the people living with diabetes are adults, not children. We’re no less committed to improving the lives of children, but there are a lot of people out there who have lived with this disease for a very long time. And what’s really important to them is an improvement in their life today, whether that’s managing blood sugar better on a daily basis, preventing complications, or screening their kids for diabetes.These first two big changes are mutually reinforcing. Embracing treatment and prevention is going to help us be more relevant to the type 1 diabetes adult crowd. If the cure is five years away, then by all means let’s double down, let’s go for the cure, and treatment is not important. But if the cure is farther out than that, then we’ve got to really focus on helping people live with diabetes. And that’s where JDRF is going.

The third big change at JDRF is a commitment to going beyond academic research as our sole focus. We’re still funding academics primarily today, but with much more focus on translational research and on efforts to move developments from the laboratory into companies. At the end of the day, companies will deliver the therapeutics for our loved ones, whether they develop devices or drugs. JDRF is an enabler in this process. We’re the only organization, the only entity in the whole equation that is exclusively focused on benefiting the lives of people with type 1 diabetes. JDRF is not going to develop intellectual property. We’re not going to do laboratory work. We’re not going to do clinical trials. We’re not going to sell drugs or devices. We’re not going to prescribe drugs or devices. We just want to help all those things happen more effectively and more efficiently than otherwise would, and to have this sooner than we otherwise would.When we look at how and what has to happen, JDRF will be intervening across the entire pipeline. This will occur at the laboratory level with the academic researchers; at the company level where development and clinical trials occur; at the FDA level where regulation and approval take place; at the reimbursement level to make sure that treatments are covered by insurance companies; and at the level of the clinician in helping make sure that they’re paid for the time that they spend with patients and that they’re educated about treatment options.
Treatments that address the underlying disease, immune therapies and cell therapies like encapsulated beta cells are going to have huge regulatory challenges. They’re going to have big reimbursement challenges. And they’re going to have huge clinical delivery challenges. JDRF needs to be helping across that entire pipeline.

I read lots of facebook posts from some very upset folks.  THEN I read a thread on the CWD website.  And it.  was.  UGLY.  That is the nicest thing I can say about it.  There were some very ANGRY people and the name calling and lack of respect that was seen there was disgusting.  It made me ill.

Regardless of your beliefs about JDRF or the cure...  what I have always loved about the DOC was the respect that we show for one another.  We realize that this is not a "one size fits all" disease.  What works for me may not work for you.  What works for you may not work for me.  And that's ok.

It was sad to see that respect fly out the window.  As Jeff Hitchcock said at the end of that forum, "Let's all remember that we are not the enemy.  The enemy is diabetes." 

I was going to blog about it.  I was ready.

But then LIFE happened.  Sweetpea came down with strep throat.  Which led to some wonky high bg's.  Work is always busy.  I was working on an AWESOME give away with Skidaddle bags.  And every spare minute was spent trying to schedule meetings with my Senators and Representatives for JDRF's upcoming Government Day (more about this coolness soon).

And after reading post after post on the topic....  I thought I'd just let it go.  The others bloggers that I read NAILED IT.  What more was there to add?  I didn't think I could possibly have anything different to say or cover the topic any more eloquently than it had already been covered.

To read some of the other amazing post floating around out there in the DOC about "the interview", check out this list:

I Don't Have Diabetes, I've got "tha suga"! :  Things Like This Shouldn't Happen
Diabetesaliciousness:  Here's What I Know
The Butter Compartment:  Bloody Hands
Candy Hearts:  I Have A(nother) Question
* Sweet to the Soul:  My 2 Cents Worth
The We Cara Lot Blog:  You Are Perfect Just The Way You Are Cure or No Cure
The Sugar Kids:  What's in a Cure?


But then.... Sweetpea had that conversation with J. 

And I knew that I HAD to post about it. 

What do I think?

I have no problem with what Mr. Brewer described.

First, I think that embracing the Type 1 Adult community is a great thing.  After all... Sweetpea is going to grow up (too fast, by the way).  And I want her to have all the support that she needs.  I want her to have an organization that cares about her whether she's 4, 24, or 44.  She will NEED that support.  And what an incredible opportunity!  I think our adult PWD's are a fantastic source of information and encouragement.  I won't be able to help her when she's in her 20's and has a D question.  I'll be there for her.  I'll try.  But I know that I won't be able to help in the way that someone who has "been there, done that" could help.  I want that for her.  I want that for all of our kids.

Yes, it hurts a little to hear him say that JDRF is moving away from an over reliance on the cure.  It's a little scary.  But he speaks the truth. 

How many of us were told at dx that the cure was 10 years away?  Practically everyone has heard it. 

And I believed it.  At first.  I don't believe it any more.

Mr. Brewer says, "If the cure is five years away, then by all means let’s double down, let’s go for the cure, and treatment is not important. But if the cure is farther out than that, then we’ve got to really focus on helping people live with diabetes."

Just as it becomes reality that THIS is your life.... that D is not going away... that D is really dangerous...  the reality of cure becomes a little more clear, too. 

The cure is not 5 years away.  It HURTS me to say this... but I don't think the cure is 10 years away, either.

As I've grown into this reality, I realize that even if a cure would be found tomorrow.... it would be awhile before we were able to access it.  And it would be something that I would want tested... long term, possibly... before I let it near my daughter. 

So if she's going to be living with D for awhile... then I want JDRF to be working on the best available treatments.  I want Sweetpea healthy enough that whether that cure comes in 10 years or 20 or 50... that she will be able to benefit from it. 

For me... a cure is not just about US.  It's not just about SWEETPEA.

I BELIEVE in JDRF.  I BELIEVE in doing everything I can - whether it is walking, raising money, collecting coins, biking, making gala baskets, or talking to members of Congress.  And although I HOPE and PRAY that a cure will come in my lifetime - I would still work just as hard if I knew that it was not going to happen.  Because SOMEONE will benefit.  Maybe Sweets.  Maybe her children.  Maybe her grandchildren.  Maybe her great grandchildren. 

I BELIEVE in a cure - regardless of when it happens.  And I BELIEVE in investing in new technology to keep us as healthy as possible while we wait.

Yes, I want a cure.  I want a cure so badly that I can TASTE it.  But a cure is complicated.  It's not simple. 

Like Kelly said, "I know that I will crawl through glass on my knees for a cure and I will continue to help and support any organization that is working towards that cure with every fiber of my being."

So will I, Kelly. 

Because we could ALL really use that.




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9 comments:

  1. Beautiful....just beautiful.

    We can ALL use that.

    And ALL PWD need insulin too...even the ones who can't access it because of the country they were born in :(

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  2. It's such a hard discussion to have with your child. I don't know that from a parent's perspective, although I feel like I can imagine what that might be like because I know the reality of that conversation from a child's perspective. It's an important discussion, and I believe how a parent approaches it has as much influence over how diabetes affects their child as fingersticks and insulin doses. I'm glad to see people talking about this, despite some of the aforementioned ugliness. I think this dialogue about it in the DOC is going to greatly benefit your CWD and many other CWD's.

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  3. Perfectly stated. I think what hits home most for me is that I know (thinking realistically) my little girl will be an adult before a cure is available to her. So I want her (and every other child with T1) to have the same support from JDRF then that she does now...why should it change, it's not like her T1 just disappears as she makes that transition. And while she's waiting for the cure I want her (and every other PWD) to be able to benefit from the best available treatments so that they can hopefully LIVE to see that cure! While the changes might sting a little at first, I believe that they are positive changes that will ultimately benefit the entire T1 community.

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  4. We could really use three. Diabetes is getting "boring." (That's our family's nice way of saying suckie.)

    Great post my friend. I firmly agree with you.

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  5. Well done Hallie. No one can say we lack passion, but I was saddened by the lack of respect also. Though I wish they would keep the main focus on a cure... I am all for anything that will make Justin's life easier.

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  6. Yep...agreed! P.S. Joe saves money b/c and I quote "I just want diabetes to end Mama"...UUGHHHH

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  7. yep - we could ALL use that.

    Love it.

    GREAT post, my friend. <3

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  8. Believe me when I say that many adult CWDs (including me) will put the children ahead of us in line if/when the cure comes. I mean that sincerely. No kid should have to go through childhood with the kind of crap D brings.

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