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Hello JDCA, I’m Part Of The 85

** or The One Where I Defend the JDRF – #whodathunkit

I’ve been known to criticize the JRDF on occasion well a couple timesok quite a few, but after reading a press release from the Juvenile Diabetes Cure Alliance (JDCA): JDCA Report:  New JDRF Logo Has Negative Implications For A Cure, I was actually more than a little offended and also quite dismayed that

  1. They are so late to pick up on this,
  2. The don’t seem to have actually talked to anyone from the JDRF,
  3. They seem to have done almost no research on this such as the January 31, 2011 DiaTribe interview with Jeffrey Brewer. I mean you should know who the folks at DiaTribe are since they were covering research way before you kids hit the block, and
  4. They should know by now that the term “Juvenile Diabetes” is just a tad outdated.

Before we get started, the JDCA seems to be a watchdog organization for Type 1 Diabetes research (more on them from DiabetesMine) and the stated mission of the JDCA is:

The JDCA’s mission is to direct donor contributions to the charitable organizations that are most effective at allocating funds to research opportunities that maximize chances of curing type 1 diabetes by 2025.

If you read the PDF that accompanies the JDCA analysis, you will note that the document is subtitled “Voice of the Donor for the Cure”.  While I realize that donations are important, no where in that detailed analysis can I find anything that places the patient as being anywhere near as important as a donor.  For example:

A higher quality of life is a worthy objective. However, the JDCA believes that most donors contribute for the reason of a cure. We also reiterate that the treatments/complications marketplace is already well served by commercial enterprises and an increased emphasis on managing type 1 comes at the expense of cure development. Curing the disease still remains a part of JDRF’s mission, but it is listed second, behind improving lives.

and

Another element in the rebranding involves a name change from Juvenile Diabetes Research Foundation to simply JDRF.  The word “juvenile” is eliminated in recognition that a large percentage of the people living with the disease are adults. The JDCA does not believe that JDRF’s greater commitment to help adults that are living with type 1 better manage their health reflects most donors’ desire to develop a cure.

In the DiaTribe interview, Kelly Close asks

Kelly: How is JDRF prioritizing the cure going forward?

Jeffrey: As I said, we’re moving towards a 50-50 split of activities and funding between cure and glucose control/complications.

Seriously guys, this was 10 months ago and if you had spoken to some folks at the JDRF as I have, you would have known that this has been in progress for a long time, changing the mission like that was not a choice taken lightly and they have taken both heat and gotten support for it.  As a matter of fact, internally, they are still experiencing resistance from some local chapters.

Now here is where I’m am going to get into the shortsightedness of your analysis.  I’ve been a Type 1 diabetic for over 40 years, and the cure has always been “just around the corner”.  Do you know why I spent the majority of those years totally disconnected from the JDRF?  Because after hearing the same thing over and over, I stopped listening, I stopped believing just as my friend Allison did, and I know that she is not alone.

You appear to have applied simplistic mentality to a subject that is so deeply personal in so many different ways to different people.  In effect, you left the patients and caregivers totally out of the equation.  Foolish.   Foolish because these children grow up and their caregivers will still love them as adults.  And guess what, those diagnosed as adults have people who love them too.  I certainly hope your “analysis” doesn’t do more harm than good.

Here is the brunt of it. 

If we don’t work to help diabetics live longer, better, complication free lives how many will actually SURVIVE long enough to see this cure we are all so eager for?

Are you honestly naive enough to believe that the cure is anywhere in sight?  I notice you did not give an estimate of the chances for a cure by your desired date of 2025 or mention that the “cure” may mean different things to different people and may not match your stated definition of a cure (which took me a bit of digging to find from your blog, btw…)

Let me put this into a “donor” frame of reference so maybe you’ll not be so confused:  85% of the approximately 3,000,000 diabetics are adults.  So instead of ignoring 2.55 MILLION potential donors, advocates, mentors, and volunteers why not embrace them and help them as they grow from being children to teens to young adults to parents to grand parents to whatever dreams they might have?

Just this week, the world had yet another Blue Candle lit, hopefully you guys recognize what that signifies, due to the fact that a young life was silenced by diabetes.  A young life that could have been saved by one of those “treatments” you seem to place so little value in.

I am not a parent of a diabetic child and I have the utmost respect for them and how they are able to do all they do. But, if I had lost a loved one and some organization had been promising a cure for as long as I could remember?  I’m sure as hell not going to give my “donations” to them.  Even more so if they had been tunnel-visioned on “some cure” when they could have advanced treatments to keep my loved one alive.

I’m Part Of The 85.

Are you?

© 2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

  • Mike Hoskins

    Very well stated, Scott. I concur, as another one of the 85%. Thanks for putting this out there.

  • http://profiles.google.com/geosim23 George Simmons

    So true. Great post. 

  • http://www.sugabetic.me Sarah K

    *raises hand* …and another part of that 85%! 
    You go, Scott. I agree 1000%. It seems this “JDCA” has been a wee bit out of the loop.

  • http://www.facebook.com/bennet.dunlap Bennet Dunlap

    Fine bit of writing my friend.

  • Victoria

    Also part of the 85 percent.  With the technology I currently have, I have gained better control of my blood sugars and diabetes management — which will help me live a longer life and will increase my chances of having children one day. Even with a healthy pregnancy… what’s the point if I won’t be around to see those babies grow up? After 18 years of hearing about a cure, I’m beyond grateful for the side-by-side research being done to prolong my life and make it easier to live. Besides, what researchers learn in their quest for a cure is how newer technology is birthed. They are not quite as separate as you may think. 

  • http://www.bittersweetdiabetes.com Karen Graffeo

    Very well said, Scott! 

  • JDCA

    Hi Scott,

    Thank you for taking the time to read our latest report.  We would like to clarify some statements about our intentions and preparation for our latest report.  Also, we want to reiterate that we are working to be a liaison between donors and the charitable organizations.  We believe they have the potential to create a focused effort toward a cure that can deliver a result for people now living with the disease.  But, this will not happen if resources and efforts are spread to a variety of non-cure activities.

    1.) We were certainly aware of JDRF’s rebranding when it occurred.  We took our time to review the changes and respond accordingly.

    2.) We have spoken to multiple people from the JDRF since we began putting out reports in June 2011.  We have done our due diligence for reports and all facts that we present.

    3.) We were well aware of the DiaTribe interview with Jeffrey Brewer.  We were actually surprised that the changes that he spoke of last January were not been publicized on the JDRF website or made aware to donors.  It has been almost a year since that interview and only now are the changes being addressed.

    Treatments to better manage the disease and help people with type 1 diabetes live longer and free from complications are certainly needed.  However, the diabetes market, which is well established and lucrative, already addresses this need.  They have financial motivations and competition to hasten new and improved products.  We think that non-profits have the passion to fund focused cure research (that is not encumbered by financial profit incentives) and they must seize this opportunity by focusing financial resources and efforts. 

    Moreover, if JDRF changed their focus to include a “50-50 split of activities and funding between cure and glucose control/complications” than why were more than 50% of fundraising efforts using cure messaging?  We do not think that half of the “Walk For a Cure” events had a disclaimer reading “funds raised from this event will go toward better treatments.”  There seems to be a disconnect between how the money is being raised and how it is being spent.

    Patients (or people with type 1) are our foremost priority.  This is why we want a cure.  Type 1 diabetics and their families are donating their time and money to raise funds for JDRF and similar organizations.  The message of a cure is the central focus of most fundraising events.  Thus, the fundraising messaging and allocations of donations do not seem to be aligned.  We believe that donors and volunteers should know where their donations are going (which should correspond with their intentions).

    Please visit our website (www.thejdca.org) for more information and our definition of a Practical Cure.

    ** 7:21pm I edited this reply simply to reformat it to properly display without excess lines in paragraphs and to remove excess blank lines between paragraphs. I did not change any of the wording or phrasing of the reply. — Scott

  • http://www.facebook.com/cerichards21 Cara Richardson

    85% here. And like you (and Allison), I’ve lost faith in a cure. I do want…no I NEED better tools to keep me healthy and as complication free as possible. Well said Scott. Well said.

  • Nikki DeFalco

    Perfect. Absolutely.

  • Sara Knicks

    I am the definition of the 85%. Not only did JDRF drop the usage of “juvenile” from their name to recognize their efforts to help adults live with type 1 diabetes but it also recognizes people like me who were diagnosed with diabetes AS an adult. I appreciate that JDRF is making an effort to demonstrate their support for me as well.

    Perhaps I am also mistaken but isn’t is possible that better technology will lead to a cure? I don’t think the cure will come directly from a lab but also from the information they can gather from things like the closed-loop system.

  • Lee Ann

    When I first received an email from JDCA several months ago, and I poked around their site to see who they were and what they’re about, I was immediately dismayed by their continued use of the term “juvenile diabetes”, and that they put a date on when this cure is supposed to be here.  What a red flag that was for me!   envisioned newly diagnosed families – those with t1 children AND adults – latching on to that as if it were fact, and eventually being anything from disgusted to completely destroyed that the date could come and go with nary a sign of a true cure.

    I missed all this business about their criticism of JDRF, so I appreciate that you brought attention to it.  First, I’m appalled that an organization would be so blatantly critical of another organization.  That has unprofessional written all over it.  I freely admit I have a lot of mixed feelings about JDRF.  I continue to have encounters with local chapters that are making it really hard for me to have any motivation to support them, but having met him, I like Brewer, I like his vision, and I like the direction he’s steering JDRF, so I hope that Brewer’s vision is eventually better reflected at the local level.  As ambivalent about JDRF as I currently am, at least I’m not completely ready to write them off, which is more than I can say for JDCA.

  • Michael Schwab

    Well said Scott!

    As you know, I am part of the 85 as well, and just to back up the insight that you shared on the rebranding of JDRF, I have attended lectures and personally spoken to Jeffrey Brewer this year and this not only seemed like a very intelligent move on their part, but it also actually better defines the mission.  After all more and more Type 1s are presenting as adults.

    My sister presented at 50 and I met a man just last month who presented at 74 (a nationally ranked cyclist BTW)

    While I understand that JDRF has had cause for criticism in the past and likely will in the future, there can be no doubt that the leadership is very committed and connected to finding a cure, no matter how you may have to define that.

  • JDCA

    Thank you Scott, sorry for the formatting issues.

    • http://strangelydiabetic.com Scott Strange

      No problem, I’ve had that happen to me as well, esp if I cut and paste from a word processor. Disqus doesn’t seem to like that very much

  • http://profiles.google.com/aross454 Amy Ross

    I completely agree with what you’ve written.  The fact that JDCA goes as far as giving a date for an expected cure concerns me.  I’ve shared this many times, but in 1953 & again in 1958, my grandparents were told a cure was “around the corner.”  Both went to their deaths never seeing a cure, and my grandfather even had to watch helplessly as two more in our family were diagnosed (myself & a cousin).  That cure that was supposed to be “right around the corner” wasn’t.  And my family is jaded.  Very jaded.  I’m the only one who works with JDRF and the only one who fights against this disease through fundraisers, events, etc.  If the JDCA really wants to help, it won’t predict a cure date.  Doing so only disillusions and disappoints, leading to apathy. 

  • Pingback: Clarifying Our Last Report: Debate and Discussion « The Juvenile Diabetes Cure Alliance Blog

  • http://strangelydiabetic.com Scott Strange

    Thank you for your reply, tho I of course do have a few comments of my own…

    First of all, the JDRF Mission Statement has ALWAYS specified working towards a cure and treatments for diabetes and it’s complications, there’s really nothing new there. As far as specifying “Cure” in their messaging, that is simple marketing, it’s used for the same reason there is not a picture of an adult on their recent advertisement in the NY Times and Washington Post. Their 2010 Corporate statement says that 67% of research funding was directed at cure research. Not to mention their involvement in getting the Special Diabetes Program renewed, which instructs the NIH to dedicate $150 million towards cure research only.

    I believe the DiaTribe interview was a formal announcement, the Chapters had already gotten the word. DiaTribe is followed by a large number of people, including donors that may not be in regular contact with the JDRF. And their new logo simply acknowledges that living with diabetes is now a much larger issue for diabetics that it was in the past, with the vast majority of us being adults.

    You state: “However, the diabetes market, which is well established and lucrative, already addresses this need. They have financial motivations and competition to hasten new and improved products. ”

    This maybe true for Type 2 diabetes, but the realities of this when I go to the pharmacy to pick up my medications as a Type 1 are this:

    1) there are no generic insulins… but always a new bio-similar on the horizon that is pretty much the equivalent of the one it replaced.

    2) test strips still cost about a dollar each

    It is indeed a lucrative market, for pharma, there is no real incentive to truly innovate. Why? Because many marketing courses discuss insulin as a product that people will pay any price to have, and we will. And one of the things you need with insulin are test strips. Next year, with insurance, I will pay $2,200 out of pocket for diabetes related prescriptions alone, let alone pumping and cgms supplies and appointments. And the year after that, my Flexible Spending Account will be limited to $2,500 by Obamacare.

    If you want to do something to really help people see that cure, work on making living with the condition not so financially draining. And I am just talking about the US here, in may countries a T1 diagnosis is still a death sentence. Did you realize in China, where they have a “One Child” national policy, parents can get permission to have a second child if that first child is diagnosed diabetic?

    If you want to track the transparency of where donations go, fine. However, I still believe that your definition of a “single cure” as a grading point is naive, we still have no idea what is honestly going to work yet. I don’t see how you can put expectations for the JDRF to put all of their eggs in one basket any more than I can see the validity of you stating that 2025 is a criteria for the cure.

    Ask yourself why the cure is important? Is is because of all the expense, pain, suffering caused by diabetes? No, we want a cure so lives can be saved.

    Don’t get me wrong, I want a cure as much as anyone else, but again I say we have to survive long enough to be able to take advantage of that cure. If we don’t have better tools to help us manage our disease, many of us won’t make it. That research saves lives.

  • Pingback: Clarifying Our Latest Report: Debate and Discussion | The Juvenile Diabetes Cure Alliance

  • Stoyan

    H

  • Stoyan

    Thanks for the discussion everyone – even if it is mostly negative! We certainly want to address your questions and concerns.

    Just wanted to share that we’ve talked a bit more with Scott about the issues on the new post I made today: http://jdca2025.wordpress.com/2011/11/14/clarifying-our-last-report-debate-and-discussion/

    I also wanted to address something that was brought up both by Amy Ross and Lee Ann below, which admittedly is probably the most common misconception about our organization: our 2025 timeline.

    We are not a medical organization, and we are NOT saying that we have a cure that will be here by 2025. Nor, unfortunately, are we aware of any work being done at the moment that would necessarily meet that timeline.

    However, our 2025 initiative is based on our findings that with the proper organization and focus, the timeframe for developing a cure, starting from discovery to production and distribution, is 15 years. There are different phases that come with the development of a cure, and we have outlined them in our Establishing a Cure by Date report: http://www.thejdca.org.php5-25.dfw1-2.websitetestlink.com/wp-content/uploads/2011/10/Cure_by_Date_Final-6_20_11.pdf

    Again, we understand that we can not promise when a cure will be ready – but if we unite and work together to change things, and make sure that the donation money that is going specifically for a type 1 cure is being used to that effect, we can maximize our efforts towards developing such a cure within the next 15 years – which would be in our lifetime and allow us to exerience how life would be like without diabetes.

    Thanks again,

    – Stoyan

  • Pingback: Around the Blogosphere – November Edition : DiabetesMine: the all things diabetes blog

  • Anonymous

    Just happened on this post, and I couldn’t agree with you more! The word “cure” is, in itself, a fuzzy concept, because different people seem to have different definitions. For me, it means having a functional pancreas that allows me to eat, drink and be merry with never a thought about my BGs, EVER. And barring some scientific serendipity, I can’t see putting a date on that, because the sciences of immunology, genetics and organ rebuilding are in their infancy.

    I also appreciate the basic science work being conducted on both Type 1 AND Type 2, because there is certainly a cross-fertilization of ideas there, so I don’t wish to only concentrate on Type 1. And I don’t wish to concentrate only on children, which is why I applaud Jeffrey Brewer for his realignment of goals.

    So, thanks for your thoughtful analysis, and keep up the good work!

  • JDRF/JDCA

    I might not be part of the 85 but I do have the very unique distinction of having worked at the JDRF and for the JDCA (contract basis).  I take exception to your second point listed above.  First, JDCA reached out to JDRF repeatedly. Secondly, JDCA employed me, a former JDRF employee.

    Secondly you wrote “Seriously guys, this was 10 months ago and if you had spoken to some folks at the JDRF as I have, you would have known that this has been in progress for a long time, changing the mission like that was not a choice taken lightly and they have taken both heat and gotten support for it.  As a matter of fact, internally, they are still experiencing resistance from some local chapters.”

    Since 2009 JDRF has undergone massive turnover.  While there has always been discussion to focus on results versus pure research, the pace has certainly been slower than most people prefer.  Lastly, as a matter of point, chapters have very little influence on policy unless you are referring to a major donor.  ED’s do NOT weigh in on a Board level.

    • http://strangelydiabetic.com Scott Strange

       Well, the ED’s may have little say at the Board level but the outreach
      is supposed to be happening at the local level, so… they can have a
      definite influence on the program