Saturday, March 9, 2013

The Cure Thus Far

Two words that PWDs (Persons with Diabetes), parents of CWDs (Children with Diabetes), and their support networks hope for.

For many, they live, breathe and even die, hoping.

This is The Cure
We struggle with it every day. We poke our fingers, and some poke their fingers of their children. Pods are installed, infusion sets and sensors are inserted, often with tears, either tears of the children who are having them inserted, or tears of the parents doing the inserting. Yes, it makes sense to want a cure. Who wants this?

I have lived with type 1 diabetes for almost 25 years. It is safe to say I am one of the experienced ones. But it is also enough time to become jaded by "cures" that are just around the corner. In fact, when I hear the words "diabetic mice have been cured…", my heart sinks. I remember I waited 10 years, the latter of the "5 to 10 year" year assurance that my doctor gave me. At the time, I clung to that, for 10 years.

I've seen studies come and go. The latest and greatest seeming to be the DRI's Biohub, quite possibly a remarkable technology and initiative. not without the excitement, and cynicism, that goes along with such an initiative.

But what really bugs me, is that as much as this may me am important step forward, I do not appreciate the emotional plea being made to those of us with diabetes. I watched the video, with a kind of dread - the kind of dread that I would hear those words.

I was not disappointed.

The video started out with - cue the dramatic music and serious looking scientists and doctors - high level info about the BioHub - who what why etc.  I'm sure it would do everything except butter my toast (but it would deliver the appropriate insulin for the carbs in said toast). However, it glossed over challenges and hurdles which are inherent in any new technology. It barely touched on the possibility that antirejection drugs would be needed, and it didn't even mention that it would be appropriate only for certain groups of people with severe diabetes. It did not say that it was a surgical procedure with the inherent surgical risks.

And did you catch it? When the voice over said "scientosts would tie off a veinous sac"? Scientists?? Really, even the script had issues.

Then came the real catch - that with limited available funding drom the government (of course), without MY help, it wouldn't happen. They wantonly threw up fresh faces of hopeful diabetics. Sprinkled throughout was the testimonial of a lady who had islet cell transplant - um, not the same procedure I might add, who couldn't believe how amazing this was.

Then at the end, as in any good funding game, they hit the home run with the beautiful face of a young child. I am left with the impression - this is somehow my responsibility? This young child may not be cured because I haven't opened my wallet yet?! Really???

Are we - those who have diabetes - their first stop? Their only stop? Have they even bothered to petition traditional funding sources? What about the very university they are associated with. What about corporate sponsorships? Partnerships and the pooling of resources? How much have they raised so far? How much do they need?

And who are these researchers from other countries. I saw many countries scrolling across the screen, and even Canada was mentioned, where I live. But Canada is a big place. Who is it they are working with in Canada?

So where are the pie charts?? Where are the charts with pretty colours that show what they have achieved, and what they have tried. Charts that track their successes so far. I saw nothing of the like in this video.

I'm not saying it hasn't happened, however, they also didn't disclose it in this video. Because I think all that real stuff would just wreck the emotional appeal of the video. What this boils down to is a wanton emotional appeal for funds - appealing to those hopeful, who aren't jaded like me, and perhaps the cure can be found on the backs of those of us who want the cure most. Those of us who are hopeful to find The Cure.

I am all for The Cure. I'm all for researching and supporting the Cure. But until I hear more, it's not going to be me.


  1. My biggest "technical" gripe with the video was the repeated use of the phrase "islet cells". Islets are not cells - they are parts of the pancreas that contain various types of cells, insulin-producing Betas being just one of them. It is clear that this was the works of PR, and not of the doctors and scientists.

    So while we can be critical of the DRI's public-relations, the video does show some some glimpses into scientific progress. Admittedly these are just small steps not worthy of the hype, but they are steps. I hope that DRI's research and progress to-date isn't outcast as well. We can use all the help we can get.

  2. I agree, and I hadn't caught that either. Despite my critique, I think that they should move ahead, and should still seek funding. It was unfortunate that they built it around the hype and excitement of a cure, creating a premature hype. I'm not sure about whether we can separate PR content from actual discovery. In the hours after it was posted, I saw some very emotional and excited posts on Youtube, which broke my heart because they were truly excited to the point of tears - that their children should be signed up asap. Of course, we are nowhere near that point. I believe that if this is truly something viable, they will find their way. We can be a part of the way, but I do hope that they have learned that this kind of PR may not be the best way to reach out. Give us the facts, in a clear manner, and tell us where we're at and what they need.