05 March 2013

A Sense of Hope

A cure. The end of diabetes. The idea that my child might gain a reprieve from this disease. These symbolize things and ideas I not only refused to believe in - but something I challenged Miss N's endocrine doctor over on Day One. She had it coming - she used those infamous words... right around the corner, and five years. Day one, and I immediately recognized those phrases, and the underlying notion, as a bunch of malarkey. 

Not that I subscribe to a pessimistic viewpoint. I just don't believe doctors have the right to give false hope, or to take a patients hope away. Between my journey towards a degree in Molecular, Cellular Biology and my work as a registered nurse in acute care and hospice, I've seen plenty of both. In the two years and a week since diagnosis I've learned that patients living with type 1 diabetes for 30+ years suffered that refrain from their own Day One, and again and again as the years, then decades, passed by. 

My take on the idea of a cure encompasses supporting research, but not getting too excited; keeping our focus on healthy management and learning to live with D without letting D take over. I don't lack faith in a cure someday, but doubt that one in my child's lifetime proves unlikely. Until yesterday...

I read a post by Diabetes Dad over on his blog. It create some level of curiosity. At 10:08pm last night, while attempting to keep myself awake for the next BG check (unplanned new pump site - at bedtime, a not so great idea), the promised DRI link went live. Of course I jumped on it. 

Wow. I read. I cried. Keep in mind, I'm the quintessential don't talk to me about close loop pump / cgm systems, I'll never trust an implanted machine to do all the thinking / analyzing / work kinda gal. In fact, I pretty much expect that what we're doing now works, for the most part, and I don't expect that to change in her lifetime - at least not before Miss N reaches senior citizen status. Last night? That changed. 

Words like impressive, possible, not that far off swim through my mind. I admit to some level of surprise at the lack of enthusiasm bordering on anger I've encountered within the DOC by this latest we're close to the cure revelation. More so, I'm surprised at my own sense of hope in light of the news release. I truly believe that a cure is now possible, and not necessarily that far off. 

The research scientists at the DRI have proven their sheer genius - and an uncanny but much needed ability to collaborate and work multiple avenues towards a true biological cure - and the BioHub really is just that. A bio-engineered, (perhaps some component of nanotechnology) mini organ with vascular support and the appropriate helper cells to ensure viability. 

See, that's the problem with islet cell transplantation right now. Not only is it cost prohibitive at $250K / transplant, and a life time of anti-rejection therapy - something we can't even begin to contemplate for our youth. The islet cells in transplants don't last - the autoimmune process that attacked our child's pancreas in the first place attacks them, lack of oxygen, inflammation caused by seeding them into the liver - all these things place a finite time on the bio-availability and functionality of islet cells following transplant. Available only to those between 18 and 65 who struggle with the hardest to control cases of type 1, islet cell transplants involve trading one set of problems for another. Kim White does an amazing job of sharing the realities in her own blog

The folks over at DRI address all of that in the various approaches to the biohub - including the possibility of local versus systemic anti-rejection therapy, encapsulation that will protect the islet cells from autoimmune destruction, placement in an area of the body that would provide a rich vascular supply (oxygen and nutrients.) This isn't mere theory, or testing in animals, this is years of work by multiple scientists and research centers coming together and converging in what will likely be a true cure. Imagine implanting a device no larger than a quarter, and no longer needing insulin to manage blood sugars!! 

picture courtesy of DRI
One thing is for sure - everyone in the DOC is talking about this today, regardless of whether they trust this new avenue of research, feel it's another empty promise of 5 years, or share my excitement and enthusiasm. Nearly every DOC advocate and blogger has written about it sometime in the last 18 hours, and more is sure to come. Personally, I like the A Safe House for Islets  article best - especially from an informational standpoint. I find it of great comfort that Dr. Camillo Ricordi and others involved in this project want to avoid raising false hopes or promising timelines they can't meet. Their goal remains developing an accessible cure for millions - not a mere stop-gap management tool or sort of cure for thousands. 

The reality is that the DRI has achieved FDA go ahead for research and development, with human trials only one to two years off. Nothing we've heard about with the mice and other potential cure research avenues has reached this milestone - until now. (Personal disclaimer, I don't regard implanted closed loop pump / cgm systems a cure, but rather a more invasive maintenance system.)  And for once - I feel a genuine sense of hope about the possibility of a cure for type 1 diabetes.

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