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Cure and Hope Are Four-Letter Words March 7, 2013

Posted by laosita in diabetes.
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This week has been one of posts about cures, hope, disappointment and encouragement because of an announcement made pertaining to a ‘cure’. The posts have been superb, and I’m so proud to be in this community right now. Check out links in this post, or my blogroll, for some phenomenal DOC reads and thoughts.

Hope. Cure. Technically, these are four-letter words. I use the less appropriate four-letter words more often. In the almost 25 years I’ve lived with diabetes, not once did I think I would be cured and never will I believe a cure is in my future.

While I don’t remember anyone telling me specifically ‘They’re working on a cure, hang tight 5 to 10 years’, I do recall countless reports of ‘cures’ in the next 5 to 10 years. As so many DOC members have shared, they would be cured twice or three times if that were true.

I do not believe in a cure in my lifetime. And I do not hope for it. Say a cure is discovered tomorrow. Great. That does not mean shit for me. Not every diabetic will be cured the day after FDA approval. FDA approved does not equate to accessibility. My control, as compared to ADA guidelines, is solid. Therefore insurance might tell me I don’t ‘need’ the cure. People with ‘out of range’ A1Cs or high risk of complications would top this cure list.

No eligibility restrictions? Cool. My health insurance rocks, so I might be in. But a cure comes with its own set of restrictions. A whole new way to care of my body, to care for whatever extra precautions I might need to take. Transplants come with a slew of issues the patient must be aware of and manage. I am not sure I would be willing to change my day-to-day responsibilities – that I’ve managed for two decades – for something brand new.

And what about folks without awesome health insurance? What percentage of PWDs would love a CGM or a pump, and CANNOT GET ONE because of cost or insurance issues? Kiddos in poorer nations cannot get daily insulin injections. In those countries, diabetes is still a death sentence. That.Is.Bullshit. The people who need a cure the most won’t be the ones to get it.

Hope for a cure is too uncomfortable, too foolish, too selfish for me*.

However. Hope for technology advancements, for improved education and for prevention – I am onboard with that. That is why I participate in the community. That is why I support JDRF, ADA, the DOC, mentors, educators, endos, scientists and studies.  And to me, that is as important as the cure is for a parent with a newly diagnosed kid.

But a cure is not something to count on. It is not something to teach your kid or your peers to count on. The goal of any diabetic is to survive and to live life. That is anybody’s goal. Yeah, your pancreas screwed you over. Use that to make you a better person. Is it easy? Never. Fun? There are upsides, but no not really. But You Can Do This. Having diabetes makes you smarter about your choices. Makes you responsible. Makes you grateful. Would I ever wish diabetes on anyone? Hell No. But for those of us with whacked-out pancreases, don’t let hope for a cure distract you from your achievements. We have enough distractions.

*Note: I respect those of you hopeful for a cure. It’s just not me. Truly, you make a difference. Truly, you contribute to a worthy and admirable cause.

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But I Am Going to Tell You The Truth July 25, 2012

Posted by laosita in diabetes.
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A presenter who is a scientist is very different than a scientist who happens to do presentations. And by scientist I mean researcher, doctor, super-smart person. Dr Ronald Gill presented the research update at Saturday’s JDRF Reach & Teach U event. I immediately liked him as he said: I’m not going to tell you there’s a cure around the corner. But I am going to tell you the truth.

Thank goodness. Hope makes me tired, particularly in learning environments. FFL was an awesome experience and one that, at some point, I hope to have again. But if there was such a thing as too hopeful, you’d find it there. I respect the idea of hope and the ability to have hope for any length of time, but that’s not necessarily how I roll. I don’t remember not living with diabetes (except for one ridiculous self-scissored hair cut), and I’ve been lucky enough to have resources available to me so I can successfully thrive with this disease. I don’t believe a true cure exists in my lifetime. However, as the DOC has blogged before, a cure can mean something different for each person.

But back to Dr Gill, he eloquently expressed his knowledge regarding Type 1 diabetes research. To him, a cure means preventing the disease, turning it around after onset, plus a true cure. I hurt just a little bit when a mom to a newly diagnosed 8-year-old asked, well, how far away is this and aren’t they doing studies mostly on adults? It will be 5 years before he’s even a teenager.

I recognized the fear and blind hope in her voice. But the first thing I thought was, sorry Mom, I’m not sure what you’re waiting for in the next 5 years. I know CGMs, pumps and insulins will improve. But a cure, no way. (Dr G reported that studies are beginning to include more under-age subjects.)

Moving on to what I meant to share, Dr Gill described some top advancements.

  • Artificial pancreas. Pump/CGM working together without help from broken-pancreas person. Key issue here is safety (also the area that FDA is consistently held up on). For example, what if the CGM sends a 400 BG to the pump, the pump delivers 8 units of insulin, but you were actually 82?
  • Islet replacement and beta-cell therapy. I learned here about encapsulation. The cell must ‘hide’ from the immune system otherwise the immune system goes after it again. Polymers or even seaweed are possible options to encapsulate the cells.
  • Smart insulin. The insulin binds to a molecule (and is injected), as glucose in the body increases, the glucose tries to bind to this molecule thus knocking off an insulin which is then released to lower glucose levels (obviously that is not the scientific version).

JDRF did not ask me to write about this event. I attended this event using my own resources, and any medical statements in this post are written as I understood them. Do your own research or talk with a medical professional to review accurate scientific information- I barely passed Chem 101.