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From Abby: Medtronic DAF.

Last week, Abby was in California for the Medtronic Diabetes Advocates Forum, visiting Medtronic for the first time and meeting so many members of the DOC, in person, for the first time.  Here's Part One of how things shook out, from her perspective.

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This year, I was fortunate enough to be able to attend the 2nd annual Medtronic Diabetes Advocates Forum, representing SUM. There were a few key thoughts that I'd like to share about this experience, aside from how completely awesome it was to finally meet a ton of DOC people in real life (more on that later). 

I felt hope. Sitting through a lecture about the technology on the horizon gives me so much hope for the future of what our lives will be like with type 1 diabetes. First off, on a technology tip, the Enlight sensor is in reach. The folks at Medtronic wouldn't commit to a time frame, but I got the hopeful feeling it'll be available to patients sooner rather than later. This sensor gives me hope, because it's a step in the right direction. Medtronic has taken our complaints as a patient whole (ex. the sensor is too painful, it's not accurate enough, and it's scary to insert) and they have fixed these problems. THEY FIXED WHAT PATIENTS WANTED FIXED. This is really all I can ask for as a patient, in my opinion.

I also have hope, because sitting at dinner with the director of All Things CGM at Medtronic and seeing the tears in his eyes as he talked about giving parents piece of mind with the mySentry on their nightstand as their child sleeps in a nearby room. I believe that there are people with no personal ties to diabetes, but who truly care about our future.


The attendees of the 2nd Medtronic Diabetes Advocates Forum

I felt guilt. I feel guilty about so many things. After Dr. Fran Kaufman's presentation that focused on the children in the world who struggle to stay alive with type 1 diabetes, who are thankful for every unit of insulin they are given, I feel so incredibly guilty for suggesting someone owes me a piece of technology that takes every ounce of effort out of this disease. I feel guilty about the opportunities I've been given in my life that have lead me to a stable job with health insurance while there are people in my own city who can't afford anything more than one vial of NPH each month.

I felt so thankful. Looking back on the thirteen years my pancreas has been officially "on strike," I have seen incredible advances in the treatment of this stupid disease. I started on NPH and Regular insulin, I ate three meals and three snacks a day. An A1c of 8.0% or less was the goal. There was a very real chance of kidney failure being my demise. Today, I have a machine that is casually stuck to me that infuses insulin - aka "keeps me alive" - without me paying an ounce of attention to it. I have another patch on my skin that alerts me when my blood sugar is out of the range I want it to be in, without me stabbing my finger every time. At this event at Medtronic, I was lucky enough to see a picture of a single, invasive that housed both an insulin infusion cannula and a sensor wire. I talked to a team of people who are creating the technology for an Artificial Pancreas System. How can I not be thankful for what I have, and what I've seen? 

And I felt excited!! I am so excited for the future of diabetes technology. While I feel a potluck of guilt, gratefulness, and hope, a big part of me is just so freaking excited that in the very near future, there is a real chance that there will be a "technology cure" for type 1 diabetes. And heck, I'll take a cure in quotes over no cure at all.

Overall, I had an amazing time. I met people who have my future in their hands (well, sort of) and people who are sharing the same struggles I deal with every day. I carb counted a giant cheeseburger with a group of used-to-be-strangers and compared our dual-wave success for the hours post meal, without stopping to marvel at the fact that we even had the option to dual-wave our insulin.

The future holds some great things for diabetes. But while we are anxious for the next pump or upgraded sensor, we need to be sure that we look back on where diabetes treatment has evolved from, and do what we can to help to those who aren't so lucky.

[Disclosure:  Okay, so this is Kerri, chiming in for Abby to cover this disclosure.  Abby's travel, lodging, and expenses were paid by Medtronic.  She attended this Forum as a representative of Six Until Me, and as a person with diabetes.  She did not receive any payment or product from Medtronic.  Her views and opinions are her own, and Medtronic did not ask her to write about the meeting.  Thus ends the italicized portion of this post.  Over and out.]

Comments

Fantastic post, Abby! I love how you divided the event up by how it made you feel. Brilliant! And I know I felt all those same emotions, and I think everyone else did too.

I'm so happy to have met you, and can't wait till the next time we get to hang out. Any go to Subway. :)

Great recap, Abby! And it was so awesome to meet you!

Great summary Abby!

I look forward to figuring out more about how we can help those less fortunate receive better care.

And I take responsibility for any successes or failures of those cheeseburger dual waves. ;)

Awesome post Abby!

One of your best posts ever Abby! Very thought provoking.

You are a Gem. Kerri is lucky to have you, and I'm lucky to have met you.

We MUST look for a future cure, while also being so thankful, as you mention, for what we now have available to treat diabetes.
Before the discovery of treating type 1 with insulin 90 years ago, there was NO hope.
Your post was an encouragement.
thanks !

Great recap, Abby! I feel all of those same emotions myself, and am trying to get my written thoughts together. Very hopeful is a main takeaway, indeed!

I am disappointed to keep reading reviews of the Enlite sensor that are very negative. I love my Revel pump, but use Dexcom because my 2-1/2 years with the Medtronic sensor were painful and inaccurate.

I'm due for a new pump in about a year. I really miss the CGMS integration with my pump and hate carrying 2 devices. But if the Enlite sensor isn't as good as Dexcom, I may end up with an Animas pump which I think will be a step backwards from the Revel.

I have had TID for 34 years... HOPE, this is an interesting concept for Us Diabetics. My Pediatric Endo. Doc told my MOM in 1978 that there be a cure for Type I Diabetes in 5-10 years. We asked what? He replied "STEM CELLS!" This was way back in 1978!!! The fact is that as long as there is an ECONOMIC COMPONET to this Disease... blood testing, Needles, and Supplies, etc. .... the Health Care Indistry will never have a cure for US ... ie.. NO HOPE. I ran this by all 5 of my different adult Endo Doctors, and they all agreed that there would not be a cure in our life time. I am sorry, but MONEY Wins in this country... ie. Congress will not help us, nor will the big companies. Our only HOPE will come from Canada or a small European counrty. Not here in the USA.

Abby, there is no need for you to feel guilty. You are not asking Medtronic to provide you with an accurate live-saving medical device out of the goodness of thier hearts. Medtronic is a multi-million dollar business that is making a profit out of you. The least we can expect from them is a product that does no harm.

Medronic's refusal to provide an audible alarm is criminal. Dozens/hundreds/who-knows-how-many Medtronic users have complained to them about the fact that the alarms are inaudible in most everyday situations. This issue is putting people's lives at risk. It is not necessary to develop the technology, it has existed for years (remember your first mobile phone?). Medtronic's solution is to provide an additional $3000 piece of machinery (mySentry).

Not only have Medtronic not fixed "what patients wanted fixed", they haven't fixed WHAT WE NEED TO BE FIXED.

Sounds like a great trip Abby! I wish I could have been there. I did a clinical trial for Enlight 2 yrs ago and LOVED it. I would have taken it home with me right there and then, if they had let me. I can't wait for it to hit the market.

Everyone is entitled to their opinion and to select devices that suit their lifestyles and needs best.

I've had amazing experience with my Revel system, my BG numbers match so frequently it's uncanny and I'd be hard pressed to trust my life to another company or device.

Only sharing to add a balance to all the negative comments left behind...

Hi, Abby. I just discovered your site and have really enjoyed the blog entries. One question I had about director of All Things CGM is if he expressed any dismay or embarrassment about how much the MySentry costs ($3000). Also, was there any discussion about whether Medtronic would come out with a version designed for the diabetic themselves rather than for parents of diabetic children. I have trouble waking to vibrating or audible alarms from the pump so the MySentry would be great for me but not at an out of pocket cost of $3000 (or $2400 if the introductory price is still in effect). I could go to an infusion set with longer tubing and keep the pump near my head and may consider that in the future. Thanks for any insights you can provide about the high pricing (and lack of insurance coverage) for the MySentry.

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