Spare A Rose

Life for a Child

Thursday, April 12, 2012

My THoughts On The 2nd Annual Medtronic Diabetes Advocate Forum ~


Members of The DOC @ The 2nd Annual Medtronic Diabetes Advocate Forum

So it’s taken me a while, (plus a teaser post before my real post) but here are my thoughts regarding the 2nd Annual Medtronic Diabetes Advocate Forum.
I was feeling all sorts of things as I headed to the airport to fly cross country to the Forum, including sleepy - I had to be at Philadelphia at 5:30 a..m after all!

I was excited
I wasn’t quite sure all that was in store for us, but I knew it would be interesting and informative and I knew our group wouldn’t be shy in their opinions. So yes, I was very excited!
And I was weary of traveling (there had been a bomb scare at Philadelphia international Airport the morning I flew out,) so seeing my fellow bloggers was comforting on many levels.
The day of the Forum was all about Closed Loops, CGMs, Pharma participating in Social Media, Lenny The Lion & Build A Bear working together, and Diabetes connection to Rocket Science (LANE DESBOROUGH,) Global Citizenship regarding diabetes in third world countries and the Book of Better.

It was a hell of a lot to take in, and I’ve been marinating on all that went down a week and a half ago.

My Thoughts:
Diabetes Bloggers and Pharma sitting at the same table and discussing diabetes is not a bad thing. As long as everyone stays on the straight and narrow and keeps their eyes on what’s important: The Patient and what the patient NEEDS and WANTS.

And the diabetes patient and pump user was the primary discussion of the day.
Did Medtronic share with us what they are working on? YES they did - But why wouldn’t they?
And it turns out, they’re working on a lot.
As a person who has lived with diabetes for close to 35 years, I want to know what’s down the Diabetes Pike, so to speak.
HELLS YA I want to know what Pharma is doing to make my life easier while directly addressing all my concerns.
And I want Pharma to ‘keep me in the loop,”not out.
My (and by ME, I mean OUR) diabetes lives depends on being kept in the loop. And no pun intended regarding the term(s) THE LOOP or LOOP, as in Closed Loop.

SO I was glad to hear Greg Mehan (GM of Medtronic’s CGM Business Division) talk to us about the Artificial Pancreas, (Closed Loop) system and how Medtronic ( like other diabetes companies) are working on a closed loop system.
I’m all for diabetes options because my pancreas has been broken for almost 35 years - I wouldn’t mind a closed loop system while I’m waiting on a cure.
I want a pump that can suspend my insulin when my glucose is low and I want to know before my numbers head south that they are actually going south.. Right now that pump technology is available in Europe - Medtronic with the Veo Insulin Pump and Animas with the Vibe Insulin Pump. Unfortunately in the US, we are still waiting.

We learned that Medronic is working on Patch Pump, though no dates could be given as to when we could see a prototype - though we kept asking!
We were given a demonstration of MySentry , Meddtronic's Remote GLucose Monitoring System, its features including alarms, privacy screens, etc.
I know from others in the DOC how convenient having a CGM monitoring system with a screen and without is for a parent of a child with diabetes - And as an adult.. And s a single woman living with diabetes, I would love to be able to look at the nightstand and see in what direction my numbers are trending - Even though I'm no longer all cute and fuzzy, I still have diabetes!

At the end of the day, we as a group were each offered a three- month trial of the MySentry.

Were we shocked?? Yes we were - and we all felt excited and concerned all at the same time.

I think collectively we are aware of the ethical concerns taking Medtronic up on their offer, which our friend Scottie J brings up here.
I don’t want people to think that we as a group are group are unethical - because that’s not the case.
And I know that all of us are up front and honest in the DOC when it comes to any product we try or relationship we have. I also know that we call it like we see it - Or in our case, blog it like we see it!

FYI: Videos of the MySentry presentation can be found via Kim and Sarah's posts.

Here's the thing: I’d like to take medtronic up on the trial. I've been experiencing major middle of the night lows the past few months and I live alone. I even had one in my hotel room the Saturday I stayed in L.A.
Karen G and I were sharing a room Saturday night after the conference and she actually woke me up because I was talking in my sleep about ironically, being low - which of course I was!
And I always wake up when I'm low - THANKFULLY.
But I have to admit, I was totally thrown off kilter when Karen woke me up and said that she was worried I was low because I was talking about being low in my sleep. It sort of freaked me out.

I think it would be great to review the product and get hopefully get a better handle (or at least a grip) regarding my blood sugars - At least in theory. And I'd like to see if it actually tracks, pre-predict lows and highs and trend my numbers like it's supposed to.

And me being me, I would write about my experiences and share them with you. And I mean all of them -The good, the bad and the diabetesalicious of it all, and no holds barred so that others reading could get the 4-1-1 on the product before they consider purchasing or trying to get it pushed through their insurance.

What do you guys think?

Diabetes Rocket Scientists
Our group got to peak inside the Diabetes Rocket Scientist Brain Trust that is Lane Desborough and his crew. Lane’s group is responsible for the Closing the Loop for Medtronic. They literally Diabetes Rocket Scientists and Engineers and personally, I’ve never felt so incredibly not so smart and inspired all at the same time as I did with this group.

Blogger Roundtable Discussion
Next there was a Roundtable about the Pharma engaging in Social Media to help the On-line Community helping facilitated by Kelly Close, George Simmons and myself.
The three of us worked hard on coming up with the questions but had no doubt our group could provide the answers - And they did! Checkout David Edelman’s play by play, here.


Global Citizenship and Diabetes
Dr Francine Kaufman ‘s (Medtronic’s Chief Medical Officer, Pediatric Endo and Mom to several children with diabetes) presentation on Diabetes in Third World Countries and her work with Life for Child made me cry, it made me angry, and it made me want to change things.
Fran has travelled all over the globe to help children with diabetes in third world countries and their families .
In India for example, young girls with diabetes aren’t considered worth saving! If they survive to young adulthood and end up in an arranged marriage, they hide the fact that they take insulin and have diabetes.
In Haiti, there are medical tents for those with diabetes, but no meters, no refrigeration and barely enough insulin.
The images she brought back haunt me every day. To learn more about how you can help children with diabetes in third world countries, go to: http://www.idf.org/lifeforachildand find out how you can help make a difference.

Lions Are More Cuddly Than Navel Oranges
Medtronic’s own Diabetes Ambassador, Lenny The Lion has a new interactive site for kids and has partnered with Build A Bear, so that when a patient get’s a Lenny The Lion, they also can get an gift certificate to Build A Bear.
As an 8 year whose only diabetes centric pal given to her by the hospital was an actual navel orange to practice injecting saline ( which simulated insulin) into, I love the fact that kids can have a pal with diabetes - especially one who wears a pump.
Personally, I’d love to see medtronic take it a step further by giving Lenny some siblings, (Maybe Larry and Leona?) a brother and a sister to be exact, because while children with diabetes have a lot on their plates, so do their siblings - BIG TIME. And yes, I brought the sibling question up during the forum, and Medtronic seemed to like it.

Bottom Line
All in all, I learned a lot and Medtronic answered our questions head on.
I left the forum feeling good ad like some good was done.
And I’m excited to see what the future holds regarding diabetes technology, because I lived through a time when there was no such thing as Diabetes Technology - And it sucked.
People who survived the Diabetes Dark Ages had their health compromised because there was no such thing as glucose testing, fast acting insulins or insulin pumps. Today we take Diabetes Technology for granted, and it wasn't so long ago when there was no diabetes technology.
Today, I (and by "I" I mean "We") get to ask the questions to Pharma personally - And they try and answer.
Granted, it's not always the answer we want - But I know my/our voice is being heard.

Dialogue is wonderful thing - And I for one will keep this conversation going~

Disclosure
Medtronic invited me to attend their Forum and paid for all my travel expenses, lodging, and food for the duration of the event. Medtronic also payed me a small honorarium for planning/hosting the Diabetes RoundTable Discussion.
Members of the DOC who attended the Forum have been invited to try the MySentry CGM system for three months - And I’m seriously considering it.
Medtronic did not ask me to comment or write about my experiences, nor have they asked that they review anything I might write about regarding my experience at their Forum or with their products. But me being me, I’ll absolutely write about the good, the bad, and the diabetesalicious of it all~

7 comments:

Amy@Diapeepees said...

I think you should try sentry and blog away. Of course it's hard to stay totally honest when you're given a product for free and feel some sense of allegiance to the co., but do your best and just state the obvious. I know so many d-folks come here to find out what is big in the d world, and you'll probably be helping a lot of people out (and yourself) by exposing everyone to it.

Karen said...

I'm so glad I was there to have your back during that night-time low. And I think you should definitely try the mySentry. You don't have to talk about it on your blog if you don't want to - I believe we only agreed to give our opinions in a survey before and after we use it. But, of course, if you want to share on your blog, I don't see a problem with that either!!

Virginia Ray said...

I agree with Amy -- go for the Sentry and let the rest of know what you think. I haven't read much on your blog in the past, but will start now -- you sound a bit like me, (except I've got 40 years behind me) in that night-time lows are my arch enemy and piss me off more than just about anything.

Kelly said...

Awesome info! I hope you take Medtronic up on the Sentry :) I'd love to know that it helps your "peace" of mind!

StephenS said...

Kelly, I'll tell you what I've told others. The offer, to me, appears to be Medtronic marketing at its finest. However, if they hadn't made the offer to your group at the forum, you can bet they would have made the offer to someone else. So if you feel like it's a good idea to try this, you should. And please tell us about it. From what I've read, I would rather hear about it from the DOC than from a rep in the field. Good luck.

Michael Hoskins said...

Great recap, K2! Was a great experience hearing what's on tap and seeing the people behind these products that touch so many D-lives. I've been struggling with the mySentry offer myself, and believe that telling the stories is (as Stephen commented) a valuable service that is better and more honest coming from us than the sales reps in the field. None of us will be shy about voicing our opinions on the product, good or bad. And that's what will do the most good for our community. So, I'd echo what others say about going forward with it!

shannon said...

thanks fr the recap! so much info! i say go for the trial. everyone who has ever read your blog knows you'll give nothing but your honest opinion, pro or con!