Last night and today I'm attending the Medtronic Diabetes Advocate Forum - and I encourage you to follow and participate by following the #medtronicDAF hashtag on the twitter.
If you have anything you'd like me to relay to the folks at medtronic, please feel free to leave a comment or ping me.
Medtronic is covering my expenses including, flight, meals, lodging, etc.
But as always, all thoughts are mine and mine alone - and I will not hesitate to share them!
Showing posts with label #medtronicDAF. Show all posts
Showing posts with label #medtronicDAF. Show all posts
Thursday, April 14, 2016
Thursday, January 16, 2014
My Medtronic Diabetes Advocate Forum Post 1: The Things I Can't Stop Thinking About!
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| The 2014 Medtronic Diabetes Advocate Forum |
I kept thinking: What can I say that hasn’t already been said about the Medtronic Diabetes Advocate Forum - And might I add, said so very eloquently from other members of my DOC family?
How can I accurately articulate all that went down at the forum and in my heart, while incorporating the technical touch points of the forum with the emotions experienced at #medtronicDAF in one post?
That wasn't working for me personally - At least not in this particular post - So many things were being discussed that it's easier for me to break things down in different posts instead of including everything in one.
So I decided to write what I couldn’t stop thinking about first - And write about the science, technology, and the thumbs-up verses thumbs-down later.
This post is about being inspired and re-energized in my diabetes advocacy efforts and in my own abilities to advocate for myself in all dimensions - And hopefully paying forward those feelings of being re-energized and re-committed on to you!
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I was inspired by so many people and things at the Medtronic Diabetes Advocate Forum, a.k.a., #medtronicDAF.
Speaking of, check out today’s post from Bennet and take be a part of the brainstorming via the survey on today’s blog post.
I was incredibly inspired by my fellow D advocates and the Medtronic folks in the room coming together and not just communicating, but really talking with and to one another instead of “at” and regardless of whether or not we agreed with one another or not.
I was (and continue to be,) inspired and blown away by Dr. Francine Kaufman's passion and expertise in treating diabetes. Dr. Francine is a Diabetes Super Shero in my book.
A pediatric Endo who has devoted her career to helping children with diabetes GLOBALLY and hands on via IDF's Life for A Child program.
A pediatric Endo who has devoted her career to helping children with diabetes GLOBALLY and hands on via IDF's Life for A Child program.
Dr. Kaufman was incredibly candid and reminded every single person in the room that it’s not just about us - It’s about every single person in the world living with diabetes.
Dr. Fancine not only talked, but explained in graphic detail about the deplorable conditions in Haiti & other countries for children and adults living with diabetes, she showed us facts followed by examples like but not limited to:
80% morality rate for type 1 diabetics in Haiti - That statistic was backed up by a picture of a child who died because there was no insulin for that child. Every person in the room was crying.
There is no such thing as dialysis in Haiti - If you ended up with renal failure, you’re done.
There is no such thing as dialysis in Haiti - If you ended up with renal failure, you’re done.
Dr. Kaufman told us a story about parents in India who felt it was OK to let their newly diagnosed t1 daughter “go” because she no longer had any worth.
Sidebar: It's not OK, she does have worth, her parents finally "got" that and didn’t let “her go" and today she's alive and doing well~
Dr. Kaufman explained that while t1 treatment in China at the time of diagnoses and in the hospital was great, treatment once the patient went home was anything but.
And because of that, Medtronic and China’s MOH (Ministry of Health) are working together on a care pathway for both children and adults with type 1 diabetes.
Life for A Child also works to provide insulin to people in The United States for those who don't have access to it. During hurricane Katrina, Life for A Child was the first organization to get insulin and supplies. I didn't know that, but I do now.
Life for A Child also works to provide insulin to people in The United States for those who don't have access to it. During hurricane Katrina, Life for A Child was the first organization to get insulin and supplies. I didn't know that, but I do now.
At one point Dr. Kaufman stated: “How do you figure out the next step for pwds in countries where there's no diabetes management, let alone guarantee of insulin?”
Looking over to my right I saw Kerri furiously taking notes as everyone in the room started sharing ideas on how to take 'Spare A Rose, Save A Child', to the stratosphere this year!
It was reminiscent of those old black and white “Andy Hardy” movies with Judy Garland & Mickey Rooney. You know the ones where Mickey & Judy & Company put on a show to raise money and show the world (usually their parents,) what they can do.
And then someone says: I have a barn! And then simultaneously other people start to chime in: I can write the show, I’ll sell tickets,” "I’ll handle the costumes!” And so on - And then all of a sudden they produce a show that saves the day!
YES, I watch too many old movies and I'm OK with that, but back to the D production at hand.
And then someone says: I have a barn! And then simultaneously other people start to chime in: I can write the show, I’ll sell tickets,” "I’ll handle the costumes!” And so on - And then all of a sudden they produce a show that saves the day!
YES, I watch too many old movies and I'm OK with that, but back to the D production at hand.
This D production isn’t about actors fighting over whose name is first on the Marquee or who gets more stage/screen time.
Nope, this production is about BOX OFFICE for the greater good of people globally living the diabetes life. It’s about saving lives. Stay tuned for more info on the 2014 SpareARose campaign - There's a part for you in it! Let's get this D show going!
Finally, I was inspired by David Lee Strasberg, And yes, I see the irony of my movie and stage references, but that wasn’t planned, but it makes me happy!
David is a T1, father of a t1, son of Lee, and Medtronic’s guest speaker/facilitator of the Connecting with Your Core & Diabetes Advocating: Moving Forward Workshops.
David is a method actor (of course he is,) and David tells it like it is. David is a T1, father of a t1, son of Lee, and Medtronic’s guest speaker/facilitator of the Connecting with Your Core & Diabetes Advocating: Moving Forward Workshops.
And he's funny, incredibly intuitive and can read you like a book within a few minutes of talking with you. His first words to the group: I want more communication and less shame with diabetes.
Sound familiar? David is DOC people for sure!
And David taught me (us) that in order to advocate and ask/help for others - I/we need to advocate and ask for myself - And to lead with truth - even if the truth scares me.
David took his talk a step further and directed us in exercises that had us do just that.
I’m going to let you guys in on a secret about me. I can advocate for others in the DOC no problem - And I’m incredibly verbal about advocating for my own health - But when it comes to advocating for myself in all dimensions?? I need to work on it.
Sometimes going for the ask can be paralyzing & it can stop you in your tracks.
I get it, I've experienced it - And I want to move past and embrace all the good that "going for the ask brings.
Sometimes going for the ask can be paralyzing & it can stop you in your tracks.
I get it, I've experienced it - And I want to move past and embrace all the good that "going for the ask brings.
David’s secessions reinforced the fact that in order to be the best advocate for the DOC,
I have to give myself the same permission to go for “the ask,” in life and my life with diabetes - Regardless of the outcome - And regardless of the fear associated with the outcome.
I have to give myself the same permission to go for “the ask,” in life and my life with diabetes - Regardless of the outcome - And regardless of the fear associated with the outcome.
We, each and everyone of us, are not only worth “the ask," we deserve “the ask.”
Sounds simple enough - But for the first time in a very long while that point is sticking with me.
So I’m going "for the ask" and asking you to do the same. And I say damn the torpedoes and the fear of pressing the SEND button can bring!
DO. IT.
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To read more DOC thoughts on the #medtronicDAF checkout these great blogs/podcasts listed in no particular order - And if I'm missing any posts, please let me know and I'll add them, ASAP!
http://rollinginthed.wordpress.com/2014/01/16/whats-in-a-name/ http://www.bittersweetdiabetes.com/2014/01/jump-started.html
http://momentsofwonderful.com/2014/01/medtronic-diabetes-advocate-forum-another-brick-wall/
Full Disclosure: Medtronic paid for my flight lodging and expenses, but all thoughts are mine and mine alone.
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!
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~
Wednesday, April 6, 2011
My Spin Take On The Medtronic Diabetes Advocate Forum ~
GROUP SHOT
It's OK, Dr. Rubin told us that laughter was good for diabetes, so we decided to "yuck-it up" for the camera!
I’m going to be honest with you, I was REALLY nervous about the Medtronic Diabetes Advocate Forum (#medtronicDAF) for several reasons.
As I’ve written before, I was hired as an Independent Consultant by Medtronic for the forum, so of course I wanted Medtronic to be happy.
But just as important, I was nervous because I wanted my community to be happy with the conference; the topics discussed & the end result.
I wanted them to feel like they not only learn some new things, but I also wanted them to feel that they had their questions (at least most of them) answered in the process.
Like the rest of the group, I was nervous because I was excited to learn and have my voice be heard.
And even though I’d attended lots of calls regarding the conference, participating in it was whole different ball game. It was going live and all bets were off!
And lastly, when your attend a diabetes event like Medtronic, Roche, or JDRF Government Day, you want to make sure that your representing those that couldn’t attend. Meaning, it’s just not about representing yourself, it's about representing your community & making sure that others in that community's questions have a chance to be heard.
A caravan of Towne cars and maybe a suburban containing 20 DOC members made their way from Westwood Village to Northridge, Ca, somewhere outside of LA.
Amanda Sheldon, Director of PR gave us a big welcome and the informal tone was set for the day.
The history of Medtronic was talked discussed,(it began in a Minnesota garage), and how Medtronic had listen to what we said about being more involved, which is why they decided to go ahead with this forum.
Carelink being mac compatible in the very near future was also mentioned!
Amanda introduced the group to Katie Syzman, President of Diabetes Business for Medtronic, who discussed Medtronic and her personal relationship to diabetes.
Next, an iphone/iPad app that Medtronic is currently working on called: My MedtronicConnect was introduced .
The app is in it’s “testing’ phase right now. Basically the app allows you to order your pump supplies on line, and input your pump settings.
Meri, from Our Diabetic Life made a really great observation about the app later in the day!
Meri felt that the app should have several pages for pump settings because some families, (wink, wink) have more than one person who wears a pump.
And to Medtronic busted out with saying: That’s a great idea!
And yeah, it totally was!
There was a lot of honest talking between both sides, and not all of it polite.
We voiced our frustrations and they listen and no one was shy!
But I have too admit admit, I really saw pump & CGM companies (and their challenges) in a whole new light.
Members of the DOC listening to Lane Desborough's observations on well, everything!
To explain that "whole new light," I'm going to paraphrase Lane Desborough, Medtronic Strategist, father of a type 1 son & a really smart guy.
Lane explained the whole Elephant Verses The Hummingbird mentality.
In simple terms, the challenge that Medtronic (and everyone else in the pump/CGM arena for that matter) faces is that the changes in technology are happening at such a crazy pace, that other industries can’t keep up and are incredibly SLOW to change.
FYI: The FDA is the elephant in the Diabetes Room and the swarms of hummingbirds furiously flapping their wings are the insulin pump and CGM companies.
And before you say: Everybody blames the FDA for tying their hands!
Think about this fact that one of our fellow Bloggers brought up in the car after the forum - I think I know who it was, but I need to confirm with him before I print his name.
Drug companies pour millions into creating drugs (and buying & sitting on patents for said drugs) and then they pimp those drugs and sit on those patents (my wording) until they get every last dime (and so very much more) that they put into those drugs.
On the other hand, durable medical equipment (like pumps and CGMs) only have a four-year warranty before the consumer can get a new one.
As a woman who loves her options, I absolutely think four years is an eternity, especially when your talking about being tethered to any product, but durable medical equipment companies only have four years to get the upcoming technology right and bring us back for another four years!
And according to the Product developers we met with, sometime prototypes are scrapped 75% into the design because of the hummingbirds effect!
Being stopped in their tracks by the FDA can’t be good for business – I don’t care what pump company your considering!
Sidebar: Bernard Ferrell, who had been invited to attend the event, but had been snowed in sent me the following tweet:
@BernardF
@diabetesalic If industry keeps us informed, DOC might act as experts +testify to FDA, I've done this in the past.
I relayed Bernard's message to Lane and he whole heartedly agreed!
Then, we had the chance to speak with Greg Meehan, VP of CGM Business, who said something about Medtronic that really stuck on my brain.
He basically said that up until 8 years ago, when Medtronic acquired Minimed, Medtronic had been an purely an implantables company (and my head I kept thinking of the phrase, set it & forget it) and that insulin pump users were entirely different kind of customer to them - and this fact really hit home for me.
Full Disclosure & sidebar: My mom has worn 3 different incarnations of a Medtronic Defibrillator/Pacemaker since 1991, and it's an entirely different animal than our pumps.
Her Defibrillator/Pacemaker does it's job and is an invisible presence.
She gets "scanned" at her cardiologists office every three months to see the history of her heart beats. The only time her internal hardware makes itself known, is when her heart goes all arrythmic.
And then it literally jolted my mom's heart rhythm back to the correct beat. Even when the battery started to wear out, she had something like a three month window to change it.
But she never sees it, except when they remove her old one and replaced it with a new one - and her nosey kids ask the surgeon if they can checkout the old one.
We are totally different clients with totally different needs.
Then Greg said that it took Medtronic some time to figure that fact out
“Up until 8 years ago, I don’t know if we could spell the word "customer” properly."
But times have changed, and Greg made it crystal clear that they had learned from their errors in spelling.
They'd increased their Customer Service hours of operation, added the MyLearning area on the website and asked more questions to their clients about their wants and needs.
I was impressed that Greg acknowledged a previous issue and put it out in the open to let us know that they were aware of it.
And I'm glad that Medtronic took the proper steps and made changes to help their clients!
Next up, Dr. Francine Kauffman spoke with us at lunch and after re: clinical studies with insulin pumps & CGMs.
Dr. Richard Rubin telling us (both literally and figuratively) that living w/diabetes
can be REALLY frustrating!
Dr. Kauffman then introduced Dr. Richard Rubin from John Hopkins, who gave an impressive talk on Diabetes Burnout. And you know what? He knocked it out of the park, folks!
Dr. Rubin grew up quick, because his little sister was diagnosed with type 1 when he was a child. And 20 years to the day, his son was diagnosed with type 1.
Dr. Rubin was as one of the first (I really want to say he's the first) to see that people with diabetes have a lot going on in their minds - and carry a lot in their hearts - I just love him!
He made every single one of us in the room feel validated for experiencing our mental diabetes highs and lows and he made every single one of us laugh, cry, and learn!
I wish that I could have talked more with Dr. Rubin, because I really learned so much about myself during his talk.
Thanks Dr. Rubin!
FYI: Dr. Rubin says laughing is good for our diabetes, so laugh loudly, and often!
SEE THE PIC below for some LOL inspiration!
Umpa Lumpas or members of the DOC in disguise?
Next, it was off to a group tour of the where they made the cgm sensors. And for something so incredibly high-tech, there was a lot of tedious and meticulous work done by hand!
So much goes into what we wear on our bodies as people with diabetes, and it just blows my mind and I'll never look at a CGM sensor the same way again!
Finally, our day was done, and it was back to the hotel & then off to a dinner hosted by Medtronic.
As for the day, I’m still processing it ALL and I will continue to do so for quite some time.
Are all our problems with our diabetes outerwear & inner wear solved?
Hell no!
But I do believe that we all walked away with a better understanding of one another.
Personally, I learned a lot, I think we all did, including Medtronic.
And that’s a wonderful thing.
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Click HERE if your interested in reading Medtronic’s take on the day, and their list to other Forum participants’ posts.
Full Disclosure: Yes, Medtronic DID pay me to consult on this project before the big day.
My personal goal was to have all parties involved in the forum walk away with a better understanding each other.
While I was at the conference, Medtronic paid for my airfare, hotel & most of my expenses.
Here’s the thing, they didn’t pay me to write a post or put thoughts in my head re: said post.
My thoughts are my own and come from my diabetesalicious brain.
Me wearing a super terrific & snazzy one size fits all, XXXXXL "clean" paper suit & splashing it across the net!
Why am I posting this highly embarassing pic? Because I love you guys!
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