My Spin on the Roche / Diabetes Social Media Summit

The Diabetes Social Media Summit "Think Tank" Picture courtesy of Roche.

For a numbered legend of the photo and links to each person click here 

Thanks tudiabetes!

Many a post is already up regarding Roche’s new Media Summit- I needed a few days to rap my head around what I had just been a part of.

First off, BIG THANKS to Amy for making it happen and asking me to be a part of something that was not just historic, but incredibly life changing!

Second set of BIG THANKS go to Roche, who extended the invite and were incredibly brave to invite us all out, on their dime, and for listening to what we as Patient Bloggers  and Patients had to say - both positive and negative. As a group, we were not at a loss for words and thefact that they were willing to listen, no holds bared, was incredible!

The Day started off on an annoying note at Philadelphia International Airport when I was unable to update Diabetesaliciousness from my Blogger account via my iPhone - I even approached another iphone user at the airport and he had no luck getting the keyboard to appear in the blogger account either.

On a positive note- Leeann from The Butter Compartment was sitting at the terminal when I arrived and we were happy to find out that we were on the same plane!

The flight left about 20 minutes late but was uneventful.  The plane was a shuttle and I was happy when we landed.

When we arrived in Indiana, Leeann ran to baggage claim and I ran to the rest room. When we met up again, we were joined by  Bennet, from Your Diabetes May Vary,

who had also been on our plane.

We were met by a Driver whose name I forget, and who was not a  Roche employee, but an employee of a shuttle company whom Roche works with.  MORE ON THIS LATER.

In the lobby we were greeted by Scott S, Joe, and Gina- all whom I’d met before. Lot’s of hugs ensued and I ran up to my room to get dressed for Dinner, then I ran back to the lobby where I ran into William Lee Dubois- except I wasn’t sure if it was him or not so I just said “Hello” and smiled. We had the opportunity to talk in ernest later on.

D Ladies in the house!

At the Bar I ran into more Diabetes folks I'd met IRL; Fran, Kerri, Amy,and Bernard who I'd met on previous D-outtings, and  immediately met Chris, Scottie J, Sandra,  David from Diabetes Daily, Kitty (who I'd talked with on the phone) and Crystal for the first time in Real LIfe. 

I also met and  talked with both Brandy from Diabetic Sisters and Jeff Hitchcock from Children With Diabetes, , but not nearly enough, but they were awesome just the same!

 When I turned to my left there was Charlie Cherry from Diabetes Power Hour, all dressed in black and very Johnny Cash like, standing next to Chris from Diabetic Rockstar. 

The bar was Diabetes Blog Central and the Roche reps had a difficult time getting us out of the lobby- it was like a class reunion and people 

Scott S & his "Angels" 

were hugging, chatting, taking pics and buying drinks. We literally could have stayed there all night!

I was standing next to Amy T, Fran C, and Riva Greenberg when a Roche rep grabbed us and steered us towards the hotel entrance “ We need to start filling up the shuttle to the restaurant, so a group of us got on the shuttle and began bonding even more.

We arrived at Maggiano’s and walked into a dinning room filled with Roche Reps from every department. They walked up to us and immediately started engaging us in conversation – and we did the same. It was very strange and flattering to hear one’s blog quoted from the folks at Roche-I’m glad they did their research!

Half way into the  "getting to know you portion of the evening I would meet Ninjbetic (and ran across the dining room to hug him tight) and  CALPUMPER  in the flesh, both who experienced flight delays, for the first time- and they are wonderful!

 Dinner at Maggiano’s has been described as a 7h grade dance with Roche employees interested in life with diabetes and DBloggers willing to share. And that’s exactly what it was! I believe both sides walked away from the evening knowing the other on a personal level, and a great time was had by all!

At the Dinner/Dance with my boys!

Room 966 A.K.A - The Room of Shared Stories...and a Stalker Free Zone for those being stalked by Tim

After more chatting and giggling, we got down to the business of sharing our D story. It was amazing and I’m not sure if I can put it all into words, except to say, at that very moment there’s no place I would have rather been.

When It was my turn, I took a deep breath- (FYI, I am usually NEVER at a loss for words regarding life with D) but I have to tell you, as I looked around at the faces in room 966, I felt that I was looking into the eyes of my Diabetes, past, present, and future. And for one split second, I thought of a particular face that would have benefited the most from the DOC, but had left this world back in 1991. The emotion that had been welling inside me all night, came to the surface and I couldn’t hold back.

I talked about my “D Story” and I’m really not sure exactly what I said,

but I do remember at one point I broke my own “There’s no crying in baseball” rule and my voice began to faltered. I started to cry tears of acceptance and joy, of loss and happiness all rolled into one.

G-Ninja opened his arms and hugged me tight and made me laugh, and in that room, I felt safe.

Room 966 was also protected Chris’s virtue from his stalker Tim- so it was truly a safe haven for all!

Thursday – The Summit-

The Summit itself was 8 hours of intense Dialogue between the diabetes communities expressing our wants needs and concerns with Roche.

The first part of the morning was devoted to ways in which to reach out to the patient population, creating guidelines, and  a Manifesto for both Pharma and Patient Bloggers to follow in Social Media. Both Manny & Amy have detailed breakdowns-GO READ THEM if you haven’t already.

Roche and other Pharmaceutical companies want to enter the world of New Media and as Diabetes consumers, and we want them to- absolutely. But we,as Patient Bloggers, Patients, and Consumers require that Pharma's participation is done in a way that’s honest and upfront, and in a way where we the consumer concerns will not only be heard, but validated.

During a lunch breakout session, I told Dan Majestic, Director of Sales for Roche, “That Diabetes is a Technology based disease and we need to be able to afford the technology, because our life literally depends in it - In order to treat we need to test, and test often.”

Not only do all companies across the board need affordable testing options, (and insulin, insulin-pump, CGM and other options) we need insurance and Medicare to stop limiting the amount of strips they are willing to pay for.

For instance, Medicare will only pay for patients to test 3 times a day. How does one fix their blood sugar issue by testing 3 times a day?

All the diabetics in the room agreed that advertising MUST stop pitching the two faces of diabetes that the public knows:  

1. The Ideal Diabetic

2. The Bad Diabetic (Steel Magnolia version)

For all of us in the Dblogville and beyond, the “Ideal Diabetic” is not one whose numbers are constantly at a 97. 

The Ideal Diabetic is one who puts the guilt of the numbers aside and learns from every test taken. 

The Ideal Diabetic is one who makes mistakes and learns from them.

The Ideal Diabetic is one who voices her or his opinion and becomes not just a Diabetes Advocate for themself, but for everyone else whose lives are affected by the disease.

We in the DOC – and beyond, ARE the Ideal Diabetic-the rest of society needs to relearn what diabetes is and what it means to be a PWD.

Kelly Close, from Close Concerns mentioned that Diabetes is perceived as a character flaw- and she’s absolutely right! 

I've said it before and I'll say it again,Diabetes is the only disease (besides sexually transmitted diseases) where the patient is blamed for their disease.

A perfect example of this was what LeenAnn, Bennet, and I experienced on the car ride to our hotel. 

The 3 of us were picked up by a Black Car Service, and the following conversation transpired with our Driver, who WAS NOT a Roche Rep, but he did represent John Q Public’s ideal regarding Diabetes:

Driver: SO, what business are you all in?

Me: We are in the business of living a great life with Diabetes.

Driver: REALLY? A great life with Diabetes? You all should take your patients to Dialysis ward- let them see what happens when Diabetics don’t take care of themselves.

I looked at Leeanne and her face was literally frozen in horror.

Bennet: WE ARE THE CLIENT.

Me: YEP, WE are People with Diabetes.

Driver: I didn’t mean to offend, really I didn’t I WAS A PATIENT in the Dialysis ward and my mom’s a diabetic.

Me: Times are different today; it’s much easier to take of your diabetes. Nothing is off limits and the technology is much more advanced than 30 years ago-it’s more advanced that 5 years ago. 

Needless to say, we were on the defense-, which is not very different than most days for those of us with the Big D.

Do I blame the Driver for his poorly chosen words that we have all heard before? NO I don't. 

I blame the way society- including Doctor’s blame the PWD. Do I want the gentleman fired? NO I DON’T. I want him and the rest of the world to be properly educated in Diabetes; it's causes,it’s issues, and it’s management to prevent conversations like this from ever having happening.

Back to the Summit:

At one point in the afternoon, Ginger Viera  mentioned the fact that we need to look at 1 number at a time and that she’d much rather "see an ad that showed a meter with a number of 310 with a real Person with Diabetes in ad that stated: This is Ginger, she woke up with a 310, now what? “ And all of us in the DOC wholeheartedly agreed.

I raised my hand and Amy handed me the mic. I stated that I wanted to see the guilt of being a diabetic be removed from the disease.

“As Diabetics, we are always saying, “I’m sorry.” Sorry to our Doctors, our friends, our parents. The guilt starts with the high numbers and the reactions we get. It becomes a Domino affect; patients start fudging logbooks, lying to our docs so we don’t have to feel guilty. Patients stop going to see their Endo’s and stop testing.”

The last 20 minutes of the day was tense when Chris from Diabetic Rockstar brought up the cost of test strips and Fran Carpenter had has back! Let me say that I was not there for Chris’s initial question- I was in the bathroom. But When I returned to the talk questions were flying across the room regarding the cost of test strips.

I wasn’t quite sure what was happening, but I do know SOMETHING MUST be done regarding the cost of being a diabetic on every level.

Scott King, of Diabetes Health had a great suggestion of offering special insurance for test strip customers without insurance- which would be wonderful  for all parties involved. More people could afford to buy the strips and test more often.

Collectively as a whole, we only had 8 hours of discussion and 8 hours isn’t enough to change the way things are done. But I believe it was a great first step in the process towards change and understanding between all parties. 

Roche was the first Pharmaceutical Company in history to openly reach-out to a group of Patient Bloggers - that move is both historical and positive on their part, and I thank them for taking that first step and asking me to take part.   

Now, if they can continue with what was started, wonderful things can happen.

END NOTE: I was the only person who stayed a second night, due an original flight that had me leaving the conference by 1pm.  I had signed up for the Roche tour and didn’t want to miss it. Roche was kind enough to change my flight in June and I was able to stay the extra night-, which was great thing because I was physically and emotionally exhausted. The Tour of the Test Strip manufacturing plant was impressive, a lot goes into to the production of those little strips, including gold, rocket science, and many peoples sweat and hard work. Both William Lee Dubois and David Mandosa have excellent recaps- READ THEM.

When I said my goodbyes to the group on the airport shuttle I was sad. I hugged everyone tight and as I got off the bus, Scottie J was getting on-“Hey what about me, where’s my hug?” As I hugged him tight and we told one another how we felt from the heart.

The car ride back was quiet, the hotel was quiet, even my dinner for one at The Cheesecake Factory was quiet- I was missing friends and trying to fully understnad what had just transpired in the past 32 hours. The waitress had to come back 4 times before I was ready to order. Note to self: Never go to the Cheese Cake Factory when you want to have a light meal and some self-reflection UNLESS you know the menu!

“I needed "more time" in every sense of the phrase,” and that's exactly what I told my waitress, and she gave it to me.  Allowing me to sitting outside on the patio, with my sunglasses on, which was good thing because I started to tear up. I missed my D friends so much, and I was so proud of what we had all accomplished that day.