2012 Blogger Summit at Lilly Diabetes

Social media is a powerful communication and connection tool. A message on twitter can reach countless people. FaceBook posts receive 'likes', get 'shared' and suddenly people that you've never met know that you support a cause, watched a video or have an opinion. Being connected in these ways is the new normal to those of us that live a part of our lives online and not surprisingly, companys have noticed.

I never imagined that writing about my life as a type I diabetes caregiver would lead to being invited to Lilly's first diabetes blogger summit but that is just what happened. I didn't know what to expect but I knew that the invitation felt like an oppurtunity to represent, as best that I could, the needs of our community.

It wasn't my intention to spend the day taking detailed notes or to report back to you that 'this' or 'that' was said. I wanted to experience the day, lend my thoughts when I thought that they would add to the discussion and see what good could come from the meeting for people like us.

I believe that businesses are mainly created to generate a positive cash flow and that there isn't anything wrong with a company making a profit. That's what my head thinks about buisness. My heart wants something different. In my opinion, companies that make a living in certain walks of life should do so with as much compassion for their customers as their shared situation allows. Making insulin, lancets and other diabetes devices is one such situation. From research and development to an attractive box on your pharmacy shelf, much goes into the development of safe and effective diabetes treatments and devices. I want the company that imagines and develops those things to be compensated. I want their employees to make a fair wage and I think their shareholders should see growth and sustainability. That again, is what my head thinks.

My heart feels that people living with a chronic illness shouldn't be looked upon as a constant cash flow opportunity even though they are. Companies that make the things that keep us alive need to be respectful of the backs that they make their profits on. They also should make allowances for the people that can not, in any way, afford the medications and devices that sustain their lives. It's the right thing to do.

A cynic may say that pharma companies invite bloggers like me to visit so that I'll leave with a positive view of their company, so that I'll write on my website that they are good guys that just want us to be happy. Well, I'm not a cynic but I do think that Lilly and every other company is beholden to their bottom line. The thing is, I didn't meet with a company last week, I met with people that work at a company and these people hold geniune concern and compassion for the diabetes community and the people that make it up. I'd like insulin to be cheaper but I also need for it to remain available. Therein lies the balance that I hoped to see when I visited Lilly and I did.

The building was steeped in tradition but the people inside, the employees, they were focused on today. Something amazing is happening right now in pharma as it relates to consumers. For the first time perhaps, they see the value in us as people and that's a good thing for us. We are no longer customers, never again to be thought of as patients - we are people. We can't and shouldn't blame pharma for taking so long to come to this seemingly obvious conclusion... they didn't know us until recently. How did they finally come to make our acquaintance? Social media introduced us.

Social media is how and why this summit came to be, it gave us all a name and a face, it's how we went from being customers whose dollars were coveted to people whose health outcomes are now followed with great interest and dare I say, real concern. Lilly wants to connect with us and even though I realize that many of you will meet their interest with skepticism, I say that we should embrace this new turn. As long as we continue to ask hard questions as a community and demand that our voices be heard, this new and direct connection to the companies that produce our diabetes supplies should and will be a mutually beneficial one. I'm optimistic and interested to see where this new sensibility takes us.

I'll be talking about the particulars from the day in my next few posts.

Hope you are all well!

Disclosure: I attended an event hosted by Lilly Diabetes, who paid for my airfare, travel, hotel and meals while I was in Indianapolis.

Update on Friday, June 1, 2012 at 11:47AM by Scott Benner

You can find my continuing thoughts from the blogger summit here. 

Diabetes Blog Week, Day 2

Diabetes Blog Week, Day 2, "One Great Thing"

 Today's Topic:

Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”.  But today it’s time to give ourselves some much deserved credit.  Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well! 

I am going to make myself uncomfortable and do two things that I abhor. The first and admittedly easier part, I'm going to write to the prompt. Second and much more difficult, I'm going to unapologetically say nice stuff about myself.

• I think I do a good job of sharing what it's like to be a parent of a child with type I diabetes. I see being this transparent as a public service and it makes me proud that Arden's Day helps people.
   
• I can basal away a high or low BG in a way that makes me feel like dropping confetti on my own head.
   
• Arden's A1c is in range.
   
• It still remains to be seen but I truly believe that the greatest thing that I will ever do (as it relates to diabetes and excluding caring for Arden) is to imagine 'Arden's Day Gives'

Thanks to @alsophil for our logo!

The interactions that I've had on this blog led me to believe that while there are many obstacles that we all face while living with type I diabetes, one of them bothered me more then the rest. I was startled by the number of voices that I heard online that want devices to help them manage their type I but can not, even though a great many of them are insured, afford to use them. After much soul searching and some timely input from others I came to the conclusion that I could be the one to effect this issue and we set about forming a non profit to do just that. 

On April 17, 2012 'Arden's Day Gives" was granted it's incorporation status from the state of New Jersey and we are currently in the process of applying for charitable status from the federal government. The process is a long and complicated one but we are making our way through it quite nicely. 

I hope Arden's Day Gives can serve as an example to you that your thoughts are only one physical action away from being tangible. I took a word on a digital page and turned it into an entity for good. Though ADG is still just a FaceBook page that's under construction, a twitter account and a URL that doesn't point anywhere yet, it is closer to helping the children in our community that need it most then it may appear. 

So far what I've done amounts to not much more then a raised seal on some paperwork but that's just the part that you can touch. In the feeling world, in the place where hope lives, it's already "great"!

I hope that you can follow Arden's Day Gives at one or all of the ways that I provided above. Very soon we will launch a website at www.ardensdaygives.org, be announcing our board members and with some luck be in possession of a 501(c)3 distinction by the end of the year. After that we will seek support from where ever we can find it and then go about doing the work of getting insulin pumps and continuous glucose monitors to the children that want and need them.

http://twitter.com/ArdensDayGives

http://www.facebook.com/ArdensDayGives

Arden's retinal nerve looks good

Let me first say I'm thrilled that, "Arden's retinal nerve looks good". I'm super happy in fact that this is the third year running that I've heard those words. However, it is difficult even in the face of such good news not to dwell for a moment on the bigger picture. Arden visits a pediatric ophthalmologist yearly because she has type I diabetes not because we are super careful parents with an unlimited insurance policy. She visits because her endo fears that her eyes may be beautiful little ticking time-bombs. 

"Ten years" the doc says. "We don't usually see complications until ten years after diagnosis". Every year she says the same thing to me as if it's of some comfort. Each time she says those words I I think the same thing, "She'll only be twelve then". This year the doctor must have seen the sadness in my face when she spoke those words because she followed up with, "but they'll be all kinds of new stuff by then, treatments, procedures..." I hope she didn't think that felt in any way comforting to me.

It hit me hardest this year as we walked out of the exam room. Arden was rockin her temp shades and making the best of the day. She knows we visit this doctor because of her type I but that's really the extent of her grasp on the situation. She doesn't know that we come every year hoping to not hear that her vision has been compromised by diabetes but she'll figure that out soon enough. Thankfully, for now that's only our burden to shoulder. 

For today, I'm just happy that Arden gets to treat this visit like a day off from school and a chance to try and overcome those ugly sunglasses with her good attitude and sense of style.

If you or your child has type I diabetes and aren't currently seeing an ophthalmologist as a regular part of your care... please start as soon as you can. Ignoring your future is far worse then existing for a few moments in an unpleasant present.

JDRF Announces Research Collaboration with Dexcom, Inc. to Develop

I love the varied ways that the JDRF supports diabetes research. Getting behind a company like DexCom and assisting them with their search for better CGM technology is forward thinking philanthropy. I can't wait to see what great devices are born from this union.

NEW YORK, April 24, 2012 - JDRF, the leading global organization focused on type 1 diabetes (T1D) research, announced today that it has partnered with Dexcom, Inc. (NASDAQ:DXCM), a San Diego, CA-based medical device company focused on developing and marketing continuous glucose monitoring (CGM) systems. The goal of the partnership is to accelerate the development of a novel wireless "smart transmitter" that would allow a CGM system to communicate directly with an artificial pancreas control device currently being used for research studies, instead of only with a CGM receiver. 

JDRF will provide Dexcom up to $500,000 over 12 months in milestone-based funding to complete the development, testing, and manufacturing of a custom "smart transmitter" prototype, which will be used for studies within JDRF's Artificial Pancreas Project academic research consortium.  The direct communication capability enabled by the smart transmitter will be an important feature for artificial pancreas trials in outpatient (real-world) settings, as it would eliminate the need for a trial participant to carry multiple devices all wired together while testing an artificial pancreas system's ability to manage glucose levels. 

People with T1D are burdened with constantly having to determine the right amount of insulin to dose at the right time, multiple times every day. Yet even with diligent monitoring, a significant portion of the day is still spent with either high or low blood sugar, placing them at risk for devastating complications. The artificial pancreas under development will be an external device that people with T1D could use to do what their bodies cannot-automatically control their blood sugar around the clock. It will work by combining an insulin pump and a CGM, which provides glucose readings every 1-5 minutes, with sophisticated computer software that allows the two devices to "talk to each other" to determine and provide automatically the right amount of insulin at the right time. Currently, all in-hospital artificial pancreas studies use wires and cables to connect a CGM system and an insulin pump to laptop computers or smartphones, which act as the artificial pancreas controllers.

In current CGM systems, the transmitter sends real-time glucose levels from the sensor to a receiver. In comparison, Dexcom's next generation of "smart transmitters" will have the ability to wirelessly transmit a glucose value directly to multiple devices, including several versions of an artificial pancreas controller.

"This robust wireless capability could greatly enhance the performance of closed-loop algorithms in outpatient studies, and we are proud to be working with JDRF on this exciting venture," said Terrance Gregg, chief executive officer of Dexcom. 

"In order for us to truly achieve real-life outpatient studies of artificial pancreas systems, we need systems that will allow people the freedom and ability to move around while also providing safety, monitoring, and data collection," said Aaron Kowalski, Ph.D., assistant vice president of treatment therapies for JDRF. "Dexcom's 'smart transmitter' will allow the sensor to talk directly to multiple artificial pancreas control devices, and essentially eliminate the hassle of being encumbered by wires and other devices while trying to be active. Now that the first outpatient studies have started, the development of robust wireless connection capability is a key step toward accelerating the delivery of an artificial pancreas to all patients with T1D."

WDD: Hero of the week

The International Diabetes Federation is asking, "Do you know someone that is active in promoting the diabetes cause or that are engaging, motivating and leading others to take steps toward creating healthier lives". If you know someone that fits this description please nominate them at this link. There are so many "Diabetes Heroes" in the DOC, please help to get them the attention that they deserve.

I want to thank the IDF for the unbelievable pleasure that comes with being recognized by them and for the honor of being called a "Diabetes Hero". I am humbled by this distinction and I hope you can take a moment to visit their site and learn more about their amazing efforts in the diabetes community and the world.