I used to not have diabetes. But in October 22, 2002: I was told by my primary care physician that I had diabetes… just as I was starting a new job (in the middle of a very tough period of our economy).I started blogging about my life with diabetes then. Here’s what I wrote.For several months, I was unable to keep my blood sugars in control. My primary care physician referred me to an endocrinologist: this is not an uncommon story.In 2003, I was correctly diagnosed as having LADA, Latent Autoimmune Diabetes in Adults (not type 2 diabetes), an autoimmune form of diabetes that appears in adults.In 2005, I started wearing an insulin pump and it wasn’t until 2006 that I finally met other people with diabetes, just like me, at an insulin pump users group.
Trying to recreate the opportunity I had, in 2007 my wife and I started connecting people with diabetes and their loved ones to one another through platforms for open dialog, at the Diabetes Hands Foundation.One of those platforms is TuDiabetes.org (in English) and another one is EsTuDiabetes.org (in Spanish).As of 2013, nearly 50,000 registered members connect through our communities and more than 3 million people touched by diabetes from all over the world (more than half are from outside the US) feel understood, connected and re-energized, instead of powerless or alone.
We have hosted Live Interviews with CamiloRiccordi (DRI), Terry Gregg (Dexcom), Jeffrey Brewer (JDRF), Fran Kaufman (Medtronic), Bill Polonsky (BDI), Gary Scheiner (IDS) and many more (once per week). In the months to come we will welcome Crystal Bowersox (American Idol) among others. You can always find out who we have scheduled for a Live Interview by visiting theTuDiabetes events page.
The following are images from the Big Blue Test, another program of the Diabetes Hands Foundation, to inspire people to get up, get active, and join the movement.In 2009, people were testing and sharing their values before and after physical activity. Now it’s no longer just exercise, but exercise that helps others…Since 2010, 40,000+ people have done the Big Blue Test.
Mission of this program:We accelerate and amplify the efforts of champions dedicated to improving the lives of people living with diabetes.100 membersFDA advisory committeesChallenging diabetes misrepresentation in the mediaOur Diabetes Advocates program took on several new initiatives and partnerships over the last 12 months. Leading up to Valentine's Day 2013, members of the Diabetes Advocates and Diabetes Hands Foundation rallied the Diabetes Online Community in support of Spare a Rose, Save a Child. By promoting this campaign we joined in an effort with hundreds of others to help the International Diabetes Federation (IDF) raise more than $3,200 and increase by 600% the online visibility of IDF's Life for a Child program, which provides humanitarian pediatric diabetes care in developing countries. Everyone you can think ofin the diabetes online community is a member of this program, where they can connect
It’s only mid-April and the list of places we will be speaking and trying to influence patients, families and key opinion leaders is already as big as the 2012 list.
Where do we fit in today’s diabetes world?
How many of you know what this is?If you are familiar with the WDD symbol (blue circle), you might think this is it.ACTUAL HOURS:12 hours per yearVs.8,748 hours per year on our ownYou may not see it… but there is a VERY thin line somewhere across the donut chart that represents the time in our lives as people with diabetes that we spend with a medical professional, whether it is a doctor, a nurse practitioner, a nutritionist, etc. = about 0.1% of our lives in the course of a whole year.As much as I’ve loved seeing my endos, I really never get enough time to spend with them… This IS very much a condition that we have to manage on our own.
The ADA noted that there are now 25.8 million Americans with diabetes, up from 17.5 million in 2007 and 12.1 million in 2002 and 7.5 million people in 1997 (up 27% and 45% and 61%, respectively).
As Dr. Rodgers from NIDDK mentioned today, ADA says diabetes costs totaled $245 billion in 2012, up worrisome 41%Sometimes we hear figures and they fly right past us, so here are a few comparisons of how much money is $245 billionAlmost $11,000 per person with diabetes in the USThe total revenue of Microsoft + Apple for 2012.The total GDP of Israel for 2012.
Diabetes research is HEAVILY under-funded by the US Federal Government.Yet UNCONTROLLED diabetes (not just diabetes), is responsible for more deaths in the US every year than breast cancer and AIDS combined.
It also doesn’t help when people, anonymous Joe’s or public figures like the President of Argentina make statements like this one.Last time I checked, diabetes doesn’t discriminate between rich or poor…
All these are obviously scary and fairly pessimistic figures by themselves.But beyond the rise in # of people diagnosed, cost of diabetes, lack of enough research funds, lack of awareness… There’s an even tougher reality:Most of the time, most people with diabetes are living alone.You’d imagine that, with nearly 26 million people diagnosed with diabetes in the US, 370+ million people with diabetes in the world (and counting) it wouldn’t be this way, Diabetes can be a very isolating condition. Although people with diabetes are certainly not alone, they feel alone and misunderstood.Just think how tough it becomes to go through your journey through life with diabetes, with the non-stop daily management tasks that it entails… all by yourself.THIS IS THE TENSION, THE DISPARITY… WHAT IS WRONG ABOUT TODAY’S PICTURE, THAT WE ARE FOCUSING ON: WHAT WE ARE TRYING TO CHANGE.
If you don’t feel at least a little pessimistic by now, you haven’t been listening… But the reality is that there’s light at the end of the tunnel. And best of all, WE are the ones holding the torch to turn that light on!
I want to take the opportunity of being in this venue to challenge an assumption that we have made for many years.3-legged stool missingConnections with other patientsTHIS is a disparity that I want to bring your attention to:The one that exists between the connected, empowered patient and the isolated patient.I believe this to be an idea with the potential to transform the way we think about diabetes management and patient engagement.This is an idea that can enable all of us to reduce disparities in efficient and cost-effective ways.
Let me share with you 4stories from people with diabetes who have connected with others like themselves, so you may see the benefits that they enjoy.First benefit:1) Parents, adults with type 1 or type 2 diabetes… all can come, and offer and get support. People that GET YOU as a patient.About ten years ago, Reed knew there was something "wrong" with him when he found himself driving in traffic in the wrong direction. He was in the middle of a low blood sugar episode. He had type 2 diabetes. Still, he was in denial for some time...
After he retired and eventually moved to Florida, he was told he had an A1c of 9.5. He was sent to refill his insulin prescription, but he was filled with questions.Like many others, he googled his way to TuDiabetes. He connected with many that made him feel understood, and listened to.
Through what he learned and shared with his doctor, he has been able to bring his A1c to 5.9Today he is 85 years old. His blood sugars rarely steers far from 120 mg/dL. He says TuDiabetes saved his life. So he gives back to the community…
Here you see Reed doing what he does EVERY morning: before anything else, he welcomes all the new members on TuDiabetes.org pointing them to existing resources within the community or other people they can connect with, plus stops by the pages of all the people who are having a birthday that particular day.His doctor is not only happy that he is doing this for his blood sugars, which are outstanding. He is much sharper mentally thanks to his engagement with the diabetes online community through TuDiabetes. In a sense, he has found a bigger purpose in life that keeps him going.
Ever since she discovered this space to share her stories and learn from other people’s stories, she also gives back…
Dr. Donald Lindberg, Director of the National Library of Medicine (the world’s largest medical library) saying that if he read two journal articles every night, at the end of a year he’d be 400 years behind: nobody can keep up. The implication is, “Hey, look – the top guy says it’s no failure if a less trained person has seen something you haven’t.”http://epatientdave.com/2012/10/18/see-you-in-the-library.-yes-that-library./#.UUuJ4nw4VEo
Those who know me, know that I am a hugger. When I write to people, I routinely sign by saying “Big hug!”But nothing could have prepared me for what happened to me in the Exhibit Hall of ADA almost 4 years ago.The story of a hug…Besides the lessons that get exchanged between peers through our programs, we have been able to increase knowledge through our collaboration with Children’s Hospital Boston
One of the organizations that has benefited from the BBT has been the S. Anthony’s Medical Clinic. Here’s a video we shot showing what they did with the funding they received through the Big Blue Test.As of today, $250,000 in Big Blue Test grants have been awarded to sustainable charities helping people with diabetes around the world who -in many cases- would literally die due to lack of access to insulin, testing supplies, and diabetes education.This is an example of what happens when people with diabetes and their loved ones connect with their peers… this is an example of how we can help reduce health disparities in this space.
You may be wondering… what can I do?
How do we accelerate research, so that finding a cure takes less time?Conversation with two brilliant scientists at Benaroya Research Institute.
How do we turn the stigma around and make sure nobody with diabetes ever feels alone again?
Dark slide… We have seen 4 clear benefits that emerge from connections between people touched by diabetes.Connections lead people to engage with this condition (this comes first), leading to becoming an empowered patient and ultimately having a positive impact in yourself but potentially too in the lives of others.But it all begins with this…
TODAY, there are far too many people with diabetes living in their own “diabetes closet”
And the diabetes community is inside a very big cave, where we are not getting enough sunlight… ;)And the rest of the world cannot see us!People affected by HIV ultimately rallied together and created an advocacy movement that demanded change and got results. As a result of the efforts of the HIV/AIDS activists in the United States, HIV/AIDS hasgone from being a death sentence to a chronic, manageable illness as long as access to medicines following diagnosis is assured. This movement fundamentally changed the medical research paradigm.
It begins with you:Get together, Connect with others
Sometime we get so carried away with our jobs, picking up the kids, refilling our prescriptions… all those details…That we can lose sight of what matters most: all people touched by this condition, and the fact that most of the time, most of us are alone. So this is where we’re focused, OBSESSIVELY: making sure“No one living with diabetes ever feels alone.”** Because diabetes is chronic, with us 24/7. We don’t leave it in the office: we bring it everywhere we go.** Because diabetes is a self-management condition.** Because we don’t yet have a cure.** Because we can have a bigger purpose in life when we help ourselves and help others.**Because we can make our dreams come true when we connect with others like ourselves.**Because we can increase knowledge, generate positive change in the community and the world around us…
www.BigBlueTest.org40k+ do the Big Blue Test, 2010-2012http://www.youtube.com/watch?v=w3F4Wq4USf4
Accelerating and amplifying the efforts of100 champions dedicated to improving thelives of people living with diabetes since2009www.DiabetesAdvocates.org– Diabetes events: ADA, AADE, etc.– Diabetes awareness micro-grants– FDA advisory committees– Diabetes media misrepresentationDiabetes Advocates
Almost20Kmembers (40%)log into ourSocialNetworks atleastonce/monthNing member data. Last visit data only goes back to July 27, 2011.
Type of diabetes(among active members)Ning member data. Last visit data only goes back to July 27, 2011.0%10%20%30%40%50%60%70%80%TuDiabetes EsTuDiabetesType 1Type 2
41%12%8%5%4%4%4%21%Our global reach(unique visitors)
25.80510152025301997 2002 2007 2012Millions of people (Dx withdiabetes) in the UShttp://www.diabetes.org/for-media/2013/annual-costs-of-diabetes-2013.htmlhttp://www.cdc.gov/media/pressrel/2010/r101022.html“2050: 1 in 3US adultscould havediabetes”
Cost of diabetes in the US$245$0$50$100$150$200$250$3001997 2002 2007 2012US$ Billions $245 billion= GDP (2012)= Combinedrevenue(2012)http://www.diabetes.org/for-media/2013/annual-costs-of-diabetes-2013.html
NIH Biomedical Research Allocations$3,401$2,818$4705001,0001,5002,0002,5003,0003,5004,000BreastCancerHIV/AIDS Parkinson’s ProstateCancerAlzheimer’s Diabetes$ per patienthttp://www.fairfoundation.org/factslinks.htm72x less than breast cancer60x less than HIV/AIDS!
“Diabetes is a richmans illness.”President of Argentina (March 12, 2013)http://www.dailymail.co.uk/news/article-2293564/Diabetes-rich-mans-illness-Argentinas-president-provokes-outrage-saying-illness-afflicts-affluent-eat-live-sedentary-lifestyles.html
“If I read two journalarticles every night, at theend of a year I’d be 400years behind.”~Dr. Donald Lindberg,Director, National Libraryof Medicine (1984-)http://epatientdave.com/2012/10/18/see-you-in-the-library.-yes-that-library3) Increaseknowledge
4) making a differencewww.BigBlueTest.org http://www.youtube.com/watch?v=irXbyy8LCQA