Diabetes Advocacy, Peer Support, and Social Media
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Presented at the Diabetes Advocacy Alliance meeting, in Washington, DC - Dec. 3, 2014
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Diabetes Advocacy, Peer Support, and Social Media
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Editor's Notes
- Hi, I am Manny Hernandez – Co-founder and currently, President of Diabetes Hands Foundation.
- Since 2007, at Diabetes Hands Foundation we have been focusing on Bringing together people touched by diabetes for positive change, so that NOBODY living with this condition ever feels alone.
- 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. 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: after my blood glucose meter, this was my first encounter with a diabetes technology that changed my life. it wasn’t until 2006 that I finally met other people with diabetes, just like me, at an insulin pump users group. That meeting changed my life: in a matter of an hour, with my peers, I learned more than I had in four years living with this condition by myself. THIS is why we created the Diabetes Hands Foundation.
- How many of you know this symbol? It looks a lot like the symbol for World Diabetes Day… but it is not. The blue in this circle can be seen as how often we DON’T SEE a doctor or a diabetes educator. In the course of a whole year only about 0.1% of the time we are in the company of a medical professional for our diabetes. This IS very much a condition that we have to manage on our own… and it’s not easy, it can really get to you…
- So we start by connecting people touched by diabetes, so that nobody with this condition may ever feel alone.
- In 2007, we created two social networks, TuDIabetes.org (in English) and EsTuDiabetes.org (in Spanish) for people touched by diabetes. Today, they have more than 66,000 members, and receive 2.6 million annual visitors, more than half of whom are US-based.
- Peer support at its best.
- DHF not only seeks to connect people touched by diabetes, so that they may have a positive change in their own lives through much-needed emotional support and life-saving information. DHF mobilizes and rallies communities through our Big Blue Test program, to experience the impact that small changes can have on their health. In the Big Blue Test, we encourage people with diabetes to test their blood sugar, exercise for as little as 14-20 minutes, test again and share their results on the Big Blue Test platform. Since 2009, we’ve received nearly 100,000 Big Blue Test entries. Each of them has been matched by a life-saving donation in support of programs that help people with diabetes in need, For a total of close to $300,000 awarded in grants to diabetes charities in the US and abroad. I am very happy to announce Novo Nordisk’s commitment to being the first sponsor for Big Blue Test in 2015.
- This summer we held the first ever Diabetes Advocates MasterLab in Orlando, FL. It was a resounding success, with 125 attendees, and close to 20% participation of type 2 advocates (who are VERY elusive!) It set the stage for us to break ground towards a Diabetes Advocacy Academy starting in 2015, and a repeat MasterLab in the summer of 2015. Membership Over 370 registered members in Diabetes Advocates Conference Scholarships 32 scholarships granted to four national conferences (ADA, AADE, FFL, MasterLab) MasterLab Conference 125 patient advocates, medical professionals, regulators, and industry representatives gather for the first time to discuss a diabetes patient advocacy roadmap Contributed to the following diabetes advocacy campaigns: #SpareaRose, Save a Child #StripSafely FDA Advisory Committee on Afrezza #MedicareCoverCGM FDA Advisory Committee on Liraglutide for Obesity
- This is not an example of a DHF program, but rather an initiative that was BORN from the community, and we are committed to it now for the past two years. It shows the impact of an engaged community of people touched by diabetes: Spare a Rose, Save a Child: nearly $30,000 raised in support of LFAC, giving almost 500 children with type 1 diabetes in need a year of life! This was nearly 3x as much as what we were hoping to raise!
- Connecting among ourselves as people touched by diabetes, and even mobilizing around programs like the Big Blue Test or initiatives like Spare a Rose is very important… but it’s not enough. Because TOO often, important decisions that directly impact the lives of people with diabetes get made in rooms where patient voices are notably absent. Since 2009, DHF has been working to change this through our Diabetes Advocates program. Within this program we seek to connect and empower advocates dedicated to improving the lives of people living with diabetes in order to accelerate and amplify their efforts We do this through micro-grants, scholarships, training, to equip more advocates, make sure they can have a deeper impact, and ultimately develop a grassroots diabetes advocacy movement. I just told you about our effort during MasterLab this past summer, as a means to educate more advocates… this is with the goal to give them the tools to be MORE effective. S This is a picture taken April 1, while they were playing my testimonial on video, during the FDA Advisory Committee that was considering the merits and risks of a new inhalable insulin. There was an unprecedented number of advocates speaking at this meeting (18 or so, I believe). Equally unprecedented was to have a patient advocate speak through video (sitting at the table virtually), effectively breaking down walls, to bring the reactions about this drug from members of our communities, TuDiabetes and EsTuDiabetes. In the morning, before advocates spoke, the environment towards the drug in the meeting was largely negative. In the afternoon, the committee voted almost unanimously for the drug, and this new option for PWD was approved this summer. We saw a similar environment a few weeks ago, when another group of advocates spoke about the importance of options for obesity, at the Liraglutide FDA AdComm.
- We’ve been to FDA a few times in the past twelve months to bring the voice of patients to places where it used to be be silent. This was Nov. 3 when we held the first ever Town Hall with FDA about unmet needs in diabetes.
- This day that we crashed the streaming service that was bringing the live feed of the event to well over a thousand participants that signed up for it. This day we brought into FDA the notion of unmet needs: -Things like Quality of Life considerations as part of the drug review process. -Things like Time in Range and reduction in hypoglycemic events as key elements to supplement A1c –these are things that matter to us (things we value) on a day-to-day basis. -Thinks like how much it matters to us not only that drugs and devices get approved (as long as they are safe and effective) to offer more options for PWD, but also that they be reimbursed, so that we don’t limit access because therapies cannot be afforded by those who can benefit from them.
- We also take selfies in Capitol Hill.
- Diabetes: is 3x more than #AIDS And 2x more than #BreastCancer
- 4,489,393,359 Impressions 987,597 Tweets 245,546 Participants 113 Avg Tweets/Hour 4 Avg Tweets/Participant The only condition we don’t overshadow on Twitter is Ebola.
- I wanted to share with you some stats from the most recent opportunity for global advocacy we just experienced: Nov. 14, World Diabetes Day.
- For comparison purposes, On Nov. 14, this is how Ebola tweets looked like… and it wasn’t World or National Ebola Day.
- For comparison purposes, On Nov. 14, this is how Ebola tweets looked like… and it wasn’t World or National Ebola Day.
- #DiabetesMonth = 5,287,847 (up from 2013) #T1D = 1,498,299 (up from under 300,000 the year before)
- Now, some trivia…
- That number was in the tens of thousands.
- That was close, but that number was almost 2,000. How many different hashtags were used in diabetes related tweets on World Diabetes Day? 960! This included all sorts of things such as locations (#phoenix, #africa), lifestyle (#healthyliving, breakfast), and sub-campaigns/chats (#bluecircle, #WDDchat14). As a matter of fact there were no less than 20 hashtags used that included some variation of “blue”. This is a problem because it reflects the fact that, while “diabetes” may be making more noise on Twitter (to name a space), this effort is NOT coordinated enough, and it’s not resulting in enough awareness and advancement of the cause at large.
- Let me give you an example of what I mean by coordinating efforts. This was led by the group that brought us the #StripSafely campaign in 2013, a campaign that resulted in a dramatic shift of how much attention FDA was paying to the Diabetes Online Community.
- Among the top 100 participants in this effort, There’s no national advocacy organization. There’s a chapter of AADE in there, and there’s Medtronic, But that’s it… And THAT is a problem. Rising tides lift all boats, but we can raise the tides even MORE if we all participate.
- These 4,794 tweets happened in the course of two hours: That is nearly 2,400 tweets per hour! If you are wondering whether that is good, it is: It’s in line with the kind of volumes you’d see when a number of particular topics went viral this year. But they went viral because far more than 236 people were tweeting about them.
- Certainly not all these co-sponsors were due to the #Vote4DM Twitter campaign, but a fair number likely first heard of some or all of these bills as a result. Now imagine what becomes possible if we have among the top influencers in an upcoming version of this campaign, all of you in the room, mobilizing your Twitter followers. We could easily surpass the reach of #Ebola.
- We’ve heard the updated figures for 2012. I used to share this comparison to bring the point home as to HOW BIG the cost of diabetes was two years ago: Equal to the current state budget of California AND Texas, COMBINED! Until the recent update from Diabetes Care.
- Costs of diabetes and prediabetes up 48% (27% adjusted for inflation) from 2007 to 2012 to $322 billion; costs of prediabetes alone up 74% to $44 billion (this is > $1,000 per American) Add the annual budget of the state of Florida to the previous tab!
- We are facing a perfect storm. The Katrina of healthcare is upon us, and it will take ALL OF US: - Patients and advocates mobilized and WORKING TOGETHER; Industry aligned to ensure access; Payers realizing the business sense it MAKES to invest in treatments, and Legislators facing these realities and putting the right policies in place TO save us from a potentially catastrophic epidemic. I look forward to seeing increased collaboration between all our groups, to raise the tides… and in doing so, ironically avoid this storm. Thank you!