Diabetes Advocates Masterlab - July 2, 2014

I’ve been an active member of the DOC for years, while I don’t tweet or use facebook I’ve been very active in many of the discussion forums. I’ve always felt I contributed to the DOC through my postings and my work in helping online forums, but while I may have tried to help our community, I haven’t stepped up to the plate to drive for broader changes. And that is what led me down to path to the DiabetesAdvocates Masterlab in Orlando. My attendance was made possible by the generous invitation and support of the Diabetes Hands Foundation and Novo Nordisk. As a type 2, I don’t think I would have travelled on my own down to the Friends for Life conference to attend, but I did and I’m glad I did. This blog is a based on a piece that I wrote to contribute to a posting over at DiabetesMine. For those of you who want to see the slides from the MasterLab they are already posted. A video was made of the entire day and the plan is to post those videos. I would encourage anyone interested in advocacy to take a look. There are also others who have written about their experiences, I would also recommend David Edelmens summary over at DiabetesDaily.

For years I’ve tried to be an active member of the DOC. I’ve contributed to discussions within the community on a wide range of topics. I’ve contributed time and money to diabetes causes. And I’ve watched as things don’t seem to change much. We have an epidemic of diabetes going on around us; hardly a person in this world seems untouched. According to CDC, 30 million Americans have diabetes and another 86 million have “pre-diabetes.” I don’t know about how others feel, but in my world “pre-diabetes” is just diabetes and nearly 1 out 3 Americans have diabetes. That is an epidemic. But the world isn’t putting a priority on making changes and just talking about the issues within the DOC or giving money to existing organizations isn’t going to change. And worse of all it certainly won’t further the issues from a patients perspective. So that is what Diabetes Advocates is about for me and why I travelled down to Orlando. This is about changing my direction so that I can change the world by advocating outside the DOC. The Masterlab is about me figuring out what issues I need to advocate for and to learn the skills necessary to be an effective advocate.

Despite my living in Washington DC and knowing a great deal about our government, I found that I actually learned a great deal about how to employ the levers to effect change in government policy. And despite my sometimes jaded view, a whole series of examples showed how change could happen. Recent draft glucose meter guidelines were issued for comment and through the efforts of Bennett Dunlap (StripSafely) and others 600 comments were received, with over 200 being from PWD. Stayce Beck of the FDA talked about the growing importance of this input, after all it is PWD who make 99% of the decisions on their care and the safety and effectiveness in the hands of the “real” user is what really matters for devices like glucose monitors.

We then heard from Michael Manganiello of HCM Strategies who discussed the lessons learned from HIV/AID. Michael highlighted five key elements of a roadmap for advocacy success: getting attention, providing knowledge and solutions, establishing community, accountability and leadership. With so many people with diabetes, getting attention would seem easy, but it isn’t. Unless people speak up, nothing will change and as Michael said, “5 people don’t change the system, 500,000 do.” As someone with T2, I also realize that most of those 30 million people are the silent majority. They have been convinced that they got T2 because of personal failures; they blame themselves for their condition and they rarely even talk about their condition even with their friends and family. I wish Michael had spoken more clearly about this obstacle in the HIV/AIDs effort. There was a huge stigma associated with HIV/AIDS just like that associated with T2. I wish I could have asked Michael about how the HIV/AIDs community overcame that obstacle. I know that it seems nearly daily that I encounter those same issues, I’ve even had doctors and healthcare professionals tell me that my T2 is due to my being overweight and failing to diet and exercise. I may not have been a model Olympian but my diabetes is not a result of my poor choices. Even the federal government flagship “Diabetes Prevention Program” gives us this message as it tells us we can prevent our diabetes by simply getting off the couch and eating a low fat, calorie restricted diet. I wish to specially thank you Sia Figiel for talking with me about her journey dealing with the stigma of diabetes, we need to clearly communicate, nobody chooses diabetes, we are all victims of diabetes. Of all the things in the world I wish to change, I hope to change the perception that T2 diabetes is a result of “bad choices.”

Throughout the day I became more and more convinced that it is important to bring the T1 and T2 communities together to advocate. Kelly Close and Adam Brown gave a very informative overview of the commonalities of T1 and T2 and discussed how treatments targeted at T2 (i.e. metformin, GLP-1 agonists and SGLT-2 inhibitors) may well turn out to be highly effective T1 treatments. And I know that as T2 I found that the only treatment that enabled me to meet my goals was insulin. And Kelly and Adam highlighted further successes with advocacy at the open public hearing for Afrezza. This was further confirmed by Rebecca Killion who described her views as a voting member of the FDA Endocrinologic and Metabolic Drugs Advisory Committee which oversaw the hearing.

The final part of Masterlab involved role playing for advocacy. And the key thing about advocacy is that you need to ask others for help, others outside the DOC, others who may know little to nothing about the issues and not have the same priorities. David Lee Strassberg coached us on how to “ask” using relationship, vision, opportunity and closing. Being an advocate is hard work, it isn’t easy. But despite that if the DOC works together on these issues it doesn’t have to be an individual effort. In truth it won’t succeed if it is an individual effort, only when the community comes together as a whole, T1 and T2, the PWD and the other advocacy groups, then there will be an overwhelming voice that will get attention.

I’m going to think about what issues I want to take on. Perhaps I will try to advocate for changes to the Diabetes Prevention Program at the CDC. Being in DC, maybe I can advocate at the federal policy level. There are certainly meetings coming up, open public meetings at the FDA, the AACE is quite active as well as the ADA. It may take me some time to digest all I heard and learned at Masterlab. And as Bennett Dunlap said, hopefully this will finally enable me to really “Pay it Forward.”

Thus to that end the Diabetes Hands Foundation has put together three key strategies; developing a robust database of active patient advocates; creating an online Diabetes Action Hub; and establishing a diabetes advocacy academy. All of these strategies are embodied at the Diabetes Action Hub where you can take a survey to be included in a database of active diabetes advocate; where you can learn about specific ongoing activities that you can participate in and where you can get information on how to follow the activities of other advocacy groups (and often you can get alerts about things). A current activity right now is the National Diabetes Clinical Care Commission Act (House Resolution 1074 or the Senate bill 539) which calls for better coordination and leveraging of clinical care for diabetes across federal programs. Even if you don’t want to travel to Washington, DC or raise funds, simple actions that you make can make a difference. Contact your representatives; send letters or emails to them. Speak up.

Oh, and thanks so much again to the Diabetes Hands Foundation and NovoNordisk for providing me with a scholarship so I could attend.

Thanks for sharing this really great summary of the MasterLab.

Your observations about not just being active in the DOC but also selecting actions that have an impact resonated with me.

Thanks for this excellent summary of the day, Brian. I was there, too and your opening paragraph describes my DOC activities as well. In fact, I was previously rejected as a Diabetes Advocate. I think it is because I don't blog, but look for opportunities to help others on the forums.

I have taken the 3 steps outlined at the MasterLab regarding HR1074/SB539.

My Congressman here in Florida, Daniel Webster (R) got right back to me with a lot of data on funding for NIH ($29.9B) and the NIDDK ($1.8B). Pointing out that the overall NIH budget for 2014 is up by $1B over 2013, he basically told me how dedicated he was to continued funding for research, but he left my question about supporting HR1074 unanswered.

I received a form letter response from one of my Senators, Marco Rubio (R), with a promise for a more detailed follow up, but nothing from Senator Bill Nelson (D).

Next, I need to follow up with all of them for a more direct response.

Precisely because of the things you describe is why we are revisiting the whole process that we have within the Diabetes Advocates program. Blogging is not what makes an advocate: it's only ONE way to advocate!