OK, we’re dubbing 2014 the Year of Diabetes Foot Soldier Advocacy.
Yup, you heard right: foot soldiers.
No, that’s not some veiled reference to the fictional ninjutsu clan from Teenage Mutant Ninja Turtles (well, maybe it is)… But it’s the best way we know how to describe where our Diabetes Online Community seems to be going with our advocacy efforts — beyond the virtual walls of the online universe to the actual, in-real-life world of local activities where more and more people with diabetes are able to hear our messages.
We’ve come a long way… it’s been fascinating to watch our beloved DOC evolve through the years. From the primitive listservs and online forums back in the late 90s to the emergence of a whole universe of diabetes blogs and interactive online networks in recent years. And just in the past few years, the DOC has stepped into a stronger position, reaching industry decision-makers and regulators who are now paying more attention to our Patient Voices than ever before.
Now our community is also looking internally, to offer more teaching and mentorship opportunities, including scholarships that enable more PWDs to step into that sometimes-scary advocacy role, by paying their way to expensive diabetes conferences so they can represent the wider D-audience and help us all learn how to best raise our voices for the most impact.
Just this week, the non-profit Diabetes Hands Foundation announced it’s awarding 16 scholarships to patient advocates in the D-Community, in order for them to attend one of three of the upcoming D-conferences this summer — one of which will feature a new “Masterlab” aimed at creating a formula for successful diabetes advocacy in the future.
It’s a way to get more of us to these conferences to learn about advocating, and it’s sign of the times, we think!
The MasterLab: D-Advocacy 101
As we head into the busy summer season sprinkled with diabetes conferences, the CWD Friends For Life Conference happening this July in Orlando, FL, will be home to the first-ever day-long “Masterlab” hosted by DHF on the event’s opening day. Attendees will learn about multiple issues and get tips to become better advocates in their own communities, online or offline.
Speakers include well-known names in the advocacy game: Paul Madden, Mike Swearingen, Rebecca Killion, Kelly Close, Kerri Sparling, Moira McCarthy, and many other diabetes experts and a variety of government affairs folk from device and pharmaceutical companies. The topics will range from policy and regulatory issues, to what advocacy looks like now and how we can improve, and an overview of how patients can be effective in the policy landscape. DHF co-founder and president Manny Hernandez says the plan is to offer hands-on practice and role-playing, to borrow a page from the HIV/AIDS advocacy playbook in creating an advocacy model, and ultimately to develop a Diabetes Advocacy Roadmap.
“The Masterlab is about building a sense of what is possible. It’s a chance to learn from veteran advocates for other health issues. It’s about creating a formula for successful diabetes advocacy in the future,” he says. “We will be recording the whole event and will be sharing it with the broader community following the event (we wanted to stream it, but it was too expensive). Part of the hope is to broaden the level of participation in advocacy within the community as a whole.”
In prepping for FFL and the Masterlab, Manny says his team has just finished the first phase of developing an actual Diabetes Advocacy Roadmap. That’s led to many realizations on how the DOC can work together even better internally and with other advocacy groups leading the way outside of the diabetes universe. The plan for the next two months is to distill that information and recommendations into an improved Roadmap and establish a timeline, before sharing the plan with the broader community in July.
Six of the scholarships announced Tuesday are for the Masterlab, so you’ll likely be able to follow those D-Advocates online (among others) to get the scoop on the Masterlab as it’s happening at FFL.
(If you’re interested in attending just the Masterlab on July 2, you can register and get more details here.)
Successful Advocacy in Action
The Masterlab is all about is advocacy in action, and making it possible for more PWDs to learn what needs to be done and carry that into their own physical worlds. In the past, it’s always been the big groups like JDRF or ADA asking us to “advocate” by taking some specific action with a particular message in mind. Now, thanks in large part to the DOC, it’s a lot more patient-driven than it used to be.
- Look at some of the campaigns like StripSafely and Spare A Rose, Save a Child where community members have come together to beat the drum issues important to them, and spread awareness.
- The Big Blue Test movement (that huge “test-in” that teaches us about the impact of exercise while raising money for people with diabetes in Third World countries) has gained steam through the years, rippling into local community meetups and awareness initiatives beyond just lighting landmarks up in blue on World Diabetes Day each Nov. 14.
- The community has been hammering a point recently about expanding coverage of diabetes devices like insulin pumps and CGMs, especially when it comes to Medicare competitive-bidding and specific state budgets. We saw the birth of a letter-writing and social media campaign that led clearly to a victory in convincing Arizona’s government leaders to include insulin pumps in its state budget. Effective advocacy, at its best!
Those are just a few examples…
“First and foremost, advocacy is about connecting peers. The better we connect, the more people with diabetes are empowered and hopefully the each PWD’s life is better. Policy advocacy is a side effect of peer connection, a good side effect,” says D-Dad and type 2 advocate Bennet Dunlap, who blogs at YDMV and is a co-creator of the StripSafely movement that began last year and has led to regulatory discussions with the FDA about test strip and meter accuracy.
Really, we don’t have to look much beyond StripSafely to see the impact our community’s already making.
This initiative has sparked continued, direct dialogue with the FDA, including a live online chat earlier in the year, and that’s all helped raise awareness in the D-Community and draw more comments on the FDA’s draft guidelines for better accuracy.
(Important Note: The deadline to submit comments is actually today, so make sure to let the regulators know what you think before the day ends!)
Bennet says that in creating StripSafely in mid-2013, he took guidance from the initial Spare A Rose, Save a Child campaign that came together earlier last year as a way to raise money for the International Diabetes Federation’s Life For a Child program. Those kinds of efforts — along with others in the DOC like the video-support initiative known as the You Can Do This Project; Diabetes Advocates collaboration on raising patient voices on issues like media awareness and mental health; and our own Innovation Summits here at the ‘Mine – are what Bennet sees as part of a broader trend.
“I hope is that is all a part of a cycle,” he tells us. “Look at the community response to the open FDA meter dockets. That is all of us. As a direct result of the DiabetesMine Innovation Summit, the DOC connected with FDA and that lead to a live webinar. More than 400 people registered for that, and FDA was thrilled. What’s important is that collaboration has resulted something like 350 comments to the docket. That is very exciting, and a sign that we can reach tipping points on policy issues, as well. We need to keep supporting each other, sharing resources rather than recreating them. In the policy area, that means we can make gains by supporting issues led by ADA, JDRF and others. Where there are issues that lack leadership, we can find exclusive ways to help each other.”
What’s the most important part of all this? Most definitely, it’s the mantra that everyone has a voice, and you don’t have to be a part of huge movements or have shiny collateral to effectively advocate.
We at the ‘Mine are more than delighted to see our community’s collective voice being heard! And we love the notion of spreading the word beyond the WWW via “foot soldiers” who can carry the message on to more and more patients who may not yet be “plugged in.” Cowabunga!