http://type2diabetestreatment.net/diabetes-mellitus/masterlab-2016-a-different-approach-to-diabetes-advocacy/
One fellow type 1 in Georgia plans to create a non-profit group that will host comedy shows to raise money for diabetes supplies for those who can’t otherwise afford them. Another T1D advocate from Illinois wants to set up web hubs at free health clinics in Chicago, to broaden access to the unprecedented peer support offered by the Diabetes Online Community (DOC). And a handful of D-peeps from across the globe are rolling up their sleeves to explore ways they can influence diabetes advocacy in their own regions and start making a difference.
These are just some of the examples of "advocacy fires" that were being kindled at last week"s diabetes advocacy training camp, MasterLab 2016, held in conjunction with the CWD Friends For Life conference in Orlando, FL.
This day-long event organized by the Diabetes Hands Foundation gathered 115 engaged patients this year for a day of “advocacy school” about how to channel our energies and craft action plans for our own communities. Nearly half of those attending were there on scholarships provided by DHF and paid for by Lilly Diabetes (myself included!), and all told, participants hailed from at least 25 states and 8 different countries -- including a great group representing the Spanish-speaking part of our global D-Community.
This was the third consecutive year for MasterLab, but it was almost a rebirth for the event, in the sense that DHF new leadership brought a very different tone than years" past. In short, the event seemed less organic and more scripted and pedantic, although the specific themes were certainly relevant and thoroughly addressed.
A Different Tone
Following the resignation of longtime leader Manny Hernandez in early 2015 and the interim leadership of Melissa Lee, DHF chose Gene Kunde as new chief exec at the start of this year. While he has lots of for-profit and charitable org leadership under his belt, Gene is the first DHF leader to come to the role with no previous diabetes exposure -- which may have contributed to nearly-complete makeover of MasterLab this year.
There seemed to be mixed reactions to this year"s more structured approach that left little chance for brainstorming or organic discussion, which was a staple of previous programs.
Still Inspirational
With that said, the event was still inspirational as always and it clearly lit (or reignited) the advocacy fires for many in the room – myself included. That began with friend and advocate Scott Johnson (also a DHF board member), who gave an impassioned opening talk about "embracing your inner advocate." The fact that we were all there in the first place meant we each had a fire inside us that was already burning strong. He described life with diabetes as "a huge puzzle with missing pieces," and by exploring and challenging our "puzzle view" we can truly make a difference.
"When you feel something click into place, or you notice a tug of curiosity, or a surge of frustration... pay attention! That is your fire talking to you, and it’s hungry," Scott said. "MasterLab... is a high-speed, high-energy dose of puzzle organization, and it’s going to get your fire roaring. Your job? Just take it all in, then follow your fire and feed your fire. I can’t wait to see where it leads you."
From there on, we attendees were on the edge of our seats, eager to see what the rest of the day would bring.
Access to Healthy Food
I was impressed by a fascinating presentation by Roniece Weaver, a dietitian and author who serves as executive director of Hebni Nutrition Consultants in Central Florida. She addressed ways to tackle nutrition programs and access to healthy foods in under-served and at-risk neighborhoods, and also talked about how to pursue grants and get community support for those efforts.
One of the main programs highlighted was the Fresh Stop Bus, a brilliant way to bring healthy food to rural communities and lower-income communities that need it most. Think of it as a refrigerated ice cream truck traveling neighborhoods, but instead of sugary cold treats, it offers fresh produce and other healthy eats for a discount price. Every two weeks, the Fresh Stop Bus visits 16 different "food desert" neighborhoods in Central Florida.
"We now have a mobile farmer"s market on a bus!" Roniece said, noting that "you have to go where the people live and where the need is the strongest."
She also told us about Hebni"s Project Oasis program, which has offered healthy cooking classes to more than 120 families over the past two years. It is aimed at minority families, and uses the Central Florida zipcodes to pinpoint where the need is most. Families are then offered a free eight-week cooking course in which they learn how to shop for and prepare healthy meals, plus they complementary fresh fruit and veggies for their family while enrolled in the program. Data shows the program is working: 36% of participants reduced blood glucose levels and 55% maintained their BGs throughout.
Weaver"s message was clear that her work is about more than spreading the gospel of heathly eating; it"s about being a voice for the voiceless.
Minding Your Mental Health
The second-best session overall IMHO was one focused on mental health, by fellow type 1 Dr. Mark Heyman at the Center for Diabetes and Mental Health in California (he"s @DiabeticPsych on Twitter). This one was a perfect way to round out the day"s discussions, and it really hit home for many of us.
In essence, he stated the airplane air mask analogy: that we have to be able to take care of ourselves first, in order to be able to order to help others and advocate for the D-Community. He was adamant that minding our own mental health is never selfish, but too often we forget that and pay the price. He offered a slideshow of tips and general advice to this end, such as reshaping our outlooks and avoiding the dangerous terms "ought" and "should" that invoke guilt. He also reminded us that overall self-care is important, and we have to remember to define ourselves outside of diabetes and advocacy at times.
This hit home for many of us, and after MasterLab, it seemed pretty unanimous that Mark brought a perfect ending note to the whole event.
Workplace Legal Discrimination
Another well-done session in my mind featured two D-peeps with relevant experience on the topic of discrimination -- past, present and future. That pair was attorney John Griffin and risk management executive George Huntley, both of whom are with the National Diabetes Volunteer Leadership Council.
They outlined the workplace hurdles we"ve overcome through the years in jobs that PWDs can now do that they couldn"t two decades ago -- firefighters, police officers, commercial drivers, and the FBI, among them. We still have work to do in commercial pilots and military service, but those are works in progress. The pair made a solid point of declaring that we aren"t pre-existing conditions, we"re people and we should be defined as such with the opportunities open to us. They gave a pretty comprehensive rundown of the American Disabilities Act protections that PWDs have, and how many resources exist -- including at the ADA -- for people to talk with advocates who can help navigate these tricky discrimination issues.
One of the great lines from MasterLab came from John Griffin during this session, when he told us the keys to success in advocating on workplace discrimination include the following: "Educate, Negotiate, Litigate, Legislate."
Awesome advice, Gents!
Lobbying, Advocacy, Education, and Clinical Talk
Sadly, this action-oriented part of MasterLab is the one that fell short, I think, as there were glaring gaps in what was presented and what"s actually happening in our D-Community.
Lobbying: Lobbyist Jay Keese from the Partnership to Fight Chronic Disease came in to basically school us on the difference between advocacy and lobbying (there are distinct differences, though much of it was lost in this particular presentation). He ran through a number of different chronic disease and broad health legislation currently pending before Congress.
He also discussed Diabetes Action Plans (DAPs), a topic that came up last year but really wasn"t explored very much this year since it was just barely touched upon in Keese"s presentation. I did learn that 18 states have passed these DAPs and 10 are currently considering them, and this reminded me that I hadn"t followed up on my exploration of DAPs since moving back to Michigan last summer... so, there"s that.
Many attending echoed that this session was too broad, and didn"t hit home enough -- that was my feeling, too.
The topic of #DiabetesAccessMatters got a passing mention, and the only big issue included that our D-Community"s been advocating on recently was the Medicare CGM Access legislation; but even with that latter legislation listed on a slide, there wasn"t any mention of the ongoing advocacy effort or the work the Diabetes Patient Advocacy Coalition (DPAC) has been spearheading. At one point, when someone brought up the Medicare competitive bidding process and the need to suspend this, Keese essentially shrugged it off as unimportant and an unlikely change coming anytime soon... ugh.
Honestly, I was pretty disappointed. I caught up with Keese after the session to discuss these various points and connect him with DPAC, but we"ll see if anything materializes there. Overall, there were some valuable nuggets from this, and you can"t argue with the message of talking with lawmakers, it just would"ve been nice to see some more dots connected -- especially for those attending MasterLab who might not have been as aware of what"s happening on the D-advocacy front.
Probably the most valuable piece I got out of Keese’s session was the slide addressing Medicare"s new rule relating to doctor reimbursements, and the proposal to expand the national Diabetes Prevention Program to include more preventative services. At the time of MasterLab, that was still pending. But on July 11, CMS announced the official proposal, and it"s now open for public comment through Sept. 6, 2016. That"s worth taking note of, and probably warrants further review in the coming weeks.
Clinical Trials: A session on clinical research participation was offered by Ellyn Getz from the Center for Information and Study on Clinical Research Participation. There was some valuable info presented here, too, like how to find clinical trials and why it’s important to participate. But once again, I felt this was a bit lacking in specificity and could"ve used a more tangible message on what clinical trials mean in the context of our D-advocacy efforts.
Educators: Luckily, a saving grace for me came immediately following the lobbying session. AADE President and longtime DOC friend Hope Warshaw talked up some major advoacy efforts underway, including key legislation that we can advocate on and highlighting how the organization has been working with the DOC for many years. Her colleague Kurt Anderson, who serves as state and federal advocacy director, shared the podium time and among the highlights they mentioned the #SuspendBidding effort that had been missing beforehand.
While it was a bit "AADE promotional" at times, I did think Hope and Kurt had a good advocacy focused presentation.
Hope also highlighted how the AADE has been working with the DOC for many years, and the DOC handout she helped create for doctors and educators aiming to encourage more PWDs to connect and become engaged online, particularly underrepresented T2s. Hopefully we can help move the needle on those issues soon!
Advocacy Planning
For me, MasterLab was a great time, and I"m very grateful to DHF 
for graciously offering me a scholarship that paid for my airfare, hotel stay and transportation for a few days. I was honored to be one of the 50 scholarship recipients (note: I didn"t apply, but was offered a scholarship with the goal of sharing the experience with the community at large).
A big focus of this year"s MasterLab was the "Personal Advocacy Plan," a booklet that listed the agenda and encouraged attendees to formulate our D-advocacy thoughts into a list of actions we can take home. Based on each of the 8 sessions, we were supposed to write down personal insights leading us toward an action plan -- identifying a specific diabetes problem, outlining a solution, developing our message, planning action, engaging the community, and noting ways to "stay sane while advocating."
While I get the idea behind this, it felt a bit like I was back in school being tested after each session, and that I"d have to present my plan to the class afterward.
I heard mixed reactions about this from others attending MasterLab. Some people certainly were fans, and said they had passionate plans already in the works thanks to MasterLab. A few of folks even read their plans aloud in the closing minutes.
To be honest, I didn"t chronicle my insights in the Personal Advocacy Plan, as that"s not really my style. Instead, my plan is to pretty much continue doing what I have strived to do from the start: connecting dots and sharing stories on all things diabetes to hep our D-Community be as informed as they want to be, and use that knowledge for the greater good.
We hope that"s what you get from DiabetesMine, and it"s what we"ll continue doing here every day.
What"s Next?
The day after this event, I sat down with Gene Kunde to get his personal perspective on MasterLab and what"s ahead. He said a big push was to make this more diverse than years past and bring in new faces, from attendees to those presenting during MasterLab.
"The goal wasn"t to tell anyone how to advocate or what to advocate on, but to steer them to resources out there to help them fuel that fire," Gene said.
He pointed to three initiatives that will be coming soon, as follow-ups to this annual event:
MasterLab Hub: It"s an online "one stop shop" for anything related to the DHF Diabetes Advocates program, which is what MasterLab falls under. This will include advocate stories, initiatives and resources for the DOC to explore for their own D-advocacy purposes.
MasterLab Academy: an effort to take MasterLab into a virtual setting, to add more programs so this won"t just be a once-a-year happening anymore.
Diabetes Leadership Institute – a new program offering small grants similar to the DHF seeds program introduced a few years ago that’s tied to DHF’s Big Blue Test initiative for World Diabetes Day. The new grants will be aimed at helping advocates who need a little assistance in getting started with their own advocacy efforts.
Speaking of the Big Blue Test: Gene says to expect some changes this year -- specifics are TBD, but beloved D-advocate Mike Lawson is leading up that project and an effort to "breathe some new life into that program," we"re told.
Gene says when he first took the job, he looked at BBT and thought about scratching it from the list of what the organization does (!). But he opted against that, wanting to keep it alive after talking with DHF staff and board members. Instead, it will be reworked to engage and touch more in the diabetes community. While he wouldn"t elaborate, he did say DHF is interested in reaching more T2s in the D-Community and so maybe that will work into it...
As to the rest of what DHF does, Gene says this:
"We think DHF can help pull some of the other diabetes orgs together to be a greater voice, and do more," he said. "We are here and we"re not going away, and it"s time to get serious."
That’s a great advocacy fire to start right there, for sure!
Disclaimer: Content created by the Diabetes Mine team. For more details click here.Disclaimer
This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn"t adhere to Healthline"s editorial guidelines. For more information about Healthline"s partnership with Diabetes Mine, please click here.
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