This was the first-ever event of its kind, a sort of special day-long class to teach people in the D-Community how to be better advocates. It was put together by the Diabetes Hands Foundation (DHF) and timed for the first day of the CWD FFL conference that just marked its 14th annual event. DHF founder and fellow type 1 Manny Hernandez tells us that about 130 people gathered for the inaugural MasterLab on July 2 – ranging from type 1 and type 2 PWDs, parents of children with diabetes, industry experts, regulatory officials and advocates from other patient communities.
Topics covered ranged from advocacy initiatives we’ve been a part of (like pushes for more CGM coverage and device access), to diabetes-specific legislation, getting insulin to Third World countries, and offering productive comments on tighter FDA rules for test strip accuracy, and how we can all work together more effectively. The agenda for this full-day event is available online.
Though our team unfortunately couldn’t make it out there ourselves, we were happy to be able to follow along through all the live-tweeting at the #MasterLab hashtag.
We also reached out to Manny and several attendees from the (DOC) Diabetes Online Community to learn more about what went down, and what might be next for this type of advocacy training.
“While there are always things to improve, the feedback we got was extremely positive,” Manny says. A few strong themes emerged:
- Power in Numbers – A presentation from Mike Manganiello, former HIV/AIDS and Spinal Chord Injury activist, was apparently super empowering. He is a legend in the patient advocacy world, as someone who was able to “rattle the cage.” He compared our current status and milestones in diabetes advocacy to what other groups have managed to do in much more challenging times — with faxes and phones, mind you, and no internet vs. today, with social media — or with much smaller communities of patients, compared to the nearly 30 million PWDs. We hear that his morning presentation, combined with the afternoon presentation by FDA patient rep and longtime T1 PWD Rebecca Killion inspired and motivated everyone in terms of where we’re at and the potential for change and impact the diabetes community has!
- Collaboration Between T1 and T2 – The DHF was able to offer 10 scholarships to people with type 2 diabetes to join the MasterLab. “I heard many of them say they felt welcome, excited, motivated… we need to do this more: we are not going to succeed in diabetes advocacy unless we mobilize more people with T2. I also was excited by the presentation that diaTribe’s Kelly Close and Adam Brown did in the afternoon, because they presented to the audience a sense of possibility for people with T1D, considering treatments and approaches typically only thought of as being for T2,” Manny reports.
- How to Make a Successful Ask – In a session with T1 advocate David Lee Strasberg, who also has a son with T1, he borrowed from his approach to teaching actors how to perform in order to teach fellow advocates how to successfully influence decision-makers, i.e. how to “make a successful ask,” either for funding or support of legislation or other initiatives.
Like everyone else, we were quite intrigued and excited to hear the announcement by our friends at DiaTribe that an FDA “Virtual Town Hall Meeting” is planned for Nov. 3, 2014. We can’t wait to get more of the inside dish on that!
Will there be another MasterLab? Manny believes so. “We have a number of ideas as to how to improve it, and integrate it with the other piece of our vision for diabetes advocacy, which includes an Online Diabetes Advocacy Academy.” Oooh, sounds exciting!
What’s next? Manny says, “We will continue to engage the group applying the lessons learned to one specific issue: coordinated diabetes policy at the federal level in the U.S.”
Everyone’s invited to take three specific steps, from the Diabetes Action Hub site: 1) Take our Diabetes Advocacy Survey 2) Speak up for coordinated diabetes policy 3) Sign up for advocacy alerts from ADA, JDRF, AADE and other relevant groups
Manny also highly recommends that everyone check out the MasterLab slides now posted on the D-Action Hub, and he says videos of the presentations will be posted online very soon. Also sharing some perspectives on the MasterLab are a trio of fellow D-Community members: Type 2 DOC’ers Sue Rericha and Brian Cohen, and Merle Gleeson, founder of the Type 1 Diabetes Lounge in Chicago. Take it away, Friends… From Merle: I was thrilled when the Diabetes Hands Foundation offered me a scholarship to attend their very first Masterlab. The purpose of this meeting was to connect and inspire advocates dedicated to improving the lives of people living with diabetes by providing a roadmap to successful advocacy. First of all, I never set out to be an ‘advocate’ of any kind. When I looked around the room, I realized my involvement in the diabetes world with the Type 1 Diabetes Lounge is different than the many authors and bloggers. I started this organization before the Internet changed the world and made it possible to connect with others around the globe. Founded as a personal endeavor in 1997, we are a unique nonprofit group serving the Chicagoland area. You can read how my journey began here. The MasterLab began by discussing the dire need for advocacy. Speakers included industry experts who covered the challenges we face while providing strategies on how to get the attention of policy-makers in Congress and the FDA. We were given examples of what worked for other successful movements and what it takes to become an effective political advocate. A panel of advocates took questions from the audience and discussed their vision for patient advocacy. Here’s what I took away, on the steps for becoming an effective political diabetes advocate:
- It takes a movement to make change occur. It takes anger over unjust policies. We can’t sit back and wait! Start with the patient community who are like-minded and passionate for the cause. Cultivate the leaders from this group.
- It’s important to be clear what your goal is. Make your “ask” simple and let everyone know what it is. Tell your story so everyone understands why this issue is important to you.
- People with type 1 and type 2 have a common ground and are more similar than different. Many of us share the same needs for insulin, pumps, CGMs, meters, etc. There is strength in numbers. The more people we have in our court, the more pressure we can apply and the better results we can get. Include everyone in your movement!
- No need to reinvent the wheel. If other groups or organizations are already working on the cause at hand, join forces with them. Size does count!
- Make the phone ring. Set up a meeting with your Congressman/woman. Stay on top of them so they don’t forget about you and the cause. If you follow up, you’ll get what you want 90% of the time. This includes email thank you’s, reminder calls/emails, etc.
Since I became a Joslin 50 year Medalist last year I have many fiends on Medicare who are angry that Medicare refuses coverage of CGMs, proven life-saving devices. I find this disturbing and unacceptable, so I’m working with a Joslin advocate to change this policy. I’m in the process of setting up a meeting to discuss with my Congresswoman, Jan Schakowsky, who luckily is an advocate for type 1 diabetes research. I want to thank Manny and everyone at Diabetes Hands Foundation for presenting this opportunity for me to meet and learn from so many seasoned advocates who shared their steps to success. By implementing what I learned at this conference, I will become more effective and therefore successful in my advocacy work!
From Brian: I’ve always felt I contributed to the DOC through my postings and my work in helping online forums, but … I haven’t yet stepped up to the plate to drive for broader changes. And that is what led me down to path to the Diabetes Advocates 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, but I’m glad I did. 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 D.C. 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 me how change can happen; for example, recent draft glucose meter guidelines were issued for comment and through the efforts of the StripSafely initiative, 600 comments were received, with more than 200 from PWDs. The FDA’s Stayce Beck talked about the growing importance of this input, since it’s PWDs 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 (!) Then Michael Manganiello of HCM Strategies discussed lessons learned from HIV/AIDS advocacy. He 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 says, “Five 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 it, even with their friends and family. I wish Michael had spoken more clearly about this obstacle in the HIV/AIDS effort. Initially there was a huge stigma associated with HIV/AIDS just like that associated with T2. I wish I could have asked Michael about how that community overcame this obstacle. It seems that nearly daily, 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 simply 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.
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. I know that as a 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, emphasizing that the key thing about advocacy is that you need to ask for help from others outside the DOC — others who may know little to nothing about our specific issues and not have the same priorities. David Lee Strassberg coached us on how to “ask” using relationship, vision, opportunity and closing. The core message was that being an advocate is hard work, but it doesn’t have to be an individual effort. In truth it won’t succeed as an individual effort, but only when the community comes together as a whole, T1 and T2, PWDs and the other advocacy groups, to create 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 D.C., maybe I can advocate at the federal policy level in upcoming open public meetings. It may take me some time to digest all that I heard and learned at MasterLab. And as StripSafely founder Bennett Dunlap says, hopefully this will finally enable me and others to really “Pay it Forward” the way we wish to do.
From Sue: MasterLab was an amazing experience. It didn’t matter what “type” you were. What mattered was your desire and passion to work together as advocates. Unfortunately, there is often a divide between the types of diabetes. MasterLab showed us that we have more similarities than differences. We need to educate each other so we can then educate others. We have to stop the bickering amongst ourselves and use that energy toward the greater good, to educate and find a cure. There are nearly 30 million people with diabetes in the United States alone. Imagine what we will accomplish when, not if, we all work together! It wasn’t just what was said at the podium — it was what was said around the tables and what was felt. The energy in the room was amazing. People were ready to take action. The next step was for each of us to figure out our focus, find others with the same goals, and run with it. We were told to ask others to help us if we lacked the courage or direction to accomplish our objectives. On the shuttle to the airport on my way home I met a woman from Norway. She said in her language, as well as many of the other European languages, there is no word for advocacy. Why? There isn’t a need. People receive the treatments their medical condition requires without having to fight or advocate for what they need. Someday I hope that advocacy will be an outmoded, unnecessary term in our language as well. During the panel roundtable discussion, Bruce Taylor from Roche said that “Local [advocacy] is one of the easiest things to do.” Things like contacting your members of Congress. Sending them just a three-paragraph letter may make a difference. Communicating with the FDA is also something we can do without having to travel across the country. The key is: To take action!
D-Advocate Christel Aprigliano talked about the need to make it as simple as possible. One of her points: Take a 35-page document and highlight important points to share with your peers, helping them easily understand what they should do. One point that really hit home for me, as the mother of five children, was what Project Hope director Paul Madden said, “It’s not about you. It’s not about me. It’s about the next generation.” There is type 2 diabetes on my side of the family as well as my husband’s side. I’m scared for my children. My desire to advocate and educate for better treatments and a cure is because of them. All mothers want to protect their children. I want to protect my children against diabetes. Madden also said, “Diabetes has the largest percent-increase in cause of death from 2010 to 2011.” If that doesn’t scare you into action, what will? So what did I take away from MasterLab? I have an overwhelming personal need to do more. I need to find my focus and give it all the attention I can. It doesn’t need to be a full-time job. It can’t be since I have a family, a job, and graduate school. However, I know I can get more done with the time I have to devote to advocacy if I have a clear direction. At this time I’m not exactly sure what that will look like, but I have it feeling it might be something to do with educating people about type 2 diabetes while getting the diabetes community to work together without focusing on the type.
Thanks, You Three, for the great insights about this experience. Again, we think the MasterLab is a “masterful” addition to the many happenings at the FFL conference, and we’re excited to see where it goes!
What About You? If you happened to attend the MasterLab, or followed it online like us, what stood out to you about this new “advocacy school”? Please let us know — also if you’ve written about the experience or seen other posts not mentioned below. Please share so we can keep tabs on all the great insights being shared in our DOC. Thanks! Further Reading:
- Recap by David Edelman at DiabetesDaily
- Storify roundup of Tweets about MasterLab by DiaTribe
- Posts by Stephen Shaul at Happy Medium — Part 1 and Part 2, plus this Advocacy & Movement post
- Rachel’s report over at the Refreshing D blog
- Sue Rericha’s post about MasterLab at her blog, Diabetes Ramblings
- A viewpoint by Chris Snider at A Consequence of Hypoglycemia
- MasterLab takeaways from blogger Rich the Diabetic
- Kim Vlasnik has this MasterLab DeBrief at Texting My Pancreas
- Christel Aprigliano has a nifty call to action post, The KISS of D-Advocacy, at The Perfect D blog