Diabetes Advocacy Orgs: Their Successes in 2015 and Plans for 2016

Diabetes Advocacy Orgs: Their Successes in 2015 and Plans for 2016
Written by Amy Tenderich | Published in Diabetes Mine on January 11, 2016

We have a lot of traditions here at the 'Mine, but one of our favorites is querying the country’s top diabetes advocacy organizations at the end of each year to share what they’ve accomplished, and what they have in store for the new year ahead.

So, once again we asked the pointed questions: What did these groups actually achieve in 2015? And what do they plan to make happen in 2016?

Below are the answers we received from their various leaders and spokespeople (in alphabetical order).There is a ton of great information here about what’s happening in the Diabetes World, so we invite you to grab a cup of coffee, get yourself comfortable, and dig in…

American Association of Diabetes Educators (AADE)

This was another busy year. The board of directors initiated our 2016 -2018 Strategic Plan in mid-2014 with an environmental scan that included gathering input from all corners of the diabetes community including members of the Diabetes Online Community and people with diabetes. A few points are worth noting: To guide our work we created a Spheres of Influence framework, a schematic that maps the influences and interactions at each level of diabetes’ impact on individuals and society. We have placed people with, at risk for or affected by diabetes and related chronic conditions, at the center of this framework because you are the focus of our work. This framework helps indicate the many areas where diabetes educators and diabetes education have opportunities to make an impact. Our new vision, mission and guiding principles along with strategies and outcomes will be on the AADE website in early January.

Many other initiatives were accomplished in 2015. These include development and publication of a Joint Position Statement on Diabetes Self-Management Education and Support in Type 2 Diabetes with the American Diabetes Association and Academy of Nutrition and Dietetics. This identifies four critical times throughout an individual’s life that they should be referred by their healthcare provider for diabetes education. This statement was supported by a growing body of research demonstrating the critical role and cost-effectiveness of diabetes education in the management of diabetes.

To add to this body of evidence we’re pleased to note the recent publication of an AADE-conducted systematic review in Patient Education and Counseling journal that reconfirms the clinical effectiveness of diabetes education provided by diabetes educators.

To address the sweeping advancements in the connected health environment and digital technologies, AADE held a Technology Summit mid-year. This summit brought together input from diabetes technology experts (which included several people with diabetes), healthcare experts, diabetes educators with technology and healthcare systems expertise, and AADE staff. One outcome from this summit is the launch of AADE’s Technology Workgroup. The members, representing experts with varied backgrounds, will create a roadmap to examine the technology needs of diabetes educators and beyond. AADE’s 2015 President, Deborah Greenwood, attended the 2015 Diabetes Mine D-Data ExChange and Diabetes Innovation Summit and recapped AADE’s work in technology in this Diabetes Mine post.

We continued our work with CDC on the National Diabetes Prevention Program grant, expanding to 20 sites in 2015. More than 45 programs across the U.S. are run by diabetes educators trained in lifestyle coaching and have so far produced excellent results for those with pre-diabetes.

We continue to develop and offer resources for diabetes educators to use in their education programs on topics of interest, such as tip sheets on eating healthy during the holiday season in Spanish (special thanks to TuDiabetes.org for partnering with us on this), ideas for increasing physical activity and understanding hypoglycemia. We also covered challenges around sexuality, travelling, grocery shopping and aging. In addition, we expanded our Diabetes Goal Tracker app, to include nutrition information. Now, in addition to setting and tracking behavior change goals, users can also track calories, carbohydrates, total fat and sodium. The app also allows users to create diabetes-friendly recipes and share them with the Goal Tracker community.

On the legislative and regulatory front, we continued to push for safety and access to care and diabetes supplies for people with diabetes. We conducted a secret shopper survey that demonstrated suppliers in Medicare’s Competitive Bidding Program were failing to provide access to insulin pumps and related supplies. The report was shared with Medicare officials in mid-2015. It complimented an earlier secret shopper survey AADE conducted that demonstrated similar findings with blood glucose monitors and supplies.

We’ll kick the year off by communicating our 2016 -2018 Strategic Plan to the Diabetes Community and begin to execute on our initiatives. We’ll continue our work on the integration of technology with diabetes education to enable improved outcomes for people with pre-diabetes and diabetes.

Another significant AADE initiative is to hold a Primary Care Summit. It’s well known that primary care providers, including physicians, nurse practitioners, physician assistants and others, provide the majority of care for people with pre-diabetes and diabetes. Engaging primary care providers has always been an important initiative of AADE. We will convene representatives from numerous healthcare associations and patient-facing organizations with the goal of working toward several initiatives of mutual interest focused on improving outcomes for people with diabetes.

The 2016 AADE Annual Meeting is in sunny San Diego, August 12 – 15 and we are well on our way to planning an inspirational and educational meeting for attendees and exhibitors.

To promote safety among people with diabetes and assure that people receive diabetes education from credentialed providers, we will continue to advocate for licensure of diabetes educators at the state level. Two states likely to see legislative activity in early 2016 are Florida and Pennsylvania. On the federal level, we will continue to press for passage of the Access to Quality Diabetes Education Act H.R. 1726/S. 1345. We appreciate the work of members of the Diabetes Online Community on this effort to date and we ask that you continue asking your legislators to support this important legislation. A special thanks to Diabetes Patient Advocacy Coalition for their continued support. AADE also supports other federal legislation in the diabetes community, such as the legislation to cover CGMs for people with type 1 diabetes.

American Diabetes Association (ADA)

This has been a big year for the American Diabetes Association. We marked our 75th anniversary by honoring our role in decades of progress in diabetes treatment, management and quality of life—while focusing on work that still needs to be accomplished to Stop Diabetes®.

On June 1, we welcomed our new CEO, Kevin L. Hagan, who is dedicated to our mission to prevent and cure diabetes and to improve the lives of all people affected by diabetes. Highlights of 2015 include:

YOUNG ADULT EDUCATION: We embarked on a collaboration with the College Diabetes Network to promote better understanding and support of the unique needs of young adults with diabetes as they become independent.

YOUTH EDUCATION: This summer 6,000 children and youth with diabetes attended 58 sessions of our Diabetes Camps and increased their self-confidence, diabetes knowledge and health management skills while enjoying traditional camp activities.

PROFESSIONAL EDUCATION: Attendance at our Focus on Fellows program, held for early-career endocrinologists in conjunction with the 75th Scientific Sessions, increased by 50 percent. This program encourages top talent to focus on the clinical care of people with diabetes.

RESEARCH: We received more than 100 nominations for our third Pathway to Stop Diabetes awards program, which encourages promising young scientists to dedicate themselves to diabetes research. We will announce up to six substantial awards in January 2016 and are pleased to report the first 11 grant recipients already are making significant contributions to diabetes knowledge.

AWARENESS: We launched a number of new public awareness initiatives, including America’s Diabetes Challenge with Merck, which encourages people with type 2 diabetes to get to their A1C goal, and Screen at 23, aimed at educating providers and policy makers about the need to screen Asian Americans for type 2 at a lower BMI than other groups.

POLICY: We succeeded on many legislative fronts. In April, the Special Diabetes Programs (SDP) were extended, providing $300 million in type 1 diabetes research through the National Institutes of Health and $300 million in funding for the Special Diabetes Program for Indians over the next two years. SDP has brought huge research breakthroughs that are helping to improve the lives of people living with diabetes and bring us closer to a cure. Also, by now 15 states have changed laws or statewide policies to meet all three of our major Safe at School tenets.

ADVOCACY: We grew our Advocacy Attorney Network by 350 percent—greatly expanding our capacity to fight discrimination because of diabetes at work, at school and elsewhere in daily life. We urge people who feel they have been discriminated against because of diabetes to call our toll-free number, 1-800-DIABETES (1-800-342-2383), to seek help.

This will be our first full year working with the new organizational changes we’ve made to streamline operations and improve efficiencies – designed to increase revenue so that we can fund even more research and programs, and expand advocacy and anti-discrimination efforts for people living with diabetes.

We will continue to advocate for increased federal funding and boost state and federal commitment to diabetes research, treatment and programs. In January, we will launch an Ad Council campaign to heighten awareness of pre-diabetes and type 2 diabetes risk, in collaboration with the American Medical Association (AMA) and the Centers for Disease Control and Prevention (CDC).

We take our role of representing all people affected by diabetes very seriously and in 2016, one important initiative is to increase by 20 percent the number of people who are Diabetes Advocates. What does that role entail? It can be as simple as signing a petition, writing an e-mail to your elected officials when we send you an action alert about important diabetes legislation, or visiting with your members of Congress when they’re in your home state. Diabetes, as you so well know, is America’s No. 1 chronic health crisis—and our advocates keep diabetes top-of-mind for legislators.

CWD (Children with Diabetes)

This was CWD’s second full year operating as a 501c3 non-profit. Thanks to the generous support from our many sponsors, we were able to deliver four life-changing conferences for families living with type 1 diabetes:

Friends for Life Orlando 2015 included the largest group of first-timers (over 700), the most sessions for adults with type 1 (24), the most adults with type 1 in attendance (220), and our largest room block ever. FFL Orlando remains the largest type 1 diabetes focused conference in the world, and we look forward to an even bigger and better event in 2016.

Focus on Technology - Anaheim 2015 brought the CWD experience to families living in southern California. With technology the focus, presenters included Dr. Ed Damiano and the Nightscout Team, which held three sessions about their transformational technology and approach to thriving with type 1 diabetes.

Friends for Life Canada 2015, we returned to Canada after a one-year hiatus to a sold-out conference in Niagara Falls. With wonderful presenters from Canada and the US, families from both countries enjoyed a late-fall FFL experience. A team from Nightscout joined us, helping families in Canada learn about the #WeAreNotWaiting movement.

Friends for Life UK 2015 returned to Windsor and, as always, sold out in hours. Leading faculty from the UK and the US shared their wisdom and experience with UK families, as did a European team from Nightscout, now a regular part of FFL conferences. The only sad part was the large number of families who could not attend. We hope to secure more sponsorships in future years.

This year, we have three conferences planned:

Friends for Life Falls Church in April, with a special advocacy track to help families understand what it means to be involved in policy decisions that impact people living with diabetes. We look forward to lively discussions and debate.

Friends for Life Orlando in July, with major headliners once again helping us deliver an amazing experience for families living with type 1 diabetes. New this year at FFL Orlando is a dedicated Spanish-language track on Friday for adults who have Spanish as their native language, including a research keynote and six breakout sessions. Details are online at http://www.childrenwithdiabetes.com/activities/Orlando2016/ParentsSchedule.htm

Friends for Life Anaheim in September, returning to southern California to bring a broader FFL experience, including a greater focus on the psychosocial aspects of thriving with type 1 diabetes.

Most importantly, we are grateful to be able to help make a difference in the lives of families living with type 1 diabetes, and are humbled by the support we receive from our generous sponsors.

College Diabetes Network (CDN)

CDN has made considerable strides in their mission to connect and empower students and young professionals living with diabetes:

CDN Chapters – In 2015, CDN launched a new Chapter Affiliation Structure, which provides CDN national with comprehensive data, and chapters with more customized support. To date, CDN has 70 affiliated chapters at colleges and universities across the U.S, with over 20 chapters in the process of becoming formally affiliated. CDN has added to its suite of chapter support resources, with the addition of the new Chapter Activity Guide that helps new chapters drive membership and awareness on campus. In addition, CDN’s new Chapter Outreach Kit Marketplace allows for chapter leaders to decide what CDN materials best suit their needs for recruitment and retention. CDN student members continue to have inside access to information on jobs, internships, and research opportunities. These new resources and support programs have been a direct result of student feedback provided at CDN’s Annual Retreat.

Off to College Program – This past year, CDN formally launched its Off to College Program, starting with the creation of 200 Off to College (OTC) Event Hosting Kits which were sent to clinics and organizations across the country at no cost. They include best practices gleaned from over 30 interviews with hosts from across the country and feedback from CDN students.

Student Led Initiatives – CDN Chapters across the U.S. participated in College Diabetes Week (November 9-13). Chapter members wrote blogs, held events on campus to raise awareness, shared their stories on social media and worked to create a community for T1D students on campus. CDN students also helped to produce the Diabetes Forecast Young Adult Thrive Guide.

Operations – Over the past year CDN has designed and implemented a new database system to provide a solid internal infrastructure to the organization in order to support its continued growth. Our team has also welcomed several new staff this year and continues to grow to support the high demand for their programs and resources.

Annual Retreat 2016 - Due to the demand in 2015 for more in-depth workshops, breakout sessions and networking, an extra day has been added to the upcoming retreat. CDN plans to bring 25 student leaders from different chapters together for several days of training, networking, and planning for the coming year (and s’mores….).

Chapter Stipends and Activity Grants - will be available for all Affiliated Chapters for the first time in Spring 2016, and resources such as the Chapter Start-up Guide will be updated with more perks and support available through our network.

Alumni Board - formally launched at our November 2015 Board of Directors Meeting. the board will work with staff throughout 2016 to formalize CDN’s offerings and provide unprecedented networking and mentorship opportunities.

Information Hub - Building on the development of CDN’s backend database system, CDN will be working to make its chapters, events, and resources more publicly accessible and easily searchable.

Resources for the Newly Diagnosed – prompted by discussions at our 2015 Annual Retreat, CDN’s Student Advisory Committee will spearhead creating helpful materials for young adults newly diagnosed with T1D.

Off to College Program - CDN will be working with several organization and corporate partners to launch a national release of newly formed “Off to College Booklets” that will be sent to clinics, diabetes camps, organizational partners, and via direct order. Our goal is to get this valuable information into the hands of every high school student preparing for college (and also their parents’ hands)!

More Effective Clinical Care - CDN will be hosting its third annual Clinical Advisory Committee (CLAC) meeting at the 2016 ADA Scientific Sessions, in which our leaders interact with providers and weigh in on important needed improvements in care.

Campus Safety & Improvement - CDN will be hosting a strategy meeting with key opinion leaders in the Campus Administration & Campus Health Sectors to determine a roadmap to address the current systemic issues students face on campus.

Diabetes Hands Foundation (DHF)

Our online communities TuDiabetes and EsTuDiabetes migrated to a new software platform; adding a responsive design and strong search. These improvement make it easy to access the collective wisdom of these communities while on the go. The communities continued to grow welcoming over 4,000 new members and 1.5 million new visitors in 2015 to the new platform.

Our MasterLab advocacy training event was attended by 125 participants, including participants from 5 countries and 30 states. Professional and seasoned advocacy experts shared how to be more effective in engaging with media, industry, and policymakers, and in telling the patient’s story in a way that will be a catalyst for positive change for people with diabetes.

Scholarships were awarded to 23 diabetes advocates making it possible for them to attend one of four national conferences this year. These scholarships helped insure that the patient’s perspective was represented at ADA, AADE, FFL/MasterLab, and DiabetesMine Innovation Summit.

The Big Blue Test awareness and fundraising initiative generated $10K in grants to grassroots organizations working with undeserved communities of people with diabetes. This year’s grant recipients are Sucre Blue, working in Bombay, India, and Carb DM, working on Asian and Latino outreach in the San Francisco Bay Area.
2015 was a year of massive evolution for Diabetes Hands Foundation. Melissa Lee, as interim executive director, was at the helm as we worked through the many changes and challenges. We say thank you Melissa for her dedication and devotion, and wish her all the best as she enters the next chapter of her life as a diabetes patient advocate.

As 2016 begins, we welcome Gene Kunde as the new CEO of Diabetes Hands Foundation. In accepting his appointment Gene said, “DHF has a powerful mission, serving as an important resource for those living with diabetes and their loved ones. I wanted to be part of an organization that aids and empowers individuals.” As an experienced executive, Gene brings the business acumen developed over nearly 30 years of having worked in both for-profit and non-profit organizations.

TuDiabetes and EsTuDiabetes will continue to expand and serve people with diabetes worldwide with the peer support and information that helps insure that no one touched by diabetes ever needs to be alone. Both communities will focus on Hispanic outreach and Type 2 outreach in 2016.

MasterLab will once again take place this summer in Orlando alongside the Children with Diabetes Friends for Life conference. In its third year, the focus remains informing and inspiring diabetes patient advocates so that the patient voice is heard by policymakers and industry.

The diabetes advocates scholarship program will add the Diabetes UnConference to its roster of conferences in 2016. We anticipate the scholarship application window will open late in January.

Big Blue Test will continue inspiring people to join the movement and help others by helping themselves. Each session of exercise logged online will translate into grants to grassroots organizations working with people with diabetes who are in need.