Hey, Diabetes Community - Happy New Year 2018!
It's a tradition here at the 'Mine to essentially "call the diabetes advocacy organizations to the mat" at the end of each year to explain what they've accomplished, and what they're aiming for in the new year ahead.
So once again, we asked 13 leading U.S. diabetes non-profits point-blank: What did they actually achieve in 2017? And what do they plan to make happen in 2018?
Below are the answers from the various leaders and spokes-folks of the first half of these orgs. Please tune in next week for the rest (see Part 2 here).
Note: There's a ton of great info here about what's happening in the Diabetes World, so we invite you to settle in with a cup of coffee, or even consider printing this piece out for further review... and of course, please share your thoughts in the comments section!
American Association of Diabetes Educators (AADE)
Throughout the past year, AADE continued work on our 2016-2018 Strategic Plan with a focus on empowerment, collaborations, technology and the future for diabetes educators.
At the AADE annual conference in August, we focused on empowerment by sharing the new language guidance for healthcare professionals. Together with the American Diabetes Association, AADE hopes to drive change in word choice and in communications about diabetes. We must all think about the impact of the words we use and how these can positively or negatively impact self-care. Words should be used to empower, inspire, and most importantly, drive positive outcomes.
This "patient-first" theme at the AADE annual conference included several sessions offering valuable learnings and perspectives from PWDs (people with diabetes) that were extremely well-received by attendees!
On the advocacy front, AADE was involved in developments on the state and federal level. Most recently, we were thrilled to see a bill introduced to mend the broken competitive bidding program. Since 2011, our member-driven surveys have shown that competitive bidding is failing Medicare beneficiaries and putting them at unnecessary risk. On the state level, AADE member work in Indiana is finally paying dividends as proposed legislation in 2018 should result in development of a Diabetes Action Plan (DAP). These state-run DAPs play a vital role in better serving those affected by the disease, but also focus on risk reduction to help curb the epidemic.
AADE also supported the passage of the National Clinical Care Commission Act. This bill establishes a commission that will make recommendations to Congress and the Secretary of HHS on improving diabetes care delivery and patient outcomes. AADE is working with our allies to ensure that the Commission will include individuals who have clinical and practical experience with diabetes management.
Continuing our work in type 2 diabetes risk-reduction, AADE was awarded funding by the CDC to work with at-risk populations. Targeted populations include truck drivers, African Americans, Native Americans and Hispanic Americans, with a focus on Southern states in the “diabetes belt.” Through AADE’s evidence-based DSMES (Diabetes Self-Management Education and Support) model of behavior change and education, we hope to work with these communities to greatly reduce the risk of type 2 diabetes over the next 5 years.
Sharing the value of diabetes education and educators is a key piece of the AADE mission and vision. This year, AADE developed guidance focusing on the important role of diabetes educators in formulary and medical device decisions. Diabetes educators are well armed with the knowledge to advise on formulary choices and changes, which can often have a negative impact in various areas of self-management.
Realizing the difficulties people with type 1 diabetes face as they transition through different life stages, AADE developed guidance for diabetes educators who work with persons with type 1 diabetes over the lifespan. This initiative comes in tandem with a recent joint consensus statement from AADE, ADA, AACE, JDRF and others on the importance of using meaningful outcomes measures beyond A1C.
At AADE, we recognize the increasing importance of ongoing support, and more specifically peer support, given the limited time a person with diabetes has with their healthcare provider or diabetes educator. The updated 2017 National Standards for DSMES are the foundation for achieving recognition of DSMES programs among healthcare professionals, payers and other key stakeholders. This year, ongoing support was highlighted as a key driver for improved outcomes and a vital component to any successful diabetes education program.
As an outgrowth from those national standards, AADE held a meeting of key peer support stakeholders (including representatives from DiabetesMine) to explore opportunities to improve care and better serve the ongoing, daily needs of PWDs.
This year, AADE also identified the strategic branding organization, Moveo, as a partner to help us better understand AADE past and present, and take a look into the future. Just where will AADE and diabetes educators be in 10 years? How can we design pathways that will ensure our relevance and best use of our expertise in future value-based healthcare delivery?
As we move into 2018, we are excited to see how this will take shape and define our future role!
We're keenly aware that advances in technology -- self-management tools, connected health and mobile app, etc. -- are leading to improved outcomes and quality of life for PWDs. But staying current on these new products and services as they quickly expand has become a challenge for healthcare providers. In response, AADE will soon launch DANA (Diabetes Advanced Network Access), a first-of-its kind platform that will serve as a one-stop-shop for healthcare professionals to find information on diabetes devices and technology-related education.
Beyond Type 1
We attempted to capture some of the WOW of 2017 in this reel - but it's hard to express it all!
Overall, 2017 was focused on building our community (now over 1.6 million strong!) and our programs focused on education and advocacy:
- Bike Beyond - a team of 19 individuals living with Type 1 cycled from NYC to SF, and an awesome documentary captured the adventure. The first 12 minutes of the film are available here -- with a full documentary coming in 2018.
- Our DKA Program has now launched in 18 states and in New Zealand. In the U.S. alone, the print and digital program has reached 22,000 pediatricians' offices who see 90 million patients annually.
- Beyond Type Run - a team of 16 women and 1 man living with type 1 completed the NYC Marathon.
- Snail Mail - this global pen pal club has already connected more that 5,000 T1Ds around the world.
- Jerry the Bear - we created the Give-A-Bear program and donated over 500 bears to low income T1Ds.
- We acquired the Diabetes Hands Foundation forums Tu Diabetes/EsTuDiabetes and continue to grow these, and in late summer we launched Beyond Type 1 en Español (our entire website translated for the Spanish-speaking audience, plus original content). We are now serving the Hispanic community in 19 countries.
- Our Facebook audience topped 1 million, and our combined audience across our social channels is over 1.6 million. Our app has over 25k members from 126 countries -- someone is always awake and ready to connect!
- We continued to publish top notch content on a wide variety of subjects - from mental health to breaking diabetes news to adventure travel to patient entrepreneurs, and hundreds of stories written by the community.
- Our sex, drugs and rock n' roll content as well as photo essays on life with type 1 still dominate traffic. We are especially passionate about resources for adults living with type 1 -- historically an audience that has been underserved -- and teens. We also have a fantastic collection of guides (17 at present) for teaching Type 1 to others that have been extremely well received.
We plan to scale and expands these programs, partner with other organizations on specific programs, and incorporate other organizations under the Beyond Type 1 umbrella.
Most importantly in 2018, you'll see us address cure and issues of access in big, bold ways. The specifics are under wraps for just a bit, but we're striving to be, in Beyond Type 1 fashion, wildly progressive and majorly impactful!
We continue to be a lean, nimble team -- just 9 full-time employees -- and pride ourselves on being incredibly high-touch in serving the world's largest type 1 community with great thought and integrity.
Children with Diabetes (CWD)
This year, CWD unveiled a new logo.
We hosted two important advocacy roundtable discussions on Forced Non-Medical Switching, one at ADA and one at AADE. Gathering key stake holders in the community, these discussions led to the publication of an article in “In Practice,” a publication of the AADE (“Forced Non-Medical Switching: Help Your Patients Know Their Rights”). CWD will continue to work on this important topic.
CWD conferences held this past year include --
- Friends for Life Anaheim 2017, May 5-7, returned to the Disneyland Hotel with a focus on advanced diabetes care technology and the psycho-social impact of that technology on people living with diabetes. Dr. Korey Hood opened with a keynote about “The Psychological Side of an Artificial Pancreas,” and Hollywood stunt man Mike Avery closed the conference on an upbeat note, describing his life and challenges with type 1 as he jumps from bridges, helicopters, and airplanes while pretending to be some of Hollywood’s biggest names. In between were lots of information-packed sessions by Gary Scheiner, Jamie Wood, Diana Naranjo, and Jen Block, as well as a “Meet the Experts” panel discussion led by the PADRE Foundation. PADRE also hosted a wonderful Saturday evening event.
- Friends for Life Orlando 2017, July 4-9, returned to Disney's Coronado Springs. Beginning with an inspiring and provocative opening keynote by Dr. Desmond Schatz, the sessions included a three-part advocacy track led by the Diabetes Patient Advocacy Coalition (DPAC), a diaTribe Panel Discussion, Sugar Surfing with Dr. Stephen Ponder, dedicated sessions for our emerging adults (ages 18-25), a great review of Artificial Pancreas technology and its psychosocial implications, and our first session on caring for siblings – a much-overlooked part of a family’s life with type 1 diabetes. In all, FFL Orlando had 109 sessions spanning four days for adult PWDs and parents. We also enjoyed the largest number of sponsors -- 18. The CWD Fellows Program brought our second group of young health care professionals to learn about real-life with type 1 diabetes and was a resounding success (watch for it again in 2018). Our Spanish Track returned, offering sessions in Spanish by native speakers for adults whose primary language is Spanish. Interestingly, 47% of attendees with type 1 were adults.
- Friends for Life Falls Church 2017, Oct. 6-8, focused on policy and advocacy, given its proximity to Washington, DC. The conference kicked off on Friday evening with a real surprise as Mayor David Tarter – a CWD dad himself – pronounced Oct. 6 as “Children with Diabetes Day in Falls Church, Virginia.” The conference featured two keynote presenters, Jay Hewitt and Ed Damiano, as well as a full schedule of breakout presentations including a two-day track for T1 adults. We also continued to offer a full day of advocacy sessions on Saturday, as well as grandparents sessions on Sunday.
- Friends for Life UK returned for 2017, organized by T-1 Today UK, a UK-based registered charity established to fund and host FFL UK conferences. Families from around the UK gathered at Beaumont House in Windsor for a shortened but still wonderful conference. With our UK charity at the helm, Friends for Life UK conferences will return each year.
We also began to roll out our new look and feel in 2017, especially at our conferences.
CWD will host five conferences:
- Friends for Life Anaheim 2018, coming May 4-6, 2018, with sessions including diabetes advocacy, legal rights of people with type 1, technology update, taking a break from technology, and “Reclaiming Sleepovers” for grandparents, just to name a few.
- Friends for Life Orlando 2018, coming July 10-15, will once again be at Disney’s Coronado Springs Resort. Expect the usual FFL programming for parents, adults, kids, and grandparents. The CWD Fellows Program will return with our largest group: 9 returning mentors and 10 new fellows. This program helps young health care professionals to get a better understanding of real life with type 1 diabetes. (Know a Fellow who should attend? Email Jeff Hitchcock at [email protected]).
- Friends for Life Falls Church 2018, coming Oct. 19-21, will once again have a focus on advocacy. Families from around the east coast will also enjoy the lovely autumn weather that DC has to offer.
- Friends for Life UK 2018 will be held in October in Scotland. Details are still being worked, but UK families can expect a wonderful venue with a full weekend conference.
- Friends for Life returns to Canada for FFL Canada 2018, in partnership with Connected in Motion, Nov. 2-4 in Niagara Falls. Connected in Motion will help lead the programming for adults, and CWD will lead the programming for parents and kids.
With the help of our generous sponsors who make FFL possible, our amazing faculty and staff, and in partnership with many other organizations, we look forward to continuing to make a difference for families living with type 1 diabetes in 2018.
College Diabetes Network (CDN)
CDN now has over 5,000 young adults involved throughout CDN’s network and campus based chapters on over 115 colleges and universities! New chapters are popping up each month, so keep an eye on our chapter map to see if there's one in your neighborhood. In 2017, we integrated our map with Google Maps so you can search for CDN Chapters, Off to College events, and JDRF Type One Nation Summits using our Off to College curriculum near your zip code.
This past year, we also:
- Launched a groundbreaking new resource for those diagnosed with T1D between ages 17 and 25. Check out our "You’ve Got This” video series and guide. We can’t wait to continue sharing it with individuals, clinics, hospitals, and partners in 2018.
- Held an important Facebook Live conversation related to Mental Health and T1D. Five students, plus clinicians and experts, talked about their experiences, tips, and resources for managing these often comingled experiences. If you missed it – don’t worry! You can view the recording here.
- Launched a pilot program on over 20 college campuses across the United States. Schools like Yale and the University of Georgia will be using newly created CDN resources in their campus health centers, disability resource, and counseling offices. Stay tuned for a larger nationwide rollout of these resources in Fall 2018!
We will continue to address unmet need areas by releasing a new resource for young adults entering the workforce, updating our Off to College materials (thanks to feedback from our students and parents), and launching Student Membership Benefits to support all young adults in our network.
We will also be increasing our work to amplify the voice of our young adult members to partners, through partnerships with:
- National Certification Board of Diabetes Educators (NCBDE): NCBDE will be hosting focus groups regarding diabetes education at CDN’s Annual Retreat, and partners with CDN to bring students interested in pursuing a career in diabetes education to the American Association of Diabetes Educators (AADE) annual conference -- matching participants with mentors and providing an unparalleled opportunity for professional development.
- JDRF: CDN Off to College Materials will be used as core curriculum at all T1 Nation Summits in the U.S. We will also connect JDRF chapters with local CDN students to speak on summit panels.
We will also be:
- Promoting leadership amongst our students through hosting our 5th Annual Retreat and accepting a new cohort of students, our “NextGen Leaders," to attend professional diabetes conferences with staff in the summer.
- Launching CDN Ambassador Program, so that members of the local community can sign up to act as local resources and support to students and chapters.
And soon after the New Year, we will be sharing our new Strategic Plan for 2018-2020! This plan builds on the community, resources, and partnerships we have worked so hard to grow since we were founded. It builds on CDN’s strengths to foster an organization which:
- Understands the barriers faced by the transitioning young adult population and has the tools and direction to assist young adults in overcoming these barriers.
- Advocates on behalf of young adults with T1D, leveraging a reputation of excellence and collaborative strategic alliances to ensure our members’ voices are heard across the sector.
- Creates an environment rich with opportunities for passionate young leaders to pursue inspiring careers in the diabetes sector.
Diabetes Patient Advocacy Coalition (DPAC)
In March, DPAC hosted the first annual CAPS (Community Advocacy Policy Summit), bringing together diabetes nonprofits and the industry for crucial conversations about challenges and opportunities to collaborate. Not only was the feedback positive, but many collaborations and cross-promotions have occurred between nonprofits from this summit. We are looking forward to hosting CAPS again in 2018.
Thanks to a grant from Lilly Diabetes, DPAC launched a mobile app that allows anyone in the U.S. to call, tweet, email, or Facebook policy makers on diabetes issues using their mobile devices.
The Affordable Insulin Project website was designed to provide guides and worksheets for people impacted by diabetes to spark conversations with employers about their healthcare plan. In addition to guides and worksheets, a list of all the patient assistance programs and copay cards is offered.
Specific advocacy efforts included:
● Supported H.R. 309/S. 920 (National Clinical Commission Act of 2017) through letters and a patient campaign; AACE recognized DPAC as being instrumental in the bill’s success.
● Our CEO gave expert witness testimony to the E&C health subcommittee on H.R. 3271 (Protecting Access to Diabetes Supply Act of 2017) in July. DPAC has been spearheading the push to alter the Competitive Bidding Program for diabetes testing supplies since its inception. The Co-Chairs of the Congressional Diabetes Caucus recently sent a letter to interim HHS Director Hagan about this issue.
● Helped drive California’s AB 447 (CGM for Medi-CAL patients) through the California Assembly and Senate. While it was passed through without a single NAY, Gov. Brown chose to veto it.
● Provided support letters opposing non-medical switching and closed formularies for Medicaid patients in North Carolina and Massachusetts, respectively.
● Provided policy advocacy sessions at CWD’s FFL in Anaheim, Orlando, and Falls Church; The Diabetes UnConference in Las Vegas, CDN Annual Student Retreat in Maine, and DiabetesSisters in Alexandria, VA. These advocacy sessions included representatives from FDA, NDVLC, lobbyists, and current/former House and Senate staffers.
● Our CEO participated in the Republican State Leadership Committee (RSLC) Patient Advocacy Policy Roundtable at AstraZeneca for the diabetes community, sharing the diabetes community’s policy perspective and concerns.
● Several nonprofit collaborations and cross-promotions took place in 2017:
- College Diabetes Network and DPAC worked together on a Political Advocacy Guide for CDN members
- NDVLC and DPAC shared the stage at CWD conferences on affordable access to insulin
- DPAC provided cross support for JDRF’s #Coverage2Control campaign and JDRF has included the Affordable Insulin Project worksheet in their online Insurance Guide
- DPAC provided a platform to T1D Exchange’s effort to contact Congress about health reform impacting T1D
- Promotion and support for the Affordable Insulin Project was given by JDRF, Children with Diabetes, DiabetesSisters, CDN, NDVLC, and Beyond Type 1
DPAC will continue many of our initiatives, including the DPAC Mobile App, the Affordable Insulin Project, CAPS, in-person policy advocacy sessions at all CWD conferences, and thanks to Janssen, our online DPAC AACE Ask an Expert advocacy training program. We will continue to issue statements on important issues related to the diabetes community.
With midterm elections expected to significantly alter the makeup of the 116th Congress and some state legislatures, DPAC will be focusing on pushing support for the current federal bills impacting people with diabetes: H.R. 3271/S. 1914 (Protecting Access to Diabetes Supplies Act of 2017) and more. We will be bringing DPAC’s voice to FDA over blood glucose accuracy and the inability to take inaccurate meters off the U.S. market. Our immediate solution is to have these meters black box labeled and then to proceed with a longer-term solution of removal of all meter that do not meet FDA accuracy standards. CMS will continue to hear from DPAC and the diabetes community about the inability to use smart devices for Dexcom G5 Medicare beneficiaries. We will also address the concerns about AP systems being denied by CMS in 2018.
We foresee that drug pricing will continue to be a hot topic in 2018, especially as an election issue, and we will continue to offer the patient perspective on solutions presented by policy makers. On the state level, we will continue to monitor nonmedical switching, closed formularies, and Medicaid restrictions for people with diabetes.
DPAC will launch their Patient Advisory Board in early 2018, which will provide the foundation of a wider advocacy volunteer network addressing DPAC’s primary areas of safety, quality, and access.
Recognizing that many advocates may not be selected for traditional days to advocate on Capitol Hill, we will also bring a group of a cross-representation of the diabetes community, combining all ages, genders, types, and race/culture to D.C. for intensive policy advocacy training. Our Diabetes Policy Education Program will set these advocates on a path to be leaders in DPAC and trainers in their states as the program grows in 2019 and beyond.
T1International connected with the Hagens Berman law firm about its lawsuit on insulin pricing, and encouraged people with diabetes to share their story as part of the case. This lawsuit remains pending in New Jersey federal court, and is one of several challenging insulin manufacturers and those involved in the insulin pricing process.
We received an update about the Insulin for Syrians campaign, and the £9,388 ($12,500) raised during this Insulin for Syrians campaign was used to purchase 2,400 vials of insulin for a Syrian American Medical Society clinic in the city of Idleb, Syria.
T1International shared information about the critical situation in Venezuela, where kids and adults with diabetes face dire access issues for insulin and supplies. We are continuing to communicate with people in Venezuela and those who have fled to find ways to support. No insulin can leave or enter the country, so it's a huge challenge, but our advocacy toolkit is now available in Spanish and we're sharing copies with parents doing advocacy on the ground.
We also translated our toolkits into French and shared those and the Spanish-translated toolkits with our partners around the world.
In May, T1International provided advocacy training in Uganda, and those attending this training set a goal of advocating to get the government to provie 1 syringe per day to people with T1D by the end of the year.
In June, T1International and other organizations sent a letter to the WHO Director General-elect, encouraging more focus on diabetes and access issues.
We began our online advocacy training program in August, giving advocates in different countries around the world the tools to carry out an advocacy plan. We have trained six advocates with plans to train at least 15 more in 2018.
T1International teamed up with People of Faith for Affordable Medicines to host an #insulin4all rally outside of Eli Lilly HQ in September to call for transparency and lower insulin prices. We hope to do other actions like this in 2018.
T1International did a joint action in December with P4AD (Patients For Affordable Drugs) regarding value based pricing and the dangers it could bring for people living with diabetes. The action led to a meeting with Congresswoman Diana DeGette's team to raise concerns of patients and discuss wider insulin access/affordability issues.
T1International received a Small Charity, Big Impact award, which helped provide more recognition and financial support in carrying out the organization's mission and goals.
Throughout the year, T1International also worked on publications related to global insulin access issues around the world – from being featured in a Foreign Affairs article, an article published by Trustee James Elliott in The Nation on the HHS Secretary nomination Alex Azar – that latter led to a joint action raising concerns about the nomination.
A few of our plans for 2018 have already been highlighted above. You can be certain that we'll keep doing what we are doing, but on a growing scale. To name another few big ticket items, T1International will:
- Hold the second run of our insulin and supply out of pocket cost survey, hopefully improving on the 2016 survey and gaining even more responses.
- Train more advocates and work closely with them to carry out their advocacy plans locally.
- Hopefully have the funds and capacity to deliver our first T1International-led, in-country advocacy training workshop.
We thank these organizations for sharing, and NEXT WEEK we'll feature PART 2 of this report, to include:
The American Diabetes Association (ADA), Diabetes Sisters, diaTribe Foundation, Diabetes Research Institute (DRI), JDRF, Nightscout Foundation, and Taking Control of Your Diabetes (TCOYD).