HAPPY NEW YEAR 2014!!
At the close of each year, we like to tap the top diabetes advocacy organizations to share what they feel they’ve accomplished, and what kinds of plans / goals / strategies they have in mind for the new year ahead.
So, once again we asked the pointed questions: Did they live up to their own expectations for 2013? And what do they envision for continuing to help the D-community in 2014?
Below are the answers we received from their various leaders and spokespeople (presented in alphabetical order).
Another great year down, and headed exciting places for the next? Again, you be the judge…
2013: There were a multitude of public-facing initiatives we worked on in 2013 and will continue to focus on in 2014 that seek to enhance the lives of people living with diabetes and prediabetes. Just some of the projects:
Building on a 2012 grant we received from the CDC to expand the National Diabetes Prevention Program, AADE is now funding 30 sites in 14 states. Through these sites, about 700 people at risk for diabetes are participating in a year-long lifestyle change program. (Data shows that people who have gone through the program are 58% less likely to develop diabetes.) AADE’s programs all started in May/June 2013 so we don’t have final numbers yet, but results so far are positive. An overarching goal of this project is to make this lifestyle change program a covered healthcare benefit for people with prediabetes.
We were very active on the legislative and regulatory front. We continued to advocate for licensure of diabetes educators at the state level (the first diabetes educator in the nation was licensed by Kentucky in November). We also worked on issues relating to meter accuracy, strip safety and competitive bidding at the federal level.
2014: Early in the year, we will be releasing results of two recent studies: one that gauged PWDs knowledge about meter accuracy and the other that investigated whether Medicare mail-order suppliers are following the patient choice guidelines dictated by competitive bidding legislation. We’ve been increasing our partnership efforts with the Diabetes Online Community, collaborating on several of the initiatives mentioned above. The DOC will also be represented on the speaker’s podium at the 2014 AADE Public Policy Forum in Washington, DC, in May.
Other grants we’ve received are allowing us to conduct a demonstration project to determine the effectiveness of diabetes education provided via smartphones; donate 1,320 pairs of orthopedic shoes to PWDs who wouldn’t normally be able to afford them; implement and evaluate team-based models of care; and create education materials on a variety of topics such as insulin injection techniques. The AADE Foundation is also funding 10 diabetes education programs in low-income areas, ensuring that people with diabetes and prediabetes receive care regardless of their zip codes.
Lastly, in January, we will be releasing enhancements to Diabetes Goal Tracker, our free mobile app available on iPhone and Android that is designed to help PWDs set, track and achieve their diabetes management goals. Originally launched in August 2013, the new features will include the option for users to connect with one another and send messages of encouragement. We will also be releasing a Spanish-language version.
2013: Every day, thousands of American Diabetes Association volunteers, staff and corporate supporters work to Stop Diabetes®. Accomplishments include:
- We collaborated with several new celebrities to help us spread the word about diabetes awareness and prevention. These include the Drive to Stop Diabetes diabetes awareness initiative with Lilly Diabetes and NASCAR driver Ryan Reed, who lives with type 1 diabetes; entertainer (rapper) Lil Jon, whose mother died of complications from type 2 diabetes and whose appearance on NBC’s “All-Star Celebrity Apprentice” raised $195,000 for the Association; and professional football player Duane Brown of the Houston Texans, who also has a family history of type 2.
- This year about 800,000 people have taken our Diabetes Risk Test to learn their risk for developing type 2. Those identified as high-risk were encouraged to see their physician — getting us one step closer to stopping diabetes.
- Arizona and Missouri passed legislation to help children with diabetes stay Safe at School. And in August, the Association won a long, hard-fought legal battle when the California Supreme Court ruled that state law permits school personnel, who are not nurses, to be trained to administer insulin to students with diabetes.
- In November, the Association redesigned the website for its healthy living magazine, Diabetes Forecast. Accessible from any mobile device, DiabetesForecast.org is a one-stop visit for people living with diabetes, their families and caregivers that features healthy reminders and tips for a busy life; motivational pick-me-ups from members of the diabetes community; scientific and medical news; delicious recipes; and more.
2014: For this year, we’d like to mention two very exciting things:
- In 2013 we launched the first annual competition for Pathway to Stop Diabetes, a bold new initiative to inspire and fund the next generation of diabetes researchers. We will announce the first class of Pathway grant awardees in early 2014. With awards of up to $1.625 million each, these exceptional scientists will get right to work chasing breakthroughs in diabetes prevention and treatment. Also, the second call for nominations will open in early 2014.
- The Drive to Stop Diabetes initiative will continue to raise awareness and educate people about the disease in 2014. Ryan is scheduled to run a full NASCAR Nationwide Series for Roush Fenway Racing, driving the No. 16 American Diabetes Association Drive to Stop Diabetes presented by Lilly Diabetes Ford Mustang.
Diabetes Hands Foundation (DHF)
2013: Diabetes Hands Foundation has three program areas: our online communities, the Big Blue Test, and the Diabetes Advocates program. On all three fronts lots was accomplished in 2013!
In the fall of 2013, we received approval for a new $200,000 grant from The Leona M. and Harry B. Helmsley Charitable Trust, to expand our educational offerings and reach of our growing online communities, particularly among Spanish-speaking users, and further develop our advocacy resources. Manny Hernandez, President of DHF, was honored with the American Diabetes Association Community Award an
In 2013, we celebrated 6 years of our online communities, TuDiabetes.org (in English) and EsTuDiabetes.org (in Spanish), which now have close to 60,000 registered members from all over the world. The findings of researchers at Children’s Hospital Boston (our partner since 2009) about our members’ experiences with hypoglycemia, were published in the February 2013 issue of JAMA IM.
The Big Blue Test was a success for the fifth year in a row. At the AADE conference this summer, the Big Blue Test poster earned first place, the Big Blue Test iPhone app was updated and a new Android version was launched, and over 20,000 Big Blue Tests were collected at BigBlueTest.org and via the apps. This translated into $10,000 worth of Big Blue Test grants going to three worthy organizations that help people with diabetes in need.
The Diabetes Advocates program added more advocates this year. Our membership grew from 85 in 2012 to over 120 in 2013. The group is more diverse than ever and will continue to grow and diversify. We expanded the scholarship program by providing scholarships to 8 advocates (up from 3 the previous year) to attend diabetes conferences. We held a number of webinars and media trained over 20 advocates, while our website (DiabetesAdvocates.org) was redesigned. We stood in strong support of the “StripSafely” initiative developed by Bennet Dunlap; the petition for a diabetes meeting with FDA by diaTribe, and the “Spare a Rose Save a Child” campaign in support of the International Diabetes Federation’s Life For a Child program.
2014: We just announced the election of former Acting and Deputy U.S. Surgeon General Ken Moritsugu, longtime diabetes research advocate Dayton Coles, and Diasome Pharmaceuticals CEO Bob Geho to the Diabetes Hands Foundation Board of Directors. Their terms begin in January 2014.
For our 2014 online communities and Big Blue Test programs, we will focus on deepening the levels of engagement through enhancements at the platform and app levels. We will also strengthen our mission by partnering with other groups in the sector: from grassroots organizations to reinforce our online offerings, to academic research groups with which we will collaborate in the context of PCORI (Patient-Centered Outcomes Research Institute) grants, and tightening collaboration with app development companies in connection with our Big Blue Test program.
We need a patient at every table with their hearts full of passion and their brains equipped with key messages backed by data to fuel a diabetes movement. To drive this effort, we’re starting to put together a Diabetes Advocacy Congress during the second half of 2014.
Diabetes Research Institute (DRI)
2013: Toward our goal of a biological cure for type 1 diabetes, in 2013 we built upon recent advances in the development of a “mini organ” to mimic the native pancreas. DRI scientists made significant progress in the key components of the BioHub, which we refer to as the Three S’s — Site, Sustainability and Supply.
Site – We tested the silicone scaffold platform in non-human primates which led to the next step: we’ve contracted with a California company to manufacture the clinical-grade silicone scaffolds with the ability to scale-up production for use in patients. We’ve continued to meet with the FDA to gain approval for clinical trials.
Sustainability – We’ve made significant progress in our work with MDSC (Myeloid-Derived Suppressor Cells) to induce immune tolerance to transplanted islets and now have data confirming the immuno-suppressive properties of MDSC. During our studies of these umbilical cord blood-derived cells, we discovered that this cell population shares the characteristics and the criteria of MDSC as well as Fibrocytes, which play a key role in promoting wound healing. This novel and unique discovery is a major finding that will play a key role in the BioHub.
We have also taken steps to optimize our conformal coatings and nanoscale encapsulation strategies. In preliminary studies, the coatings were able to protect islets from rejection while achieving normal blood sugar levels. In animal studies, diabetes was reversed in less than one week and the islets continued to function for several months without the use of any anti-rejection drugs.
Another major advancement has been to reprogram the acinar tissue or non-endocrine pancreatic cells into insulin-producing cells. Research in this area has progressed over the last three years; however, we recently discovered a single molecule that dramatically increases the reprogramming efficiency of this tissue which makes up 98% of the organ. Of significance is the molecule used to achieve this result is already in clinical use for other conditions.
Also, we fast-tracked a new initiative with collaborators in Milan to convert a population of skin cells into insulin-producing cells. The initial findings were reported in the May issue of PNAS.
2014: We will continue to build on our progress in these three strategic areas to move the BioHub toward approval for the clinical setting.
Progress continues on identifying the best BioHub Site with the approaches described above. For Sustainability, our focus will continue on using MDSCs. The next series of experiments will be focused on defining the immuno-suppressive effects of these cells.
We are continuing our research with Regulatory T-cells (T-reg), which are critical for maintaining immune system balance. DRI researchers have focused on using IL-2 (Interleukin-2) in low doses to boost the levels of T-regs and regain the balance needed to potentially reverse autoimmunity. To learn more about this work, read the recently-posted Under the Microscope interview with Dr. Alberto Pugliese.
We continue to work with collaborators at the University of Louisville and Hackensack University Medical Center to adapt a protocol using donor bone marrow to re-educate the immune system to accept islets from the same donor as the bone marrow.
International Diabetes Federation (IDF)
2013: The World Diabetes Congress attracted over 10,300 delegates from 140 nations to Melbourne, Australia, and included a new stream dedicated to the challenges around diabetes in indigenous peoples. The Congress received positive coverage and attention from sporting stars such as gold medal winning Olympian Cathy Freeman, in turn raising the profile of diabetes in Australia. It also brought the realities of diabetes home to the Western Pacific region which has the highest number of people with diabetes in the world.
Additionally at the Congress, members of more than 50 parliaments from around the world signed the Melbourne Declaration. The signatories committed themselves to working across Parliaments to ensure that diabetes is high on the political agenda in every country. They want to see more preventative work, and then early diagnosis, management and access to adequate care, treatment and medicines is available for all those living with diabetes.
In Melbourne IDF’s Young Leaders were also reunited to discuss progress on their national diabetes projects, young leaders from Germany, Granada and Australia are already inspiring diabetes action campaigns in their home countries.
2014: Our goal is to reinforce a whole-society approach to tackling the diabetes epidemic. Diabetes is not just a health issue, but also a development challenge. IDF will seek to approach new partners both inside and outside of the diabetes world. IDF is already partnering to combat and increase awareness and understanding of diabetes complications such as cardiovascular disease (CVD) and diabetic retinopathy. We hope these partnerships will strengthen IDF’s position when it comes to negotiating diabetes targets and political action plans with national governments and with organizations such as WHO (the World Health Organization).
In 2014, we are also looking forward to the United Nation’s Non-Communicable Diseases (NCD) review following 2011’s High Level Meeting. This review will provide a significant opportunity for stock-taking on progress, including sharing successes, lessons learned, opportunities, and recommendations to guide the diabetes response beyond 2014. This will be an invaluable opportunity for us to shape the future of diabetes and other NCDs.
2013: JDRF has made noteworthy progress on our plan to deliver a stream of life-changing therapies that eliminate the burdens of T1D from people’s lives and ultimately turn Type One into Type None.
In 2013, we moved closer to achieving closed-loop artificial pancreas (AP) systems through real-world clinical studies of treat-to-range AP systems, which are designed to automatically maintain basal glucose levels within an acceptable range. Participants in these trials are seeing important benefits of using such technologies. We also deepened our understanding of the ways different gut microbes and beta cell stress influence the autoimmune response that leads to T1D. Additionally, JDRF efforts to prevent T1D took a big step forward with the launch of a clinical study testing a vaccine designed to slow or halt the progression of the disease through rebalancing the immune system.
We also made progress toward restoring insulin independence in people with T1D through advances in beta cell encapsulation research. These include promising results from preclinical and clinical studies that tested materials to protect implanted beta cells from the body’s immune attack and produce insulin. To speed this goal even further, we formed the JDRF Encapsulation Consortium, which brings together leading scientists from around the world in a collaborative effort to discover, develop, and advance future-generation encapsulation technologies.
JDRF also announced two groundbreaking funding mechanisms to translate basic research into the clinic: our partnership with Pfizer’s Centers for Therapeutic Innovation and our support for creating T1D Innovations, a novel venture-creating entity designed to accelerate the development of innovative T1D therapies. Along with our existing partnership on numerous projects with The Leona M. and Harry B. Helmsley Charitable Trust, these collaborations seek outside-the-box solutions to the challenges of moving T1D research through the R&D pipeline.
JDRF’s advocacy efforts help define the regulatory path for new T1D therapies to rapidly move through the pipeline and bring additional resources to support our mission. JDRF’s most important advocacy accomplishment in 2013 took place at the beginning of the year with Congressional reauthorization of the Special Diabetes Program (SDP), which provides $150 million per year in federal funding for T1D research to the National Institutes of Health. Also in 2013, the FDA’s approval of a low-glucose suspend device represents successful attainment of the first step in JDRF’s six-step AP-development pathway, thanks in large parts to JDRF’s advocacy efforts to define the regulatory approval requirements of this and other AP technologies.
2014: JDRF anticipates supporting even more opportunities to move potential therapies further along the T1D research and development pipeline through a number of proof-of-concept clinical studies. Specifically, JDRF looks forward to new, real-world AP studies of predictive low-glucose suspend and automated glucose delivery systems. We expect further innovation through trials testing approved drugs for type 2 diabetes to evaluate their value on improving glucose control and improving residual beta cell survival in individuals with T1D. JDRF is also excited at the prospect of trials testing the ability of encapsulated beta cells to survive the body’s autoimmune attack. We expect beta cell encapsulation clinical trials to commence with at least one JDRF-funded collaborator, which could be important step toward achieving insulin independence in people with T1D. Finally, reauthorization of the SDP will continue to be a JDRF priority in 2014.
2013: This year closed phase one of development of the four components of T1D Exchange: the Clinic Network and Registry, the Biobank, and the Glu community, which has grown to nearly 8,000 members, and continues to grow each day. We traveled widely to raise awareness about Glu, attending the Friends for Life conference in Florida, the Young Leaders in Diabetes program as part of the IDF’s World Diabetes Congress in Australia, and many other events. Ten studies were conducted via Glu, ranging from exercise habits to infusion sets, and our findings on the effects of injectable glucagon were shared with the FDA.
Several features on the Beacon Hill Bionic Pancreas study drew immense interest. We shared key findings from our Clinic Registry, such as average A1c levels by age and frequency of DKA incidents. We simultaneously opened the T1D Exchange database to our users, who can now search 28 fields to see how they compare with more than 26,000 people with T1D. The T1D Exchange Biobank collected thousands of specimen samples, which include DNA, RNA, and plasma for use in research. Samples from a large residual C-peptide study have proven invaluable to researchers interested in understanding the immune mechanisms in T1D and markers of T1D progression.
Our inaugural annual meeting focused on advancing development of new therapies and products; addressing the complexity of making devices and data more interoperable; and identifying opportunities to support the investment and research community needs. JDRF awarded us a $2.8 million grant to study the use of metformin in T1D. We also became a special partner along with the Joslin Diabetes Center in T1D Innovations, a joint venture between JDRF and PureTech, created to supply funding for therapies and start-ups. T1D Exchange is growing its membership base, with more pharmaceutical and medical device companies joining as partners to collaborate on a number of projects. As part of Diabetes Awareness Month, CEO Dana Ball raised awareness about our mission in an insert appearing in USA Today.
2014: In 2014, we will implement phase two of our plan, and explore opportunities to offer the T1D Exchange program model to a myriad of potential disease groups through our newly launched parent organization, Unitio. A survey on CGM (continuous glucose monitor) use will begin early in the new year, and many other studies are in the works, including one on insulin and device use and healthcare transitions. Additional data will be added to our T1D Exchange database, and our Biobank will begin accepting sample requests from the entire T1D research community.
2013: TCOYD had another record-breaking year of educating and empowering people with diabetes to lead happier and healthier lives. We’ve had a remarkable conference season with our highest attendance numbers ever and added new, more focused, type 1 and type 2 tracks to our conferences. We also launched The Edelman Report.
With generous support from The Medtronic Foundation and The Helmsley Charitable Trust, TCOYD was able to individualize the way people with diabetes learn and gain the tools they need to manage their condition. An all-inclusive type 1 track was developed to address the different educational needs between the two conditions. TCOYD has always made sure that the information and education people receive at our conferences addressed the needs of people with both type 1 and type 2, but now, with the two different individualized tracks, we can really focus in on T1D special needs and wants. The new individualized track has brought an influx of type 1’s to our national conferences and their evaluations tell us we are getting it right for them.
The Edelman Report is our new, innovative, weekly online video series featuring Dr. Steven Edelman sharing his thoughts on current topics in diabetes. Dr. Edelman keeps it ‘short and sweet,’ but information packed and infused with his famous, slightly quirky, humor. This is so much fun and has been received in a phenomenal way by then public. Each week Dr. Edelman films a 3-6 minute segment that is available on YouTube and our website and, from the public acceptance is has received, we expect this will be a long-lasting series.
2014: TCOYD will continue to expand the type 1 and type 2 conference tracks, and bring cutting-edge diabetes management strategies to nine more cities in the United States, including one for Native Americans. TCOYD will roll out our new WeR1 website which, in its simplest definition, is a registry that will connect diabetes professionals who also have type 1 diabetes, with one another. TCOYD will also launch our Online Research Registry — the newest way for people with diabetes to get involved in the ever-evolving world of diabetes care and research. Individuals who sign up can play a personal role in assisting with the advancement of diabetes management strategies by participating in web-based online surveys and telephone interviews.
CWD (Children with Diabetes)
2013: For Children with Diabetes, 2013 was a year of record conference attendance and a new beginning. Our conferences began with Focus on Technology in Washington, DC, on Superbowl Weekend, followed by Friends for Life Canada in Toronto, Ontario a month later. In April, the CWD team headed to Glasgow, Scotland, for our fifth Friends for Life UK conference and first event in Scotland. Sir Michael Hirst, President of IDF, opened the conference, welcoming CWD families to his home town. Highlighting the social activities as a traditional Family Ceilidh featuring the CWD gentlemen smartly attired in appropriate Scottish kilts. A record crowd of over 3,500 traveled to Orlando in July for Friends for Life Orlando 2013, and a final Focus on Technology conference in Cincinnati closed out the year. In December, Children with Diabetes left Johnson & Johnson to operate as a non-profit company.
2014: This year will see a return to an independent Children with Diabetes. Scheduled conferences include Friends for Life Orlando in July, Friends for Life UK near London in August, and Focus on Technology at Disneyland in California in October. We are grateful for the support and well wishes from the CWD community, and look forward to continuing to make a difference for families living with type 1 diabetes everywhere.
… which makes us think that 2014 is going to be a very productive year indeed.
Cheers to that!!