Hey, Diabetes Community! It’s a tradition here at the ‘Mine to essentially “call the diabetes advocacy organizations to the mat” at the start of each new year by probing their accomplishments and goals for the year ahead.
So as we head into a new decade, we asked six leading diabetes nonprofits: What did they actually achieve in 2019? And what do they plan to make happen in 2020? Below are the answers — in their words — from their various leaders and spokes-folks.
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.
In 2019, ADA’s Government Affairs & Advocacy successes helped improve the lives of millions with and at-risk for diabetes through our tremendous victory in state and federal legislative and regulatory wins. Additionally, we helped to continue breaking down historic barriers for people with diabetes facing discrimination through our legal advocacy. Here are some highlights of what we achieved:
Protecting and expanding access to affordable care
In 2019, the ADA continued working to defend the Affordable Care Act (ACA), including the consumer protections that are important for people living with diabetes. In addition to the work done at the federal level, the ADA opposed legislative threats to ACA coverage and supported legislation taking action to further protect that level of coverage in states.
We expect our work defending the ACA and its patient protections to continue in 2020. We will continue our work at the state and federal levels related to marketplace changes and non-ACA-compliant health plans.
Increasing access to emerging diabetes technologies
In 2019, as part of our association-wide efforts to combat Therapeutic Inertia, the ADA launched a coalition to address Medicare coverage of existing and emerging diabetes devices and technologies. The effort includes patient and provider organizations and will include legislative and regulatory approaches to changing problematic coverage policies.
This effort will build upon the work we have already done to request changes in the coverage policy for insulin pumps and continuous glucose monitors. We expect our work to improve Medicare coverage for people with diabetes and prediabetes to continue throughout next year. The diabetes technology coverage project is slated to continue through 2020.
In 2019, the ADA made considerable progress in advancing the insulin affordability initiative. During the first half of the year, we worked to secure witnesses for two committee hearings held on drug pricing and insulin affordability. The ADA also worked with the co-chairs of the Senate Diabetes Caucus on legislation to address the rising cost of insulin.
On July 22, Senators Jeanne Shaheen and Susan Collins introduced the Insulin Price Reduction Act in the Senate. This legislation seeks to lower the price of insulin by encouraging manufacturers to reduce the list price of all insulin products to their 2006 list price. This was significant because it was the first federal legislation addressing insulin affordability that earned ADA’s endorsement.
In addition, our advocacy at the state level led to tremendous momentum in driving states to act to reduce the cost of insulin. Colorado became the first state to pass legislation capping copayments on insulin to $100 per month. The legislation also contained a provision directing the State Attorney General to investigate insulin prices and develop recommendations on policy to address rising insulin prices. Six additional states introduced legislation capping copayments — Florida, New Jersey, New York, Michigan, Ohio, and Wisconsin. The ADA expects to engage on this legislation in 20-plus states in 2020.
Lastly, ADA launched a new communication and engagement platform to help people with diabetes better understand legislative efforts to make insulin affordable by distilling complicated proposed bills into a more consumer-friendly format.
Call to Congress 2019
More than 200 diabetes advocates, including children and adults living with diabetes, caregivers, healthcare providers and researchers, came together for our annual Call to Congress. The group held over 200 meetings with Congressional offices to urge policymakers to make diabetes a national priority.
Diabetes advocates asked Congress to increase federal funding for diabetes research and programs, make insulin affordable, and protect access to adequate and affordable health insurance. As part of the program, our advocates heard from distinguished speakers including U.S. Surgeon General Jerome Adams.
This year, for the first time ever, we launched Call to Congress Week of Action initiative in which advocates received a different call to action each day of the week, ranging from action to support diabetes funding for research and programs, raising awareness of ADA’s Type 2 Diabetes Risk Test, insulin affordability, and fundraising. This resulted in thousands of calls and emails to elected officials, more than 630 risk tests taken, and a flood of social media posts with our #ADACall2Congress hashtag.
Advocacy victory for commercial pilots
The ADA celebrated a historic victory for people with diabetes when the Federal Aviation Administration published a protocol for evaluating commercial pilots with insulin-treated diabetes. To date, insulin-treated pilots have never been permitted to fly a commercial aircraft. This change means there is one fewer career option closed off to people with diabetes and is the result of a decade of ADA led advocacy.
Hurricane relief for people with diabetes
The ADA, Insulin for Life–USA, and the Juvenile Diabetes Research Foundation (JDRF) are the founding partners of the Diabetes Disaster Response Coalition (DDRC), a coordinated disaster-response effort with the American Association of Clinical Endocrinologists (AACE), the American Association of Diabetes Educators (AADE), Beyond Type 1, the Diabetes Research Institute Foundation, the Endocrine Society, Insulet Corporation, The Leona M. and Harry B. Helmsley Charitable Trust, Lilly Diabetes, Novo Nordisk, Sociedad Puertorriquena Endocrinologia Y Diabetologia (SPED), and T1D Exchange.
The DDRC leverages collective resources to bring together the diabetes community, public agencies, disaster response organizations, retailers, elected officials, drug and device manufacturers, and others to:
- Prepare people with diabetes and their caregivers with the information and resources to remain healthy and safe during a disaster.
- Remove roadblocks to patient access to prescriptions and diabetes supplies during times of disaster.
- Support and increase access to diabetes specialists to assist with diabetes care in shelters and other health care settings during times of disaster by sharing information between diabetes specialists/providers and those organizations that place volunteers on the ground.
- Serve as a communications hub during times of disaster, helping to identify and address unmet medical needs of people living with diabetes by connecting them to providers on the ground.
In 2019, the DDRC continued to provide support to those affected by hurricanes and other natural disasters including wildfires and flooding. Efforts included printable documents detailing resources and support through the ADA Call Center at 1-800-DIABETES, plus how to:
- build a diabetes emergency plan and kit
- safely store insulin in the event of an emergency
- safely switch from one insulin to another if your usual insulin is unavailable
And, importantly, Insulin for Life USA continues to collect unexpired and unopened diabetes supplies for certification and redistribution to those in need. All resources and more information is available for free download at diabetesdisasterresponse.org.
Diabetes camps and tech use
The ADA is also leading the way to ensure that staff and volunteers are ready to support the newest and most innovative technology solutions for diabetes management. With the support of The Leona M. and Harry B. Helmsley Charitable Trust, the ADA convenes and annual meeting of medical leaders and camp executives to address the changing landscape, determine best practices, and produce resources for all programs serving children with diabetes.
In 2019, ADA changed their policy on cell phones at diabetes camp to allow for use as a medical device and also focused on supporting DIY technology. Looking ahead to 2020, the leaders from the ADA, the Diabetes Education and Camping Association, and camps (both ADA and independent programs), are drafting new hypoglycemia protocols to enable use of CGM trend lines, particularly during the overnight hours.
Plus, in 2020, the Association will offer live coaching, guidance, and support for programs serving children with diabetes at diabetes camps and non-diabetes camps. All resources, including tip sheets, training materials and protocols are available for download at diabetes.org/summercamp.
Diabetes food hub
The ADA’s food and recipe website, the Diabetes Food Hub, saw new content, new features, and an expanded audience in 2019. The website unveiled hundreds of new recipes, including dishes for multi-cookers (such as the Instant Pot), air fryer–friendly meals, and a selection of Spanish-language recipes.
Search and browsing at the website was also improved, and paired with the new content, the site saw a 268 percent increase in user engagement. Exciting things are in store for 2020 as well, including a number of new interactive meal planning features, tools to make shopping easier, and collaborations with partners to bring healthy meals directly to people with diabetes.
Know Diabetes by Heart
The ADA joined forces with the American Heart Association (AHA) in 2018 to form
The ADA will continue to remove the discriminatory barriers faced by people with diabetes through our legal advocacy. We will continue to work at the state and federal levels to ensure people with and at risk for diabetes have affordable access to health care coverage. We will advocate for public policies that will bend the curve and help prevent type 2 diabetes in high-risk populations. We will work to promote health equity and eliminate health disparities.
2020 promises to be another stellar year for the ADA! The ADA is poised and ready to continue to improve health outcomes and quality and length of life for the millions of Americans living with diabetes.
Thanks to JDRF and champions across the type 1 diabetes (T1D) community, 2019 was a year of remarkable progress. As JDRF aggressively pursues cures for T1D, we are also invested in accelerating the availability of drugs, devices, and treatments that show potential to make a significant difference for people living with — and at risk for — T1D.
This summer, the drug teplizumab was shown to delay the onset of T1D in at-risk individuals for 2 years, and the Food and Drug Administration (FDA) granted Breakthrough Therapy Designation to the drug. The study was conducted by TrialNet, which is funded by JDRF and the Special Diabetes Program. In the new year, JDRF will continue to invest in two highly promising avenues for T1D cures, immunotherapies, and beta cell therapies.
In December of 2019, the FDA authorized the Tandem Control-IQ algorithm, providing access to a second hybrid closed-loop system. JDRF research grants supported the initial development of the algorithm, and our advocates championed the renewal of the Special Diabetes Program that funded the clinical testing.
In 2019, access to therapies was a major priority. JDRF and our supporters — through the Coverage2Control campaign — called on insurers, employers, drug companies, and the government to provide affordability, choice, and coverage for insulin, closed loop systems and more. We will continue this fight in 2020.
Finally, after advocates met with nearly every Congressional office and sent countless emails, Congress provided nearly $100 million through May 22, 2020, for the Special Diabetes Program. JDRF and our advocates will continue in 2020 to urge Congress to pass a multi-year renewal of the SDP to allow researchers to build on the exciting progress made to date and to explore new opportunities without fear of interruption.
2019 was all about change for AADE. We released a new vision for the specialty to ensure those working in diabetes are equipped to deliver optimal care in a quickly changing health environment.
Research also led us to a new name for the specialty, from diabetes educator to Diabetes Care and Education Specialist (DCES) — a title that better describes all that we do for people with diabetes, prediabetes and other cardiometabolic conditions. This change is the necessary first step in a long-term strategy to strengthen our position as the go-to for the diabetes care team and better advocate for access and utilization of our services.
Through the lens of our new vision, we created a variety of tools to reinforce critical areas of quality, person-centered care: vaccinations, culturally competent treatment plans and pediatric care, as well as more focused resources like managing diabetes while fasting.
On the advocacy front, our members worked at the state and federal levels to address issues like non-medical switching, affordability, and access. We worked with the Diabetes Advocacy Alliance to reintroduce the Expanding Access to Diabetes Self-Management Training (DSMT) Act (H.R. 1840, S. 814), a bill that removes barriers to diabetes education for Medicare beneficiaries.
AADE has continued to be a leader in peer support, forming a workgroup made of peer support leaders and diabetes care and education specialists to tackle challenges facing referral, access, and utilization of this critically important resource.
As we move into 2020, we look forward to building on a landscape that benefits those affected by diabetes and positions Diabetes Care and Education Specialists for success within the care team. We will continue to collaborate on resources like our technology portal Danatech, and leverage tools for success like in our recent professional CGM implementation playbook. Stay tuned at DiabetesEducator.org.
What a year it was for the Type 1 and Type 2 diabetes communities! The most notable 2019 milestones at Beyond Type 1 were the launch of Beyond Type 2 and the creation of the JDRF – Beyond Type 1 Alliance, both of which opened up exciting new models for serving the diabetes community through novel platforms and partnerships.
Additionally, 2019 was the first year that Beyond Type 1 awarded scholarships through Diabetes Scholars, supported the most successful New York City marathon team to date, and Beyond Type 1 won a Webby for long-form journalism piece “Previously Healthy,” to name a few of the many exciting milestones. The Beyond Type 1 team and leadership are working behind the scenes on big plans for 2020, including a handful of new initiatives that will be made public early in the year.
2019 was a busy year for DiabetesSisters. The Board of Directors voted unanimously to adopt an organization-wide policy focusing on the diabetes-language movement (#LanguageMatters) for oral and written language. Our signature PODS Meetup program expanded to over a half dozen new locations (now at 44!) and we welcomed PODS Leaders to our 5th Annual Leadership Institute to develop and enhance their skills.
We grew our Minority Initiative Program, with Chicago and New York City joining Miami, FL, Old Bridge, NJ, and Silver Spring, MD, providing experiential education to discuss diabetes in English and Spanish. We launched our new digital page, Between the Lines, featuring stories from over two dozen real women living real lives while managing diabetes. And we were honored to continue our collaboration with WomenHeart and the National Kidney Foundation on three 2019 Facebook Live Events.
In 2020, we are excited to continue our work to bring together women with all types of diabetes, bridging the gaps, and providing support and education for all women. We look forward to a focus on cardiovascular and kidney health, which are important topics for those living with diabetes. DiabetesSisters plans to continue our collaborations with both diabetes-focused and non-diabetes organizations to share relevant health messages and information about treatments, medications, and devices with the community.
In 2019, we grew from nine chapters to 34 chapters, and in 2020, we foresee having a chapter in every state! These chapters achieved incredible things, such as passing state legislation and, importantly, building communities of support to bring people together to fight for change. A taste of those achievements:
- 12 large advocacy events organized
- 139 state chapter meetings held
- hundreds of legislators engaged with
- thousands of people educated about the insulin price crisis and patient advocacy
In June, we published our report with data from T1International’s 2018 out-of-pocket costs survey, which provides updated statistics about global insulin rationing, as well as other out-of-pocket costs in the United States within a global context.
Our In Memory page provides a powerful picture that makes it impossible to deny the need for action to lower drug prices. Our data and resources have been used and cited by various members of Congress.
In October 2019, we held our USA #insulin4all workshop and vigil. We had about 45 people from 20 chapters across the USA come together in Indianapolis for the workshop, which included a third annual event outside of Eli Lilly taking the form of a vigil to honor lives lost due to rationing.
In November, T1International worked with our amazing partners, the Sonia Nabeta Foundation (SNF), to continue our joint Pamoja Advocacy program. We came together in Cape Town, South Africa, to train 13 advocates from six African countries (Ghana, Kenya, Nigeria, Uganda, Tanzania, South Africa).
In 2020, T1International will continue our Pamoja Advocacy program as well as our global advocacy training projects. We expect to see our Advocacy Toolkit translated into Russian, and we will carry out our 2020 cost survey to add to our growing database about insulin and supply costs worldwide. Our HIV and type 1 diabetes study will formally get started, and our high-level advocacy efforts will continue.
The new year will also see us hiring additional staff, growing our existing chapters and bringing new ones on board, and carrying out more campaigns and events.
A report on our full year in review can be found here.
Thanks to all these orgs for the huge effort they put in on behalf of patients. Here’s to an impactful new year in 2020!