2020 Was Tough. What Do Diabetes Advocacy Orgs Have in Store for 2021?

JDRF

Marking its 50th anniversary in 2020, the JDRF had been hoping to celebrate a historic milestone — but COVID-19 changed everything, forcing a major restructuring for this type 1 diabetes-focused organization. That overhaul meant chapter closures, layoffs, and event consolidation as well as certain diabetes research projects being cut off. See details here.

As far as 2020 highlights, the JDRF emphasized:

• All-virtual ‘Promise to Remember Me’ campaign: This annual effort, kicked off in 2020, usually involves families and those with type 1 diabetes (T1D) visiting members of Congress in-person in state and local district offices to share their experiences and lobby for federal funding for T1D research and other policy priorities. In 2020, despite having to do everything via video conference, JDRF advocates met with 452 Congressional offices. JDRF says that helped secure a 3-year extension of the Special Diabetes Program, with Congress allocating $150 million per year, for a total of $450 million to support T1D research for the National Institutes of Health.
• T1Detect screening program: JDRF launched a unique early screening program for T1D in late 2020. It is built around an easy to use at-home test kit called T1Detect that looks for particular autoantibodies in the blood that are the most important markers for T1D. JDRF says this initiative will help in its mission to prevent and treat T1D and its complications by supporting the development of disease-modifying therapies, which will be an important priority for JDRF in 2021. See details on T1Dectect here.

For 2021, the JDRF says it expects to address a number of focus areas and priorities:

• Increasing diversity and inclusion: T1D is a disease affecting all races, ethnicities, and income levels. “JDRF will engage a more diverse population in the JDRF mission by ensuring our programs, education and resources meet the needs of diverse races, ethnicities, and socioeconomic statuses, and advancing a culture of diversity and inclusion among JDRF staff, volunteers, and community members,” the org said in a published statement.
• Expanding screening: Through T1Detect and other initiatives, JDRF will expand accessibility to early T1D screening, helping to prevent dangerous DKA and enabling more people to participate in clinical trials for new therapies once available.
• Advancing cures: JDRF has created a new Centers of Excellence program in which it’s partnering with leading universities and research institutions to double down on research into stem cell-based cure research. Current Centers of Excellence include the University of Michigan and a Northern California collaboration between Stanford University and the University of California San Francisco.
• Expanding technology options: JDRF will continue to support advancements in technology to help manage T1D, such as the Tidepool Loop mobile app that automates insulin delivery.

American Diabetes Association (ADA)

The ADA did not answer DiabetesMine’s query directly this year, but from researching their information online, we were able to glean some of what the org plans to focus on for 2021.

Pandemic and policy: For much of 2020, the org pushed for people with diabetes (PWDs) to be kept front and center in pandemic-related policy and research, ranging from telehealth to COVID-19 testing, hospital care, and vaccine prioritization. No doubt, we can expect to see more of that in 2021.

Healthy equity: In August 2020, the ADA launched a new initiative focused on the racial disparities and health inequities impacting PWDs. Titled #HealthyEquityNow and supported by Abbott Diabetes Care, the effort is anchored in a new online platform that touts “5 Cs: Cost, Care, Cure, Community, and Cuisine.” According to the ADA, these are the top issues that people of color and economically disadvantaged people face, and the big factors leading to type 2 diabetes in particular. As part of this initiative, the ADA developed a “Health Equity Bill of Rights” listing 10 fundamental rights of patients — including the right to afford the cost of prescribed drugs, access to quality health insurance, avoiding preventable amputations, and access to innovations for managing diabetes.

Standards of Care: Some of the above-mentioned issues are also highlighted in the ADA’s 2021 Standards of Care, which are released each year as a guide for the medical and diabetes care community. A notable change for 2021 is advising that patients be assessed for food and housing insecurity, social support, access to appropriate community resources, and “cost-related medication non-adherence.” Of course, multiple COVID-19 points are also included in this most recent edition.

Insulin copay caps: For much of the past year, the ADA focused on advocacy related to establishing insulin copay caps at the state level. While a federal mandate would be preferable, state price caps do help some PWDs who might not otherwise be able to afford their insulin. At the start of 2021, a total of 14 states — as well as the District of Columbia — have enacted these copay caps (Colorado, Connecticut, D.C., Delaware, Illinois, Maine, Minnesota, New Hampshire, New Mexico, New York, Utah, Vermont, Virginia, Washington, and West Virginia). More are in the works across the U.S., some already set to take effect in 2021 or beyond.

Scientific Sessions 2021: The biggest diabetes event of the year is once again going to be virtual. Bringing over 14,000 diabetes professionals, advocates and researchers together each year in June, the 81st Scientific Sessions would have been held in Washington, D.C., if not for COVID-19. Instead, the ADA has announced that it will be held online, much like last year’s completely virtual event — unless the organization is safely able to supplement the virtual conference with some sort of hybrid in-person aspect. Either way, it is planned to take place June 25 to 29, 2021.

Association of Diabetes Care and Education Specialists (ADCES)

This professional organization kicked off 2020 with a bang, announcing a massive rebranding from its previous name American Association of Diabetes Educators (AADE), as it had been known since its founding in 1973, to ADCES, for the Association of Diabetes Care & Education Specialists.

This followed a name change for its members, from “diabetes educators” to “diabetes care and educations specialists” (DCES), to better reflect the scope of care these professionals provide.

ADCES spokes-folk say that “2020 was a year that brought a change in direction and focus, and a heightened urgency to advocate for members and those they serve.”

Just as ADCES started to roll out changes resulting from the rebranding, COVID-19 caused the world to come to a halt.

“Some diabetes self-management education and support programs shut down,” the ADCES states. “Diabetes care and education specialists were furloughed, just as we were learning the pandemic’s disproportionate impact on people affected by diabetes, and particularly in communities of color. Hospitals paused non-essential programs and services, focusing on the increasing number of COVID-19 patients. Many people with diabetes were without a means of care and support.”

Response from ADCES included:

• Telehealth push: Once the Centers for Medicare and Medicaid Services (CMS) began to expand telehealth services to fill the gap in diabetes care, ADCES advocates worked with that federal agency to get a regulation change, allowing registered nurses (RNs) and pharmacists to also utilize telehealth services. The org also provided resources, weekly Q&A webinars, and telehealth guidance to navigate the new COVID-19 environment.
• Virtual conference: The association’s annual meeting normally gathers roughly 8,000 members each August. In 2020, it pivoted to a completely online event, supported by the hashtag #ADCES20. The org notes that aside from focusing on the pandemic and telehealth, an entire day of the live conference was also dedicated to health equity, “a topic that deservedly got the attention it needed in 2020.”

In 2021, the ADCES plans to continue pivoting as necessary to handle the pandemic and evolving needs in the diabetes care community.

• Accurate COVID-19 vaccination information: ADCES says this will play a critical role in the first half of 2021, and it plans to monitor the situation carefully.
• Expanding telehealth: As the org plans to continue working with CMS in the hopes of making the expanded telehealth regulations permanent.
• Technology access and learning: “COVID-19 pushed technology ahead by decades and, as an association, we plan to leverage that for increased and equitable access to life-saving devices like continuous glucose monitors and greater understanding of their impact,” it states. “The ADCES technology website danatech.org will also play a critical role in delivering device and product training to healthcare professionals who might not otherwise have access to the information.”
• Health equity upfront: While health equity was already a major topic for the association, it will become a focal point in 2021, the ADCES tells DiabetesMine. Its Board of Directors is appointing a Diversity, Equity and Inclusion (DEI) Council to develop a charter and path forward that will include leadership development, membership recruitment, service and resource alignment, and a focus on reducing disparities in care based on social determinants of health.
• Meeting online: Finally, the 2021 ADCES Annual Conference, originally planned to take place in Pheonix, Arizona, from August 13 to 16, 2021, is now being planned as a hybrid in-person/virtual event.

“If there is one thing we learned in 2020, it’s that anything can happen and we must be prepared and ready to adapt,” ADCES leadership tells DiabetesMine.

Beyond Type 1

This powerhouse nonprofit advocacy org based in Northern California will likely be expanding on its alliance with JDRF announced in 2019, including creating new resources in response to the pandemic and insulin affordability crisis.

For 2020, Beyond Type 1 shared the following accomplishments:

• COVID resource center: In early 2020, the org responded quickly to the pandemic, publishing hundreds of resources and making them available to partners for syndication. That eventually led to the launch of CoronavirusDiabetes.org by the JDRF – Beyond Type 1 Alliance. This effort, built in partnership with 130 organizations and companies, aimed to consolidate and share evidence-based information for the diabetes community in a time of great uncertainty. They’ve continued this work by publishing weekly on COVID-19 and diabetes, keeping our community up to date.
• Insulin affordability resources: In October 2020, Beyond Type 1 launched GetInsulin.org with support from numerous partners, including the National Association for the Advancement of Colored People (NAACP) and Feeding America, along with the ADA and JDRF. This free resource helps anyone in the U.S. who needs insulin to find, understand, and access the options and programs that currently exist, custom to their circumstances.
• Monitoring vaccines: More recently it’s begun messaging around COVID-19 vaccine science, awareness, and education, with an effort that reached well over 100 million people around the globe. “You’ll see more from us on the COVID-19 vaccine and the next phase of the pandemic in 2021,” the org’s leadership tells DiabetesMine.

Looking ahead to 2021, the organization tells DiabetesMine that its key focus areas include:

• Leveraging its new Advocacy Division with Christel Marchand Aprigliano at the helm.
• Expanding its presence throughout Europe following this year’s launch of Beyond Type 1 in five additional European languages: Dutch, French, German, Italian, and Swedish.
• Supporting the critical work of partners in the developing world.
• Prioritizing efforts that center on issues of diversity, equity, and inclusion across the diabetes space.

T1International

This UK-based global advocacy nonprofit touches the D-Community throughout the world, but a big focus remains on the insulin affordability crisis in the U.S. The group has been around since 2013 and started the #insulin4all movement the following year before it took off and brought in more grassroots diabetes advocates who use that hashtag in their own advocacy efforts.

With 2021 marking the 100th anniversary of insulin’s discovery in 1921, the topic of insulin affordability and access will be an even more critical issue being addressed by T1International this year.

Here’s what the org says about its plans for 2021:

• “We look forward to continuing to build and support our U.S. chapters network, including our state and federal priorities and strategies.”
• “Globally, we’ll be updating and expanding our Advocacy Training and tools to help advocates maximize their impact and continue to have a strong sense of community.”
• “Organizationally, we’re building on our strong and transparent structures to ensure equity and living up to our values both internally and externally, including mechanisms to support volunteer feedback into the organization at the staff, programming, and board level.”
• “2021 also means continued awareness and attention to the current and ongoing impact of COVID-19, especially as it relates to health inequities within communities both here in the U.S. and across the globe.”

Of note: T1International’s senior advocacy manager Allison Bailey stepped down from her position in mid-January 2021, so it’s TBD on further leadership changes for the year ahead.

To read more about what these advocacy orgs are doing specifically on lobbying for government policies, see also Forecasting Diabetes Policy Priorities for 2021.