We have a longstanding tradition here at DiabetesMine to query prominent diabetes advocacy organizations at the start of each new year about their past-year accomplishments and goals for the year ahead.
Much like the year before, 2021 was a difficult one, dominated by the COVID-19 pandemic impacting our lives and the diabetes community in so many ways. Here’s what five of the most well-known diabetes nonprofit orgs are currently telling us about milestones and what they hope to accomplish soon.
This is of course not an exhaustive list of groups involved in diabetes advocacy, but these five stand out as some of the largest and most influential representing type 1 diabetes (T1D) here in the United States.
Former CEO Tracey D. Brown announced her resignation in mid-2021 and left the org in October 2021.
During the search for a new chief exec, three internal ADA leaders — Scientific and Medical Officer Dr. Robert Gabbay, Chief of Development Officer Charles Henderson, and Chief Financial Officer Charlotte Carter — formed an interim “Office of the CEO” to ensure a smooth transition period.
There is no timeline on when that search may be complete, but it’s highly likely the ADA will name a new CEO prior to their big annual Scientific Sessions conference scheduled for June 3 to 7, 2022. The org has already announced that it plans to hold a hybrid virtual and in-person event, as it did in both 2021 and 2020 because of the COVID-19 pandemic. This summer’s in-person event will take place in New Orleans, Louisiana.
As to 2021 highlights and 2022 plans, an organization spokeswoman told DiabetesMine it will prioritize 6 advocacy areas in the year ahead:
- Afford insulin, medications and care. In 2020 and 2021, the ADA has led state and national advocacy efforts to make insulin affordable through securing copay caps on insulin in 20 states and the District of Columbia, and through a partnership with the Centers for Medicare and Medicaid Services (CMS) to lower the cost of insulin for seniors through a Part D Senior Savings program. Even so, the cost of insulin and other drugs is still excessive for people with diabetes. While ADA led advocacy for a national copay cap at $35 per month through the House passage of “Build Back Better” legislation, that effort must continue until there are limits on what people with diabetes pay for their insulin. And with $1 of every $3 in spending for all drugs in the United States accounted for by people with diabetes, efforts to reduce direct patient costs for drugs, in general, will be equally prioritized. Beyond copay cap advocacy, our work will include efforts to reform drug middle-man rebates that will drive down patient costs at the pharmacy counter; to address private insurers’ efforts to force patients to pay more for drugs by limiting coverage, putting high cost therapies on “specialty tiers,” and forcing patients to try and fail on low priced drugs before allowing them to access drugs their healthcare providers have prescribed for them. We will also continue to support policies to promote biosimilar insulins and other competition and to hold drug manufacturers accountable for excessive pricing.
- Diabetes technology access. Lack of access to new diabetes technologies and therapies severely affects the ability of individuals to effectively manage their diabetes, and ADA data show that access gaps are especially pronounced among underserved communities. Through our newly launched Technology Access Project, ADA will continue to urge national and state policymakers to lower existing payment and administrative barriers to accessing continuous glucose monitors (CGMs) and similar technologies. We will also continue our important work in partnership with the Food and Drug Administration (FDA) to support the delivery of new technology and therapies to market. And finally, we will work to support ways that People of Color with Diabetes can safely and confidently participate in increasing numbers of clinical trials for medications that are intended to serve our community and may do so more effectively by making these trials more accessible to a broader and more racially diverse community of participants.
- The vast majority of amputations in the United States are performed on people with diabetes, and it is estimated that some 160,000 (85 percent) of the 185,000 amputations each year in the United States are preventable. Not surprising — but deeply troubling — is that rates of amputations among underserved communities and People of Color with Diabetes are significantly higher than they are in resourced white communities. Equally alarming is that so many people who face preventable amputations die within a short time after the amputations.
- There are systemic issues that the ADA will lead to secure needed change in Congress and at the federal agencies to tackle this troubling epidemic. In the diabetes community, we will keep leading the effort to elevate discussion and prompt action to reverse unnecessarily high rates of amputations in the United States, including by addressing a lack of:
- patient access to preventive healthcare resources, often because of insufficient incentives for providers to perform preventative care;
- patient and provider awareness of available interventions to prevent amputations; and
- quality metrics evaluating improvement opportunities at the provider level.
- Noninsured and underinsured: One of the most certain predictors of well-managed diabetes is whether an individual has health insurance. While insurance rates improved in some corridors as a result of pandemic response policy change, many of these expansions were temporary and need to be extended or bolstered. Moreover, 12 states have yet to adopt Medicaid expansion, leaving vulnerable patients — particularly in states with the highest rates of diabetes — with little or no insurance to cover their enormous costs. This reality has had dire consequences among people with diabetes who have been at unprecedented risk during COVID-19, which has claimed tens of thousands of lives in the diabetes community. In 2022, ADA will promote Medicaid expansion as well as policy changes to address the limitations of existing private insurance for people with diabetes.
- Improving Access to Healthy Foods for Diabetes and Pre-Diabetes: National dietary standards, which determine the types of foods available through institutional food programs (the military, schools, prisons, hospitals, etc.) and through nutrition support programs, fail to consider the unique and critical needs of people with diabetes and pre-diabetes. The ADA will press to ensure that these needs are addressed through national policy actions to support the food and nutritional interests of the diabetes community and to bolster the availability of foods that are best for people with diabetes and pre-diabetes within underserved communities. With that in mind, ADA will continue also to lead as an advocate for the nutritional needs of at-risk children with diabetes, including access to free and reduced-price meals and clean drinking water.
- Health Equity: In 2020, the ADA established a #HealthEquityNow platform, declaring in a Health Equity Bill of Rights the full spectrum of rights to which underserved Americans and those in Communities of Color — who make up the disproportionate share of the Americans with diabetes and pre-diabetes — are entitled. Addressing these rights individually will continue to advance as an organization-wide priority of the ADA through many of the programmatic initiatives described above. Further, ADA will continue to lead the national policy conversation around other types of actions that would, among other things, ameliorate implicit bias among healthcare institutions and providers; provide more preventive care to target populations; ensure that underserved neighborhoods benefit from vital resources including those that allow for safe physical activity (including in schools and through school physical education), and attack discriminatory employment and educational practices that target people with diabetes.
As the longest-running and largest organization dedicated to type 1 diabetes (T1D) research, advocacy and support, the JDRF has a number of efforts planned for 2022 that take into consideration its work during the past year.
In response to DiabetesMine’s inquiry about JDRF highlights in 2021, an organization spokesperson calls out the org’s work advocating on a number of different fronts — from Congressional meetings, FDA regulatory advocacy on new technology and medications, big research funding efforts on treatments and tech, and federal legislative efforts on the Build Back Better plan proposing a $35 insulin copay cap for all federal employer-covered plans, Medicare and Marketplace Exchange plans. The JDRF updated its Health Insurance Guide with timely and relevant information in English and Spanish, to help people find information on affording insulin and diabetes supplies and other insurance topics tailored for the T1D community.
Additionally, the JDRF advocated for COVID-19 vaccine prioritization policies in 2021 and were one of the many groups pushing the CDC to include T1D in the same high-risk category as T2D in over 25 states. This advocacy work helped lead all remaining states to eventually follow suit.
These are the JDRF’s priorities for 2022, per the organization:
- continued advocacy on insulin affordability
- advancing regulatory pathways for cures therapies with potential workshops, publications, regulatory qualifications, and other collaborative work
- potential FDA authorizations for first disease-modifying therapy for T1D and important diabetes technology advances
- potential Medicare expansion of coverage for CGMs in final Durable Medical Equipment Prosthetics/Orthotics & Supplies Fee Schedule following proposal included in draft rule (this has already happened as of December 2021)
- build upon the baseline work JDRF has done in support of the proposed Advanced Research Projects Agency for Health (ARPA-H), a federal agency aimed at launching groundbreaking and highly innovating therapies for the most pressing health challenges facing Americans, including diabetes
This California-based organization was marked by tragedy at the end of 2021, as CEO Thom Scher suddenly and unexpectedly passed away in early December. Scher did not live with diabetes himself, but was a passionate advocate who had a bold vision to challenge the status quo in terms of what a nonprofit organization could do. He had been at the helm of the organization since the beginning of 2019 (see DiabetesMine’s interview with him here.)
As a new leader is being selected by the group’s board, they’ve named Arizona D-Mom Tracey McCarter as interim CEO. She’s been Involved with BT1 since its inception and on the governing board for several years. Her 4-year-old daughter Charlize was diagnosed with T1D in 2009.
“All of us at Beyond Type 1 are touched by the outpouring of support we’ve received since Thom’s passing,” McCarter told DiabetesMine. “We know that, together, we’ll continue his legacy of collaboration for the greater good of the entire diabetes community. In 2022, we look forward to growing our programs, partnerships, and platforms, further uniting the global diabetes community, and providing resources and solutions that improve the lives of those impacted by diabetes. In everything we do, the memory of Thom will serve as our guiding light.”
As to its 2021 achievements, the organization shared this blog post that summarized its efforts during the year and pointed to efforts to make connections worldwide, expanding its international reach, addressing language barriers, and much more.
One highlight involved launching a new Advocacy Portal, which focuses on both federal and state legislative priorities, including insulin pricing and copay caps.
For 2022, BT1 tells DiabetesMine they have many plans for the year but in particular they’re looking forward to the following:
- We’re celebrating our third anniversary of Beyond Type 2 and will be expanding that community.
- 2022 will mark the fourth year of operating the Diabetes Scholars as a program of Beyond Type 1. We’re excited to build on the momentum of the program, after last year’s record-breaking year. Applications for this year’s Diabetes Scholars Class of 2022 will open in February.
- We recently expanded the Warning Signs campaign to reach all 50 states, and we’re currently looking for additional advocates who want to play a role in the increasingly important mission to raise awareness of the symptoms.
- Our first out-of-home and print advertising campaign is running in Utah through March with billboard and magazine ads to promote the warning signs of T1D. The campaign also includes a radio spot, featuring activist Liddy Huntsman.
- We’ll be launching a first-of-its-kind documentary-style video series to highlight challenges (access, mental and emotional wellness) faced by those impacted by T1D.
In 2021, ADCES focused on maximizing its advocacy efforts in the virtual environment and reaching out to the new Biden Administration and members of the 117th Congress.
A spokesperson explains:
We worked with our congressional champions and activated our grassroots network to reintroduce and promote the Expanding Access to DSMT Act in the U.S. Senate (S. 2203) in June and in the U.S. House of Representatives (H.R. 5804) in November. This legislation would make necessary improvements to the Medicare benefit for diabetes self-management, education and support, referred to by Medicare as “DSMT.”
On the regulatory and payment front, ADCES worked with the Diabetes Technology Access Coalition (DTAC) and other partners to make changes to the Medicare local coverage determination (LCD) for CGMs. Thanks to those efforts, the LCD was updated effective July 18, 2021, to remove the requirement that Medicare beneficiaries check their blood glucose 4 times per day to be eligible for a CGM and changed language around “injecting” insulin to “administering” insulin to account for inhaled insulin products.
In addition to our involvement with DTAC, ADCES also serves as a co-chair of the Diabetes Advocacy Alliance (DAA). This year, the DAA conducted extensive outreach to the Biden Administration and met with top officials including CMS Administrator Chiquita Brooks-LaSure and Elizabeth Fowler, PhD, deputy administrator and director of the Center for Medicare and Medicaid Innovation, to discuss the DSMT benefit and Medicare Diabetes Prevention Program.
As the year comes to a close, we await the public release of the National Clinical Care Commission’s final report to Congress. This report is expected to contain recommendations regarding improvements to federal diabetes policy advocated for by ADCES and other advocacy partners in the diabetes community.
This global advocacy group based in the United Kingdom is focused on the #insulin4all movement to improve access and affordability for those who use insulin, particularly in the United States where outrageously high prices are at crisis levels. DiabetesMine reached out to founder and fellow type 1 Elizabeth Pfiester about her organization’s work in 2021 and plans for 2022.
She pointed to the group’s top 2021 accomplishments that include the following:
- a “100 years campaign” aimed at the century-anniversary since insulin’s discovery
- important collaboration with the World Health Organization (WHO) in developing a first-ever Global Diabetes Compact
For the coming year, Pfiester says, “Our efforts will be focused on continuing to train and support our advocates to reach their local goals, while coordinating on a federal U.S. and global level to lower the cost of insulin and supplies.”
T1International notes that it hopes for “tangible outcomes” will come from the Compact moving forward into 2022, saying that “we continue to encourage the WHO to do this, and are part of various consultation groups to hold them accountable and work with them to improve the lives of people with diabetes.”
No doubt, there’s a lot to look forward to in 2022 on the insulin affordability and access front and beyond. Here’s hoping for a brighter, and ideally productive, new year.