Diabetes Advocacy Orgs: 2022 Goals After Another Tough Year – Healthline

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. Heres 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 its 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 summers 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:

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 DiabetesMines inquiry about JDRF highlights in 2021, an organization spokesperson calls out the orgs 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 JDRFs priorities for 2022, per the organization:

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 DiabetesMines interview with him here.)

As a new leader is being selected by the groups board, theyve named Arizona D-Mom Tracey McCarter as interim CEO. Shes 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 weve received since Thoms passing, McCarter told DiabetesMine. We know that, together, well 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 theyre looking forward to the following:

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 Commissions 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 organizations work in 2021 and plans for 2022.

She pointed to the groups top 2021 accomplishments that include the following:

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, theres a lot to look forward to in 2022 on the insulin affordability and access front and beyond. Heres hoping for a brighter, and ideally productive, new year.

Read more:
Diabetes Advocacy Orgs: 2022 Goals After Another Tough Year - Healthline