In the NFL, some players stand out not just for their skills on the field but for their commitment to making a positive impact beyond the game. Orlando Brown Jr., NFL Super Bowl Champion and Cincinnati Bengals offensive tackle is one such player. But it’s not just about football for Orlando; it’s also about tackling an opponent of the community and his family: type 1 diabetes (T1D).

A Personal Journey

Orlando’s connection to type 1 diabetes is deeply personal. It began with his grandmother’s diagnosis. Then, unexpectedly, he lost his father, NFL Orlando Brown, Sr., to diabetic ketoacidosis, a complication of T1D. When his younger brother received a T1D diagnosis at age 11, Orlando’s determination to advocate for T1D research and education became unshakeable.

Stepping Up as an Ambassador

Orlando emphasizes that T1D’s impact on his family isn’t unique. He knows many face the same challenges – uncertainty, stigmas, and a lack of information about type 1 diabetes. However, he’s determined to use his platform to increase awareness and access to the life-changing treatments and technologies made available through Breakthrough T1D-funded research.

This year, Breakthrough T1D is excited for Orlando’s new season with the Cincinnati Bengals. We’re also thrilled about his commitment to step up as an ambassador for Breakthrough T1D, a role he has embraced with open arms. His goal? To educate people about T1D and the importance of screening, support T1D research, and use his platform to advocate for insulin affordability and policies like the Special Diabetes Program (SDP) to support the type 1 diabetes community.

Empowering Others

Orlando’s message is clear – he aims to empower those with T1D to pursue their dreams. He firmly believes that education, advocacy, and community involvement can create a world where no one faces T1D alone and one day, we can achieve our vision of a world without the disease.

Orlando’s story is one of hope and unwavering commitment to positively impacting the world. As he tackles T1D with the same dedication he brings to the gridiron, he reminds us that we can all play a part, both big and small, to reach the T1D end zone.

Breakthrough T1D 2023 Children’s Congress is over—and it was an incredible success! It’s been a long four years since the last Breakthrough T1D Children’s Congress, and the Delegates did an incredible job of making up for lost time. Delegates forged new connections, told hundreds of stories, and, as a result, we made real progress towards achieving key aspects of our Advocacy agenda.

One Breakthrough T1D Children’s Congress, One Voice

Every two years, more than 160 children with type 1 diabetes (T1D) between the ages of 4 – 17 gather in Washington, D.C., to meet face-to-face with some of the top decision-makers in the U.S. Government. The selected Delegates represented nearly every state, as well as four International Affiliates. Delegates have a unique and empowering opportunity to help Members of Congress understand what life with type 1 diabetes is like, while forming lasting bonds with fellow youth who live with this autoimmune disease.

The event was led by Breakthrough T1D 2023 Children’s Congress Chair Natalie Stanback and her family.

The Delegates focused on two areas of BreakthroughT1D’s Advocacy Agenda: Renewing the Special Diabetes Program (SDP) and the insulin affordability crisis.

The SDP currently provides $150 million annually to T1D research through the National Institutes of Health (NIH), the country’s premier medical research agency. Additionally, it complements Breakthrough T1D’s research efforts, allowing Breakthrough T1D and the NIH to collaborate to advance T1D research as quickly as possible. The SDP  is set to expire in September and renewing it is Breakthrough T1D’s biggest priority—and the #1 job for the Delegates.

Right now, there is legislation to renew the SDP for two years at $170 million annually. This would be the first annual increase in funding in 20 years.

“The SDP is vital,” said Natalie Stanback. “By spreading awareness in the halls of Congress and meeting with our lawmakers, we did all we could to ensure the research made possible by this program continues. We made sure the needs of the T1D community were heard!”

Congress also must build on recent progress made, and further address the high cost of insulin in America. More must be done to ensure all those who need it have access to affordable insulin.

Over the course of three days, Delegates traveled to Washington D.C., spent time with each other, and received training on how to advocate for these issues with their Members of Congress.

Celebrity T1D Role Models Join the Fight in Washington

Ten T1D champions also supported the event, inspiring the Delegates and joining our fight for the T1D community. These celebrity Role Models, who all either have T1D or a direction connection to it, included:  

In addition to lending their voices to the cause on Capitol Hill, the T1D Role Models participated in a town hall. At this event, the Delegates had the opportunity to ask questions and interact with the T1D Role Models. The questions varied, from “How does T1D impact working on a movie set?” to “What is it like to win American Ninja Warrior with T1D?” The T1D Role Models answered every question with honesty and specificity—showing that anything is possible for people affected by this disease.

Delegates Take on Capitol Hill

On July 11th, the Delegates officially headed to Capitol Hill.

The first event was a Senate Appropriations Committee hearing led by U.S. Senators Patty Murray (D-WA) and Susan Collins (R-ME), Chair and Vice Chair of the Senate Appropriations Committee, as well as Senator Jeanne Shaheen (D-NH), a senior member of the Appropriations Committee, the hearing was titled “Accelerating Breakthroughs: How the Special Diabetes Program Is Creating Hope for those Living with Type 1 Diabetes.”

Five witnesses spoke about the importance of these issues and what it’s like to live with T1D.

During the hearing, these witnesses testified before a standing room-only chamber full of our Delegates and their families. Delegates Elise Cataldo (NH) and Maria Muayad (ME) testified bout what it’s like to live with T1D, including the literal highs and lows, and the importance of the SDP and insulin affordability. Griffin Rodgers, MD, Director, National Institute of Diabetes and Digestive and Kidney Diseases, provided his perspective on the SDP, what it has accomplished, and what it can do with more, sustained funding. James “Jimmy Jam” Harris, award-winning Music Producer and Philanthropist, told his story of life as a T1D dad and his dreams for a world without T1D. Breakthrough T1D CEO Aaron Kowalski, Ph.D. also testified, sharing his unique perspective as a scientist and person with T1D.

Attendance was fantastic; 15 Senators came to the hearing and asked questions. This hearing was a unique and positive one—featuring a lot of applause and consensus amongst all the Senators.

“I got a sense that there was true bipartisanship in that room,” said Jimmy Jam after the hearing. 

At the conclusion of the hearing, the Delegates traveled across Capitol Hill to meet with their Senators and Representatives to reiterate our calls to action: renew the SDP and enact legislation to make insulin more affordable.

Additionally, several Delegates who participated in T1D clinical trials traveled to the Food and Drug Administration (FDA) to meet with FDA Commissioner Robert M. Califf, M.D., and FDA staff to share their experiences in clinical trials and discuss the importance of developing and approving new therapies for the T1D community.

It’s A Wrap

In total, 163 Delegates, plus our T1D Role Models, conducted 239 meetings with U.S. Senators and Representatives to gain support for these critical issues. They did an incredible job—and were ideal representatives of the T1D Community. These Delegates were tasked with telling their stories about life with T1D, and each of them rose to the occasion—and more.

Get Engaged!

You can experience the highlights of Breakthrough T1D 2023 Children’s Congress on our social media channels, including interviews with Delegates and celebrities, recaps from Breakthrough T1D CEO Aaron Kowalski, and more. Check them out on Instagram, X, Facebook, YouTube and LinkedIn.

You can also experience navigating Capitol Hill virtually in Breakthrough T1D One World!  The game, created by Breakthrough T1D as part of the Breakthrough T1D Game2Give program, is a virtual world built inside the popular online game Roblox that allows for education, celebration, and of course—play! It’s a place where people in the Breakthrough T1D community—kids, teens, and adults—can get together, play games, learn about T1D, and meet new friends. In the most recent update, players can take on the role of a Breakthrough T1D 2023 Children’s Congress Delegate and visit Capitol Hill, run obstacle courses, and so much more. Learn more and play at https://www.roblox.com/games/5823990610/Breakthrough-T1D-World

Join Us!

While the Delegates did an amazing job advocating to our legislators to renew the SDP and do more to fix the insulin affordability crisis, you can join the fight too. Sign up to be an advocate! It’s the easiest way to stay up-to-date and take action on advocacy issues. 

This event was made possible by:

Delegate Social Sponsors Dexcom, Vertex, and Xeris Pharmaceuticals 
Supporting Sponsors Insulet and Lilly
Diamond One Society Partnership Sponsors Ford and Marshalls

Cynthia Rice, Breakthrough T1D’s Chief Mission Strategy Officer, will leave behind quite a legacy once she steps down from her role at Breakthrough T1D at the end of March 2023.

“In her time with Breakthrough T1D, she has led with strategic purpose and passion,” read Breakthrough T1D CEO Aaron Kowalski’s December 2022 memo announcing Cynthia’s decision to leave. “She has been an incredibly valuable partner to me, as well as staff and volunteers throughout the organization.”

During her tenure at Breakthrough T1D, she has helped bring the artificial pancreas project to life, has driven efforts to renew the Special Diabetes Program, and was a key player in Breakthrough T1D’s response to and handling of COVID-19—all with the partnership of our strategic staff and vast network of volunteers, who are the bedrock of our advocacy efforts.

“It’s possible—while challenging—to impact the research and development (R&D) ecosystem to improve options and outcomes for people living with chronic diseases like type 1 diabetes,” says Cynthia. “Defining goals, tapping into strengths, building capacities, and remaining determined in the face of obstacles are critical.”

And for nearly two decades, she has done just that at Breakthrough T1D.

“Leverage—enlisting others to our cause—is critical to our success and core to our organizational DNA, whether it’s engaging friends and families, company R&D heads, government officials, or foundation leaders,” Cynthia says.

The Artificial Pancreas Endeavor

From Left: Breakthrough T1D International Board of Directors member Claudia Graham, Ph.D., M.P.H.; Breakthrough T1D Chief Mission Strategy Officer Cynthia Rice; and Senator Susan Collins (R-ME). Left-click on image to slightly enlarge.

From Left: Breakthrough T1D International Board of Directors member Claudia Graham, Ph.D., M.P.H.; Breakthrough T1D Chief Mission Strategy Officer Cynthia Rice; and Senator Susan Collins (R-ME). Left-click on image to slightly enlarge.

Cynthia came to Breakthrough T1D in September 2005. Real-time continuous glucose monitors (CGMs) were in the early stages of development, with one approved just months prior.

Aaron Kowalski, Ph.D., who had come to Breakthrough T1D a year before and is now the CEO, and Jeffrey Brewer, a member of Breakthrough T1D’s International Board of Directors at the time, had just spent six months interviewing academic scientists, corporate executives, and other like-minded players to figure out whether Breakthrough T1D wanted to take on the development of an artificial pancreas. There were many barriers, and companies were very wary of getting involved.

In the interviews, it became clear that despite the hesitation among companies, there was significant potential benefit for the T1D community in pursuing artificial pancreas technologies. The leadership—needed to foster a therapy roadmap, research funding, regulatory pathway, and health care access—just wasn’t there.

Breakthrough T1D changed that. We made it a priority, bringing not only our research funding, but also our powerful advocacy forces, to speed the development of these devices.

“The goal of multiple artificial pancreas systems, with ongoing innovation, drove our strategy,” says Cynthia, “and we took actions early on with that goal in mind, utilizing our strengths, building new capacities and relationships, and battling doggedly to overcome obstacles.”

Overcoming the Obstacles

Among the first obstacles was that the benefits of continuous glucose monitoring in the management of T1D had only been shown in small studies. In 2008, a Breakthrough T1D multi-site randomized control clinical trial showed that people with T1D who used the devices experienced significant improvement in blood-sugar control. This was instrumental to CGM coverage and laying the groundwork for the artificial pancreas system to come to fruition and be covered by the healthcare system.

Another obstacle was linking together the two main components of a closed-loop artificial pancreas system—the glucose sensor and an insulin pump. Breakthrough T1D established the Artificial Pancreas Consortium, which connected researchers from several different laboratories to develop the computer algorithms so that the machines could “talk” to each other and then be commercialized, as necessary.

A third obstacle—perhaps the most challenging of them all—required engaging government, regulatory, and health care groups.

Breakthrough T1D worked with researchers, insurance companies, the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), Medicare, and Congress on regulatory and coverage issues. When the first artificial pancreas system came on the market in 2016, the T1D community was more than ready for the life-changing T1D management it offered.

“Seeing the artificial pancreas go from concept to reality, which is helping so many people keep their blood-sugar management in control, is what makes Breakthrough T1D and all of the advocacy volunteers—who sent an email, made a call, signed an action alert, or met with their Member of Congress—very proud of this historic achievement and the impact that these will have on the individual lives of those with type 1 diabetes,” Cynthia adds.

The Special Diabetes Program (SDP)

The Special Diabetes Program

Cynthia Rice (far right, fifth row from the back), Breakthrough T1D volunteers, and Delegates at Children’s Congress 2013 with then-Vice President of the United States Joseph R. Biden (center). Left-click on image to slightly enlarge.

In 1997, with the bipartisan leadership of White House Chief of Staff Erskine Bowles and Speaker Newt Gingrich, Congress created the Special Diabetes Program (SDP), which annually allocates $150 million for T1D research at the NIH. Breakthrough T1D is the chief advocate of the SDP.

The SDP has been instrumental to some of the greatest advancements in the history of T1D—including research that led to artificial pancreas systems and the recent FDA approval of the first-ever drug that can delay onset of T1D, Tzield™ (teplizumab-mzwv).

Since its inception, the SDP has invested $3.4 billion into T1D research. The program’s success and continued renewal is the result in part of hundreds of Breakthrough T1D advocates meeting with their Members of Congress each year to discuss the importance of the SDP.

“Sustaining bipartisan support to renew again and again in challenging times in Washington is thanks to the amazing volunteer-staff partnership in advocacy,” says Cynthia. “This is now paying enormous dividends, not only in the artificial pancreas systems, but in cures therapies, including disease-modifying and cell therapy treatments.”

Breakthrough T1D’s Unique Strengths

“Breakthrough T1D has two strengths that are rare,” says Cynthia. “The first is scientific expertise, convening the best and brightest across fields and generating ideas to solve the biggest problems. The second is community passion, to influence R&D priorities, regulatory pathways, and health care access and enlist government leaders to take action for our cause.”

She adds: “Breakthrough T1D has harnessed these strengths and organized the community, leading to our higher-level power: Influence.”

“It’s not only possible but realizable for a small band of determined people, starting with our founding moms, to tackle and overcome big obstacles,” says Cynthia. “As long as we organize ourselves well, deploy smart strategies, and develop an advocacy message that people can get around, Breakthrough T1D will continue to have the impact that has historically been the pillar of our advocacy work.”

“More broadly, strong patient advocacy strengthens our health system and our society and helps align incentives in research, development, and health policy to benefit the people affected by the disease,” says Cynthia. “All of us as leaders should be thinking about what else we can do to help strong, independent patient communities come together and thrive as advocates, which I hope to do when I return to the health sector in 2024 after a sabbatical.”

A Legacy of Women Leaders

Breakthrough T1D was founded by women, has mostly women staff and volunteers, and counts numerous successful and influential women among its current and past leaders and supporters.

Women who, like Cynthia Rice, share Breakthrough T1D’s vision for a world without T1D and who will stop at nothing to turn that vision into reality.   

“From the majority staff and volunteer base, to our women founders, to our international chair Mary Tyler Moore, to our advocates, fundraisers, and scientists,” says Cynthia, “Breakthrough T1D, as an organization, shows the power women can have to impact their world.”

Members of Breakthrough T1D's Grassroots Leadership Team (GLT)

Members of Breakthrough T1D’s Grassroots Leadership Team (GLT) along with members of Breakthrough T1D’s Advocacy Team, including Cynthia Rice (ninth person in from the right) at Breakthrough T1D Government Day 2023. Left-click on image to slightly enlarge.


Cynthia Rice at Government Day 2023.

Cynthia Rice at Government Day 2023. Left-click on image to slightly enlarge.

The Federal Government is one of Breakthrough T1D’s most important partners in advancing research to better treat, prevent, and ultimately cure type 1 diabetes (T1D). Breakthrough T1D’s annual Government Day event, held in Washington, D.C., brings together dedicated Breakthrough T1D Advocates from around the nation to use their own personal stories to communicate the financial, medical, and emotional costs of T1D to our nation’s leaders—and to tell them what they can do to help. Of course, we also carve out time for networking, volunteer recognition, and key updates on research and advocacy priorities.

After several years of conducting meetings virtually because of the pandemic, this year, Breakthrough T1D advocates held approximately 475 in-person meetings with Senators, Representatives, and their staffs to highlight the issues affecting the T1D community. We’re pleased to share that they arrived in DC filled with purpose, and departed after making a huge impact on Capitol Hill.

This year, Breakthrough T1D advocates enlisted Congressional engagement in the following priorities:

Renewing the Special Diabetes Program 

The Special Diabetes Program (SDP) is a critical Federal program that provides $150 million annually for T1D research through the National Institutes of Health (NIH). This program has been instrumental in nearly all the recent T1D advances, including work towards cures and improvements in therapies.

However, this funding expires September 30, 2023 so we are working to renew the program to continue making progress in these and other areas such as environmental triggers, immune therapies, glucose control, and T1D-related complications. Learn more here.

Achieving Insulin Affordability

Our foundational belief is that everyone should have access to the insulin they need to survive. Together, Breakthrough T1D staff and volunteers have been raising our voices on this issue for years, engaging with Congress, health plans, manufacturers, etc., and we’ve seen recent progress—including manufacturers lowering insulin prices and the $35 insulin co-pay cap for people on Medicare included in the Inflation Reduction Act last year. These are steps in the right direction made possible because of your advocacy—but there is more to do. We are calling on Congress to extend the co-pay cap to all Americans and to enact systemic reforms so insulin is more affordable for all who need it. Learn more here.

Mary Tyler Moore Award

Breakthrough T1D also recognized three distinguished female Congressional leaders who have been instrumental in the fight against T1D during Breakthrough T1D’s annual Government Day. The inaugural Mary Tyler Moore Award was presented to U.S. Senators Jeanne Shaheen (D-NH) and Susan Collins (R-ME), co-chairs of the Senate Diabetes Caucus, and U.S. Representative Diane DeGette (D-CO), co-chair of the Congressional Diabetes Caucus. Breakthrough T1D recognized these influential leaders for their longstanding support of the T1D community, in honor of Mary Tyler Moore, a television pioneer, and advocate who served as Breakthrough T1D’s international chair for more than 30 years and helped to increase Congressional funding for research advancements through the NIH and the SDP.

We are proud of the work that Breakthrough T1D advocacy volunteers are doing both locally and nationally, and we are grateful for our legislative partners who are pushing for progress in Congress and beyond. Together, we are building a future without T1D.

There’s a lot of work left to be done—and we need your help! If you’re not already, please sign up to a Breakthrough T1D advocate to help secure Federal funding for important diabetes research, inform health and regulatory policy, and improve the quality of life for those affected by T1D until we find cures.

Mary Tyler Moore would have been proud to have an award recognizing women who have made pioneering contributions to the fight against type 1 diabetes (T1D). Now, such an award exists!

Presented by Breakthrough T1D, the new award honors the legacy of trailblazer and cultural icon Mary Tyler Moore, who was diagnosed with T1D at the age of 33. As international chairman of Breakthrough T1D from 1984 to 2017, Moore used her influence to bring government, scientists, and people living with diabetes together to further T1D advocacy and innovation.

The award highlights the leadership of women who, like Mary, question the status quo, bravely take risks, and drive changes to improve the lives of those living with T1D.

The inaugural award goes to some of the most powerful women in the United States government who are fighting T1D: Senator Susan Collins (R-ME), Senator Jeanne Shaheen (D-NH), and Representative Diana DeGette (D-CO). Each has provided exemplary leadership, demonstrated the strongest allyship to the T1D community, and has championed and passed legislation that will improve the lives of those living with T1D. These include the Special Diabetes Program (SDP)—which funds $150 million to diabetes research per year—and insulin affordability, including a cap on the price of insulin at $35 per month for Medicare enrollees.

“When most of the world thinks of Mary, they immediately picture Laurie Petrie from ‘The Dick Van Dyke Show’ or Mary Richards from the ‘Mary Tyler Moore Show’ — or many of the numerous other roles she played,” said S. Robert Levine, M.D., her husband of more than 30 years and longtime leading Breakthrough T1D volunteer. “But the biggest role she took on was her profoundly effective advocacy for support for federal funding of research to find cures for T1D and its complications, and her commitment to the T1D community.”  

“I am truly touched that the inaugural award in her name celebrates three government leaders—Susan Collins, Jeanne Shaheen, and Diana DeGette—who partnered with Mary to assure more federal funding of T1D research, including the funding of critical research resources, consortia, and clinical trial networks to bring us closer to cures,” Dr. Levine added.

One of Moore’s most significant achievements as Breakthrough T1D international chairman was increased Congressional funding for the Special Diabetes Program (SDP) at the National Institutes of Health that has accelerated the pace of T1D research. This long-term investment in diabetes research has helped lead to significant scientific breakthroughs, including Tzield™ (teplizumab-mzwv), the first disease-modifying treatment for T1D which can delay the onset of the disease by more than two years.

“Thanks to the enduring efforts of Mary Tyler Moore, we are bringing new treatments forward and moving closer every day to cures for type 1 diabetes and its complications,” said Cynthia Rice, Breakthrough T1D’s chief mission strategy officer. “Senators Collins and Shaheen and Representative DeGette have been steadfast allies in Congress to the T1D community. Breakthrough T1D is proud to recognize their work as they carry Mary Tyler Moore’s legacy forward.”

Natalie Stanback isn’t new to fighting for the type 1 diabetes community. In 2019, she came to Washington DC with her daughter, Nadia to bring awareness to the importance of federal funding for T1D research. Last year, she briefed Congress on the real-world impact of the insulin affordability crisis.

That’s why she’s the perfect person to serve as Chair at the Breakthrough T1D 2023 Children’s Congress. She knows T1D; she knows Advocacy—and she knows how to get things done on Capitol Hill!

Along with her daughter, Nadia, who was a Breakthrough T1D 2019 Children’s Congress Delegate, and her husband, Isaiah, a former NFL wide receiver, Natalie will lead 165 Delegates from all 50 states, along with 5 countries, to tell Congress what it’s like to live with T1D, and what they need to do to help.

“I am so excited to be Chair of Breakthrough T1D 2023 Children’s Congress!” Natalie said. “Last time, we were awestruck by the event. We can’t wait to come back to Washington and continue this important work with all the Delegates.”

When Nadia was diagnosed with T1D at the age of 3, the diagnosis did not come out of the blue. Natalie’s brother, Michael, had been diagnosed 24 years prior. “Given my prior knowledge and experience, Nadia’s diagnosis was breathtaking but not as traumatic as it could have been,” Natalie said. Thankfully, Nadia is doing great. She’s active in sports and she is very involved in the daily management of her T1D.

Natalie still raves about Breakthrough T1D 2019 Children’s Congress. Seeing the impact and feeling the power firsthand is the main reason they are coming back to chair the event.

“It was the best whirlwind that we’ll forever remember,” Natalie said. “We loved the panels, the information and the ability to DO something,” she continued. “It was such a tangible validation and inspiration. I hope that such is the experience and take-away for all of the families and Delegates.”

Breakthrough T1D Children’s Congress is one of the most important things Breakthrough T1D does. Founded in 1999, this event is one of the key drivers that advances Breakthrough T1D’s Advocacy agenda. This event typically happens every other year, but it was canceled in 2021 due to COVID-19. Natalie and the Delegates are ready to make up for lost time!

This year, the focus will be on the Special Diabetes Program (SDP). This program currently provides $150 million annually to T1D research through the National Institutes of Health, the country’s premier medical research agency. The SDP also complements Breakthrough T1D’s research efforts, allowing Breakthrough T1D and the NIH to collaborate to advance T1D research as quickly as possible. This program is set to expire in September and renewing it is Breakthrough T1D’s biggest priority—and the #1 job for the Delegates.

“The SDP is vital,” said Natalie. “By spreading awareness in the halls of Congress and meeting with our lawmakers, we can ensure the research made possible by this program continues. We will make sure the needs of the T1D community are heard loud and clear!”

The Delegates will also speak to the rest of Breakthrough T1D’s advocacy agenda, which includes our efforts around insulin affordability.

“I am looking forward to encouraging other parents to hold on to hope, to count their blessings and to seek the silver linings in this journey,” Natalie said. “That their voices and efforts are meaningful and greatly impact Breakthrough T1D’s progress and footprint. It will take all of us. We must keep going.”

Explore the Breakthrough T1D 2023 Children’s Congress website to learn more about the event, the issues, meet the Delegates from each state, and more!

Watch a 2021 video from ABC’s Good Morning America about the Stanback Family.

In January 2022, the National Clinical Care Commission issued its final report to Congress. The finding were just published in Diabetes Care Here’s what they said about diabetes and what it means.

What is the National Clinical Care Commission?

National Clinical Care Commission (the Commission or NCCC) is a commission formed in 2018 to evaluate and provide recommendations to improve federal programs related to complex metabolic or autoimmune diseases that represent a significant disease burden in the United States. This includes type 1 diabetes (T1D). There are many federal programs that touch healthcare, and the charter of this commission was to make specific recommendations on how the federal government can improve their programs to meet the needs of its citizens affected by these diseases.

Ellen Leake, past chair of Breakthrough T1D’s International Board of Directors, served on the NCCC as an appointed representative of Breakthrough T1D and the T1D community.

The final report outlines evidence-based, actionable recommendations to improve federal diabetes awareness, prevention, and treatment programs; the first guidance like this since 1975. It also calls on the government to improve access to care, address social determinants of health, and improve collaboration between different federal agencies.

What Were Their Recommendations?

The NCCC issued its final report to Congress in January 2022. It included several recommendations around diabetes. These recommendations happen to align with Breakthrough T1D’s Advocacy Agenda!

Here are some, but not all, of the specifics.

Renew the Special Diabetes Program For Longer at a Higher Level

The Special Diabetes Program (SDP) is a critical program that provides $150 million annually for T1D research at the National Institutes of Health (NIH), the country’s premier medical research agency. The SDP complements Breakthrough T1D’s research efforts. Together, they are leading to new insights and therapies that are improving the lives of people with diabetes and accelerating progress to cure, treat, and prevent T1D.

The SDP has provided over $3.4 billion to T1D research since its inception in 1997—and the investment has paid enormous dividends—funding research that has directly led to new therapies for the T1D community.

The SDP is set to expire in September, and much of the funding it has received in recent years has been short-term, sometimes in months-long increments. The NCCC realizes the significance of long-term funding and recommends the program be renewed in five-year increments and include annual increases in funding to at least  account for inflation costs. 

Breakthrough T1D strongly supports this recommendation.

Updates to Centers for Medicare & Medicaid Services

The Centers for Medicare & Medicaid Services (CMS) is the governing body that oversee Medicare and Medicaid, which are federal and state programs that provide health insurance and help with costs to millions of Americans. The NCC had specific recommendations for CMS, including update and regularly (at least every three years) evaluate eligibility requirements for various diabetes devices leading to appropriate coverage determinations. This is important because the landscape of T1D tech is rapidly changing; state of the art today may not be state of the art in three years. This recommendation ensures that the diabetes community will have access to the best tools and therapies. It also recommends that CMS consider patient-reported outcomes into their calculus—which is incredibly important and brings user-feedback into the process.

This recommendation is heartily welcomed by Breakthrough T1D. Breakthrough T1D led the fight to have Medicare cover CGM technology—and it took years for this vulnerable population to have access to lifesaving CGMs. This recommendation ensures that the current landscape is regularly evaluated.

Increasing Access to Improve Outcomes

Access to insulin and therapies like insulin pumps and CGMs can be a challenge in America. Insulin affordability is a crisis—even with the recent steps taken to put a cap on the cost of insulin for those on Medicare. For that reason, Breakthrough T1D is encouraged by two recommendations by the NCCC around cost and access.

One recommendation is that federal policies and programs remove cost barriers to ensure that insulin is affordable for all people with diabetes and that no one with diabetes who needs insulin cannot get it because of cost. Breakthrough T1D hopes Congress takes this recommendation seriously and works to address the issue.

Another is that the US Department of Health and Human Services (HHS) establish a process to determine and regularly reevaluate high-value diabetes services and treatments to be fully covered (pre-deductible) by health insurance based on their ability to prevent development or progression of diabetes complications. As therapies have improved, so have their abilities to keep individuals with T1D in range more of the time, which leads to fewer complications. Breakthrough T1D supports this as well.

What Happens Now?           

The NCCC’s work is officially done. Their report was delivered to Congress, and it is up to Congress to take these recommendations and implement them as they see fit. Breakthrough T1D has and will continue to share our strong support for these recommendations with Congress as part of our ongoing advocacy efforts to improve the lives of those with T1D and accelerate research to cure, treat and prevent T1D.

Breakthrough T1D is honored to have been involved in the Commission’s work through Ellen and we thank her for her continued commitment to advance research and care for those living with T1D. Breakthrough T1D also thanks the whole NCCC for their hard work and for making recommendations that will improve the lives of the diabetes community in the US.

One of Breakthrough T1D’s top legislative priorities has been achieved with the enactment of a three-year renewal of the Special Diabetes Program (SDP). The program, now funded until September 30, 2023 at $150 million per year, will enable researchers to build upon the momentum in type 1 diabetes (T1D) to date and explore new opportunities that have been waiting for funding. Throughout the course of 2020, the SDP received intermittent funding while Congress worked on a longer-term renewal of the program. This is a huge win for, and one that we share with, the entire T1D community and their loved ones and is the longest renewal of funding since 2004.  

This wonderful news became a reality due to the tireless commitment of our Breakthrough T1D volunteers and advocates through Breakthrough T1D’s mobilizations and campaigns, most recently 452 ‘Promise to Remember Me’ virtual meetings between Members of Congress and advocates of all ages and experiences. Our champions in Congress include Senators Susan Collins (R-ME) and Jeanne Shaheen (D-NH) and Representatives Diana DeGette (D-CO) and Tom Reed (R-NY) who we’d like to thank for their tremendous leadership and work to secure this and many other renewals.

Enacted in 1997, the SDP helps improve lives by advancing research to treat, prevent and ultimately find cures for T1D through the National Institutes of Health (NIH). The program has helped scientists make significant advances – including artificial pancreas technology, beta cell replacement techniques, improvements to continuous glucose monitors and treatments for complications of T1D like diabetic retinopathy.

Research was the key to the discovery of insulin 100 years ago – prior to this breakthrough, people typically survived two years or less with T1D.  Research is also the key to tomorrow’s prevention and cures, and to improving lives now and in the future. The SDP complements many of Breakthrough T1D’s research priorities but also helps the T1D community as it supports research in cures as well as improving lives. 

Join us in saying ‘Thank You’ to Congress today and if you’re interested in becoming a Breakthrough T1D advocate, sign up here!

Cass Freeland of Columbus, Ohio, knows how to connect with policy makers.

“People of power remember your personal stories,” she said. “Advocacy is about relationships, telling stories and coming together for group action.”

Freeland, whose son has type 1 diabetes, speaks from experience. She’s a former lobbyist who has worked for organizations such as the Ohio Education Association.

Cass Freeland and Rep. Joyce Beatty
Cass Freeland with U.S. Representative Joyce Beatty

Given her professional background, it came as no surprise that Freeland, who started volunteering for Breakthrough T1D shortly after her son was diagnosed in 2016, was tapped to head up the Central Ohio Chapter’s advocacy efforts.

Today, Cass Freeland leads the Central Ohio Chapter’s advocacy efforts, including organizing the Promise Meetings. She has visited Capitol Hill twice to advocate on behalf of Breakthrough T1D.

“People living with T1D have great tools that make managing their T1D much easier,” Freeland said. “How did we get those things? Yes, because of research and development, but also because families and people living with T1D demanded them.”

Cass Freeland and Rep. Steve Stivers
Cass Freeland with U.S. Representative Steve Stivers

During Freeland’s visits to DC, she has met with several Members of Congress—including U.S. Representatives Joyce Beatty (D-OH-3rd) and Steve Stivers (R-OH-15th)—to advocate for continued Federal research funding for T1D, and legislation and policies that support affordability, choice, and coverage of T1D management tools.

“These Members are willing to consider and support my asks on the spot because they remember that I had previously come to see them with my son and other advocates,” she said. 

She also secured meetings with three of four Northeast Ohio congressional offices. All signed a letter supporting funding for the Special Diabetes Program.

“This is a way for me to use my skills to give back,” she said.

Learn more about our advocacy agenda and find out how you can become a Breakthrough T1D advocate! 

This week, the Food and Drug Administration (FDA) approved the Medtronic MiniMed 770G artificial pancreas system for use by children aged 2 to 6 with type 1 diabetes (T1D). The 770G System is now approved for ages 2 and older and is the first marketed device that can automatically adjust insulin delivery based on continuous glucose monitoring (CGM) values for children aged 2-6 years.

The Medtronic MiniMed 770G is a Bluetooth-enabled version of the previously approved MiniMed 670G System, which will enable sharing of data on smart devices. While the device automatically adjusts insulin levels, users need to manually request insulin doses to counter carbohydrate consumption at mealtime. (This device is not approved for use in children younger than 2 years old and in individuals who require less than eight units of insulin per day.)

The FDA evaluated data from a clinical trial that included 46 children aged 2 to 6 years old with T1D.  The study found no serious adverse events, and data from the study was used to help support the expanded indication for people 2 to 6 years old.

Breakthrough T1D Impact

Breakthrough T1D has been a leader in the development of artificial pancreas systems for 15 years, since starting the Breakthrough T1D Artificial Pancreas Project in 2005 and the Breakthrough T1D Artificial Pancreas Consortium, which have dramatically accelerated progress by bringing academic researchers, government agencies, industry and the Helmsley Charitable Trust together to pursue artificial pancreas technology.

Through these efforts, Breakthrough T1D developed a roadmap for artificial pancreas development with increasingly advanced versions of the device. Manufacturers embraced the roadmap to guide their own research and development programs. Breakthrough T1D has also worked with Congressional leadership—particularly Senate Diabetes Caucus Co-Chairs Susan Collins of Maine and Jeanne Shaheen of New Hampshire and Congressional Diabetes Caucus Co-Chairs Diana DeGette of Colorado and Tom Reed of New York—to secure Federal funding through the Special Diabetes Program (SDP) for artificial pancreas research and overcome obstacles that could delay delivery of artificial pancreas systems to people with T1D.

The Special Diabetes Program (SDP) is up for renewal, so if you haven’t done so already, please sign-up to be an advocate, and encourage friends and family to do the same.

This is the latest example of how Breakthrough T1D research and advocacy work together to make T1D management better and safer. This is a win for the T1D community, and provides people at a young age with T1D another option to improve blood sugar daily management, until cures are found.