Breakthrough T1D Advocacy

10/09/2026

10/08/2026

ICYMI: We are accepting applications for Breakthrough T1D 2027 Children's Congress through November 30!

Hosted every two years, Breakthrough T1D Children's Congress invites selected Delegates living with T1D to Washington, D.C., to advocate for the needs of the T1D community. Youth ages 4 to 17 can apply now at cc.BreakthroughT1D.org for the chance to share their story on Capitol Hill next summer.

10/08/2026

No one understands type 1 diabetes better than the people who live with the realities of it every day. Empowering the community has had incredible results, from improving devices and expanding coverage to securing federal research funding and accelerating new therapy approvals. Breakthrough T1D Chief Executive Officer Aaron Kowalski joined the Milken Institute to talk about the power of Breakthrough T1D's advocates and the need for the community to continue to lead the conversation on treating, covering, and curing T1D.

There's more work to do, go to breakthroughT1D.org/advocacy to become an advocate today.

10/07/2026

Cell therapy research is a critical component in the mission to cure type 1 diabetes. Today, Breakthrough T1D Chief Executive Officer Aaron Kowalski, Chief Scientific Officer Sanjoy Dutta, and Chief Global Advocacy Officer Lynn Starr met with National Institutes of Health (NIH) Director Jay Bhattacharya to discuss how we can keep these groundbreaking therapies and others moving forward. We're grateful for Dr. Bhattacharya's support and leadership.

10/07/2026

For every severe hypoglycemic event you hear about, another may go unreported. Learn more at spotlightseverehypos.com

10/06/2026

On Sunday night, Katie Beth Hand was on NBC Nightly News with Tom Llamas to talk about her experience in the Tegoprubart-Deceased Donor Islet (DDI) transplant trial.

Got questions? Swipe to dive deeper into the facts about Tegoprubart and islet cell transplants.

Then, go to the link below to learn more about the Department of Health and Human Services proposal to reclassify DDIs as organs—a critical next step—and share your thoughts to help expand access to this therapy.

https://bit.ly/3VzWpy7

10/05/2026

Thank you, Dr. Ricordi, for sharing you expertise on this issue that means so much to the T1D community. We encourage everyone to make their voice heard by sharing comments at Regulations.gov (search 'islet').

What is happening. On September 24, 2026, the U.S. Department of Health and Human Services asked the public a simple question: should islets, the tiny vascularized insulin-producing clusters inside a donated pancreas, be regulated as organs for transplantation instead of as drugs? Anyone can comment until November 9, 2026.
Why it matters to patients. For people with the most dangerous form of type 1 diabetes, repeated severe low blood sugar can cause seizures, loss of consciousness, and death. An islet transplant can stop these episodes. In a U.S. national trial, nearly 9 in 10 patients were free of severe low blood sugar with good glucose control one year later. Yet because the U.S. regulates donor islets as a drug, almost no American hospital can offer them: only 11 new U.S. patients received an islet transplant between 2016 and 2019.
Other countries have moved ahead. Edmonton, Canada, has performed over 700 islet transplants, while France over 300 and both countries cover them under national health insurance. A Shanghai hospital whose team I trained in 2018 has performed about 310 islet transplant procedures. These are also the places where the next breakthroughs, including stem-cell and gene-edited islets that may one day end the need for anti-rejection drugs, are being tested first. Much of this science was born in America, and we are at risk of losing it.
What I am asking for. Treat unmodified donor islets like other donated organs, under the national transplant system, with strict safety standards and public reporting of results. Stem-cell and genetically modified products would remain under full FDA oversight. To be honest about the limits: islet transplants require lifelong anti-rejection medicines and are for carefully selected patients, not for everyone with type 1 diabetes.
How you can help. Go to regulations.gov, search for docket FDA-2026-N-10738, and click “Comment” before November 9, 2026. A few sentences are enough. Tell HHS in your own words how severe low blood sugar has affected you or your family, and you have not had access to the islet transplant procedure so far. Tell why access to islet transplantation in the United States matters. Tell that you hear from transplant centers that they cannot do islets transplantations since islets are regulated as drugs and remain unavailable as such. They could be available if regulated as organs though. Personal comments in your own words carry more weight than copied form letters.

On the FDA page there was a limit of 5000 characters, but the link below brings you to my full comment:

https://diabetesresearch.org/comment-on-deceased-donor-islet-transplantation/

10/02/2026

"The impact was immediate"

Dave tells the story of his islet cell transplant at the Breakthrough T1D-NIH Cell Therapy Workshop.

10/02/2026

"I'm frankly lucky to be alive."

"Our kids, as young as 3 years old, taking care of their 35, 40 year old father. This is a disease that not only impacts all of us and everyone who has it, but it impacts everyone around them."
- Dave's T1D journey to islet cell transplant, Part 1

10/02/2026

Thank you, Senator Lee for partnering with us and others on deceased donor islet reclassification, an issue that means so much to the T1D community!