If you’ve been following my advocacy for a while, you know I have a soft spot for technology in diabetes care. I love how it’s evolving, pushing boundaries, and giving us more flexibility. But I also know that not everyone has equal access, and not everyone’s choices fit neatly into the regulatory framework.

Well, something pretty big just happened in Italy.

For the first time, open-source automated insulin delivery (AID) systems—formerly known as DIY systems—have been officially acknowledged in a position statement by three major Italian scientific societies:

• AMD – Associazione Medici Diabetologi
• SID – Società Italiana di Diabetologia
• SIEDP – Società Italiana di Endocrinologia e Diabetologia Pediatrica

The term ‘DIY’ (Do-It-Yourself) has been widely used for years, but leading open-source diabetes projects, researchers, and advocacy groups are increasingly adopting “Open-Source Automated Insulin Delivery” systems as a more accurate term. This reflects the reality of these systems: they are collaboratively developed, community-driven, and based on open-source technology rather than individually modified or manually adjusted solutions.

Academic papers and conference presentations (e.g., ATTD, ISPAD) are increasingly using ‘”Open-Source AID'” to differentiate these systems from non-structured DIY approaches, acknowledging their standardized protocols, community support, and real-world impact.

This Position Statement, first presented just before #ATTD2024 in Florence (March 2024), has now been officially published in the December 2024 issue of Il Diabete. It’s a HUGE step for the open-source AID community in Italy and beyond.

So, What Does This Mean?

Until now, open-source AID systems — like Loop, OpenAPS, and AndroidAPS — have existed in a gray area. They’re not commercially approved, but they’re backed by real-world data and used successfully by thousands of people with diabetes worldwide.

The statement confirms some critical points:

• Doctors cannot deny support to people who choose to use open-source AID systems.

• Scientific evidence backs their safety and effectiveness—with studies showing improved glucose management, improved quality of life, and reduced fear of hypoglycemia.

• The responsibility remains on the person with diabetes, but medical professionals should provide guidance on therapy optimization.

• Education is key — scientific societies will now work to train more healthcare professionals to better understand these systems.

• Special attention must be given to children using open-source AID systems and ensuring their rights are protected, while also considering parental responsibility.

Finally, this acknowledges that open-source AID users exist — and that they deserve informed, ethical, and responsible medical care.

A Collaborative Path Forward

While this Position Statement is a huge step toward recognizing Open-Source AID, there’s still work to do before these systems are fully understood and supported within mainstream diabetes care.

At this moment, Open-Source AID remains outside official regulatory frameworks, meaning:

• Doctors may not prescribe these systems, even when they acknowledge their benefits. However, patients and caregivers must still be informed about them by their healthcare team to make truly informed decisions about their diabetes care.

• Users rely on community-driven resources for learning and support, rather than traditional customer service or manufacturer guidance.

• Personal responsibility is key, and users must actively engage in understanding and maintaining their systems for safe and effective use.

But here’s the real challenge:

“A person with diabetes has the right to choose their treatment, free from external interference. This right is protected by the Italian Constitution, the Charter of Fundamental Rights of the European Union, and the Convention on Human Rights and Biomedicine.”

So, if the law protects our right to choose, why is access to information and support so uneven?

• Some people have access to strong community support, while others struggle to find reliable guidance.

• Some doctors are open to discussing Open-Source AID, while others refuse to acknowledge it exists.

• Some users feel confident navigating their system, while others are left in the dark, relying on second-hand information.

This inconsistency leaves too many people at a disadvantage, increasing risks and limiting access to potentially life-changing technology. Every person with diabetes, and every caregiver, deserves to receive accurate and unbiased information — whether or not they ultimately choose Open-Source AID.

The Power of Community & The #PayItForward Mindset

One of the biggest strengths of Open-Source AID is collaboration. The safest and most ethical way forward is empowering individuals to build their own systems — learning, understanding, and connecting with the wider community — rather than relying on preconfigured apps from third parties.

Why does this matter?

• It ensures users stay in control — understanding how their system works and knowing where to find support when needed.
• It preserves the integrity of open-source technology, preventing misuse, commercialization, or unsafe distribution of pre-built apps.
• It strengthens the community, where experienced users help newcomers, always respecting official documentation and safety guidelines.

This is why the #PayItForward mindset is so important in Open-Source AID:
If you can help someone, do it ethically—by guiding them, sharing knowledge, and pointing them to official documentation and code. If you can’t, then avoid directing them to pre-built solutions that remove the learning process and introduce risks.

By working together, advocating for recognition, and ensuring ethical knowledge-sharing, we can create a future where more people have access to safe, community-supported, and officially acknowledged Open-Source AID systems.

What Comes Next?

This Position Statement is a step forward — but what truly matters is how we, as a community, move forward together.

• People with diabetes and caregivers have to be informed about all their options, including Open-Source AID, so they can make the choices that best fit their needs.

• Healthcare professionals should have access to the right knowledge — not necessarily to promote Open-Source AIDs, but to understand it well enough to support their patients who choose it.

• The community must continue to share knowledge, foster ethical guidance, and uphold the #PayItForward mindset, ensuring that anyone who wants to learn has access to the right tools and support.

Open-Source AID isn’t the right choice for everyone, and that’s okay. What matters is that those who use it can do so safely, responsibly, and with the right support.

The Inevitable Future: Open-Source AID, One Country at a Time

The momentum is undeniable. From one country to the next, Open-Source AID is being acknowledged, discussed, and slowly — but surely — integrated into diabetes care conversations.

• First, it was the early adopters. The passionate community members who built, tested, and proved these systems work.
• Then, the research followed. Studies showing the benefits, safety, and quality-of-life improvements.
• Now, scientific societies and medical organizations are taking notice.

Open-Source AID is here. It’s growing. And step by step, country by country, it will continue to gain recognition — not because companies pushed for it, but because real people with diabetes and their caregivers built it, proved its value, and made sure the world couldn’t ignore it.

The question is no longer if Open-Source AID will be universally accepted — it’s when.

And we? We’ll be here, pushing forward, one milestone at a time.

Read the full Italian position statement here:
🔗 Position Statement on DIY Systems – Il Diabete (December 2024)

International Recognition of Open-Source AID

This Position Statement from Italian scientific societies aligns with a growing global acknowledgment of Open-Source Automated Insulin Delivery (AID) systems in diabetes care. Over recent years, several esteemed organizations have recognized the significance of these systems:

• International Consensus Statement (2021): A comprehensive review published in The Lancet Diabetes & Endocrinology provided detailed clinical guidance supporting the implementation of Open-Source AID systems in clinical settings. (PubMed)
• American Diabetes Association (ADA) Standards of Care (2024): The ADA’s guidelines included recommendations for healthcare providers to understand and support patients using Open-Source AID systems, reflecting their safety and efficacy. (ADA Standards of Care 2024)
• EASD, in collaboration with the American Diabetes Association (ADA), has published a consensus report titled “Automated Insulin Delivery: Benefits, Challenges, and Recommendations” in 2022. This report provides a comprehensive overview of AID systems, including discussions on both commercial and open-source options, and offers guidance for healthcare professionals. The report is accessible here: diabetesjournals.org.
• International Society for Pediatric and Adolescent Diabetes (ISPAD) Guidelines (2022): ISPAD recognized the use of Open-Source AID and emphasized the need for healthcare professionals to understand these systems to better support pediatric and adolescent patients. (ISPAD Guidelines)
• Advanced Technologies & Treatments for Diabetes (ATTD): These systems have been consistently featured in presentations, research sessions, and panel discussions at ATTD conferences. The increasing presence of Open-Source AID in this high-profile event underscores its growing relevance in diabetes technology and clinical care. Each year, ATTD brings together leading researchers, clinicians, and innovators, reflecting how patient-driven solutions like Open-Source AID are shaping the future of diabetes management.
• Diabetes Canada Position Statement (2023): Diabetes Canada released a position statement on Do-It-Yourself Automated Insulin Delivery systems, providing guidance for healthcare providers on supporting patients who choose to use these systems. (Diabetes Canada DIY-AID Position)

Today, health authorities and diabetes associations worldwide have access to numerous guidelines and concrete examples provided by scientific societies and the most expert communities in diabetes management.