Beyond Borders: The Hidden Diabetes Crisis in India

A delayed diabetes diagnosis isn’t rare, it affects millions worldwide. Behind every missed diagnosis is a human story of being unseen, unheard and let down by health systems meant to protect. For many families already stretched thin, a late diagnosis not only greatly impacts health outcomes; it can mean the difference between stability and financial hardship—and this isn’t just an issue in the U.S.

Hiding in Plain Sight

Over 89 million people have diabetes in India alone, a number that’s expected to soar to 156 million by 2050. Even more alarming, almost half of those living with diabetes don’t know it.

The tools to diagnose and manage diabetes exist. What stands in the way are human and systemic barriers:

• Dismissed Symptoms: Fatigue, weight changes, insatiable thirst or frequent urination often go overlooked until they become emergencies.
• Stigma and Misconceptions: Cultural beliefs and fear of judgment keep people from seeking help—and often when people do seek help, they’re dismissed because of rampant diabetes misinformation.
• Exclusion: Communities facing the highest rates of delayed diagnosis are often the least represented in global health decision-making.
• Unheard Voices: Solutions rarely reflect the lived experiences of people with diabetes, especially in low-resource settings.

Without addressing these realities, progress in early detection and care will continue to bypass the families most at risk.

Stories That Spark Change

Stories don’t just inform—they build trust, challenge stigma and open pathways to care. When someone hears their experience reflected in another’s voice, shame and silence give way to solidarity.

In partnership with The Moth, we’re training local ambassadors to share raw, honest stories about living with diabetes. They are not polished awareness campaigns or clinical case studies—they are lived realities of navigating stigma, scarce resources and isolation. 

The Beyond Type 1 team is adamant that these voices belong in global health conversations, so one of these ambassadors will be joining us in New York during the United National General Assembly in September 2025 to share their story and ensure the realities of living with diabetes are represented where decisions are being made.

That same commitment to lived experience also drives our support through grant funding to the following grassroots organizations:

• Nityaasha Foundation (Pune, Maharashtra): Established in 2013, the Nityaasha Foundation, supports children from underserved backgrounds living with type 1 diabetes. Through education, guidance and medical assistance, they’re helping families gain confidence in managing the condition at home and in school so children can lead full, healthy lives.
• Gram Jyoti (Deoghar, Jharkhand): Gram Jyoti, a grassroots organization in rural Jharkhand, supports under-resourced communities through health, education and livelihood programs. By starting the conversation about chronic conditions like type 1 diabetes in classrooms, they aim to raise awareness early and empower families to better understand and tackle health needs.
• SAMATVAM Trust (Bangalore, Karnataka): Bangalore-based SAMATVAM Trust helps girls with type 1 diabetes stay in school and thrive through its DISHA program. By providing medical care, financial support and life skills training, SAMATVAM empowers girls to maintain their health, continue their education and plan for a more independent future.

By resourcing local groups and elevating community voices, we’re helping ensure that the stories being told translate into action—new education, new connections and new pathways to care.

Beyond Borders

Progress extends beyond borders. The stories amplified in India spark dialogue and innovation in other low- and middle-income countries as the internet and global conferences like UNGA convene changemakers across borders. 

At its core, this work is about access to care: ensuring no one faces diabetes alone, in silence or without support. By listening first, we can build a future where everyone living with diabetes doesn’t just survive — they thrive.

Click here for more information about Beyond Type 1’s global work.

Piece informed by the research and work of Seema Srivastava, Beyond Type 1’s director of social impact and global advocacy.