In the numbers game of disease statistics, type 1 diabetes takes a back seat to type 2 diabetes, which accounts for more than 95% of diabetes cases around the globe. But the impact of type 1 diabetes (T1D), which tends to emerge earlier in life and can quickly kill an individual if it goes unrecognized or untreated, is huge. Its global burden, however, hasn’t been well understood — until now.
With the proper care and treatment, including access to insulin, which people with type 1 diabetes must use every day, individuals can live long and healthy lives with this disease. But many in the United States and countries around the world do not have access to even the most basic treatments.
To assess the impact of type 1 diabetes, JDRF, the organization I lead, and its global partners created the Type 1 Diabetes Index (T1D Index), a first-of-its-kind tool, to identify and address the wide gaps in knowledge about the incidence and impact of type 1 diabetes country by country. With this knowledge, interventions can be developed that will save lives and improve the health of those living with the disease.
The index quantifies that, without modern care, type 1 diabetes shortens lives, kills people, and is incredibly costly for the individuals living with the disease, their families, and health care systems. An individual diagnosed with the disease at age 10 loses an average of 32 healthy years of life.
Based on birth cohorts from 1950 to 2040, 6.85 million lives will be lost by 2040 if people universally do not have access to interventions to diagnose and treat type 1 diabetes, and it stands to become one of the world’s largest deadly chronic health conditions, of similar scale and impact to HIV.
This crisis can be forestalled, and the lives of millions of people can be improved, with relatively modest investments. It is my hope that the T1D Index offers governments and health organizations an essential starting point for prioritizing research on type 1 diabetes and interventions for it. The index can also help empower people living with T1D and their caregivers advocate for the care and support they deserve.
My colleagues and I at JDRF have heard stories from around the world about dramatically disparate standards of care. This is not just an issue in the developing world, but also in wealthy countries.
My brother, Stephen, and I have lived with T1D for 45 and 38 years respectively. He was diagnosed with it at age 3; I was diagnosed at age 13. Advances in treating type 1 diabetes like improved insulins, continuous glucose monitors, and automated insulin-delivery systems have transformed our lives for the better. Yet others with T1D in the U.S., as well those in wealthy and low-income countries, lack access to these improvements. According to the T1D Index, since the inception of modern medical reporting on T1D, more than 300,000 Americans would still be alive today if they had not died due to complications and challenges associated with the disease, including many who rationed insulin due to cost. This is unacceptable.
Clinicians in Malawi shared with us that if children with type 1 diabetes were able to get a prompt diagnosis and basic care, their lives could be extended by decades. In Mexico and Brazil, the standard of care is years behind, leading to devastating complications such as blindness or kidney disease, and premature death.
These stories are compelling, but not enough to drive policy change and new investments on their own.
As is the case with many challenges, data can help drive change. The T1D Index has helped identify four key interventions that can change the current trajectory for people with T1D:
- enable better education and training to accurately diagnose T1D
- create easy access to insulin and tools to measure blood sugar
- ensure that everyone living with T1D has access to technology that automates blood sugar monitoring and insulin delivery
- invest in more research into emerging ways to prevent, treat, and cure T1D.
With the global snapshot of type 1 diabetes provided by the T1D Index, advocacy organizations like JDRF, working with policymakers, nongovernmental organizations, and other decision makers around the world, can develop targeted strategies to help implement these interventions and deliver quality care to people with T1D so they can thrive no matter where they live.
If something as simple as a correct diagnosis and basic care can extend lives by decades, the world is morally obliged to act.
Aaron J. Kowalski is the CEO of JDRF, a global T1D research and advocacy organization.