Living with type 1 diabetes is a life unlike any other: it requires the individual to be the health professional who makes daily medical decisions, administers medications, troubleshoots medical equipment, and analyzes mountains of numbers. All of this must be done to achieve glycemic control, avoiding the highs and lows that can lead to immediate or long-term dangers.
To be sure, living with T1D is only one aspect of a person’s life, and anyone with T1D can live their life to the fullest. And many do. But the challenges are still immense, compounded by shortcomings in the health care system, which is poorly designed to treat chronic conditions, especially one as complex as T1D. Despite improvements in therapies, T1D outcomes, in aggregate, continually fall short of standards set by the American Diabetes Association.
Helmsley believes that access to quality care is a right, not a privilege, and we have identified two priorities that we believe can have the greatest impact for helping those with T1D in the U.S. These priorities are inter-related, as both recognize shortcomings in the health care system and rely on technology and innovation to improve care.
For too many people with T1D, improvements in therapies over the past 10 years have not translated to better outcomes. That suggests we need to reconsider how people connect with their providers and manage their condition, regardless of geography. Helmsley invests in new approaches to care based on meeting people where they are and on treating individuals and their unique needs. Telemedicine has an important role to play, as does making greater use of mid-level providers, such as nurse practitioners, physician assistants, and pharmacists. Broadening the use of providers is especially important in places without easy access to specialty care.
Living with T1D can be isolating and challenging for young people, who may feel alone in their experience. T1D camp can make a world of difference, offering a supportive environment among peers, learning to better manage diabetes and the opportunity to make lifelong friends. Here Program Officer Deniz Dalton visits a camp in Massachusetts.
When people living with diabetes cannot or choose not to receive care from an endocrinologist, they should be able to obtain quality care from their primary care provider (PCP). Project ECHO Diabetes enhances knowledge and skills among PCPs so they can better support people with diabetes who use insulin, with a focus on T1D, meeting people where they are and enabling better outcomes.
Managing glucose is a way of life for someone with T1D, yet also perpetually vexing. There are dozens of factors that influence blood glucose levels. Currently, we can accurately measure only two of them. We also lack an understanding of the impact of exercise and other activities of daily life on glucose.
Hemsley’s Living with T1D efforts include supporting research to improve our knowledge of what causes glucose levels to rise or fall, including a first-of-its-kind study of the role of exercise. We also support research examining other metabolic signals that can provide a more nuanced measure of glucose, such as lactose and ketone levels.
Better measures hold promise to empowering people to make better decisions and lead healthier lives – but only if the information is easy to understand and translate to action.
Technology holds tremendous promise to help achieve this goal. Helmsley therefore also invests in solutions like closed-loop apps, improved insulin pumps, and continuous glucose monitor (CGM) technology.
CGMs have helped revolutionize T1D care, yet remain beyond the reach of many patients and are unfamiliar to non-specialty providers.
Helmsley is committed to connecting people to information and resources about CGM to help them become better users and achieve better outcomes. One example is our support of virtual specialty clinics, which include remote onboarding of CGM as well as insulin dosing and mental health assistance. Virtual clinics, and telemedicine in general, have assumed a more important role with the Covid-19 pandemic, and that prominence will continue after the crisis has passed. Similarly, we have invested as well in a hub-and-spoke delivery care system, which connects specialists at university medical centers (the hub) to community physicians (the spokes) who manage endocrinological disorders, including diabetes.
Even with thoughtful, responsive care that meets people where they are, nothing frightens a person with T1D more than low blood sugars – hypoglycemia – which can lead to shakiness and confusion or, in extreme cases, loss of consciousness or death. Helmsley funds researchers, clinicians, and biotech companies that focus on understanding why the body’s natural way of preventing low blood sugars (by releasing glucagon) is dysfunctional in T1D, and discovering ways to both better monitor for low blood sugar, as well as new drugs that could correct it.
These efforts are designed to make living with T1D easier, and health care better, so that individuals can go forth, undeterred, to pursue their goals, strive for success, and realize their dreams.
For many young people with T1D, camp is more than a way to get out of the house in the summer – it’s a life-changing experience. Since 2010, Helmsley has funded need-based scholarships so that more kids from low-income families can share the transformative power of camp, meeting peers, and growing confident in their ability to manage T1D.
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