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September 15, 2022

To move the needle on insulin access, we must invest in community-driven solutions

Type 1 diabetes (T1D) is a complex, chronic autoimmune disease that requires day-to-day management and lifelong access to essential supplies. Across the globe, the disease poses significant burdens for people living with T1D and their loved ones. The toll is especially high in low-resource settings. To fully address barriers to T1D care in low- and middle-income countries (LMICs), we must center local, community-based strategies.

People living with T1D in low- and middle-income countries face immense barriers to care

Following the 1921 discovery of insulin, T1D transformed from a death sentence to a manageable chronic condition. Thanks to a century of subsequent T1D research and advocacy, people living with T1D in high-income countries now live long, healthy lives. But elsewhere, millions of lives still hang in the balance. Access to life-saving insulin and comprehensive T1D care remains limited in many LMICs, where extreme supply chain mark-ups, inconsistent insurance coverage, and overburdened health systems put T1D care beyond reach for many.

Tragically, without access to care, the life expectancy for people living with T1D in LMICs is less than one year. [1] This harsh reality is unacceptable.

People living with T1D can thrive if we address these barriers collaboratively

Helmsley Charitable Trust is a global philanthropy committed to ensuring that people living with T1D have the resources to thrive, no matter where they call home. We recognize that barriers to T1D care are deeply entrenched, particularly in LMICs. Since 2008, we have committed more than USD$1 billion to understanding this disease, developing better treatments, and improving access to care for underserved communities.

Most recently, Helmsley provided seed funding for The T1D Community Fund at Panorama Global.

Helmsley knows that the individuals, families, and communities affected by T1D have the most vested interests in finding solutions, and in Panorama, we found a partner with a shared focus on centering and empowering the individuals and organizations closest to the issues.

The T1D Community Fund will not only support access to T1D care at the community level, but also foster a network of in-country partners whose insights and voices can help inform decision-making at organizations like ours.

Community-based organizations spur action and drive innovation

For those living with any severe disease, community support can mean the difference between life and death. When HIV/AIDS first ravaged marginalized groups around the globe, community activists joined forces to demand action. Their efforts helped move the US government from silence to strategy, resulting in the largest commitment by any nation to address a single disease in the world. Community advocates have also helped improve standards of care for conditions like tuberculosis by ensuring that the most severe cases receive treatment. And throughout the COVID-19 pandemic, community-based providers have led vaccine campaigns in hard-to-reach areas, combatted health misinformation and government mistrust, and fought to protect health access for vulnerable people. These local triumphs serve as global models when charting the path forward for T1D care.

As a philanthropy, Helmsley has the privilege of supporting and learning from community-based organizations which improve the lives of people living with T1D and their families every day. We are continuously inspired by the ways they meet communities’ most urgent needs. They fundraise to pay for loved ones’ care. They arrange transportation to distant diabetes clinics. They ensure mental health support for families strained by daily hardship. They adapt patient education materials for local cultures and contexts. They support research to align codified standards of care with patient's lived experiences and preferences.

In sum, at a local level, community-based organizations help people living with T1D and their families lead full, vibrant lives. On a global level, they help Helmsley realize our vision for tailored T1D care around the world.

To engage and drive innovation, community-based organizations need support and trust

The global health community is beginning to understand that affected individuals must be at the heart of T1D strategies. But too often, community-based organizations are asked to join meetings, lend perspectives, and support workstreams without any additional resources. We must change this dynamic; our T1D partners deserve better.

It’s for this reason that Helmsley is providing seed funding for The T1D Community Fund. In doing so, we are seeding Panorama’s efforts to provide much-needed grant funding to community-based organizations that are working to close care gaps in LMICs. Our investment in the Fund is a starting point, and Helmsley will continue to finance strategies that build networks, expand capacities, and amplify voices until every person, everywhere has access to lifesaving T1D care. We look forward to partnering with Panorama to learn from the Fund’s grantees, which will help inform how we continue to weave the principles of community-based leadership into our broader grantmaking approach.

To our global partners, please spread the word: The T1D Community Fund stands ready to support community-based T1D action in LMICs around the world. We encourage you to share this opportunity with your networks and consider building on this momentum by pledging your own support for The T1D Community Fund.

 

The T1D Community Fund is powered by Panorama Global—a social impact nonprofit that empowers changemakers through radical collaboration—with seed funding from The Leona M. and Harry B. Helmsley Charitable Trust. Learn more here.


[1] Beran D., Yudkin J.S.(2006) Diabetes care in sub-Saharan Africa. Lancet 2006; 368: 1689–95.  

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