A joint collaboration between JDRF, the Helmsley Charitable Trust, and T1D Exchange paves a path toward greater adoption of effective therapies
New York, NY, March 1, 2016 – Despite many advances in the treatment of type 1 diabetes (T1D), most people with T1D struggle to achieve recommended glucose control guidelines, and are at risk of low blood sugar emergencies and long-term complications. While technologies have made a significant impact on monitoring, management, and treatment of the disease, data from T1D Exchange reveal that only 40 percent of people living with T1D use insulin pumps and less than 15 percent use continuous glucose monitors.
Innovative therapies and technologies in development have the potential to transform diabetes care, but people with T1D will need access in order to benefit from them. Today, JDRF, The Leona M. and Harry B. Helmsley Charitable Trust, and T1D Exchange have announced a collaborative health policy initiative to address these challenges and help ensure access to innovative T1D therapies and technologies to improve outcomes.
Funded by JDRF and the Helmsley Charitable Trust, the health policy initiative includes three programs intended to support and advance the T1D healthcare landscape:
- T1D Unmet Need: Analyze evidence to better characterize healthcare utilization and outcomes of the T1D population. This effort will leverage existing resources and commission new data collection to develop a definitive source of T1D facts and figures that can be used in research, regulatory, and healthcare decision making.
- Barriers to Adoption: Conduct research to better understand factors that impact adoption of therapies and technologies by people with T1D as well as to understand barriers to prescribing faced by healthcare professionals. The goal is to generate actionable data that will help pave the path for adoption of future technologies that can improve glucose control and reduce the burden of disease.
- T1D Outcomes: Establish a program to evaluate and define measures other than hemoglobin A1c (HbA1c) – the current gold standard for diabetes management – that are important in measuring improved T1D clinical outcomes, such as hypoglycemia and time in range. This initiative will include input from individuals living with T1D and their caregivers as well as clinicians and research experts with the aim of expanding clinical, patient-reported, and economic outcomes to be used to evaluate and compare potential therapies in the research, regulatory, and healthcare settings.
“The health policy initiative continues JDRF’s long-standing commitment to advocacy on behalf of the T1D community,” says JDRF Chief Mission Officer Aaron J. Kowalski, Ph.D. “Partnering with the Helmsley Charitable Trust and T1D Exchange provides an unprecedented opportunity to leverage the reach, expertise, and impact of each organization to improve outcomes in type 1 diabetes.”
David Panzirer, a Trustee of the Helmsley Charitable Trust, adds: “We believe it is imperative to improve health outcomes and the quality of life for everyone affected by type 1 diabetes. By addressing adoption and barriers to accessing today’s T1D therapies and technologies, it is our goal that we can also inspire the business case for new discovery and innovation.”
T1D Exchange will serve as a key partner in the health policy initiative, providing strategic guidance, operational support, and insights and perspectives from a broad representation of the T1D population – ranging in age, geography, socioeconomic status, and treating provider type. Additionally, a wide range of healthcare professionals will be included in the data collection for this initiative, including pediatric and adult endocrinologists, primary care physicians, nurse practitioners, physician assistants, and diabetes educators from both hospital and community practices.
“Based on findings from our clinic registry and our online patient and caregiver community, Glu, we know that many patients cannot access important treatment options,” says Dana Ball, co-founder and Executive Director of T1D Exchange. “There is a clear imperative to address barriers to access with health policy modifications and better physician and patient education.”
JDRF is the leading global organization funding type 1 diabetes (T1D) research. Our mission is to accelerate life-changing breakthroughs to cure, prevent and treat T1D and its complications. To accomplish this, JDRF has invested nearly $2 billion in research funding since our inception. We are an organization built on a grassroots model of people connecting in their local communities, collaborating regionally for efficiency and broader fundraising impact, and uniting on a national stage to pool resources, passion, and energy. We collaborate with academic institutions, policymakers, and corporate and industry partners to develop and deliver a pipeline of innovative therapies to people living with T1D. Our staff and volunteers in more than 100 locations throughout the United States and our six international affiliates are dedicated to advocacy, community engagement and our vision of a world without T1D. For more information, please visit jdrf.org or follow us on Twitter: @JDRF
About the Helmsley Charitable Trust
The Leona M. and Harry B. Helmsley Charitable Trust aspires to improve lives by supporting exceptional organizations in health, selected place-based initiatives, and education and human services. Since 2008, when the Trust began its active grantmaking, it has committed more than $1.5 billion for a wide range of charitable purposes. The Helmsley Type 1 Diabetes Program is one of the largest private foundation funders of T1D in the United States focused on understanding the disease, developing better treatments and improving care and access.
About T1D Exchange
T1D Exchange, the first program of Unitio, was founded on the premise that finding faster, better therapies for type 1 diabetes (T1D) requires a research model as multifaceted as the disease itself. T1D Exchange acts as a convener for the thousands of people working to improve patient outcomes already—by connecting them to one another and to the patient community at large. Drawing on decades of research and data that have come before, T1D Exchange aims to be the translational engine that enables the entire T1D ecosystem to collaborate in truly novel ways via the integration of a Clinic Network, Clinic Registry, Biobank, and the online patient/caregiver community, Glu.
JDRF Media Contact: