Through our research and advocacy, JDRF accelerates scientific discovery, commercial development, regulatory approvals and healthcare access for breakthroughs to cure, prevent and treat type 1 diabetes (T1D).
Our policy agenda
To ensure people have access to the most effective T1D treatments and therapies, JDRF has set an ambitious advocacy agenda for 2017. Among our most pressing priorities we must:
Support innovative research
We support a multi-year renewal of the Special Diabetes Program (SDP). The SDP funds $150 million annually in T1D research through the National Institutes of Health, and has allocated nearly $2.5 billion to T1D research since 1997. Since its inception, the SDP has enjoyed strong, bipartisan support in Congress and the Administration. JDRF has long helped secure government support for life-changing technologies like artificial pancreas (AP) systems and continuous glucose monitors (CGMs), as well as eye, kidney and beta cell therapies. Renewing the SDP will allow researchers to build on past successes and continue to conduct promising trials that will lead to better treatments, prevention and a cure for T1D.
Ensure new T1D therapies are safe and effective
We provide the FDA with information to help review and approve drugs and technologies for safe and swift delivery to people with T1D. Establishing these clear and reasonable pathways for scientific research and regulatory approval promotes continued innovation in:
- Artificial pancreas systems: JDRF worked closely with the FDA to establish guidance for AP systems in 2012. We continue to work with the agency on regulations for the next generation of this technology that uses computer algorithms and continuous glucose monitors to provide the right dose of insulin at the right time.
- Prevention therapies: We play a leading role in a consortium seeking FDA qualification of certain T1D biomarkers, or measurable indicators of the disease. Qualification facilitates the agency’s regulatory decision-making and may accelerate research and development of promising prevention therapies to stop or slow the progression of T1D.
- Beta cell replacement: JDRF educates FDA staff on beta cell encapsulation technologies—which wrap insulin-producing islet cells in a protective barrier before implanting them into the body. These therapies may give people with T1D freedom from insulin injections for up to two years. The FDA approved the first clinical trials of one product in 2014, and several others are in development.
- T1D outcomes: JDRF organized the T1D Outcomes Program, which proposes an expanded set of metrics for evaluating T1D therapies in research, regulatory review and healthcare reimbursement. Hemoglobin A1c (HbA1c), which gives average blood glucose over a three-month period, is most frequently used. Recent research suggests that measuring additional outcomes, like hypoglycemia and time in range, can help assess a treatment’s effectiveness.
Promote access to T1D therapies and technologies
People with T1D must have access to groundbreaking innovations to benefit from them. JDRF encourages health plan policies to cover prescribed T1D therapies at affordable costs and advocates for national policies that protect those with chronic diseases. Our work to improve healthcare access for the T1D community has three main areas of focus.
Coverage, Affordability and Choice
- Medicare CGM Coverage: JDRF has been the leading advocate for widespread adoption and coverage of CGM technologies. We won a significant victory in January 2017 when the Centers for Medicare & Medicaid Services (CMS) recognized CGM devices as durable medical equipment, making them eligible for Medicare coverage.
- Artificial Pancreas Coverage: JDRF supports broad healthcare coverage for AP systems, including the first approved by the FDA in 2016 and others to come.
- Insulin Pump Choice: JDRF strongly opposes health plan policies that limit your choice of insulin pump. We advocate for a competitive market and provide tools to help the T1D community represent their needs to health plans.
- Out-of-Pocket Costs for T1D: People with T1D can face high out-of-pocket costs for insulin and other management tools they need to survive. JDRF urges employers, health plans and manufacturers to develop policies that cover these supplies at low and predictable out-of-pocket costs. This could prevent life-threatening conditions such as diabetic ketoacidosis and severe hypoglycemia.
- Barriers to improved care: JDRF evaluates barriers to adoption for T1D therapies and takes steps to make sure the T1D community can obtain new technologies.
Protections for Pre-existing Conditions
JDRF has joined with more than 70 organizations that advocate on behalf of people with chronic, serious, and life-threatening diseases to educate the incoming Administration and Congress on the unique health insurance needs of our community. In December 2016, this group sent a letter to then President-elect Trump and Congressional leadership explaining the importance of policies protecting those with pre-existing conditions and allowing young adults up to age 26 to remain on their parents’ health plan.
JDRF has released a set of healthcare principles and will be working with a variety of stakeholders to advocate that these principles are considered in any health reform that may take place in 2017. People with T1D can share their story about the importance of these protections through this Senate action alert.
Evaluation of New Therapies
JDRF collaborates with many partners to advance scientific evaluation of T1D therapy effectiveness. We do so to provide healthcare decision-makers with the information they need to make coverage decisions. This includes analyzing the unmet needs in the T1D community and our work in the T1D Outcomes Program.
For more details about these advocacy priorities and our support for healthcare access, please read our JDRF 2017 Advocacy Agenda.