People with type 1 diabetes (T1D) need access to affordable, comprehensive health insurance that covers the care necessary to treat their diabetes. To survive, they rely on daily supplies of insulin and the tools required to manage T1D.
JDRF continues to advocate, along with a variety of stakeholders, for the following healthcare principles that will help ensure those with T1D can access the supplies and care they need:
- Ensuring access – specifically affordability, choice and coverage – for insulin and the tools required to manage T1D. Costs for insulin and diabetes management tools have soared and show no signs of stopping. Further, some insurers and employers have taken steps to limit patient choice or do not cover the full range of FDA-authorized diabetes management tools. For the 1.6 million people with T1D in the U.S., being able to choose and afford the insulin and tools they need to control their disease is critical to survival. We need to ensure affordable access whether someone has insurance or none at all.
- Preserving protections for those with pre-existing conditions so they have access to comprehensive health insurance at rates similar to people without such conditions. Under the current law, there are provisions to ensure that people with preexisting conditions—like the 1.6 million Americans who live with T1D—cannot be denied insurance, charged higher premiums or have benefits limited for certain conditions. This is crucial for people with T1D who need health insurance coverage to access the drugs and devices that keep them alive every day.
- Prohibiting insurance companies from setting annual and lifetime dollar limits for essential health benefits (EHBs). Before passage of the Affordable Care Act, insurance companies were able to set dollar limits—either annually or for the entire enrollment period—on spending for an individual’s covered benefits. For people with chronic conditions, annual and lifetime caps on EHBs can present a wide array of problems, suddenly disrupting access to all health care, including insulin, a prescription medication to which daily access is essential for people with T1D to stay alive.
- Allowing young adults to stay on their parents’ insurance until the age of 26. Current health law allows young adults to join or remain on their parents’ health insurance until the age of 26. Remaining on a parent’s plan is crucial to children and young adults with diabetes who have much greater healthcare expenditures, approximately 2.3 times higher, than their peers without diabetes. This provision ensures these young people have consistent and affordable access to supplies and medications necessary to manage their disease.
- October 2020 – New Medicare Part D plans cap insulin costs at $35 per month, responding to calls by JDRF and others for action in Washington.
- August-September 2020 – JDRF volunteers held hundreds of meetings with members of Congress across the country as part of the Promise to Remember Me Campaign, calling for increases in research funds, more affordable insulin, and protections for people with pre-existing conditions.
- July 2020 – The nation’s largest insurance company, United Healthcare, expands coverage to all types of insulin pumps, after JDRF mobilizes T1D community.
- April 2020 – Lilly lowers cost of insulin to $35/month during coronavirus pandemic thanks to advocacy by JDRF and the diabetes community
- July 2019 – Over 160 Children’s Congress delegates stormed Capitol Hill, meeting with hundreds of members of Congress and testifying at a Senate hearing.
- April 2019 – JDRF’s Aaron Kowalski, Ph.D., testified about the urgent need for affordable insulin in Congress before the House Energy & Commerce Committee.
- December 2018 – In light of a negative ruling on the Affordable Care Act (ACA), JDRF launched a petition urging Congress to preserve current law protections for people with pre-existing conditions.
- Summer/Fall 2018 – JDRF volunteers met with hundreds of members of Congress to stress need to preserve pre-existing conditions protections.
- June 2018 – JDRF wrote a letter to the U.S. Department of Health and Human Services (HHS) Secretary Alex Azar expressing our grave concern with the Administration’s recent stance in litigation related to pre-existing conditions and requesting a meeting to discuss how to ensure current law protections for people with pre-existing conditions are preserved. It is our position that health insurance companies should not be able to charge people with type 1 diabetes (T1D) more money for health coverage.
- September 2017 – JDRF issued an action alert to mobilize advocates nationwide to voice their concerns about the Graham-Cassidy proposal to their senators.
- September 2017 – JDRF released a statement with 15 other patient and provider groups opposing the proposal put forward by Senators Lindsey Graham (R-S.C.), Bill Cassidy (R-La.), Dean Heller (R-Nev.), and Ron Johnson (R-Wis.). This proposal would negatively impact patients’ access to adequate and affordable health coverage and care.
- July 2017 – JDRF convened more than 160 Delegates from across the country at the JDRF 2017 Children’s Congress. Delegates met with their Members of Congress, asking them to support the renewal of the Special Diabetes Program, robust funding for the National Institutes of Health and U.S. Food and Drug Administration, and to preserve our health care principles.
- June 2017 – JDRF issued an action alert engaging its grassroots network to contact their senators urging them to craft legislation that would uphold our key health care principles.
- May 2017 – JDRF released a statement after the House bill passage expressing disappointment in the bill’s passage and urging the T1D community to contact the Senate to make their voices heard.
- May 2017 – JDRF signed a letter with nine other organizations and released a statement opposing the American Health Care Act (AHCA) with the MacArthur amendment, which weakens protections for pre-existing conditions.
- March 2017 – JDRF joined with major nonpartisan patient groups to push for access.
- December 2016 – JDRF joined with more than 70 organizations to send 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.