We are people with diabetes. Why is Congress suddenly leaving us behind?

Managing diabetes is like walking a tightrope. We must administer insulin throughout the day to maintain a safe blood sugar level. Whenever we eat, exercise, walk our dogs, or even go to sleep, we must think about diabetes. We make an average of 180 health-related decisions every single day. There are no breaks or vacations from this chronic condition. 

Life with diabetes can be draining, but accessing vital medical care should not be. For that reason, Congress alarmed us with its recent decision to exclude insulin from drug pricing legislation. 

For us, affordable insulin is a question of life and death. It is a matter of financial stability. It is more than political rhetoric. And drug companies will not lower prices on their own.

In fact, because people with diabetes depend on insulin to live, drug companies can raise prices with impunity. That has translated to companies charging around $300 for a single vial of insulin — and most people need multiple vials every month. Insulin and life-sustaining diabetes supplies remain out of reach for far too many patients in this country. 

Multiple studies, including those from Yale University and T1International, found that 25 percent of people in the U.S. ration insulin due to cost. This dangerous practice results in devastating health complications and emergencies, including death. 

People with diabetes have spoken out against these injustices for years. Because of patient-led advocacy, the insulin price crisis has evolved into an electoral issue with high-profile media attention. But while some state-level legislation has passed, our federal government continues to fail us. 

We strongly support allowing Medicare to negotiate cheaper drug prices. People with diabetes deserve to benefit from this needed change as much as anyone else. But the latest reconciliation package backtracks and no longer proposes specifically negotiating insulin prices. Many of us who have fought for insulin access and supported Build Back Better every step of the way were shocked, then outraged.  

Back in December, congressional Democrats united behind language that required insulin to be subject to price negotiations. Additionally, previous iterations included protections regarding what Medicare beneficiaries pay out of pocket for the drug. These provisions did not cause controversy. Sidelining insulin at this stage would be a missed opportunity. It would also be wildly insulting to Americans living with diabetes. 

Congress must do right by us and add insulin back into the reconciliation bill. 

We also urge our lawmakers to be even more ambitious when it comes to drug prices. Passing a package that greenlights Medicare negotiation — including insulin — is a monumental step, but the American people need more. Congress must listen to constituents — not Big Pharma — and include insulin for the uninsured, in addition to insulin Medicare negotiations and Medicare co-pay caps.

Unaffordable insulin is a symptom of a system that keeps out competition, empowers drug corporations to set higher and higher prices, and has failed patients and communities. We demand sweeping and structural change that makes all medications more affordable. 

Building the political will to challenge Big Pharma looms as a big challenge itself. Let’s not forget: the pharmaceutical industry maintains a ratio of at least two lobbyists for every member of Congress. 

Patients with diabetes, like us, deserve better than the status quo of paying hundreds or thousands of dollars a month to stay alive. We need our elected officials to act, because our lives depend on it. Talk is cheap, but insulin remains expensive.

Shaina Kasper is a patient with type 1 diabetes and the USA Policy Manager for T1International, an organization that provides advocacy training and support to diabetes patient advocates around the world. Aly Bancroft is a patient with type 1 diabetes and the Campaign Coordinator of the Access to Medicines Program at Public Citizen, a nonprofit consumer advocacy organization. Both are member groups of Make Meds Affordable.