I Need Insulin to Stay Alive. It's Gradually Being Priced Out of My Reach | Opinion

It happened at the supermarket a few years ago, as I stood in the checkout line: My breathing became labored and my vision blurred. My throat felt parched. I became fatigued and so irritable that I snapped at my daughter, who had accompanied me to the store. I knew what was happening: These were the effects of insulin rationing.

I had only taken half my prescribed dose of insulin and my blood sugar was spiking. I hadn't been able to pay for a prescription refill, and had taken less than a full dose of insulin, so that the supply I had could tide me over until payday. I knew I could be risking my kidneys, my eyesight, or possibly death. However, I had to pay the mortgage, keep food on the table and the electricity on.

I was diagnosed with Type 1 diabetes shortly before my 21st birthday, and I've needed seven to eight injections of insulin every day for the past 28 years. Back then, my insulin and equipment cost me about $50 a month.

But over the past decade, the price of insulin has skyrocketed. I have health insurance, but I still spend about $350 out of pocket every month to cover part of the cost of my insulin, as well as other medications and diabetes supplies that I need to stay alive.

My need for insulin has impacted every major decision in my life. Shortly after graduating from college, I had to give up my dream of working in the theater because most jobs in that profession didn't offer full health insurance benefits.

Even now, at the highest tier of insurance I can get from my employer, my medication and diabetes supplies make up a huge part of my monthly budget. Over 7 million Americans with diabetes depend on insulin, but 44 percent of them struggle to find the money to pay for it.

Skyrocketing insulin prices don't have to be our reality. President Joe Biden gave a national address urging Congress to pass his economic plan, which would lower prescription drug prices for people like me.

The plan would allow Medicare and private insurers to negotiate lower prices on behalf of all Americans—not just those on Medicare. This would have an industry-wide impact that would make prescription drugs more affordable in our country. And the plan would cap insulin copays at just $35 a month.

Type-1 diabetes management
A man looks at his supplies for Type 1 diabetes management. Matt Harbicht/Getty Images for Tandem Diabetes Care

It's not only the single most effective proposal to lower drug costs, but it's also popular with voters. Polling shows that 91 percent of voters in my home state of West Virginia favor requiring drug companies to negotiate with Medicare.

Last year, Democrats in Congress were focused on passing the measure, but now it's stalled in the Senate. Prescription drug negotiations should not be a partisan issue. Diabetes doesn't care if you're liberal or conservative.

As bad as it was to go with a lower dose of insulin than my doctor had prescribed, it's even worse to go without insulin altogether. I've donated insulin I didn't need to diabetics I've met online so they don't suffer the uncontrolled spikes in blood glucose that can lead to blindness, kidney and heart damage and loss of limbs.

How much longer must hardworking Americans ration their medications while drug companies make historic profits? The pharmaceutical companies say that with price controls they will be unable to innovate and produce new drugs, but their research and development spending is only a fraction of their expenditures.

For every day that Congress does not act, one in four Type 1 diabetics—or about 400,000 people—will ration their insulin, over 1,400 families will go bankrupt from medical expenses and nearly 13 million people will skip medication doses because of costs.

For many people like me, Biden's prescription drug plan is literally a matter of life and death. I've got three kids who need me. I have to make sure to stick around for their sake. The president's measure still has a great chance of being law, as long as members of Congress prioritize the interests of their constituents—and not those of Big Pharma.

Mindy Salango lives in Morgantown, W.Va. with her partner Paul and their three children. She is active in the movement to reduce the price of insulin and recently founded a group, Advocacy Out Loud, to bring attention to this and other causes.

The views expressed in this article are the writer's own.