Opinion: My insulin hasn’t changed, but the price has risen more than 600%

I was fortunate to be invited to the White House to share my story with President Biden ahead of his recent speech on drug pricing reform in which he called on Congress to allow Medicare to negotiate lower drug prices. 

That day in the Oval Office, we discussed that if Medicare were able to negotiate drug prices, it would drive down all drug prices and provide real relief to patients across the country. So many Americans depend on innovation for future medicines, but those medicines must have prices that everyone can afford. 

I have lived with type 1 diabetes since I was 11. To people living with type 1 diabetes, access to insulin is like access to water. Without it, we die.

In the nearly 50 years since my diagnosis, the biggest hurdle has always been affording my insulin, which my body needs to survive. Novolog, the insulin I buy from one of three companies that sells insulin, costs less than $6 a vial to make but is priced at $289 for each vial. The price of prescription drugs in this country isn’t just expensive, it’s outrageous.

Drug companies want us to believe that high drug prices are required to fund innovation and research into better treatments and maybe even a cure, but that’s simply not true. Since Novolog came to the market in 2001, its price has increased by over 600%, and the drug has brought in more than $150 billion in sales.

As the price has skyrocketed, my insulin formula has stayed exactly the same; only the price has changed. 

These unjustified price hikes have a real and painful impact on my life. My husband and I are careful spenders, but the price of my diabetes medications eats a hole in our budget. I have had to ration my insulin. I drive a 17-year-old car that needs repairs. And I seriously doubt that my husband will ever have the opportunity to retire. 

Big Pharma wants us to believe that Medicare negotiation would decrease access to drugs. That’s just not true. Current high drug prices already limit our access to drugs since patients can’t afford medications we need.

I have been lucky to find ways to afford my insulin, but I know other people who are rationing their insulin or simply going without. Having to worry about how I’ll pay for my insulin and watching people in my community struggle is terrifying, frustrating, and angering. 

Right now, members of Congress are working to include President Biden’s drug pricing proposals in the Democratic reconciliation package. They would allow Medicare to negotiate lower drug prices for Americans and provide increased funding for government research that drives innovation and new drug development. 

The House of Representatives version of the reconciliation package includes H.R. 3, a comprehensive bill that would save nearly half a trillion dollars for taxpayers by restoring balance to our drug pricing system and curbing the pharmaceutical industry’s unilateral pricing power. I’m thankful that my Representative, Diana Degette, has been a long-time sponsor of  H.R. 3.

The Senate is drafting similar proposals that would allow Medicare to negotiate. Sens. Michael Bennet and John Hickenlooper have been champions on the issue, and I am grateful that I can count on them to continue to stand with Coloradans and support a strong bill that includes Medicare negotiation. 

Momentum in the House, Senate, White House, and among voters provides a real opportunity for change. Ninety percent of Americans support allowing Medicare to negotiate lower drug prices.

As someone who has been facing the outrageous price of insulin for decades, I can’t begin to tell you how much real drug pricing reform would mean to me and my community. I’m so grateful that President Biden is fighting to allow Medicare to negotiate so all Americans have access to the medications we need at prices we can afford. Congress, it’s time to get it done. 

Gail deVore, of Denver, is a small business owner and volunteer patient advocate with Patients For Affordable Drugs Now.