Parents Shouldn’t Have to Spend Thousands of Dollars to Keep Their Diabetic Kids Alive (OPINION)

May 18, 2022
11:31 AM

Diabetes testing strips (bodytel/CC BY-ND 2.0)

ATLANTA — When I came to America from Brazil nearly 25 years ago, I relentlessly pursued the “American Dream.” America was the land of opportunity, and I worked hard to build a life for my family.

But I never anticipated my child’s insulin costs would require thousands of dollars just to keep her alive. Now, my American Deam has turned into a nightmare where I have to drain my family’s savings to afford her insulin.

When Luiza was diagnosed with type 1 diabetes at eight years old, I didn’t really understand what it meant. After a three-day hospital stay and a flood of information, exhaustion turned everything into a blur.

But I’ll never forget the shock of seeing the price of her prescription at the pharmacy. The two vials of insulin she needed totaled $750. After purchasing blood testing supplies and syringes, our bill came out to around $1000 for a single month’s supply.

Eight years later, insulin prices are still a source of worry. In the past decade, insulin prices have tripled, leaving type 1 diabetics with two options: pay up or risk their lives.

Faced with high costs, nearly one in four diabetics report rationing their insulin. I’d never allow my daughter to go without insulin, but we’ve been close to a crisis point too many times to count.

When we have just one vial of insulin left, my thoughts run a mile a minute. One, in particular, makes my stomach drop: my daughter could die if I don’t get insulin soon.

What would happen if the glass vial breaks, or she misplaces it? How will I come up with hundreds of dollars to purchase her prescribed insulin?

In times like these, when I’m out of options, I turn to the online type 1 diabetes community. I find strangers generous enough to ship me a vial of insulin. It’s a community that has and continues to support my daughter when the American healthcare system fails her.

Insulin affordability is always harder at the beginning of the year when we haven’t met our deductible. I’d leave pharmacies defeated because I couldn’t afford the thousands of dollars I was quoted for two vials of insulin.

Instead, I found people online willing to ship or share their medication and supplies. Someone in Colorado sent me insulin more than once, and another family from Canada also shipped me insulin.

Thankfully, there are people all over the world who want to help struggling Americans. With their assistance, my child has never gone without insulin.

Loose networks of kind strangers are not a reliable or sustainable solution for treating my daughter’s diabetes. It shouldn’t have to be this way.

We’re starting to see a slow shift toward lowering the cost of insulin for families like mine and holding pharmaceutical companies accountable. Democrats in the Senate are working to pass President Joe Biden’s proposal to cap insulin copays at $35. The plan would further both Sen. Raphael Warnock’s (D-GA) plan and the insulin legislation that recently passed in the House, which was spearheaded by my own representative, Congresswoman Lucy McBath (D-GA).

If enacted, this legislation would offer families like mine peace of mind. Luiza will soon graduate high school, and before we know it she’ll be on her own. But my hopes for her adulthood are saddled by fear she won’t be able to afford her healthcare costs when she’s just beginning her career.

With this bill, it won’t matter the type of insurance future employers offer, and I can have faith that Luiza will always be able to afford her insulin.

A niece of mine back in Brazil was recently diagnosed with type 1 diabetes. Upon hearing of her experience, it confirmed to me how broken America’s healthcare is.

When my niece received her diagnosis, she quickly accessed the supplies and medication she needed. In contrast, I jumped through a million hoops just to get the paperwork I needed to begin Luiza’s diabetes care.

Most striking of all, my niece’s insulin and diabetes supplies are completely free to her.

We shouldn’t pay exorbitant prices for the same medication just because we live in America. The high costs of insulin should not put life-saving medication out of reach for anyone.

For too long, we sacrificed the lives of diabetics for the profits of pharmaceutical companies and insurance companies. With lives on the line, we cannot afford for our elected leaders to miss the moment to make insulin more affordable for millions of people.

I moved here with the mindset that, in America, anything is possible as long as you work hard. But it feels like no matter how hard my husband and I work, healthcare costs climb higher, staying just out of reach for us.

I beg Congress to stand up for hard-working families like mine and pass legislation to cap insulin costs.


Elise Oberdorfer-Douglas lives in Atlanta, GA with her husband, two children, Luiza and John.