As nurses, my husband and I witnessed truly awful and devastating things treating patients on the frontlines of this pandemic. Hundreds of thousands of Americans have died, while the millions who survived, now faced with disability, are left to grapple with the harsh realities of long COVID-19.
Among those millions of people living with long-term health impacts is our son Carter.
Four days before the COVID-19 vaccine was available for kids under 12, my 11-year-old son Carter tested positive for COVID-19. He had the common symptoms for the first few days, but as those subsided, I began noticing new ones like extreme thirst and frequent urination. In my gut, I knew it was diabetes. And sure enough, a mother always knows: Twelve days after his COVID-positive test, Carter was officially diagnosed with Type 1 diabetes.
In less than a month, everything about our lives changed. We don’t have any family history of any type of diabetes, so Carter’s diagnosis came out of nowhere, and we were not prepared. Our days now revolve around his blood sugar levels. Mealtimes are planned around insulin doses, mornings and evenings have a new medicine routine. Even as nurses, my husband and I could have never anticipated the severity of impact this diagnosis would have on our family.
I hear fellow nurses say there are more kids coming into the hospital and leaving with a diabetes diagnosis. Many of the newly diagnosed diabetics often had a recent COVID-19 infection. When a recent CDC report found children under 18 infected with COVID-19 are 2.66 times more likely to develop diabetes, it only confirmed the trend I witnessed in my hospital.
Carter was prescribed two different kinds of insulin, Humalog and Basaglar. Only a couple of months into his treatment, our insurance decided it would no longer cover Humalog beginning in January of this year. We had just enough to last us through March. We cannot afford the out-of-pocket costs to keep Carter on the same kind of insulin, so we will need to switch him to a new kind of insulin before his body has even adapted to the current regimen.
I realize we are extremely lucky to have health insurance that keeps insulin costs manageable for our family. Since becoming part of the diabetes community, I’ve learned how rare it is to have sufficient insurance coverage and be able to afford insulin at all. As I read the heart-breaking posts from parents pleading for insulin donations in online communities, I think about how one unfortunate diagnosis can send a family to economic ruin through no fault of their own.
So, when the House passed the Affordable Insulin Now Act recently, I felt like Congress finally listened to the pleas of Americans with diabetes. The bill will cap insulin copays at $35 a month — reducing insulin costs by hundreds each year. In America, around 1 in 4 diabetics have rationed their insulin due to high costs. With nearly 60% of Americans under 17 having been infected with COVID-19, some of them may develop type 1 diabetes. It is more important than ever to do something about insulin prices.
By lowering the price of insulin and passing other federal prescription drug reforms, we can help existing diabetics and prevent newly diagnosed diabetics, especially kids, from being forced to ration life-saving medication.
I couldn’t imagine going through this emotional journey with the added stress of not being able to afford the one thing you need to keep your child alive. Type 1 diabetes is a lifelong condition; my son will never escape this. It’s not his fault he caught COVID-19. It’s not his fault that COVID-19 may have caused his diabetes. But he will be forever burdened by the price of insulin.
We are fortunate to be able to afford Carter’s insulin and supplies. But what about the families who aren’t so lucky? What happens to all of the kids who will eventually age off of their parent's insurance, and their plans barely cover insulin? We lose sight of the human cost when we ignore insulin price gouging. At the end of the day, we are putting a price on human life — on a child’s life.
I would do whatever I could to get my child what he needs. I would give up my house, I would give up everything to keep him alive. I don’t know any parent who wouldn’t do the same.
Our leaders in Congress must do everything they can, so people with diabetes and their caretakers aren’t left with such impossible choices. Now, it’s up to our representatives in the Senate to stand with parents like me and stop hiding behind the donations of pharmaceutical companies.
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