If a night goes by and I make it until morning without hearing an alarm sounding from my daughter’s room, I rise with a slight tinge of panic, wondering whether she is okay. If I’m lucky, a week will pass without me waking at 2, 3 or 4 a.m. But even on those nights when I do slip from the covers, I often return with emotions that keep me from returning to sleep.

My 10-year-old has Type 1 diabetes, an autoimmune disease that means she has to take insulin to stay alive. So when I wake up in the middle of the night, it’s for one of two scenarios: Either Lexi’s blood sugar has dropped too low and she needs a quick boost to get her back into a safe range where she won’t have a potentially lethal seizure, or her blood sugar is a bit too high and she needs an extra dose of insulin to keep from feeling sick (and to minimize the long-term damage to her body).

Managing Type 1 diabetes — for yourself or for someone else — means being in a constant state of vigilance. And yet we are one of the lucky families: We only have anxiety about Lexi’s health. We don’t have to ration insulin or pick up second jobs or sell off belongings to pay for it. Not yet, anyway.

The end of the year means health insurance deductibles reset, and many patients or families have to scramble to figure out how to pay the appalling list price for the medication again until they’ve spent enough out of pocket for insurance to pick up more of the cost. When Eli Lilly brought its Humalog brand of insulin to market in 1996, it was $21 a vial. Over the years, the price rose, most significantly between 2014 to 2018, bringing the list price to more than $300 for that same vial now.

Browsing the Twitter hashtag #insulin4all as the new year approached, I found diabetics (or their parents) talking about getting second and third jobs to pay for insulin or relying on the black market to make it to the next month. I learned about families borrowing and lending in a sort of trade agreement to keep their children alive. When this arrangement fails for lack of extra insulin, one parent tells me he finds himself at the pharmacy “in tears and screaming out of desperation because insurance refused to pay.” He’s usually told to go to the emergency room.

Companies capitalize on that dire need for insulin. They see our children’s diagnosis as a dollar sign. And when our children grow up, they’ll have to carry the burden of paying to live on their own. If they can. Otherwise, they will ration their insulin, as many already do. Recent studies have found that about a quarter of patients ration insulin because of the cost. T1International, a British nonprofit advocacy group, reported that five people in 2019 died because they did not have enough insulin.

Four months ago, Kevin Trager started Sensible Insulin, an advocacy group for affordable insulin. He has connected more than 80 insulin-dependent people with pharmacies in Ontario, Canada, that will ship insulin to the United States. The $300 vial of Humalog is sold for $30 in Canada. Trager told me about an email he received from a parent of a 19-year-old who was terrified of losing him because of insulin rationing. The parent had found the teen passed out for hours on the floor because his blood sugar was dangerously high, for a dangerously long time, because of a lack of insulin.

“Diabetics in America are hurting right now, and the fact that many have to choose between paying rent, buying groceries or filling their insulin prescription is pathetic,” said Trager, who was diagnosed with Type 1 diabetes in 2001. “America is the only country in the world that allows insulin manufacturers to charge whatever they want for a vial of this lifesaving medication. While other countries have policies that ensure all diabetics can afford the insulin they need to survive, our leaders have allowed this system to get out of control.”

Dealing with diabetes is excruciating enough without worrying about how to afford the treatment. I remember when Lexi was diagnosed three years ago, and she used syringes to inject insulin into her little body every time she ate. Now she uses an insulin pump, a podlike device attached to her skin by a needle that delivers doses constantly. Snack time at school? Off to the nurse’s office. Lunchtime? Same routine. Low blood sugar? Leave the classroom for a snack and return when the shaky feeling goes away. The disruption is real.

No matter how confident they may be, kids with Type 1 worry that all eyes are on them. As parents, of course, we see that worry and feel it for them, too. At first, I fielded questions from Lexi such as: “Why does this have to happen to me?” “What if people make fun of me?” “What if no one wants to play with me?” “Does this mean I’m different now?” “How long will I have to have shots?” “Will it go away when I’m 12?”

How do you explain “forever” to a 7-year-old when they can barely fathom what 10 minutes means?

Lexi is more used to the routine by now, but on the days when a pump site is snagged and ripped off her body or she’s feeling physically ill from high or low blood sugar, the questions come back. Sometimes directly. Or more heartbreaking, without words, but written in the undertones of her emotions. There’s an isolation to this disease that I pray not one more person has to know. But that’s not enough.

My daughter is lucky enough to be covered by Medicaid: Part of the reason I write on a freelance basis is to keep this insurance. I know exactly how much income I can afford to earn to keep us under the threshold for eligibility and maintain her coverage. Sometimes, I feel a false sense of privilege when I walk away from the pharmacy counter without a co-pay. I know there’s something deeply wrong with staying in a low-income career to keep my daughter alive.

The cost that comes with this decision sometimes consumes me, too. But that, at least, doesn’t wake me up in the middle of the night.

Not yet, anyway.

Read more: