Insulin Was Meant to Be Free — So Why Are Kids Still Dying Without It?

There are a lot of myths about diabetes. That it’s caused by eating too much sugar. That it’s the result of laziness or weight gain. That it’s manageable, even trivial, if you just “watch what you eat.”

But when my little sister was five years old, none of those myths could explain why she was dying.

It started like the flu — fever, fatigue, too many naps on the couch. Then came the thirst. The bathroom trips every few minutes. The hollow look in her eyes. She grew thinner by the day, her bones showing through her baby cheeks.

It was 2020. The first year of the pandemic. Hospitals were overflowing. People were afraid to leave their homes. The air itself felt heavy with grief. Every cough was suspicion. Every trip outside felt like a risk. Doctors’ offices were booked solid, operating through phone calls and video visits when they could. My mother took my sister to every appointment she could get — drive-up clinics, urgent cares, pediatric offices — but no one could — or would — see the full picture.

“She’s probably fighting off a virus,” one doctor said. “Kids bounce back,” another assured. One even suggested she was faking it for attention. The assumption was that everything was COVID, even when it wasn’t. The truth was that everything else stopped mattering.

Days turned into weeks. I watched her lose strength by the hour. She couldn’t climb into her bed without help. Her skin went pale, her voice soft. Then one morning, she tried to stand and couldn’t. Her legs folded beneath her like paper. She hit the floor hard — her forehead striking the wood with a sound I’ll never forget. When she tried to lift herself, her arms wouldn’t respond. The bruise swelled until it was a fist-sized knot.

By then, our family had heard enough of doctor’s quick dismissals and refusal to find answers. My sister’s father loaded her into the car and drove two hours to another hospital, one in a different town, one that might finally take her symptoms seriously.

That drive saved her life.

When they finally checked her blood sugar, it was over 700 mg/dL — a number so dangerously high the nurse checked the meter twice, thinking it had malfunctioned. For reference: a healthy child’s blood sugar usually sits between 70 and 140. By the time you pass 300, the body begins to lose the ability to regulate itself. Past that, the pancreas can no longer keep up at all.

My sister’s number wasn’t a warning sign — it was a red siren. Acid was building in her blood. Her organs were beginning to fail. She was hours away from death.

They rushed her into emergency care, hooked her up to IVs, flooded her with fluids, insulin, oxygen. Her father stood there, masked and shaking, while alarms sounded and monitors flashed red. A few hours later, a helicopter came to take her to a better-equipped hospital — one of the few that still had open beds.

Pandemic rules meant she had to go alone. Her father wasn’t allowed to ride with her — no hugs, no comfort, no way to climb into that helicopter and pretend he wasn’t terrified. He had to stand there on the asphalt, helpless, watching strangers buckle her into a stretcher far too big for her small body.

But one of those strangers — an air transport nurse — knelt beside her and promised she wouldn’t be alone. She took my sister’s hand and said, “I’ll hold this the whole way. I won’t let go, I promise.”

And so my sister lifted into the sky with only that hand in hers, a single human anchor in a world that had suddenly become hospital lights and alarms and masks and fear.

When she arrived, they finally gave it a name: Type 1 diabetes.

Not the “too much sugar” kind. Not the kind you can prevent with diet or exercise. The autoimmune kind — the kind where your body quietly turns against itself and kills the very cells that keep you alive.

She was five years old. Her body had declared war on her.

The months after diagnosis were brutal. Every day was a calculation. Finger pricks, bruises, tears, exhaustion. Her skin turned into a roadmap of tiny pinholes and purpling marks. Each puncture hole was a reminder: stay alive.

Every night came with fear. What if her blood sugar drops while she’s asleep? What if the monitor misses it? What if the next vial of insulin costs more than we can pay?

Because diabetes doesn’t care about timing, or pandemics, or whether you can afford to survive. It just asks the same question every day: Can you keep going?

Because insulin, the thing that keeps her alive, costs more in this country than almost anywhere else in the world.

In 1921, the scientists who discovered insulin — Frederick Banting, Charles Best, and James Collip — sold the patent to the University of Toronto for one dollar each. They believed insulin belonged to everyone. That no one should profit from a cure that turns death into life.

A century later, the drug that was meant to be free costs hundreds of dollars a vial. The exact same formula. The same molecule. Just a different kind of greed.

Families go bankrupt trying to keep their children alive. Adults choose between insulin and rent. And the corporations who own the rights keep raising the price because they can — because the people who need it don’t have a choice.

If you live in a city like New York, you’ve seen the proof on telephone poles and bus stops: WE BUY DIABETIC TEST STRIPS. Handwritten signs. Flyers with tear-off numbers. Stickers slapped onto streetlamps.

Most people walk past them without thinking. But those signs exist because the supplies that keep diabetics alive are so expensive that people are forced to sell them — sometimes the very strips they need for themselves — just to cover rent, groceries, or next month’s insulin. Others buy the strips because the pharmacy price is too high, or their insurance only covers part of what they need, or they’ve been denied enough to stay safe.

Those signs are symptoms of a crisis no one wants to look at directly—a black-market economy built on desperation, on parents afraid their child will die in the night, on adults stretching vials and scraping needles and hoping no one finds out.

Nothing about that is choice. It’s survival in a system that treats life as a commodity and safety as something you have to hustle for on the street.

My sister is one of the “privileged” diabetics. Her insurance covers enough, for now. But that’s not safety — it’s a countdown. A constant anxiety that one policy change, one job loss, one refill denied could send her back into danger. Her life depends on paperwork, privilege, and luck.

But my sister survived, continues to survive, which not everyone does.

My best friend was close with a boy in high school — “M.” She absolutely adored him. He was one of those people who made the world lighter just by being in it. She says he had the kind of kindness that didn’t ask for attention. He noticed when people were left out. Remembered the little things. Made sure everyone laughed at least once.

In the days before Christmas, he started feeling sick. His mother kept taking him to the doctor because she could feel something was slipping out of her hands, but each visit ended the way my sister’s visits would end years later — with reassurances, with explanations that didn’t match what she was seeing, with a kind of calm certainty that everything was fine.

But everything wasn’t fine.

Around that same time, the family took their cat to the vet. The veterinarian paused while examining the animal, turned to “M” and gently asked, “Are you diabetic?” The veterinarian could smell it — the sweet scent the body gives off when blood sugar has climbed to a dangerous level.

They said no. Because they didn’t know. Because no one had ever checked.

And the question that still haunts his family is this: How did a veterinarian recognize what multiple doctors didn’t? How could someone treating a pet see what those treating their son could not?

Four days after Christmas, on December 29th, “M” died.

A diagnosis that should have come days earlier arrived only after it was too late to matter. One week of symptoms. One week of uncertainty. One week of missed chances.

There’s no way to make sense of that kind of loss. There’s just the before and the after — an entire life cleaved in two — and the small, stubborn rituals the living use to hold on to whoever was taken from them.

“M’s” Instagram account is still up. Every year on his birthday, my best friend goes back to the last photo he ever posted — an ordinary picture most people would scroll past without a second thought, the kind that only becomes sacred in hindsight. She writes to him there. Not just “happy birthday,” but long, tender messages about what’s changed, what hasn’t, how many people still miss him.

She says she does it because she’s afraid his mother still checks. Because she can’t bear the thought of that woman — who once packed his lunches, tied his shoes, held his hand in grocery stores — opening her son’s page and finding nothing. Silence, where a life used to be. She can’t stand the idea of a mother scrolling through old photos and wondering if the world has already forgotten the boy she loved.

So my friend leaves her words there every year — like flowers at a grave you can’t visit. A digital offering of love and remembrance. A way of saying: he mattered. He still matters.

And his family carries their grief in ways the rest of the world doesn’t see. His younger brother is older now — taller than “M” ever was. He’s passed the age his brother will be forever frozen in. He tries on clothes “M” never got to grow into. His voice has deepened. His face has changed. He walks into milestones his brother never reached.

That is its own kind of heartbreak—watching the living move forward while the dead remain exactly where they were left.

That’s what diabetes can do when it’s missed or misunderstood. It doesn’t always steal someone in a dramatic, cinematic moment. Sometimes it’s an oversight. A shrug. A test no one thought to order.

It steals futures quietly — in bedrooms, in waiting rooms, in families who never stop counting the years their child should have had.

Type 1 often arrives in childhood, slipping into a kid’s life disguised as ordinary things: extra thirst, extra naps, extra trips to the bathroom.

What they don’t say — what many people still don’t know — is that in Type 1 diabetes, a child’s immune system destroys the cells that make insulin. Completely. Permanently. It can happen fast, in a matter of weeks or days, long before anyone realizes their small body has been running without the one hormone that keeps them alive. That’s why children crash so suddenly. Why they can go from playing to unconscious in an afternoon.

It steals futures quietly — long before anyone knows what’s being taken.

Now my sister is thirteen.

She jokes about her bruises sometimes, says she should start connecting the dots. She peels the medical tape off her arms and shapes it into flowers on her notebook, trying to make something pretty out of what hurts. Her skin is a map of small wounds and quiet resilience.

What she doesn’t talk about as easily is the exhaustion. The way her body feels foreign some days, like it’s working against her. The way she has to think about her existence every hour of every day, while the people around her don’t have to think about theirs at all.

Middle school doesn’t make any of it easier. Kids toss out comments they think are harmless — jokes about sugar, death, insulin pumps. They laugh when her monitor beeps, call it a “ticking time bomb,” shout “duck and cover!” across the hallway. Casual, thoughtless cruelty delivered with the confidence of people who have never had to imagine their own body as a threat.

They don’t know that she almost died. That she still could.

They don’t see the nights she watched the numbers on her monitor climb or crash. They don’t know that one mistake — a broken sensor, a wrong dose, a cancellation of her insurance benefits— can be the difference between waking up and not.

To them, diabetes is a punchline. To her, it’s a constant calculation: how much insulin, how many carbs, how long until her blood sugar spikes, how long until she feels human again.

She’s growing up surrounded by people who will never understand what it means to live inside a body that’s always one malfunction away from disaster. And she’s doing it with grace that shouldn’t be required of anyone, let alone a thirteen-year-old.

She doesn’t want pity. She just wants people to stop making jokes about her reality, about the status of her timeline. Because for her, survival isn’t guaranteed. It’s work. Constant, invisible, and unforgiving work.

And the truth is, she’s been luckier than thousands of others.

Luckier than “M.”

Luckier than the children whose parents can’t afford refills, who cut their doses in half to make a vial last, who ration insulin the way other families ration food.

Luckier than the kids who die quietly in their bedrooms because they were told their illness was “manageable.” Because someone thought they’d be fine until morning.

Diabetes isn’t simple. It’s not sugar. It’s not lifestyle. It’s not a choice. It’s learning how to live around a disease that never sleeps.

There are headlines every November for Diabetes Awareness Month. Blue ribbons, hashtags, corporate campaigns that talk about “hope” and “research.” But hope doesn’t keep a child alive at 3 a.m. when her blood sugar crashes. Hope doesn’t pay for supplies, for continuous glucose monitors, for sensors and strips and emergency glucagon pens that can each cost more than rent.

What would awareness look like if it meant more than a month of marketing? If it meant early testing for every child who shows the signs my sister and “M” once did — thirst, fatigue, blurred vision, unexplained weight loss? If it meant making insulin as free as its inventors intended? If it meant seeing kids like them not as burdens, but as proof that their livelihood should never depend on privilege?

The hardest part of this story isn’t what happened — it’s knowing how many times it still happens.

“M’s” family will never see another birthday. And every week, somewhere in this country, another family learns what diabetic ketoacidosis means, the way mine did — through terror and timing.

Diabetic ketoacidosis (DKA) is what happens when a body has gone too long without insulin. When there is no insulin, the body can’t use sugar for energy, so it starts breaking down fat at a frantic pace, trying to survive. That process floods the bloodstream with acids called ketones — poison, essentially — until the blood turns toxic.

Kids in DKA breathe faster, trying to push the acid out of their lungs. Their breath smells sweet, like rotting fruit. Their stomachs hurt. They vomit. They get confused. Their hearts race. Their bodies shake with exhaustion. And then, piece by piece, the body shuts down—dehydration, swelling in the brain, coma, death.

DKA is not rare. It is not random. It is not inevitable. It is the direct result of a child’s body being in crisis long before anyone recognized it. More than half of children with new-onset Type 1 diabetes are diagnosed in DKA — already dangerously sick — because the early signs were dismissed as the flu, as stress, as growing pains, as “kids being kids.”

Families learn the word the hard way. In emergency rooms. In ICU waiting chairs. In the space between one heartbeat and the next, wondering if they caught it fast enough.

DKA doesn’t care how loved a child is. How responsible their parents are. How many times they were told “it’s nothing.” It arrives when insulin is gone. And for too many families, it arrives too late.

So this November, I’m thinking of my sister. Of “M.” Of every person still living in the gap between discovery and access, diagnosis and understanding. For the children whose bodies break before the world can catch up. For the parents counting doses, the teenagers hiding bruises, the families refreshing pharmacy portals that say “out of stock.”

Because awareness isn’t just knowing diabetes exists. It’s understanding what that means — that someone’s child is alive today because a stranger donated insulin from someone they lost. That every beep, every bruise, every blood test is a fight for one more day.

Awareness is not a ribbon or a hashtag. It’s a promise. A refusal to let the people who live with this be forgotten. It’s remembering that insulin was meant to be free. That survival shouldn’t depend on a paycheck. That behind every statistic is a family still holding its breath, listening for the sound of a monitor that might not go off in time.