Why the Price of Insulin is a Danger to Diabetics | Brooke Bennett | TED

It was October 6, 2012,

and I would have killed for Wendy’s frosty.

I've been craving that frosty for about two days,

but it always seemed just out of reach.

See, after urgent care turned into "tomorrow after school,"

which then became "we need to go back to urgent care now."

And finally in the car on the way to the hospital,

I realized that, unfortunately, I would not be getting that frosty.

Because that frosty would have skyrocketed my blood sugar

signaling the beginning of a journey

with an illness known as type 1 diabetes.

The car seemed to hold an overwhelming silence that night,

but the world outside was loud.

Everyone outside seemed to be going on with their everyday lives,

while my life seemed to be on pause

as I tried to understand my new reality.

I was hungry and upset and tired,

and I made that well known by sprawling out in that back seat

and whining just a little bit.

I was only allowed one thing to eat.

Green apple.

Not a frosty,

a green apple.

But honestly,

as much as I would have killed for that frosty,

that frosty probably would have killed me.

Now, I'm sure you won't be shocked to find out that diabetes is expensive.

There's my 5,000-dollar insulin pump,

the 250 dollars a month for infusion sites for that insulin pump.

And some insurances won't even cover the 1,500 dollars

every 90 days

for a constant glucose monitoring system, or CGM.

On average,

type 1 diabetics need three to six vials of insulin a month.

Each one of those vials costs around 250 dollars.

That's 750 to 1,500 dollars a month for a drug that is vital for life.

A drug that costs only 3.69 to 6.16 dollars to produce.

I'm fortunate enough to have insurance that covers most of these expenses,

but I have a lingering fear

that's shared by most young diabetics: of turning 26.

Of aging off of my parents' insurance.

I'm only 19,

and yet my 26th birthday has been an ongoing conversation in my house.

What are ways I can get insurance?

How will I be able to afford my insulin?

How can I keep myself alive?

I experienced that delicate system in which diabetics operate

on the night I dropped and shattered my last vial of insulin.

It was a Sunday night,

and our usual pharmacy wasn't open.

So my mom began to search for a 24-hour pharmacy near us

while my dad attempted to get a hold of my doctor's office after hours

in order to get my insulin prescription sent over to whatever pharmacy

we were able to find.

I was able to get enough insulin to last me to my next refill.

My parents had the money to pay the 300 dollars for that tiny vial.

But the unlucky ones,

the diabetics that can't pay,

they have to worry about whether or not they will be able to afford

their insulin every month.

Sometimes they have to go without paying.

Sometimes they have to go without their insulin.

This is insulin rationing.

It's exactly what it sounds like.

It's skipping meals, it's skipping doses,

it's taking less than you need or using a more unstable type of insulin

just because it's cheaper.

Between 2017 and 2019,

14 type 1 diabetics were identified as dying

from diabetic ketoacidosis,

a deadly complication of high blood sugar,

also known as DKA,

due to insulin rationing.

I want to take a moment for them.

Monique Moses.

Shane Boyle.

Antavia Worshman.

Jesse Lutgen.

Allen Rivas.

Micha Fischer.

Meaghan Carter.

Stephen Alford.

Kayla Davis.

Josh Wilkerson.

Jada Lewis.

Jesmiya Scherer.

Jeremy Crawford.

And probably so many more.

But tonight,

I want to tell you the story of just one of them.

Alec Smith.

When he turned 26,

he could no longer be covered by his parents' insurance.

His job, however, didn't provide insurance,

and with the cheapest insurance plan having a 7,500-dollar deductible,

he decided just to go uninsured.

His insulin and supplies cost almost half of his salary.

So he resorted to rationing his insulin.

Less than one month after going off of his parents' insurance,

Alec died from DKA.

He instead paid for the price of insulin with his literal life.

But odds are, you know about the price of insulin.

Odds are, you know it is considered

one of the most expensive liquids in the world.

The price of insulin is something you can, at the very least, conceptualize.

1,000 dollars a month's worth of insulin,

that's a new phone.

5,000 dollars every four years for an insulin pump,

those are some really nice vacations.

These numbers, while large, aren't foreign.

They're bad, but not completely abstract.

On my arm is my CGM.

It has saved my life more times than I can count.

Knows my blood sugar every second of every day.

And knows what I need, even when I don't.

It has the most obnoxious beeping noise --

think: worse than a fire alarm --

for when my blood sugar is low.

And when that alarm goes off in the middle of the night,

I would kill for it to have a snooze button.

But it doesn't.

So I drag myself out of bed,

drink juice and deal with that beeping until my blood sugar comes up.

This device saves me

because I can't detect the signs of low blood sugar,

the shaking, the world feeling fuzzy,

the feeling of a body that's no longer mine

when I'm asleep.

And if I were to drop too low,

I’d seize,

and I'd die.

Now there's a more subtle notification

for when my blood sugar is high.

An obnoxious vibrating.

But if I were to spike too high,

it's DKA.

And this device on my arm that's saving my life,

it's considered a luxury.

It's considered something that I could live without.

To put my CGM on, I first clean and prep my skin.

Then I stick an inserter to my skin

and press a button that releases a needle.

That needle punctures the skin and retracts, leaving a wire behind.

Then I remove the inserter and click a transmitter in on top.

It's a similar process for my pump.

Clean, stick, stab.

Two little puncture wounds,

two little scars.

My body is covered in those little scars.

Each one representing the CGM or pump site

that had been stuck to my body.

Each one representing the needle poke that went with it

and the wire or cannula that needle left behind.

Imagine years and years and years' worth of scars.

And the anticipation of all of the years to come.

Little pokes over and over and over again.

Now imagine those pokes don't go the way they're supposed to every time.

Imagine you hit a vein

and now blood is dripping down your leg

or you hit a muscle and it burns.

The needle doesn't retract and gets stuck.

The sticky doesn't stick.

Now you have to do it all over again.

Or the tubing is caught on a door handle ripping itself out.

Do it again.

The CGM loses signal,

do it again.

Even if those things don't happen, I still have to do it again.

Every three days for my pump site and every 10 for my CGM.

Somehow I've managed to go nine years without any major incidents.

But I know just how much I hate

experiencing the highs and the lows.

But I know that I am one miscalculation,

one CGM or pump failure,

one misstep,

one mistake from paying the ultimate price.

I've mentioned DKA a few times as a deadly consequence,

but I want to walk you through what that looks like.

You are literally dealing with blood that is toxic.

Blood that feels like it's on fire.

Blood that feels too heavy for your body.

Your body is turning against you, again.

Then organs shut down one by one,

usually the kidneys first,

then the rest to follow.

A domino effect in slow motion.

If you were rationing insulin. maybe you could delay this.

But you have one more thing to consider.

If you take that insulin now,

you won't have enough to take when you eat tomorrow.

And that was the way Alec Smith died.

And every other diabetic who's had to make that decision for themselves.

Now I have the privilege to pay most of these tangible prices.

But I still experience the smaller prices every day.

I've talked about some of those physical scars,

but I want to talk about the ones that aren't visible.

Imagine running out of class,

missing part of a lecture to grab a juice from the fridge;

missing out on high-carb meals,

because I just know that’ll mess with my blood sugar;

delaying a workout

because my blood sugar is not in range.

Even worse, stopping in the middle.

Being in the heat skyrockets my blood sugar

and swimming drops it.

Being sick makes it do weird things,

and any medication they put me on when I'm sick only makes it worse.

I'm spending so much mental energy doing math.

Calculating every second of every day,

From the literal prices to the prices that I pay.

Because I miss moments.

So many moments.

Look ...

Standing here and trying to describe these parts of my life is hard.

I experience these things on a daily basis,

and yet I can't seem to find the right words

to try and describe to all of you what it's like.

The words I do seem to find don't fully depict the gravity

of these situations.

What it feels like to be in them.

Situations that I got one singular day of education for.

One day to account for a lifetime of managing a chronic illness.

Now I can tell you the exact cost of that frosty.

Ninety-nine cents.

Fifty-four grams of carbohydrates,

nine units of insulin

and a heck of a headache when my blood sugar spikes.

It was a price I didn’t understand 10 years ago.

It was so much more than I could have ever guessed.

But now I know that every time I eat food,

I am paying both the literal and metaphorical prices of insulin.

It was a price I was willing to pay nine years ago.

But now I get it so much more intimately than I did the first time.

And some of these prices,

like the financial ones, are ones we shouldn't have to pay

because we pay enough prices already.

Exactly 100 years ago this month,

insulin was tested on a human for the first time.

And type 1 diabetes went from being a death sentence

to treatable.

We took giant steps forward

in improving the quality of life with diabetes.

Frederick Banting, the creator of insulin, sold the patent for just one dollar,

so that anyone who needed insulin could have access to it.

And yet,

diabetics are still losing their lives

to the astronomical cost of something that we can't live without.

The idea of affordable insulin isn't revolutionary.

It's 100 years old.

Every day, myself and millions of diabetics

experience a roller coaster that is type 1 diabetes.

We worry enough about keeping ourselves alive.

We shouldn't have to worry about whether or not we can afford our insulin.

Because I want to eat that frosty.

And have to worry about only one price.

That headache?

That's sometimes worth it.

Thank you.

(Applause)