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

翻译人员: suya f. 校对人员: Gentle Yang

It was October 6, 2012,

那天是 2012 年的 10 月 6 日，

and I would have killed for Wendy’s frosty.

当时我很想来杯 温蒂汉堡店的冰沙饮料。

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

我惦记那儿的冰沙快两天了，

but it always seemed just out of reach.

但好像总是吃不到。

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

要知道，原本看急诊 是“明天放学后，”

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

但变成“现在就要去看急诊”了。

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

后来在前往医院的车上，

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

我终于明白 我恐怕吃不到那杯冰沙了。

Because that frosty would have skyrocketed my blood sugar

因为它会让我的血糖指数飙升，

signaling the beginning of a journey

提醒我要得Ⅰ型糖尿病了。

with an illness known as type 1 diabetes.

The car seemed to hold an overwhelming silence that night,

那天晚上车里非常沉闷，

but the world outside was loud.

但车外依然喧闹。

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

外面的人似乎都照常生活着，

while my life seemed to be on pause

但我的人生仿佛停滞，

as I tried to understand my new reality.

我试着接受如今的实际状况。

I was hungry and upset and tired,

当时我饥肠辘辘精疲力倦，

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

显而易见只能瘫坐在车后座

and whining just a little bit.

发些牢骚。

I was only allowed one thing to eat.

当时我只能吃一样东西。

Green apple.

青苹果。

Not a frosty,

不是冰沙。

a green apple.

而是青苹果。

But honestly,

不过说实话，

as much as I would have killed for that frosty,

我非常想吃那家的冰沙，

that frosty probably would have killed me.

但它可能会要了我的命。

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

现在大家都不会因为 糖尿病的治疗费用很高而感到惊讶。

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

我的胰岛素泵 5000 美元，

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

用于胰岛素泵的输液器要 250 美元一个月。

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

而且有的保险报销范畴 甚至不包括这每 90天一付的

every 90 days

1500 美元的持续血糖监测系统，简称 CGM。

for a constant glucose monitoring system, or CGM.

On average,

平均下来，

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

Ⅰ型糖尿病每月需要三到六瓶胰岛素。

Each one of those vials costs around 250 dollars.

每瓶 250 美元左右，

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

这种性命攸关的药 一个月要花 750 至 1500 美元。

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

而生产这种药仅需 3.69 到 6.16 美元。

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

好在我的医保能报销大部分，

but I have a lingering fear

但我仍心怀不安。

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

与许多年轻糖尿病患者一样： 害怕 26 岁的到来，

Of aging off of my parents' insurance.

因为那时就不能再参与父母的医保。

I'm only 19,

虽然我现在只有 19 岁，

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

但我家一直在讨论我 26 岁的这个问题。

What are ways I can get insurance?

有什么办法能让我买到医保？

How will I be able to afford my insulin?

我怎么才能付得起胰岛素的钱？

How can I keep myself alive?

我要怎样才能让自己活下去？

I experienced that delicate system in which diabetics operate

我体会过糖尿病发病时 那一连串微妙脆弱的感觉，

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

因为那晚我把最后一瓶胰岛素摔碎了。

It was a Sunday night,

周末晚上，

and our usual pharmacy wasn't open.

我们那边的药店没开门，

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

所以我妈妈就开始去找 周围二十四小时营业的药店；

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

同时我爸爸试着联系下班后的医生办公室，

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

以求将胰岛素的处方发给某个

we were able to find.

我们能找到的药店。

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

那次我拿到了足够坚持到 下一次补给的胰岛素。

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

我父母能够拿出 300 美元 来支付一小瓶胰岛素。

But the unlucky ones,

但有些人却没那么幸运，

the diabetics that can't pay,

付不起钱治糖尿病，

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

他们不得不忧心自己能否付得起

their insulin every month.

每月胰岛素的花销。

Sometimes they have to go without paying.

有时他们不得不赊账，

Sometimes they have to go without their insulin.

有时他们不得不断药。

This is insulin rationing.

这就是如今的胰岛素配给。

It's exactly what it sounds like.

确实如它听起来的这样。

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

就是不吃饭，不吃药

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

就是用比身体须要的更少的药， 或者用药量不足或药性不稳定的药，

just because it's cheaper.

因为他们价格更便宜。

Between 2017 and 2019,

2017 至 2019 年，

14 type 1 diabetics were identified as dying

14 名Ⅰ型糖尿病患者被认定为

from diabetic ketoacidosis,

死于糖尿病酮症酸中毒，

a deadly complication of high blood sugar,

一种高血糖致命性并发症

also known as DKA,

也称为DKA，

due to insulin rationing.

就是由胰岛素配给所引起。

I want to take a moment for them.

此刻献给这 14 位患者：

Monique Moses.

莫妮克-摩西 （Monique Moses），

Shane Boyle.

肖恩-博伊尔 （Shane Boyle），

Antavia Worshman.

安塔维亚-沃什曼 （Antavia Worshman），

Jesse Lutgen.

杰西-卢特根 （Jesse Lutgen），

Allen Rivas.

艾伦-里瓦斯 （Allen Rivas），

Micha Fischer.

迈克尔-费舍尔 （Micha Fischer），

Meaghan Carter.

梅根-卡特 （Meaghan Carter），

Stephen Alford.

斯蒂芬-奥尔福德 （Stephen Alford），

Kayla Davis.

凯拉-戴维斯 （Kayla Davis），

Josh Wilkerson.

乔什-威尔克森 （Josh Wilkerson），

Jada Lewis.

贾达-刘易斯 （Jada-Lewis.），

Jesmiya Scherer.

杰斯米娅-舍勒 （Jesmiya Scherer），

Jeremy Crawford.

杰里米-克劳福德 （Jeremy Crawford），

And probably so many more.

或许还有更多。

But tonight,

但今晚，

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

我想讲述他们中的一个人的故事，

Alec Smith.

亚历克-史密斯（Alec Smith）。

When he turned 26,

他26岁时，

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

便不能再用父母的保险。

His job, however, didn't provide insurance,

而他自己的工作没有提供医保，

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

最便宜的保险也只有 7500 美元的赔付额，

he decided just to go uninsured.

他决定不买医保。

His insulin and supplies cost almost half of his salary.

胰岛素和其他用品 会花掉他近一半的工资，

So he resorted to rationing his insulin.

所以他说要自己配给胰岛素。

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

但失去父母医保后不到一个月，

Alec died from DKA.

亚力克就因糖尿病酮酸中毒去世。

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

因付不起胰岛素费用 他付出了生命的代价。

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

但奇怪的是，你知道胰岛素的价格。

Odds are, you know it is considered

奇怪的是，你知道 它是世界上最昂贵的液体之一。

one of the most expensive liquids in the world.

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

或者你可以把胰岛素的价格形象化。

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

每月 1000 美元的胰岛素，

that's a new phone.

相当于一部新手机。

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

每四年一个5000美元的胰岛素泵，

those are some really nice vacations.

相当于数次美好的旅行。

These numbers, while large, aren't foreign.

这些数额巨大但并不陌生。

They're bad, but not completely abstract.

让人难以接受但又不抽象。

On my arm is my CGM.

手臂上的是我的 CGM（连续血糖监测系统）

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

它救过我的次数我数也数不过来。

Knows my blood sugar every second of every day.

它清楚我每日每秒的血糖水平。

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

它知晓我需要什么， 即使我自己都不知道。

It has the most obnoxious beeping noise --

它哔哔的声音最让人讨厌

think: worse than a fire alarm --

—— 想象一下：比火警还吵 ——

for when my blood sugar is low.

会在我血糖低的时候响起。

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

每当它半夜响起时，

I would kill for it to have a snooze button.

我非常希望这东西能有个打盹按钮，

But it doesn't.

但它没有。

So I drag myself out of bed,

那我只能勉强起身忍受它的哔哔声，

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

去喝果汁把血糖升上去。

This device saves me

这个设备能救我的命，

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

因为我熟睡时是感觉不到的，

the shaking, the world feeling fuzzy,

比如低血糖发作，

the feeling of a body that's no longer mine

颤抖，眩晕，

when I'm asleep.

身体不再属于我的感觉。

And if I were to drop too low,

如果血糖降得太低，

I’d seize,

我会昏迷，

and I'd die.

甚至死亡。

Now there's a more subtle notification

血糖高了，

for when my blood sugar is high.

又会有更明显的症状。

An obnoxious vibrating.

讨厌的震动。

But if I were to spike too high,

但如果血糖激增，

it's DKA.

就是DKA了。

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

我手臂上的这个设备救了我，

it's considered a luxury.

但它很贵。

It's considered something that I could live without.

我的生活中离不开它。

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

为了把CGM装上去， 首先我要清洁皮肤，做好准备。

Then I stick an inserter to my skin

然后把植入器贴在皮肤上，

and press a button that releases a needle.

按下释放针头的按钮。

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

针头刺破皮肤， 后缩回，留下一根导线。

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

然后拿开植入器 并点击顶部的发射器。

It's a similar process for my pump.

泵的操作过程相似。

Clean, stick, stab.

清洁，贴住，刺入。

Two little puncture wounds,

两个小针孔，两个小伤疤。

two little scars.

My body is covered in those little scars.

我身上有些那样的小伤疤。

Each one representing the CGM or pump site

每一处都表示之前装有CGM或泵，

that had been stuck to my body.

因为要贴在身上。

Each one representing the needle poke that went with it

每一处都有针孔

and the wire or cannula that needle left behind.

和针留下的导线或插管。

Imagine years and years and years' worth of scars.

想象一下数年间留下的伤疤，

And the anticipation of all of the years to come.

对未来的期待。

Little pokes over and over and over again.

针孔一个又一个。

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

想象一下每次扎针弄错位置，

Imagine you hit a vein

比如扎到血管、

and now blood is dripping down your leg

血滴到腿上或者扎进肌肉会痛，

or you hit a muscle and it burns.

The needle doesn't retract and gets stuck.

这样针就收不回来，扎在里面。

The sticky doesn't stick.

CGM贴不住，

Now you have to do it all over again.

只好重新开始。

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

或者管子被门把手夹住，脱出来了，

Do it again.

也要重新开始。

The CGM loses signal,

CGM发不出信号，

do it again.

重新开始。

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

即使上述事情都没发生， 我还是需要重来。

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

泵每三天一次，CGM十天一次。

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

但不知为何， 九年来我都没有什么意外。

But I know just how much I hate

但我自己知道 我有多讨厌血糖忽高忽低的时候。

experiencing the highs and the lows.

But I know that I am one miscalculation,

我知道一次失算、

one CGM or pump failure,

一次CGM或泵故障、

one misstep,

一次失误、

one mistake from paying the ultimate price.

或一个错误都会付出沉重的代价。

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

我已经数次提及致死因素DKA，

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

但我想详细解释一下这个东西。

You are literally dealing with blood that is toxic.

实际上，这个状况内的血液是有毒的。

Blood that feels like it's on fire.

血液就像是在燃烧。

Blood that feels too heavy for your body.

对于身体来说太沉重。

Your body is turning against you, again.

你的身体又很不舒服。

Then organs shut down one by one,

然后器官一个一个停止运作，

usually the kidneys first,

通常肾脏第一个停止，

then the rest to follow.

其他器官也一个接一个停止。

A domino effect in slow motion.

动作减慢是最主要的影响。

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

假如你正分配到胰岛素。 那可能这些症状会有所推迟。

But you have one more thing to consider.

但你仍需要考虑另一个事情。

If you take that insulin now,

如果你现在用胰岛素，

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

明天吃饭时，胰岛素就会不够。

And that was the way Alec Smith died.

这也是亚力克·史密斯去世的原因。

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

以及其他不得不为 自己做决定的糖尿病患者。

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

现在我有特权支付 这些有形的价格。

But I still experience the smaller prices every day.

但我仍然每天都在体验低价。

I've talked about some of those physical scars,

我已经谈到了一些身体上的伤疤，

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

但我想谈谈那些看不见的伤疤。

Imagine running out of class,

想象一下跑出教室，

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

为了从冰箱里拿杯果汁 而错过了一部分讲座;

missing out on high-carb meals,

不吃高碳水化合物的食物，

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

因为我知道那会影响我的血糖;

delaying a workout

因为血糖不在正常范围内

because my blood sugar is not in range.

而推迟锻炼。

Even worse, stopping in the middle.

更糟糕的是，中途停下来。

Being in the heat skyrockets my blood sugar

在炎热的天气里， 我的血糖会飙升，

and swimming drops it.

游泳则会降低血糖。

Being sick makes it do weird things,

生病会让它做一些奇怪的事情，

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

当我生病时他们给我的 任何药物只会让情况更糟。

I'm spending so much mental energy doing math.

我花了太多精力做数学。

Calculating every second of every day,

计算每一天的每一秒，

From the literal prices to the prices that I pay.

从字面上的价格到我支付的价格。

Because I miss moments.

因为我错过了一些时刻。

So many moments.

太多的时刻。

Look ...

听着……

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

站在这里，试图描述我生活 的这些部分是很难的。

I experience these things on a daily basis,

我每天都在经历这些事情，

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

但我似乎找不到合适的词

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

来试着向你们所有人 描述它是什么样的。

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

我所发现的词语似乎并不能完全描述

of these situations.

这些情况的严重性。

What it feels like to be in them.

身在其中是什么感觉。

Situations that I got one singular day of education for.

我只上了一天的课。

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

一天要算一辈子管理一种慢性病。

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

现在我可以告诉你 那个冰淇淋的确切价格了。

Ninety-nine cents.

九十九美分。

Fifty-four grams of carbohydrates,

54克碳水化合物，

nine units of insulin

9单位胰岛素

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

当我的血糖飙升时， 我头疼得要命。

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

10年前，我无法理解这个价格。

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

这比我所能想到的要多得多。

But now I know that every time I eat food,

但现在我知道， 每次我吃东西的时候，

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

我都在为胰岛素付出 字面上和比喻上的代价。

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

这是九年前我愿意付出的代价。

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

但现在我比第一次更加理解了。

And some of these prices,

其中一些价格，

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

比如金融价格， 是我们不应该支付的

because we pay enough prices already.

因为我们已经付出了足够的代价。

Exactly 100 years ago this month,

就在100年前的这个月，

insulin was tested on a human for the first time.

胰岛素首次在人体上进行了测试。

And type 1 diabetes went from being a death sentence

1型糖尿病也从死刑判决变成了

to treatable.

可治疗的。

We took giant steps forward

我们在改善糖尿病患者 的生活质量方面

in improving the quality of life with diabetes.

迈出了巨大的一步。

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

胰岛素的发明者 弗雷德里克·班廷

以1美元的价格出售了这款药，

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

这样任何需要胰岛素的人 都可以获得它。

And yet,

然而，

diabetics are still losing their lives

糖尿病患者仍然在失去生命，

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

因为生活中所必需的的东西 有者天文数字的开销。

The idea of affordable insulin isn't revolutionary.

买得起胰岛素的想法 并不是革命性的。

It's 100 years old.

它有100年的历史了。

Every day, myself and millions of diabetics

每一天，我和数百万糖尿病患者

experience a roller coaster that is type 1 diabetes.

都经历着Ⅰ型糖尿病的过山车。

We worry enough about keeping ourselves alive.

我们为自己的生存担心得够多了。

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

我们不应该担心我们 是否能负担得起胰岛素。

Because I want to eat that frosty.

因为我想吃那个冰淇淋，

And have to worry about only one price.

而且只需要担心一个价格。

That headache?

头痛吗?

That's sometimes worth it.

有时这是值得的。

Thank you.

谢谢。

(Applause)

（掌声）