恶（2013）

Vice S04E16

Part 2 May 7, 2021, 11:30 a.m.

And the way we use the animals is, number one,
我们使用动物就是要
to try to understand the disease,
先去了解疾病本身
but also, and maybe more importantly,
另一方面更重要的是
we're trying to find treatments.
努力找到疗法
The first mouse that we're looking at,
我们正在看的第一只老鼠
it has the gene in it that would cause the disease.
携带致病基因
But it hasn't had onset yet.
但尚未发病
So, you can see he's a little spunky.
所以它看起来活蹦乱跳的
So...
所以说
how far progressed is this mouse?
这只老鼠大概处于什么阶段呢
This one is probably about three-quarters
这只的病情大概到了
of the way through its disease progression.
四分之三的阶段
It doesn't have a normal gate
它的后肢
with its hind limbs anymore.
没有知觉
It starts to drag its toes a little bit.
爬起来有点拖脚尖
And ultimately, it won't be able to use its hind limbs at all.
最终它将完全不能使用后肢
A lot of our effort is to test therapeutics
我们大部分努力旨在检测疗法
to make this mouse basically have
是否能让这只老鼠
a better, longer life.
活得更好更久
We've tested a lot of drugs...
我们测试了大量药剂
probably somewhere on the order
大约有
of 300 different compounds.
300多种不同配方
We've had three show efficacy
目前其中有3种
up until now, and those are
有一定效果
our clinical trial candidates
这些就是我们的临床试验用药
that we're moving forward right now.
将进一部进行临床试验
Clinical trials are how drugs are tested
临床试验是药剂面世前
before they're released to the public.
的检测渠道。
And because there's currently no proven treatment for ALS,
鉴于目前尚无针对渐冻症的疗法
these trials have become the only chance
这些临床试验成为
for patients to access drugs that could help them.
患者们获取可能有效药剂的唯一希望
But for patients like Matt Bellina,
但是对于像马特蓓琳娜这样的患者来说
just getting into a trial
即便是接受临床试验
is a battle in itself.
也是一个挑战
You don't want me to push you?
你不想我来推你吗
You want to do it all on your own? That's good.
你想一个人玩儿吗好的
I really think of, like, the kids
我真的认为孩子们
and my wife as the victims of the disease because,
和我的妻子是疾病的受害者
you know, they're ones that
你知道的他们
have to pick up the slack and change their lives.
不得不收拾烂摊子改变生活
Buddy, you know I can't.
伙计你知道我做不到
"Please, Dad." See, this is, like,
求你了爸爸你看
the saddest thing in the world, isn't it?
这简直是世界上最难过的事了
He's like, "Please, Dad. Just come run with me."
他会说求你了爸爸跟我一起跑吧
And I'm, like...
而我呢却只能说
Sorry, dude. Aww.
抱歉哥们哇
You know? Doesn't that suck?
你懂吧感觉糟糕透了
I was flying for the Navy.
我曾在海军任飞行员
I was flying Prowlers.
我曾驾驶"徘徊者"电子战飞机
And then I started having symptoms
后来我开始出现症状
and the Navy didn't know what it was,
而海军并不知道是什么
so they... they grounded me.
于是他们不让我飞了
They said, "You can't fly anymore."
他们说你不能再飞了
What was, like, the plan of action for treatment?
那你的治疗计划呢
Did you look at experimental stuff?
你有没有考虑过实验性产品
I had already started about a year before that,
我大概一年前开始服用一些
taking stuff, 'cause I had a feeling that I had ALS.
因为我觉得自己可能已患上渐冻症
So, I had been taking a bunch of experimental stuff already.
所以我那时已经尝试了不少实验性产品
What about clinical trials?
临床试验呢
From the day I was diagnosed,
我被确诊时
I had already had too many years worth of tests
已经错过了时机
to make... I can't get into any
我不能加入任何实验
'cause I have two years since onset.
因为我发病已经两年了
So, I can't get into a clinical trial.
所以我不能参加临床试验
Oh, wow. So you were diagnosed, and you were, like...
哦天啦所以说你被确诊的时候你
Immediately outside of the exclusion criteria.
我当即被排除在外了
It's... it's miserable because, like,
这很痛苦因为比如
you want to be part of the solution too.
你也想为问题的解决做点什么
Like, you want to be providing data
比如你想向科学家
to the scientists, but you can't do it.
提供数据但是你不能这么做
It's ridiculous. Like, I...
太荒谬了比如我
I'm like, "I... I've been, you know, on and off
我就像是我已经你知道断断续续
"Risking my life for 10 years.
进行了10年的冒险了
Let me try some drugs that are gonna potentially help."
让我试试那些可能会有帮助的药品
I'll take the risk, and I'm... I'm not scared of it, you know?
我要冒这个险而且我我不害怕
For most rapidly fatal diseases,
对于大多数快速致命的疾病来说
the standard drug approval process
标准药物的批准过程
is a hotly-contested issue
是个竞争激烈的问题
with many terminally-ill patients
有许多绝症病人
willing to accept the risks
愿意接受
that come with an unapproved drug.
未经批准的药物所带来的风险
One of the most coveted trials
最令人关注的受审药物之一
is called NurOWN.
叫做NurOWN
It slowed down the progression
在接受全面治疗的病人中
of the disease in 92% of the patients
有百分之九十二因为该药的使用
who received the full treatment.
而减缓了疾病的进程
The BrainStorm trial at Mayo accepted 16 patients.
梅奥诊所的头脑风暴实验接收了16个病人
We had almost 1,000 patients on the waiting list.
我们的等候名单上有将近一千名病人
Like many ALS patients,
和许多渐冻症病人一样
I applied to this trial and didn't get in.
我申请加入这个实验项目但是没有成功
And push down. Hard, hard, hard, hard, hard, hard...
压下去使劲使劲
But Kevin Haas was one of the very few who did.
但是凯文哈斯是为数不多的受试者之一
When they called and said that I can have that spot,
当他们打电♥话♥来说我获得了参与资格
um, I just couldn't believe it, because I thought,
我简直不敢相信因为我觉得
"How many tens of thousands of people
有成千上万的人
are praying and hoping for the same chance?"
都在祈祷希望自己能够获得相同的机会
One of the important steps
头脑风暴实验中
in the BrainStorm trial was that
很重要的一步是
the cells come out of the bone marrow
将骨髓中产生出来的细胞
and then they're treated
以一种很安全的
in a way that makes them protective
方式来处理
for nerve cells.
使其分化成神经细胞
They're kind of enhanced stem cells.
它们有点像加强版的干细胞
You might feel a little pressure in your abdomen now, okay?
你现在可能觉得腹腔里有一点压力对吗
He'll have a spinal tap, and that allows us
他要进行脊髓抽液那样我们
to inject the stem cells
才能将干细胞注射到
into the fluid around his spinal cord.
脊髓附近的液体中
Sir, are you doing okay? Yes.
先生你还好吗还好
And when you have an injury anywhere in your body,
你身体上不论是哪里受了伤
those cells will move out of the bone marrow
这些细胞都会从骨髓中分化出来
and they go to the area that was injured
去到受伤的区域
and they aid the healing process.
帮助治愈
Now, we're taking these healing cells
现在我们将这些治疗细胞拿出来
and we're putting them into the nervous system.
将它们放到神经系统里
So, we're putting them into a place
也就是我们把它们放到一个
where they don't usually go.
它们不常去的地方
I don't know, it's kind of, like, surreal.
我不知道这有点像超现实主义
I remember sending my paperwork
我记得为了进入这个实验项目
to get into this trial.
我把我的文书寄过去
I don't feel like crying on camera today,
今天我不想在镜头前哭
so I think we should probably cut.
所以我们还是打住吧
Due to the limited scope of these trials,
由于这些实验的局限性
many ALS patients,
许多像维萨姆这样的
like Wissam Mejed,
渐冻症患者
are left with no other option
别无选择
than to go abroad to seek treatment.
只能去国外寻求治疗
Bureaucracy and... and all that is getting in the way right now,
官僚主义和所有类似的事现在正在阻碍实验
and the FDA is worried about safety.
FDA（食品药品管理局）担心安全问题
I mean, the side effect
我想说本来得了渐冻症
of ALS is death.
就是会死的