Paula Johnson: His and hers ... healthcare

譯者: Marssi Draw 審譯者: Jessie Lee

Some of my most wonderful memories of childhood

我童年時最美好的回憶

are of spending time with my grandmother, Mamar,

有許多是和祖母共度，

in our four-family home in Brooklyn, New York.

在我們位於紐約布魯克林的四口之家。

Her apartment was an oasis.

她的公寓就像綠洲。

It was a place where I could sneak a cup of coffee,

是個我能偷偷喝杯咖啡的地方，

which was really warm milk with just a touch of caffeine.

其實是一杯摻有一點點咖啡因的熱牛奶。

She loved life.

她熱愛生命。

And although she worked in a factory,

雖然她在工廠上班，

she saved her pennies and she traveled to Europe.

但是她還是存到了錢去歐洲旅行。

And I remember poring over those pictures with her

我記得會和她一起端詳這些照片，

and then dancing with her to her favorite music.

接著和她聽著最喜愛的音樂共舞。

And then, when I was eight and she was 60,

然而在我 8 歲，她 60 歲時，

something changed.

事情有了變化。

She no longer worked or traveled.

她不再工作或旅行。

She no longer danced.

她不再跳舞。

There were no more coffee times.

再也沒有咖啡時光了。

My mother missed work and took her to doctors

我的母親請了假，帶她去看過很多醫生，

who couldn't make a diagnosis.

但是都診斷不出來。

And my father, who worked at night, would spend every afternoon with her,

而我在夜間工作的父親，每天下午都會陪她，

just to make sure she ate.

只為了確定她真的有吃飯。

Her care became all-consuming for our family.

照顧她成了家人們全心投入的事。

And by the time a diagnosis was made,

最後診斷出病因，

she was in a deep spiral.

她的情況急轉直下。

Now many of you will recognize her symptoms.

現在在座很多人認得出她的症狀。

My grandmother had depression.

我祖母得了憂鬱症，

A deep, life-altering depression,

一種會完全改變一生的憂鬱症，

from which she never recovered.

後來她沒能從此病中痊癒。

And back then, so little was known about depression.

當時我們對憂鬱症所知甚少。

But even today, 50 years later,

即使到 50 年後的今日，

there's still so much more to learn.

仍有許多需要學習。

Today, we know that women are 70 percent more likely

今天，我們知道女性在一生中

to experience depression over their lifetimes

較男性多 70% 的可能性

compared with men.

得到憂鬱症。

And even with this high prevalence,

即使如此普遍，

women are misdiagnosed between 30 and 50 percent of the time.

女性卻有 30% 至 50% 的可能性被誤診。

Now we know that women are more likely

現在我們知道相較於男性

to experience the symptoms of fatigue, sleep disturbance,

女性有較高的機率經歷疲勞、睡眠障礙、

pain and anxiety compared with men.

疼痛和焦慮。

And these symptoms are often overlooked

而這些是憂鬱症的症狀

as symptoms of depression.

卻常常被忽略。

And it isn't only depression in which these sex differences occur,

這些性別的差異 不只發生在憂鬱症，

but they occur across so many diseases.

也發生在許多疾病中。

So it's my grandmother's struggles

因此我祖母遭遇的困難

that have really led me on a lifelong quest.

讓我花一輩子的時間去探尋。

And today, I lead a center in which the mission

現在，我帶領一個研究中心，

is to discover why these sex differences occur

目的在找到這些 性別差異發生的原因，

and to use that knowledge

並運用那學問

to improve the health of women.

改善女性的健康。

Today, we know that every cell has a sex.

現今，我們知道每個細胞都有性別。

Now, that's a term coined by the Institute of Medicine.

這是由醫學研究院創造的名詞。

And what it means is that men and women are different

意謂著男人和女人的不同

down to the cellular and molecular levels.

是在細胞與分子的層面。

It means that we're different across all of our organs.

那代表我們的差異遍及所有的器官。

From our brains to our hearts, our lungs, our joints.

從我們的腦、心、肺，到關節。

Now, it was only 20 years ago

而距今僅 20 年前，

that we hardly had any data on women's health

我們沒有任何女性健康的資訊，

beyond our reproductive functions.

除了我們的生育機能。

But then in 1993,

但是在 1993 年時，

the NIH Revitalization Act was signed into law.

簽署了國家衛生研究院的新生法，

And what this law did was it mandated

這項法律主要在明文規定

that women and minorities be included in clinical trials

將女性和少數族群納入臨床試驗，

that were funded by the National Institutes of Health.

由國家衛生研究院提供資金。

And in many ways, the law has worked.

這項法律在許多方面起了效用。

Women are now routinely included in clinical studies,

現在女性已固定納入臨床研究，

and we've learned that there are major differences

我們得知兩性

in the ways that women and men

體驗疾病的方式

experience disease.

有很大的差異。

But remarkably,

然而驚人的是

what we have learned about these differences is often overlooked.

我們發現這些差異常被忽略。

So, we have to ask ourselves the question:

因此我們必須自問：

Why leave women's health to chance?

為什麼要讓女性的健康碰運氣？

And we're leaving it to chance in two ways.

我們用兩種方式碰運氣。

The first is that there is so much more to learn

首先，我們需要學習的甚多，

and we're not making the investment

但是我們卻沒投入

in fully understanding the extent of these sex differences.

在全盤了解這些性別差異的程度。

And the second is that we aren't taking what we have learned,

第二，我們未採納所學，

and routinely applying it in clinical care.

並例行地運用在臨床照顧中。

We are just not doing enough.

我們做得還是不夠。

So, I'm going to share with you three examples

因此我想和各位分享三個例子，

of where sex differences have impacted the health of women,

其中性別差異影響了女性的健康，

and where we need to do more.

而我們應該要做得更多。

Let's start with heart disease.

讓我們以心臟病開始。

It's the number one killer of women in the United States today.

心臟病是目前美國女性的頭號殺手。

This is the face of heart disease.

這是心臟病的面容。

Linda is a middle-aged woman,

琳達是中年婦女，

who had a stent placed in one of the arteries

她在其中一條通往心臟的動脈內

going to her heart.

植入支架。

When she had recurring symptoms she went back to her doctor.

當她有復發的症狀時，她回到醫院。

Her doctor did the gold standard test:

她的醫生做了黃金標準測試：

a cardiac catheterization.

心導管。

It showed no blockages.

但是沒顯示出阻塞。

Linda's symptoms continued.

琳達的症狀持續，

She had to stop working.

她必須停止工作。

And that's when she found us.

那時她找上我們。

When Linda came to us, we did another cardiac catheterization

當琳達向我們求助， 我們做了另一次心導管，

and this time, we found clues.

而這次我們找到了線索。

But we needed another test

但是我們需要另一項測試

to make the diagnosis.

來做出診斷。

So we did a test called an intracoronary ultrasound,

我們做了冠狀動脈內超音波，

where you use soundwaves to look at the artery

你可以運用音波檢視動脈，

from the inside out.

從裡到外。

And what we found

我們發現

was that Linda's disease didn't look like

琳達的病看起來不像

the typical male disease.

典型的男性疾病。

The typical male disease looks like this.

典型的男性疾病看起來像這樣。

There's a discrete blockage or stenosis.

有不連續的阻塞或狹窄。

Linda's disease, like the disease of so many women,

琳達的病就和許多女性的一樣，

looks like this.

看起來像這樣。

The plaque is laid down more evenly, more diffusely

血小板沿著動脈分布更平均、更擴散，

along the artery, and it's harder to see.

也更難看得出來。

So for Linda, and for so many women,

因此對琳達和許多女性來說，

the gold standard test wasn't gold.

這黃金標準測試並非黃金。

Now, Linda received the right treatment.

現在琳達獲得正確的治療。

She went back to her life and, fortunately, today

她恢復生活，而且幸運的是

she is doing well.

至今她的狀況依然良好。

But Linda was lucky.

但那是琳達幸運。

She found us, we found her disease.

她找到我們，我們找出她的疾病。

But for too many women, that's not the case.

但是對太多女性來說， 可不是那麼一回事。

We have the tools.

我們有工具。

We have the technology to make the diagnosis.

我們有科技能做出診斷。

But it's all too often that these sex diffferences

但是這些性別差異

are overlooked.

都太常被忽視了。

So what about treatment?

那治療呢？

A landmark study that was published two years ago

兩年前有一項重大的研究發表，

asked the very important question:

其中提出一個非常重要的問題：

What are the most effective treatments for heart disease in women?

對女性心臟病患者最有效的治療是什麼？

The authors looked at papers written over a 10-year period,

作者研究這十年來發表的論文，

and hundreds had to be thrown out.

有上百篇應該被扔掉。

And what they found out was that of those that were tossed out,

他們發現其中被丟棄的

65 percent were excluded

有 65% 不應列入考慮的原因是

because even though women were included in the studies,

雖然女性在這些研究中被列入考量，

the analysis didn't differentiate between women and men.

但是分析並未區分出 男性與女性的差別。

What a lost opportunity.

多可惜啊！

The money had been spent

花了這麼多錢，

and we didn't learn how women fared.

我們卻沒能學到女性遭遇的情況。

And these studies could not contribute one iota

這些研究可能無法 對那非常重要的問題

to the very, very important question,

做出任何一絲回應，

what are the most effective treatments

對女性心臟病患者

for heart disease in women?

最有效的治療是什麼？

I want to introduce you to Hortense, my godmother,

我想介紹我的教母荷頓斯，

Hung Wei, a relative of a colleague,

一位同事的親戚 ── 洪瑋（音譯），

and somebody you may recognize --

以及你可能知道的──

Dana, Christopher Reeve's wife.

黛娜，克里斯多福．李維的妻子。

All three women have something very important in common.

這三位女性有極重要的相似處。

All three were diagnosed with lung cancer,

她們都被診斷出肺癌，

the number one cancer killer of women

而肺癌是現今美國女性

in the United States today.

頭號癌症殺手。

All three were nonsmokers.

她們三位都不吸煙。

Sadly, Dana and Hung Wei died of their disease.

讓人難過的是，黛娜和洪瑋都因病去逝。

Today, what we know is that women who are nonsmokers are three times more likely

現在，我們知道不抽煙的女性

to be diagnosed with lung cancer than are men

被診斷罹患肺癌的機率

who are nonsmokers.

是不抽煙男性的三倍。

Now interestingly, when women are diagnosed with lung cancer,

有趣的是當女性被診斷出肺癌，

their survival tends to be better than that of men.

她們的存活率通常較男性高。

Now, here are some clues.

這裡有一些線索。

Our investigators have found that there are

我們的研究員發現

certain genes in the lung tumor cells of both women and men.

兩性的肺腫瘤細胞都有某種基因。

And these genes are activated

這些基因主要

mainly by estrogen.

被雌激素活化。

And when these genes are over-expressed,

這些基因過度表現時，

it's associated with improved survival

只會和改善年輕女性的

only in young women.

存活率有關。

Now this is a very early finding

這是很新的發現，

and we don't yet know whether it has relevance

我們還不知道它是否

to clinical care.

和臨床照護有關。

But it's findings like this that may provide hope

但是就是像這樣的發現能帶來希望，

and may provide an opportunity to save lives

並且能提供一個救命的機會，

of both women and men.

不論是男是女。

Now, let me share with you an example

讓我和大家分享關於

of when we do consider sex differences, it can drive the science.

當我們考慮性別差異時， 就能帶動科學的例子。

Several years ago a new lung cancer drug

幾年前，有一種新的肺癌藥

was being evaluated,

被拿來評估，

and when the authors looked at whose tumors shrank,

當研究者檢視看誰的腫瘤變小了，

they found that 82 percent were women.

他們發現其中 82% 都是女性。

This led them to ask the question: Well, why?

這讓他們想問：為什麼？

And what they found

他們發現

was that the genetic mutations that the drug targeted

藥物標靶的基因突變

were far more common in women.

在女性中更常見。

And what this has led to

這讓肺癌的治療方式

is a more personalized approach

更能符合個人需求，

to the treatment of lung cancer that also includes sex.

也能將性別列入考量。

This is what we can accomplish

這是我們能做到的，

when we don't leave women's health to chance.

我們讓女性的健康不是只能碰運氣。

We know that when you invest in research,

我們知道當你投資研究

you get results.

就會得到結果。

Take a look at the death rate from breast cancer over time.

看看歷年來乳癌死亡率的改變。

And now take a look at the death rates

再看看歷年來女性肺癌死亡率的改變。

from lung cancer in women over time.

Now let's look at the dollars invested in breast cancer --

看看投資在乳癌研究的金額

these are the dollars invested per death --

──這是對每一位死亡病患的投資金額──

and the dollars invested in lung cancer.

以及投資在肺癌的金額。

Now, it's clear that our investment in breast cancer

顯然我們在乳癌的投資

has produced results.

證明了這一點。

They may not be fast enough,

雖然不見得夠快，

but it has produced results.

但還是帶來成果。

We can do the same

我們也可以同樣投資

for lung cancer and for every other disease.

肺癌和每一種癌症。

So let's go back to depression.

讓我們回到憂鬱症。

Depression is the number one cause

憂鬱症是全球女性

of disability in women in the world today.

造成身心障礙最主要的因素。

Our investigators have found

我們的研究員發現

that there are differences in the brains

男性與女性的腦部

of women and men

in the areas that are connected with mood.

在與情緒相關的區塊有差異。

And when you put men and women

如果你把男性和女性

in a functional MRI scanner --

放入功能性磁振造影裝置

that's the kind of scanner that shows how the brain is functioning when it's activated --

──這種裝置能在腦部被活化時 讓你看出它如何運作──

so you put them in the scanner and you expose them to stress.

因此當你把他們放入裝置，對他們施加壓力，

You can actually see the difference.

就能明顯地看出差異。

And it's findings like this

就是像這樣的研究

that we believe hold some of the clues

讓我們相信掌握了些許線索，

for why we see these very significant sex differences

了解為什麼我們會看到 這些顯著的性別差異

in depression.

出現在憂鬱症中。

But even though we know

但是即使我們知道

that these differences occur,

這些差異會發生，

66 percent

有 66% 的動物腦部研究

of the brain research that begins in animals

is done in either male animals

不是針對雄性動物，

or animals in whom the sex is not identified.

就是針對未驗明性別的動物。

So, I think we have to ask again the question:

因此，我認為我們應該再次提問：

Why leave women's health to chance?

為什麼要讓女性的健康碰運氣？

And this is a question that haunts those of us

這個問題在科學與醫學界的我們心中

in science and medicine

徘徊不去，

who believe that we are on the verge of being able to dramatically improve

我們相信我們即將為女性的健康

帶來卓越的進展。

the health of women.

We know that every cell has a sex.

我們知道每個細胞都有性別。

We know that these differences are often overlooked.

我們知道這些差異常被忽略。

And therefore we know that women are not getting the full benefit

因此我們知道女性在現代科學與醫學中，

of modern science and medicine today.

未能完全受惠。

We have the tools

我們有工具，

but we lack the collective will and momentum.

卻缺乏集體意願和動力。

Women's health is an equal rights issue

女性健康是一項平權的議題，

as important as equal pay.

就和同工同酬一樣重要。

And it's an issue of the quality

而這項議題攸關

and the integrity of science and medicine.

科學和醫學的品質與廉正。

(Applause)

（掌聲）

So imagine the momentum we could achieve

想像我們為了改善女性健康

in advancing the health of women

能激發的動力，

if we considered whether these sex differences were present

只要我們能多考量，不管是 在精心設計的研究之初

at the very beginning of designing research.

呈現這些性別差異；

Or if we analyzed our data by sex.

還是我們用性別來分析資料。

So, people often ask me:

大家常問我：

What can I do?

我可以做什麼？

And here's what I suggest:

我建議你：

First, I suggest that you think about women's health

首先，我建議你把女性健康的重要性

in the same way

看得和其它你所重視、關心的事物

that you think and care about other causes that are important to you.

一樣重要。

And second, and equally as important,

第二點，同樣重要的是

that as a woman,

身為一名女性，

you have to ask your doctor

你應該要問你的醫生，

and the doctors who are caring for those who you love:

以及那些照顧你所愛的人的醫生：

Is this disease or treatment different in women?

這個疾病或治療方式 是否因女性而不同？

Now, this is a profound question because the answer is likely yes,

這是個深奧的問題， 因為答案很可能是肯定的，

but your doctor may not know the answer, at least not yet.

但是你的醫生可能不知道 是如此，至少還不知道。

But if you ask the question, your doctor will very likely

然而如果你問了這個問題， 你的醫生很可能

go looking for the answer.

會去找答案。

And this is so important,

而這很重要，

not only for ourselves,

不只是對我們自己，

but for all of those whom we love.

也是對所有我們所愛的人。

Whether it be a mother, a daughter, a sister,

不論是母親、女兒、姊妹、

a friend or a grandmother.

朋友，或是祖母。

It was my grandmother's suffering

是我祖母的苦痛

that inspired my work

激勵我努力

to improve the health of women.

改善女性健康。

That's her legacy.

這是她所留下來的東西。

Our legacy can be to improve the health of women

我們留給後人的東西 可以是改善女性健康，

for this generation

為這個世代

and for generations to come.

也為未來的世代。

Thank you.

謝謝！

(Applause)

（掌聲）