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  • Chris Anderson: So I guess what we're going to do is

    克里斯·安德森: 我們現在要做的就是

  • we're going to talk about your life,

    談談你的生活點滴,

  • and using some pictures that you shared with me.

    跟大家分享你給我看的照片。

  • And I think we should start right here with this one.

    我們就從這張開始。

  • Okay, now who is this?

    這位是誰?

  • Martine Rothblatt: This is me with our oldest son Eli.

    馬蒂娜·羅斯布拉特: 這是我跟我大兒子伊萊。

  • He was about age five.

    他那時大約五歲。

  • This is taken in Nigeria

    這張照片是在奈及利亞拍的

  • right after having taken the Washington, D.C. bar exam.

    就在考完華盛頓特區律師考試。

  • CA: Okay. But this doesn't really look like a Martine.

    克里斯:好的。 但這張照片看來不太像馬蒂娜。

  • MR: Right. That was myself as a male, the way I was brought up.

    馬蒂娜:是的。這是我還是 男性的時候,我是以男兒身出生長大。

  • Before I transitioned from male to female and Martin to Martine.

    在我從男性馬丁 變為女性馬蒂娜之前。

  • CA: You were brought up Martin Rothblatt.

    克里斯:你是以馬丁·羅斯布拉特 的身份長大。

  • MR: Correct.

    馬蒂娜:是的。

  • CA: And about a year after this picture, you married a beautiful woman.

    克里斯:大約在拍了這張照片一年後, 你娶了一位漂亮的女性。

  • Was this love at first sight? What happened there?

    是一見鍾情嗎? 那是甚麼樣的情形呢?

  • MR: It was love at the first sight.

    馬蒂娜:是一見鍾情沒錯。

  • I saw Bina at a discotheque in Los Angeles,

    我是在洛杉磯一家 迪斯可舞廳遇見碧娜,

  • and we later began living together,

    後來我們開始同居,

  • but the moment I saw her, I saw just an aura of energy around her.

    當我看見她那一刻, 我就看見她散發著能量。

  • I asked her to dance.

    我邀請她跳舞。

  • She said she saw an aura of energy around me.

    她說她看見活力四射的我。

  • I was a single male parent. She was a single female parent.

    我當時是單親爸爸, 她是單親媽媽。

  • We showed each other our kids' pictures,

    我們看了彼此小孩的照片,

  • and we've been happily married for a third of a century now.

    我們沈浸在幸福的婚姻 已達三分之一世紀。

  • (Applause)

    (掌聲)

  • CA: And at the time, you were kind of this hotshot entrepreneur,

    克里斯:當時你自己開創了公司,

  • working with satellites.

    經營人造衛星相關的行業。

  • I think you had two successful companies,

    你有兩個成功的企業,

  • and then you started addressing this problem

    然後你開始解決這個問題

  • of how could you use satellites to revolutionize radio.

    如何利用衛星 來革新廣播業。

  • Tell us about that.

    請為我們說明一下。

  • MR: Right. I always loved space technology,

    馬蒂娜: 我一直對太空科技很感興趣,

  • and satellites, to me, are sort of like the canoes that our ancestors

    衛星對我來說,就像我們祖先

  • first pushed out into the water.

    第一次推到水裡的獨木舟。

  • So it was exciting for me to be part of the navigation

    我很興奮的是 能夠參與

  • of the oceans of the sky,

    遨遊浩瀚星海,

  • and as I developed different types of satellite communication systems,

    我發展各式衛星通訊系統,

  • the main thing I did was to launch bigger and more powerful satellites,

    我做的事主要是 發射一個更大更強的衛星,

  • the consequence of which was that the receiving antennas

    如此一來 接收天線

  • could be smaller and smaller,

    可以非常的小,

  • and after going through direct television broadcasting,

    有了電視直播之後,

  • I had the idea that if we could make a more powerful satellite,

    我想如果能夠做一個更強大的衛星,

  • the receiving dish could be so small

    接收盤可以做的很小

  • that it would just be a section of a parabolic dish,

    它是拋物面天線反射器的一部分,

  • a flat little plate embedded into the roof of an automobile,

    一個可以裝設在車頂的小片,

  • and it would be possible to have nationwide satellite radio,

    可以做全國性衛星廣播,

  • and that's Sirius XM today.

    也就是今天的「天狼星衛星廣播」。

  • CA: Wow. So who here has used Sirius?

    克里斯: 哇。這裡有人用過天狼星嗎?

  • (Applause)

    (掌聲)

  • MR: Thank you for your monthly subscriptions.

    馬蒂娜:謝謝各位每月訂閱。

  • (Laughter)

    (笑聲)

  • CA: So that succeeded despite all predictions at the time.

    克里斯:接下來 儘管當時有各種猜測。

  • It was a huge commercial success,

    那是一個巨大的商業上的成功,

  • but soon after this, in the early 1990s,

    在那不久之後, 1990 年代初,

  • there was this big transition in your life and you became Martine.

    你的生活有很大的轉變 你成為馬蒂娜。

  • MR: Correct. CA: So tell me, how did that happen?

    馬蒂娜:是的。 克里斯:告訴我們,怎會這樣?

  • MR: It happened in consultation with Bina and our four beautiful children,

    馬蒂娜:我和碧娜以及 四個可愛的小孩商量過,

  • and I discussed with each of them

    我各自和他們討論

  • that I felt my soul was always female, and as a woman,

    我覺得在我的心靈裡,我是女性,

  • but I was afraid people would laugh at me if I expressed it,

    可是我擔心如果我講出來 會被別人嘲笑,

  • so I always kept it bottled up

    所以我把它藏在心裡

  • and just showed my male side.

    只表現男性的一面。

  • And each of them had a different take on this.

    每個人的反應不同。

  • Bina said, "I love your soul,

    碧娜說:「我愛你的靈魂」,

  • and whether the outside is Martin and Martine,

    不論外表是馬丁或是馬蒂娜,

  • it doesn't it matter to me, I love your soul."

    我不會再乎, 我愛你的靈魂。

  • My son said, "If you become a woman, will you still be my father?"

    我兒子說:你變成女人後, 仍然是我爸爸嗎?

  • And I said, "Yes, I'll always be your father,"

    我說:是,我永遠是你爸爸,

  • and I'm still his father today.

    我今天仍然是他的父親。

  • My youngest daughter did an absolutely brilliant five-year-old thing.

    我小女兒做了一個五歲小孩做的 非常棒的事。

  • She told people, "I love my dad and she loves me."

    她說:我愛我爸爸,她也愛我。

  • So she had no problem with a gender blending whatsoever.

    她沒有性別混淆上的問題。

  • CA: And a couple years after this, you published this book:

    克里斯:之後的一二年, 你出版這本書:

  • "The Apartheid of Sex."

    「性別上的種族隔離」

  • What was your thesis in this book?

    你對這本書有什麼論點呢?

  • MR: My thesis in this book is that there are seven billion people in the world,

    馬蒂娜:我的論點是, 世界上有七十億人口,

  • and actually, seven billion unique ways to express one's gender.

    就有七十億獨特的方展現性別。

  • And while people may have the genitals of a male or a female,

    人們有男性和女性的生殖器官,

  • the genitals don't determine your gender

    生殖器官不決定你的性別

  • or even really your sexual identity.

    甚至你真正的性別特性。

  • That's just a matter of anatomy

    這是一個解剖學上的問題

  • and reproductive tracts,

    一個生殖問題,

  • and people could choose whatever gender they want

    人們可以選擇他想要的性別

  • if they weren't forced by society into categories of either male or female

    如果他們不受社會 分類為男性或女性

  • the way South Africa used to force people into categories of black or white.

    就像南非過去將人 分為黑人或白人。

  • We know from anthropological science that race is fiction,

    我們從人類學的角度來看 種族是虛構的,

  • even though racism is very, very real,

    即使種族歧視確實存在,

  • and we now know from cultural studies

    從文化研究的角度,

  • that separate male or female genders is a constructed fiction.

    把人分為男性或女性 是想像編造出來的。

  • The reality is a gender fluidity

    事實上性別是

  • that crosses the entire continuum from male to female.

    從男性到女性跨越連續整體。

  • CA: You yourself don't always feel 100 percent female.

    克里斯:你自己不總是 感覺自己百分百是女性。

  • MR: Correct. I would say in some ways

    馬蒂娜:是的,在某些方面

  • I change my gender about as often as I change my hairstyle.

    我變換性別就像改變髮型一樣頻繁。

  • CA: (Laughs) Okay, now, this is your gorgeous daughter, Jenesis.

    克里斯:(笑),好吧, 這位是你美麗的女兒,吉納塞斯。

  • And I guess she was about this age when something pretty terrible happened.

    我想她大概在那個時候 經歷一個可怕的事情。

  • MR: Yes, she was finding herself unable to walk up the stairs

    馬蒂娜:是的,她發現自己 不能爬樓梯

  • in our house to her bedroom,

    到自己的臥室。

  • and after several months of doctors,

    看了幾個月的醫生之後,

  • she was diagnosed to have a rare, almost invariably fatal disease

    她被診斷出患了一種罕見, 致命的疾病

  • called pulmonary arterial hypertension.

    叫做肺動脈高壓。

  • CA: So how did you respond to that?

    克里斯:你怎麼看待這件事?

  • MR: Well, we first tried to get her to the best doctors we could.

    馬蒂娜:首先我們試著 幫她找最好的醫生。

  • We ended up at Children's National Medical Center in Washington, D.C.

    我們最後在華盛頓特區找到 國家兒童醫療中心。

  • The head of pediatric cardiology

    小兒心臟科主任

  • told us that he was going to refer her to get a lung transplant,

    告訴我們他會幫她 取得肺做移植,

  • but not to hold out any hope,

    但是沒有抱太大的希望,

  • because there are very few lungs available,

    因為可以移植的肺很少,

  • especially for children.

    特別是小孩子的。

  • He said that all people with this illness died,

    他說得這種病的人都去世了,

  • and if any of you have seen the film "Lorenzo's Oil,"

    如果你們有人看過 「羅倫佐的油」這部電影,

  • there's a scene when the protagonist

    有一幕是主角

  • kind of rolls down the stairway crying and bemoaning the fate of his son,

    從樓梯滚下來 為他兒子的命運哭泣和悲慟,

  • and that's exactly how we felt about Jenesis.

    這種感受 就是我對吉納塞斯的感受一樣。

  • CA: But you didn't accept that as the limit of what you could do.

    克里斯:但你不接受 這只是你能夠做的事。

  • You started trying to research and see if you could find a cure somehow.

    你開始嘗試研究 是否能夠找到一個治療方法。

  • MR: Correct. She was in the intensive care ward for weeks at a time,

    馬蒂娜:是的。 她在加護病房一住就好幾週,

  • and Bina and I would tag team to stay at the hospital

    碧娜和我分工合作 一個在醫院

  • while the other watched the rest of the kids,

    另一個就在家照顧其他小孩。

  • and when I was in the hospital and she was sleeping,

    當我在醫院而且她睡著之後,

  • I went to the hospital library.

    我到醫院的圖書館。

  • I read every article that I could find on pulmonary hypertension.

    我讀了所有我能找到的 肺動脈高壓的文章。

  • I had not taken any biology, even in college,

    我沒接觸過生物學, 甚至在大學也沒修過這個科目,

  • so I had to go from a biology textbook to a college-level textbook

    所以我從入門生物學開始 到大學等級的課本

  • and then medical textbook and the journal articles, back and forth,

    再到醫學教科書, 期刊的文章,反覆地研讀,

  • and eventually I knew enough to think that it might be possible

    最後我有足夠的知識 認為這是有可能

  • that somebody could find a cure.

    可以到到治療的方法。

  • So we started a nonprofit foundation.

    我們成立一個非營利的基金會。

  • I wrote a description asking people to submit grants

    我寫了一個說明書 讓人們提出申請

  • and we would pay for medical research.

    我們付醫療研究經費。

  • I became an expert on the condition -- doctors said to me, Martine,

    我成了這方面的專家,馬蒂娜, 醫生這麼對我說。

  • we really appreciate all the funding you've provided us,

    我們非常感激你提供資金,

  • but we are not going to be able to find a cure in time

    但是我們無法即時找到治療的方法

  • to save your daughter.

    來挽救你女兒的生命。

  • However, there is a medicine

    但是,有一種藥

  • that was developed at the Burroughs Wellcome Company

    是由寶威藥廠所研發的

  • that could halt the progression of the disease,

    可以讓控制病情惡化,

  • but Burroughs Wellcome has just been acquired by Glaxo Wellcome.

    寶威藥廠剛被葛蘭素惠康公司收購。

  • They made a decision not to develop

    他們決定不再開發

  • any medicines for rare and orphan diseases,

    罕見疾病的藥。

  • and maybe you could use your expertise in satellite communications

    或許你可以用你在衛星通訊的專長

  • to develop this cure for pulmonary hypertension.

    來開發肺動脈高壓的治療方法。

  • CA: So how on earth did you get access to this drug?

    克里斯:你究竟 是如何拿到這個藥呢?

  • MR: I went to Glaxo Wellcome

    馬蒂娜:我去了葛蘭素惠康公司

  • and after three times being rejected and having the door slammed in my face

    被他們摔門拒絶三次之後

  • because they weren't going to out-license the drug

    因為他們不願意將藥品的許可證

  • to a satellite communications expert,

    發給一個衛星通訊專家,

  • they weren't going to send the drug out to anybody at all,

    他們不願意將藥給任何人使用,

  • and they thought I didn't have the expertise,

    他們想我沒這方面的專業知識,

  • finally I was able to persuade a small team of people to work with me

    最後我說服一個小團隊和我合作

  • and develop enough credibility.

    建立相當的可信度。

  • I wore down their resistance,

    我減少他們抗拒的心理,

  • and they had no hope this drug would even work, by the way,

    他們對這個藥不抱任何希望,

  • and they tried to tell me, "You're just wasting your time.

    他們試圖告訴我, 「你是在浪費時間。

  • We're sorry about your daughter."

    我們為你的女兒感到遺憾。」

  • But finally, for 25,000 dollars

    最後,以二萬五千美元的價格

  • and agreement to pay 10 percent of any revenues we might ever get,

    以及支付我們營收百分之十

  • they agreed to give me worldwide rights to this drug.

    他們同意把這藥的全球使用權給我。

  • CA: And so you put this drug on the market in a really brilliant way,

    克里斯:你聰明地把藥推到市場,

  • by basically charging what it would take to make the economics work.

    只收取能維持運作的成本價。

  • MR: Oh yes, Chris, but this really wasn't a drug that I ended up --

    馬蒂娜:是的,克里斯 但這不是一種成藥,

  • after I wrote the check for 25,000,

    當我簽下二萬五千美金的支票後,

  • and I said, "Okay, where's the medicine for Jenesis?"

    我問說:「吉納塞斯的藥在那裡?」

  • they said, "Oh, Martine, there's no medicine for Jenesis.

    他們說:「還沒有藥可治療吉納塞斯。

  • This is just something we tried in rats."

    這藥只是在老鼠身上測試過。」

  • And they gave me, like, a little plastic Ziploc bag

    他們給我像這樣一個小的密封袋

  • of a small amount of powder.

    裡面裝有一些粉末。

  • They said, "Don't give it to any human,"

    他們說:「不要給人吃這藥,」

  • and they gave me a piece of paper which said it was a patent,

    他們給我一張紙, 說這是一個專利,

  • and from that, we had to figure out a way to make this medicine.

    從那時候開始,我們必須自己 找出方法去製作這個藥。

  • A hundred chemists in the U.S. at the top universities

    美國上百位頂尖大學的化學家

  • all swore that little patent could never be turned into a medicine.

    都認為這個小小專利 是無法變成成藥。

  • If it was turned into a medicine, it could never be delivered

    就算可以作成藥,也不能販售

  • because it had a half-life of only 45 minutes.

    因為這藥只有 45 分鐘的壽命。

  • CA: And yet, a year or two later, you were there with a medicine

    克里斯:即使如此,一兩年後, 你把它做成藥

  • that worked for Jenesis.

    可以治療吉娜塞斯。

  • MR: Chris, the astonishing thing is that this absolutely worthless

    馬蒂娜:克里斯,令人意想不到的是 這毫無價值

  • piece of powder

    粉末

  • that had the sparkle of a promise of hope for Jenesis

    給予治療吉娜塞斯一線希望之光

  • is not only keeping Jenesis and other people alive today,

    不但救了吉娜塞斯和其他人的生命,

  • but produces almost a billion and a half dollars a year in revenue.

    也創造了每年 將近十五億美金的營收。

  • (Applause)

    (掌聲)

  • CA: So here you go.

    克里斯:真是太棒了。

  • So you took this company public, right?

    你將這個公司上市,是嗎?

  • And made an absolute fortune.

    還賺了大錢。

  • And how much have you paid Glaxo, by the way, after that 25,000?

    在付了二萬五千美金之後, 你付了多少錢給葛蘭素?

  • MR: Yeah, well, every year we pay them 10 percent of 1.5 billion,

    馬蒂娜:每一年 我們付十五億的百分之十,

  • 150 million dollars, last year 100 million dollars.

    也就是一億五千萬, 去年是付一億元。

  • It's the best return on investment they ever received. (Laughter)

    這是他們最好的投資報酬(笑)

  • CA: And the best news of all, I guess,

    克里斯:我猜最好的消息

  • is this.

    是這個。

  • MR: Yes. Jenesis is an absolutely brilliant young lady.

    馬蒂娜:是的。吉娜塞斯是個 才華橫溢的女孩。

  • She's alive, healthy today at 30.

    她健康地活下來,今年 30 歲。

  • You see me, Bina and Jenesis there.

    這是我,碧娜和吉納塞斯。

  • The most amazing thing about Jenesis

    吉納塞斯最了不起的是:

  • is that while she could do anything with her life,

    她可以自己做任何事情,

  • and believe me, if you grew up your whole life with people

    相信我,如果在你成長的過程中

  • in your face saying that you've got a fatal disease,

    人們對你說你得了一種致命疾病,

  • I would probably run to Tahiti and just not want to run into anybody again.

    我可能會跑大溪地, 不想再遇到這些人。

  • But instead she chooses to work in United Therapeutics.

    但她卻選擇在聯合治療公司工作。

  • She says she wants to do all she can to help other people

    她說她要儘其所能幫助其他

  • with orphan diseases get medicines,

    患有罕見疾病的人取得藥物,

  • and today, she's our project leader for all telepresence activities,

    如今,她是 我們遠程出席活動專案的負責人,

  • where she helps digitally unite the entire company to work together

    協助整個公司進行數位聯合整合工作

  • to find cures for pulmonary hypertension.

    以取得治療肺高壓的方法。

  • CA: But not everyone who has this disease has been so fortunate.

    克里斯:但並不是 所有患有這種疾病的人都如此幸運。

  • There are still many people dying, and you are tackling that too. How?

    有許多人死於這種病,你也著手 處理這個問題,你是如何辦到的?

  • MR: Exactly, Chris. There's some 3,000 people a year in the United States alone,

    馬蒂娜:的確是,克里斯。 美國每年大約有三千人,

  • perhaps 10 times that number worldwide,

    全世界的人數大約有 10 倍之多,

  • who continue to die of this illness

    死於這種疾病

  • because the medicines slow down the progression

    因為這個藥減緩病情

  • but they don't halt it.

    但無法治療此病。

  • The only cure for pulmonary hypertension, pulmonary fibrosis,

    唯一可以治療肺高壓、肺纖維化、

  • cystic fibrosis, emphysema,

    囊腫性纖維化、肺氣腫、

  • COPD, what Leonard Nimoy just died of,

    慢性阻塞性肺病, 李納德·尼摩剛死於這種病,

  • is a lung transplant,

    只有肺部移植一途,

  • but sadly, there are only enough available lungs for 2,000 people

    但遺憾的是, 美國每年只可提供給二千個人

  • in the U.S. a year to get a lung transplant,

    進行肺部移植。

  • whereas nearly a half million people a year

    每年有將近五十萬人

  • die of end-stage lung failure.

    死於末期肺衰竭。

  • CA: So how can you address that?

    克里斯:你如何處理這個問題?

  • MR: So I conceptualize the possibility

    馬蒂娜:我將可能性概念化

  • that just like we keep cars and planes

    就像我們可以讓汽車,飛機

  • and buildings going forever

    和建築物永遠存在

  • with an unlimited supply of building parts and machine parts,

    無限制提供建築物 和機器所需的零件,

  • why can't we create an unlimited supply of transplantable organs

    我們為何不建立一個 無限量可供移植的器官

  • to keep people living indefinitely,

    讓人們一直生存下去,

  • and especially people with lung disease.

    特別是有肺部疾病的人。

  • So we've teamed up with the decoder of the human genome, Craig Venter,

    所以我們與人類基因解密者 克萊格·凡特,

  • and the company he founded

    以及和他一起成立

  • with Peter Diamandis, the founder of the X Prize,

    X-Prize 公司的 彼得·戴曼迪斯一起合作,

  • to genetically modify

    從基因方面去改造

  • the pig genome

    豬的基因組。

  • so that the pig's organs will not be rejected by the human body

    這樣人的身體不會 對豬的器官產生排斥作用,

  • and thereby to create an unlimited supply

    才可能提供無限量的