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My daughter, my wife, our robot, and the quest for immortality

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    Chris Anderson: So I guess
    what we're going to do is
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    we're going to talk about your life,
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    and using some pictures
    that you shared with me.
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    And I think we should start
    right here with this one.
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    Okay, now who is this?
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    Martine Rothblatt: This is me
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    with our oldest son Eli.
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    He was about age five.
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    This is taken in Nigeria
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    right after having taken
    the Washington, DC bar exam.
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    CA: Okay. But this doesn't
    really look like a Martine.
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    MR: Right. That was myself as a male,
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    the way I was brought up,
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    before I transitioned
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    from male to female and Martin to Martine.
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    CA: You were brought up Martin Rothblatt.
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    MR: Correct.
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    CA: And about a year after this picture,
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    you married a beautiful woman.
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    Was this love at first sight?
    What happened there?
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    MR: It was love at the first sight.
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    I saw Bina at a discotheque
    in Los Angeles,
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    and we later began living together,
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    but the moment I saw her,
    I saw just an aura of energy around her.
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    I asked her to dance.
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    She said she saw an aura
    of energy around me.
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    I was a single male parent.
    She was a single female parent.
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    We showed each other
    our kids' pictures,
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    and we've been happily married
    for a third of a century now.
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    (Applause)
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    CA: And at the time, you were
    kind of this hotshot entrepreneur,
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    working with satellites.
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    I think you had two successful companies,
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    and then you started
    addressing this problem
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    of how could you use satellites
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    to revolutionize radio.
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    Tell us about that.
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    MR: Right. I always
    loved space technology,
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    and satellites, to me, are sort of
    like the canoes that our ancestors
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    first pushed out into the water.
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    So it was exciting for me
    to be part of the navigation
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    of the oceans of the sky,
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    and as I developed different types
    of satellite communication systems,
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    the main thing I did was to launch
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    bigger and more powerful satellites,
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    the consequence was that
    the receiving antennas
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    could be smaller and smaller,
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    and after going through
    direct television broadcasting,
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    I had the idea that if we could make
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    a more powerful satellite,
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    the receiving dish could be so small
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    that it would just be a section
    of a parabolic dish,
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    a flap of a plate embedded
    into the roof of an automobile,
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    and it would be possible to have
    nationwide satellite radio,
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    and that's SiriusXM today.
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    CA: Wow. So who here has used Sirius?
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    (Applause)
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    MR: Thank you for
    your monthly subscriptions.
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    (Laughter)
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    CA: So that succeeded despite
    all predictions at the time.
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    It was a huge commercial success,
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    but soon after this, in the early 1990s,
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    there was this big transition in your life
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    and you became Martine.
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    MR: Correct.
    CA: So tell me, how did that happen?
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    MR: It happened in consultation with Bina
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    and our four beautiful children,
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    and I discussed with each of them
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    that I felt my soul was always female,
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    and as a woman,
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    but I was afraid people would laugh at me
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    if I expressed it,
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    so I always kept it bottled up
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    and just showed my male side.
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    And each of them
    had a different take on this.
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    Bina said that I love your soul
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    and whether the outside
    is Martin and Martine,
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    it doesn't it matter to me,
    I love your soul.
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    My son said, if you become a woman,
    will you still be my father?
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    And I said yes,
    I'll always be your father,
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    and I'm still his father today.
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    My youngest daughter did an absolutely
    brilliant five-year old thing.
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    She told people, "I love my dad
    and she loves me."
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    So she had no problem
    with a gender blending whatsoever.
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    CA: And a couple years after this,
    you published this book:
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    The Apartheid of Sex.
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    What was your thesis in this book?
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    MR: My thesis in this book is that there
    are seven billion people in the world,
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    and actually, seven billion unique ways
    to express one's gender.
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    And while people may have
    the genitals of a male or a female,
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    the genitals don't determine your gender
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    or even really your sexual identity.
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    That's just a matter of anatomy
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    and reproductive tracts,
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    and people could choose
    whatever gender they want
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    if they weren't forced by society
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    into categories of either male or female
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    the way South Africa used to force people
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    into categories of black or white.
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    We know from anthropological science
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    that race is fiction,
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    even though racism is very, very real,
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    and we now know from cultural studies
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    that separate male or female genders
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    is a constructed fiction.
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    The reality is a gender fluidity
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    that crosses the entire continuum
    from male to female.
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    CA: You yourself don't always
    feel 100 percent female.
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    MR: Correct. I would say in some ways
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    I change my gender about as often
    as I change my hairstyle.
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    CA: (Laughs) Okay, now, this is
    your gorgeous daughter, Genesis.
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    And I guess she was about this age
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    when something pretty terrible happened.
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    MR: Yes, she was finding herself
    unable to walk up the stairs
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    in our house to her bedroom,
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    and after several months of doctors,
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    she was diagnosed to have a rare,
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    almost invariably fatal disease
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    called pulmonary arterial hypertension.
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    CA: So how did you respond to that?
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    MR: Well, we first tried to get her
    to the best doctors we could.
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    We ended up at Children's
    National Medical Center in Washington, DC.
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    The head of pediatric cardiology
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    told us that he was going to refer her
    to get a lung transplant,
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    but not to hold out any hope,
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    because there are
    very few lungs available,
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    especially for children.
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    He said that all people
    with this illness die,
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    and if any of you have seen
    the film "Lorenzo's Oil,"
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    there's a scene when the protagonist
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    kind of rolls down the stairway
    crying and bemoaning the fate of his son,
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    and that's exactly
    how we felt about Genesis.
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    CA: But you didn't accept that
    as the limit of what you could do.
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    You started trying to research
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    and see if you could find a cure somehow.
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    MR: Correct. She was in intensive
    care ward for weeks at a time,
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    and Bina and I would tag team
    to stay at the hospital
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    while the other watched
    the rest of the kids,
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    and when I was in the hospital
    and she was sleeping,
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    I went to the hospital library.
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    I read every article that I could find
    on pulmonary hypertension.
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    I had not taken any biology,
    even in college,
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    so I had to go from a biology textbook
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    to a college-level textbook
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    and then medical textbook
    and the journal articles, back and forth,
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    and eventually I knew enough to think
    that it might be possible
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    that somebody could find a cure.
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    So we started a nonprofit foundation.
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    I wrote a description
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    asking people to submit grants
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    and we would pay for medical research.
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    I became an expert on the condition.
    Doctors said to me, Martine,
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    we really appreciate all the funding
    you've provided us,
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    but we are not going to be able
    to find a cure in time
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    to save your daughter.
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    However, there is a medicine
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    that was developed at the
    Borroughs Wellcome Trust Company
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    that could halt the progression
    of the disease,
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    but Borroughs Wellcome has just
    been acquired by Glaxo Wellcome.
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    They made a decision not to develop
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    any medicines for rare
    and orphan diseases,
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    and maybe you could use your expertise
    in satellite communications
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    to develop this cure
    for pulmonary hypertension.
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    CA: So how on earth did you get
    access to this drug?
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    MR: I went to Glaxo Wellcome
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    and after three times being rejected
    and having the door slammed in my face
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    because they weren't going
    to out-license the drug
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    to a satellite communications expert,
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    they weren't going to send the drug
    out to anybody at all,
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    and they thought
    I didn't have the expertise,
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    finally I was able to persuade
    a small team of people to work with me
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    and develop enough credibility.
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    I wore down their resistance,
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    and they had no hope this drug
    would even work, by the way,
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    and they tried to tell me,
    "You're just wasting your time.
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    We're sorry about your daughter."
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    But finally, for 25,000 dollars
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    and agreement to pay 10 percent
    of any revenues we might ever get,
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    they agreed to give me
    worldwide rights to this drug.
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    CA: And so you put this drug on the market
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    in a really brilliant way,
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    by basically charging what it would take
    to make the economics work.
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    MR: Oh yes, Chris, but this really wasn't
    a drug that I ended up,
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    after I wrote the check for 25,000,
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    and I said, "Okay, where's
    the medicine for Genesis?"
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    they said, "Oh, Martine,
    there's no medicine for Genesis.
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    This is just something we tried in rats."
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    And they gave me, like,
    a little plastic Ziploc bag
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    of a small amount of powder.
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    They said, "Don't give it to any human,"
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    and they gave me a piece of paper
    which said it was a patent,
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    and from that, we had to figure out
    a way to make this medicine.
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    A hundred chemists in the U.S.
    at the top universities
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    all swore that little patent
    could never be turned into a medicine.
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    If it was turned into a medicine,
    it could never be delivered
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    because it had a half life
    of only 45 minutes.
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    CA: And yet, a year or two later,
    you were there with the medicine
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    that worked for Genesis.
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    MR: Chris, the astonishing thing
    is that this absolutely worthless
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    piece of powder
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    that had the sparkle of a promise
    of hope for Genesis
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    is not only keeping Genesis
    and other people alive today,
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    but produces almost a billion
    and a half dollars a year in revenue.
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    (Applause)
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    CA: So here you go.
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    So you took this company public, right?
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    And made an absolute fortune.
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    And how much have you paid Glaxo,
    by the way, after that 25,000?
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    MR: Yeah, well every year we pay them
    10 percent of 1.5 billion,,
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    150 million dollars,
    last year a hundred million dollars.
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    The best return on an investment
    they ever received.
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    CA: And the best news of all, I guess,
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    is this.
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    Mr: Yes. Genesis is an absolutely
    brilliant young lady.
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    She's alive, healthy today at 30.
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    You see me, Bina, and Genesis there.
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    She's, the most amazing
    thing about Genesis
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    is that while she could do
    anything with her life,
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    and believe me, if you grew up
    your whole life with people
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    in your face saying
    that you've got a fatal disease,
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    I would probably run to Tahiti and just
    not want to run into anybody again.
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    But instead she chooses to work
    in United Therapeutics.
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    She says she wants to do all she can
    to help other people
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    with orphan diseases get medicines,
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    and today, she's our project leader
    for all telepresence activities,
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    where she helps digitally unite
    the entire company to work together
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    to find cures for pulmonary hypertension.
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    CA: But not everyone who has this disease
    has been so fortunate.
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    There are still many people dying,
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    and you are tackling that too. How?
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    MR: Exactly, Chris. There's some 3,000
    people a year in the United States alone,
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    perhaps ten times that number worldwide,
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    who continue to die of this illness
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    because the medicines
    slow down the progression
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    but they don't halt it.
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    The only cure for pulmonary hypertension,
    pulmonary fibrosis,
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    cystic fibrosis, emphysema,
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    COPD, what Leonard Nimoy just died of,
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    is a lung transplant,
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    but sadly, there are only enough
    available lungs for 2,000 people
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    in the U.S. a year
    to get a young transplant,
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    whereas nearly a half
    million people a year
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    die of end stage lung failure.
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    CA: So how can you address that?
Title:
My daughter, my wife, our robot, and the quest for immortality
Speaker:
Martine Rothblatt
Description:

more » « less
Video Language:
English
Team:
closed TED
Project:
TEDTalks
Duration:
21:04
  • The English transcript was modified on 6/23/2015: "Genesis" was changed to "Jenesis" throughout the talk.

English subtitles

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