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Elana Simon: Hi, my
name is Elana Simon.
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I'm 19 years old and
currently studying
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computer science at Harvard.
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When I was 12 years old.
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I was diagnosed with a rare
pediatric liver cancer
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called fibrolamellar
hepatocellular carcinoma.
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Thanks to incredible
technological advances,
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the help of scientists, and
the fibrolamellar community,
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I was able to identify the
change in the DNA that
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leads to this cancer.
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Rather than trying to broadly
learn about all of our cancers,
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I just examined a small,
well defined patient group;
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which is what allowed for
such a precise discovery.
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With this knowledge, we're now
working on developing the first
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diagnostic tests and new
treatments for fibrolamellar.
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Last year at the White
House Science Fair,
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I met the President and got to
discuss my research with him.
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It was such an honor to meet him
then and so it is with great
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pleasure that I introduce
the President to you today.
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The President: Hey.
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(applause)
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I'm proud of you.
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Good job.
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(applause)
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The President: Well,
thank you so much, Elana,
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for that wonderful
introduction.
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Let me just be
clear, when I was 19,
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I was not doing
genetic testing.
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(laughter)
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When I met Elana at
the White House Science Fair
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last year, she tried to
explain her research to me --
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and to help her explain
her findings, she made
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these giant pink chromosomes
out of swim noodles,
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(laughter)
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which was helpful to me --
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(laughter)
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-- because I know what
swim noodles are,
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and I saw how they
fit together.
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But I could not have been
more impressed with Elana.
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And she represents
the incredible talent
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and energy and possibility
of our young people,
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and so I'm so proud of
her and I'm so grateful
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that she introduced
me here today.
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And she's doing great at
Harvard from what I understand.
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So those of you who are
interested in purchasing
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stock in her --
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(laughter)
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-- I'm sure she has an
agent of some sort that
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you can talk to.
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We've got some folks
here who are doing
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outstanding work to
keep Americans healthy.
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We have America's Health
and Human Services
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Secretary,
Sylvia Burwell.
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You can give her a
round of applause.
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(applause)
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She's worthy of it.
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We've got our Surgeon
General, Vivek Murthy.
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Where's Vivek?
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(applause)
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Stand up, Vivek.
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Our new Surgeon General.
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We haven't had one in a while.
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(laughter)
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So we're really
happy to have him here.
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And he looks sharp
in his uniform.
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We have Dr. Harold Varmus of
the National Cancer Institute.
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Harold.
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(applause)
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We have the singing
scientist, Dr. Francis Collins,
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of NIH here.
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(applause)
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And we have
my science advisor,
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Dr. John Holdren,
who does not sing.
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(applause)
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For anyone wondering,
"Is there a doctor
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in the house?"
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-- we have got you covered.
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We also have members of
Congress who are here.
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Lamar Alexander from the
great state of Tennessee
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is one of the Senate's key
supporters of encouraging
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medical innovation, and
I'm so looking forward
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to working with him.
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Give Lamar a big
round of applause.
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(applause)
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Senator Patty Murray
is prepared to work with
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him on this issue.
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She couldn't make
it here today.
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But we do have on
the House side,
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Congresswoman Diana
DeGette, who is here
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and who is leading this
effort in the House.
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We're very proud of her.
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(applause)
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Now, last week, in
my State of the Union Address,
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I focused on what we need to
do to make sure middle-class
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economics helps more Americans
get ahead in the new economy.
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We've got to help working
families make ends meet
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and make them feel more secure
in a constantly changing,
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dynamic, global economy.
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We have to offer more
opportunities for people
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to upgrade their skills
for better-paying jobs
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in this economy.
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And we've got to build the
world's most competitive
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economy so that businesses
create jobs here
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in the United States
and not someplace else.
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And that last part is what
I want to focus on today.
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We've invited some of
America's brightest minds
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in medicine and technology;
some of our strongest
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advocates for privacy.
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And perhaps most importantly,
we've invited patients
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who have the most at
stake in these efforts.
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And we're here to harness
what is most special about
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America, and that is our
spirit of innovation;
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our ability to dream
and take risks,
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and tinker and
try new things.
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And as a result of that, it
will not only improve
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our economy, but improve
the lives of men
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and women and children
for generations to come.
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And together, what's
so exciting is,
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is that we have the possibility
of leading an entirely new
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era of medicine that makes
sure new jobs and new
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industries and new lifesaving
treatments for diseases
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are created right here
in the United States.
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Because we shouldn't just
celebrate innovation.
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We have to invest
in innovation.
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We have to nurture
innovation.
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We have to encourage it and
make sure that we're
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channeling it in ways
that are most productive.
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And that's especially true
when it comes to medicine.
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After all, when American
researchers developed
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a vaccine for polio, a program
created by Congress helped
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to distribute it.
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A federally funded study
helped American doctors
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discover the risk factors
for heart disease.
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Grants from the National Science
Foundation and NIH supported
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the early experiments that led
to the invention of the MRI.
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And these kinds of investments
don't always pay off.
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Basic research, by definition,
will sometimes lead us down
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blind alleys, but it will
also tell us what we don't
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know, which then helps us
figure out new pathways.
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And when things do pay off,
then they create economic
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opportunities in ways that
we could never imagine.
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So, Francis, Dr. Collins
here, helped lead
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the Human Genome Project,
and we've got a number
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of people here who are deeply
involved in that process.
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And one study found that
every dollar we spent
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to map the human genome
has already returned
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$140 to our economy.
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There's a huge economic stake in
us tapping into this innovation.
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(applause)
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There's nothing wrong
with clapping about that.
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But as anybody who's ever
watched a loved one battle
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with an illness, particularly
a life-threatening illness --
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and I suspect that there's
nobody here who hasn't
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been touched in some fashion
by that experience --
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what everybody here
understands is that the most
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important impact these
investments can have can't
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be measured in dollars.
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If we have an opportunity to
prevent hurt and heartbreak
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for more families; if we have
the opportunity to help
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people live longer,
happier, healthier lives;
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if we have the chance to make
sure that a young person like
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Elana, who was stricken by a
disease before their life has
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even really gotten going, if we
have a chance to make sure that
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they're okay and cured, and
then able to make incredible
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contributions our society,
then we've got to seize that.
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We've got to go
after that.
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And that's why
we're here today.
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Because something called
precision medicine -- in some
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cases, people call it
personalized medicine --
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gives us one of the
greatest opportunities
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for new medical breakthroughs
that we have ever seen.
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Doctors have always recognized
that every patient is unique,
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and doctors have always
tried to tailor their
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treatments as best they
can to individuals.
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You can match a blood
transfusion to a blood type.
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That was an
important discovery.
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What if matching a cancer
cure to our genetic
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code was just as easy,
just as standard?
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What if figuring out the
right dose of medicine
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was as simple as taking
our temperature?
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And that's the promise
of precision medicine --
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delivering the
right treatments,
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at the right time, every
time to the right person.
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And for a small
but growing number
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of patients, that
future is already here.
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Eight out of 10 people with
one type of leukemia saw
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white blood cell counts return
to normal with a new drug
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targeting a specific gene.
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Genetic testing for HIV
patients helps doctors
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determine who will be helped
by a new antiviral drug,
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and who will experience
harmful side effects.
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And advances in technology
means these breakthroughs
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could just be the beginning.
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The year Dr. Collins
helped sequence the first
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human genome, it cost about
$100 million dollars,
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and today it costs
less than $2,000.
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Wearable electronics make it
easier than ever to record
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vital signs from your blood
sugar to your heart rate.
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Electronic medical records let
doctors and researchers across
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the country collaborate more
closely than ever before.
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And more powerful computers
help us analyze data faster
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than ever before.
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So if we combine all these
emerging technologies,
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if we focus them and make sure
that the connections are made,
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then the possibility of
discovering new cures,
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the possibility of applying
medicines more efficiently
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and more effectively so
that the success rates are
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higher, so that there's
less waste in the system,
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which then means more
resources to help more
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people -- the possibilities
are boundless.
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So the time is right
to unleash a new wave
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of advances in this area,
in precision medicine,
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just like we did with
genetics 25 years ago.
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And the really good news --
this is how you know that
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the moment is right, is
there's bipartisan support
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for the idea --
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(laughter)
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-- here
in Washington.
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(applause)
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Which --
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Which makes me
very happy.
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(laughter)
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When I was
a senator back in 2005,
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I worked with Republican
Senator Richard Burr
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on a bill supporting
precision medicine.
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Newly elected Republican
Senator Bill Cassidy --
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who also happens to be a
gastroenterologist --
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recently called precision
medicine, "An incredible
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area of promise."
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And that's why the budget I
send this Congress on Monday
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will include a new Precision
Medicine Initiative that
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brings America closer to
curing diseases like cancer
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and diabetes, and gives all
of us access, potentially,
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to the personalized
information that we need
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to keep ourselves and
our families healthier.
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So let me just outline
the facets of this.
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First, we're going to work with
the National Cancer Institute.
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We want to find the
genetic factors that
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can lead to cancer.
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And we want to use that
knowledge to develop
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new and more effective
approaches to help people
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beat this disease.
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Second, we're going to work
with the FDA to develop new
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approaches for evaluating
next-generation genetic tests.
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The way we approve a new
gene-sequencing technology
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is going to be different
than the way we approve
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a new pacemaker or
prosthetic device.
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And we need to make
sure that our approach
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reflects the difference
in technology.
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Third, we're going
to work with
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the National Institutes
of Health to create
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a research group of one
million volunteers.
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And just like analyzing our DNA
teaches us more about who we
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are than ever before, analyzing
data from one of the largest
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research populations ever
assembled will teach us more
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about the connections
between us than ever before.
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00:14:11,383 --> 00:14:13,453
And this new information
will help doctors
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discover the causes, and
one day the cures, of some
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of the most deadly
diseases that we face.
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So if we have a big data set,
a big pool of people that's
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varied, then that allows
us to really map out
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not only the genome of
one person, but now
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00:14:33,973 --> 00:14:36,343
we can start seeing
connections what it is that
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we're trying to do with
respect to treatment.
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And finally, we're going to
make sure that protecting
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patient privacy is built into
our efforts from day one.
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And I'm proud we have
so many patients'
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rights advocates with
us here today.
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They're not going to
be on the sidelines.
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It's not going to
be an afterthought.
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They'll help us design this
initiative from the ground
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up, making sure that we
harness new technologies
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and opportunities in
a responsible way.
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So the Precision Medicine
Initiative we're launching
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today will lay the foundation
for a new generation
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of lifesaving discoveries.
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But in order for us to
realize its potential,
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I'm asking more hospitals,
and researchers,
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and privacy experts to
join us in this effort.
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00:15:24,890 --> 00:15:28,130
And I'm asking entrepreneurs
and non-profits
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to help us create tools that
give patients the chance
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00:15:31,163 --> 00:15:34,163
to get involved as well.
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Because we want every
American ultimately
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00:15:36,168 --> 00:15:39,408
to be able to securely
access and analyze their
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00:15:39,405 --> 00:15:42,245
own health data, so that
they can make the best
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00:15:42,241 --> 00:15:46,941
decisions for themselves
and for their families.
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00:15:46,945 --> 00:15:51,885
And ultimately, this has
the possibility of not only
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00:15:51,884 --> 00:15:57,554
helping us find new cures,
but it also helps us create
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00:15:57,556 --> 00:16:00,126
a genuine health care
system as opposed to just
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00:16:00,125 --> 00:16:02,665
a disease care system.
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00:16:02,661 --> 00:16:05,601
Part of what we want to do is
to allow each of us to have
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sufficient information about
our particular quirks --
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00:16:12,204 --> 00:16:13,844
(laughter)
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-- that we can make
better life decisions.
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00:16:18,277 --> 00:16:22,117
And that, ultimately, is one
of the most promising aspects
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00:16:22,114 --> 00:16:25,554
about this -- making sure
that we've got a system that
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00:16:25,551 --> 00:16:28,451
focuses on prevention
and keeping healthy,
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00:16:28,454 --> 00:16:33,494
not just on curing diseases
after they happen.
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00:16:33,492 --> 00:16:36,532
Medical breakthroughs
take time, and this area
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00:16:36,528 --> 00:16:39,598
of precision medicine
will be no different.
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But the patients with us
this morning are living
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00:16:42,201 --> 00:16:45,641
proof that the dawn of a
new era has arrived.
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00:16:47,639 --> 00:16:51,409
If we start today,
and seize this moment,
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00:16:51,410 --> 00:16:54,350
and the focus and the
energy and the resources
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00:16:54,346 --> 00:16:57,316
that it demands, there is
no telling how many lives
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00:16:57,316 --> 00:16:58,316
we could change.
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00:16:58,317 --> 00:17:00,757
And every single one
of those lives matter.
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00:17:03,689 --> 00:17:05,759
Bill Elder was one
of Michelle's guests
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00:17:05,758 --> 00:17:08,058
at the State of the
Union last week.
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00:17:08,060 --> 00:17:09,290
Where's Bill?
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00:17:09,294 --> 00:17:09,924
Here he is.
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00:17:09,928 --> 00:17:10,698
Stand up, Bill.
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00:17:10,696 --> 00:17:12,996
(applause)
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00:17:17,936 --> 00:17:19,236
Bill is a
good-looking, young guy.
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00:17:19,238 --> 00:17:21,978
(laughter)
316
00:17:22,908 --> 00:17:25,678
And about 20
years ago,
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00:17:25,677 --> 00:17:27,917
Bill was diagnosed
with cystic fibrosis.
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00:17:29,948 --> 00:17:34,088
But it turns out Bill is one of
4 percent of cystic fibrosis
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00:17:34,086 --> 00:17:37,726
patients whose disease is
caused by a particular mutation
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00:17:37,723 --> 00:17:40,193
in one gene.
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00:17:40,192 --> 00:17:42,532
And a few years ago, the
FDA fast-tracked a new
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00:17:42,528 --> 00:17:48,338
drug target specifically
targeting that mutation.
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00:17:48,333 --> 00:17:53,403
And one night in 2012, Bill
tried it for the first time.
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00:17:53,405 --> 00:17:55,405
Just a few hours
later he woke up,
325
00:17:55,407 --> 00:17:57,477
knowing something was
different, and finally
326
00:17:57,476 --> 00:17:59,476
he realized what it was:
He had never been able
327
00:17:59,478 --> 00:18:01,478
to breathe out of
his nose before.
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00:18:03,916 --> 00:18:05,886
Think about that.
329
00:18:05,884 --> 00:18:08,584
So Bill is now 27.
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00:18:08,587 --> 00:18:11,557
When he was born, 27
was the median age
331
00:18:11,557 --> 00:18:15,497
of survival for a cystic
fibrosis patient.
332
00:18:15,494 --> 00:18:19,594
Today, Bill is in his third
year of medical school.
333
00:18:19,598 --> 00:18:21,368
And "for the first time
in my life," Bill said --
334
00:18:21,366 --> 00:18:24,566
(applause)
335
00:18:30,309 --> 00:18:32,849
for the first
time in his life, he says,
336
00:18:32,845 --> 00:18:35,315
"I truly believe that I
will live long enough
337
00:18:35,314 --> 00:18:36,314
to be a grandfather."
338
00:18:40,540 --> 00:18:45,320
And one day Bill will be able
to tell his grandchildren
339
00:18:45,324 --> 00:18:51,094
about how he used the
miracle of his own life
340
00:18:51,096 --> 00:18:55,366
to not only serve as an
example, but also
341
00:18:55,367 --> 00:19:00,837
an inspiration and
ultimately a pathway for
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00:19:00,839 --> 00:19:03,439
his own career to help save
the lives of other people.
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00:19:05,611 --> 00:19:08,951
And that's the spirit
of hope, and resilience,
344
00:19:08,947 --> 00:19:12,417
and community that's always
carried America forward.
345
00:19:15,740 --> 00:19:19,420
And we may disagree sometimes,
especially here in Washington,
346
00:19:19,424 --> 00:19:22,564
but we do share a common
vision for our future.
347
00:19:22,561 --> 00:19:25,361
We want an economy
powered by the world's
348
00:19:25,364 --> 00:19:28,004
best innovations,
the best ideas.
349
00:19:28,000 --> 00:19:30,970
We want a country that extends
its promise of opportunity to
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00:19:30,969 --> 00:19:34,239
everybody who's
willing to work for it.
351
00:19:34,239 --> 00:19:39,949
We want to have a nation
in which the accidents and
352
00:19:39,945 --> 00:19:43,315
circumstances of our birth
aren't determining our fate,
353
00:19:43,315 --> 00:19:48,685
and therefore born with
a particular disease
354
00:19:48,687 --> 00:19:56,497
or a particular genetic
makeup that makes us more
355
00:19:56,495 --> 00:20:00,765
vulnerable to something;
that that's not our destiny,
356
00:20:00,766 --> 00:20:04,566
that's not our fate --
that we can remake it.
357
00:20:04,570 --> 00:20:07,710
That's who we are as
Americans, and that's
358
00:20:07,706 --> 00:20:09,676
the power of
scientific discovery.
359
00:20:09,675 --> 00:20:15,015
And we want Bill's generation,
and the generations that come
360
00:20:15,013 --> 00:20:19,213
after, to inherit that most
extraordinary gift anybody can
361
00:20:19,217 --> 00:20:22,557
imagine, and that is not
just a chance to live a long,
362
00:20:22,554 --> 00:20:26,124
and happy, and healthy life in
this greatest country on Earth,
363
00:20:26,124 --> 00:20:32,734
but also the chance to remake
that world continuously,
364
00:20:32,731 --> 00:20:37,841
in ways that provide great
promise for future generations.
365
00:20:37,836 --> 00:20:40,536
So I'm very excited
about this.
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00:20:40,539 --> 00:20:41,909
I hope you are, too.
367
00:20:41,907 --> 00:20:42,437
Thank you, everybody.
368
00:20:42,441 --> 00:20:42,941
God bless you.
369
00:20:42,941 --> 00:20:43,981
(applause)
370
00:20:43,976 --> 00:20:45,346
God bless
the United States.
371
00:20:45,344 --> 00:20:46,314
Let's get to work.
