President Obama Speaks on the Precision Medicine Initiative

Elana Simon: Hi, my
name is Elana Simon. I’m 19 years old and
currently studying computer science at Harvard. When I was 12 years old. I was diagnosed with a rare
pediatric liver cancer called fibrolamellar
hepatocellular carcinoma. Thanks to incredible
technological advances, the help of scientists, and
the fibrolamellar community, I was able to identify the
change in the DNA that leads to this cancer. Rather than trying to broadly
learn about all of our cancers, I just examined a small,
well defined patient group; which is what allowed for
such a precise discovery. With this knowledge, we’re now
working on developing the first diagnostic tests and new
treatments for fibrolamellar. Last year at the White
House Science Fair, I met the President and got to
discuss my research with him. It was such an honor to meet him
then and so it is with great pleasure that I introduce
the President to you today. The President: Hey. (applause) I’m proud of you. Good job. (applause) The President: Well,
thank you so much, Elana, for that wonderful
introduction. Let me just be
clear, when I was 19, I was not doing
genetic testing. (laughter) When I met Elana at
the White House Science Fair last year, she tried to
explain her research to me — and to help her explain
her findings, she made these giant pink chromosomes
out of swim noodles, (laughter) which was helpful to me — (laughter) — because I know what
swim noodles are, and I saw how they
fit together. But I could not have been
more impressed with Elana. And she represents
the incredible talent and energy and possibility
of our young people, and so I’m so proud of
her and I’m so grateful that she introduced
me here today. And she’s doing great at
Harvard from what I understand. So those of you who are
interested in purchasing stock in her — (laughter) — I’m sure she has an
agent of some sort that you can talk to. We’ve got some folks
here who are doing outstanding work to
keep Americans healthy. We have America’s Health
and Human Services Secretary,
Sylvia Burwell. You can give her a
round of applause. (applause) She’s worthy of it. We’ve got our Surgeon
General, Vivek Murthy. Where’s Vivek? (applause) Stand up, Vivek. Our new Surgeon General. We haven’t had one in a while. (laughter) So we’re really
happy to have him here. And he looks sharp
in his uniform. We have Dr. Harold Varmus of
the National Cancer Institute. Harold. (applause) We have the singing
scientist, Dr. Francis Collins, of NIH here. (applause) And we have
my science advisor, Dr. John Holdren,
who does not sing. (applause) For anyone wondering,
“Is there a doctor in the house?” — we have got you covered. We also have members of
Congress who are here. Lamar Alexander from the
great state of Tennessee is one of the Senate’s key
supporters of encouraging medical innovation, and
I’m so looking forward to working with him. Give Lamar a big
round of applause. (applause) Senator Patty Murray
is prepared to work with him on this issue. She couldn’t make
it here today. But we do have on
the House side, Congresswoman Diana
DeGette, who is here and who is leading this
effort in the House. We’re very proud of her. (applause) Now, last week, in
my State of the Union Address, I focused on what we need to
do to make sure middle-class economics helps more Americans
get ahead in the new economy. We’ve got to help working
families make ends meet and make them feel more secure
in a constantly changing, dynamic, global economy. We have to offer more
opportunities for people to upgrade their skills
for better-paying jobs in this economy. And we’ve got to build the
world’s most competitive economy so that businesses
create jobs here in the United States
and not someplace else. And that last part is what
I want to focus on today. We’ve invited some of
America’s brightest minds in medicine and technology;
some of our strongest advocates for privacy. And perhaps most importantly,
we’ve invited patients who have the most at
stake in these efforts. And we’re here to harness
what is most special about America, and that is our
spirit of innovation; our ability to dream
and take risks, and tinker and
try new things. And as a result of that, it
will not only improve our economy, but improve
the lives of men and women and children
for generations to come. And together, what’s
so exciting is, is that we have the possibility
of leading an entirely new era of medicine that makes
sure new jobs and new industries and new lifesaving
treatments for diseases are created right here
in the United States. Because we shouldn’t just
celebrate innovation. We have to invest
in innovation. We have to nurture
innovation. We have to encourage it and
make sure that we’re channeling it in ways
that are most productive. And that’s especially true
when it comes to medicine. After all, when American
researchers developed a vaccine for polio, a program
created by Congress helped to distribute it. A federally funded study
helped American doctors discover the risk factors
for heart disease. Grants from the National Science
Foundation and NIH supported the early experiments that led
to the invention of the MRI. And these kinds of investments
don’t always pay off. Basic research, by definition,
will sometimes lead us down blind alleys, but it will
also tell us what we don’t know, which then helps us
figure out new pathways. And when things do pay off,
then they create economic opportunities in ways that
we could never imagine. So, Francis, Dr. Collins
here, helped lead the Human Genome Project,
and we’ve got a number of people here who are deeply
involved in that process. And one study found that
every dollar we spent to map the human genome
has already returned $140 to our economy. There’s a huge economic stake in
us tapping into this innovation. (applause) There’s nothing wrong
with clapping about that. But as anybody who’s ever
watched a loved one battle with an illness, particularly
a life-threatening illness — and I suspect that there’s
nobody here who hasn’t been touched in some fashion
by that experience — what everybody here
understands is that the most important impact these
investments can have can’t be measured in dollars. If we have an opportunity to
prevent hurt and heartbreak for more families; if we have
the opportunity to help people live longer,
happier, healthier lives; if we have the chance to make
sure that a young person like Elana, who was stricken by a
disease before their life has even really gotten going, if we
have a chance to make sure that they’re okay and cured, and
then able to make incredible contributions our society,
then we’ve got to seize that. We’ve got to go
after that. And that’s why
we’re here today. Because something called
precision medicine — in some cases, people call it
personalized medicine — gives us one of the
greatest opportunities for new medical breakthroughs
that we have ever seen. Doctors have always recognized
that every patient is unique, and doctors have always
tried to tailor their treatments as best they
can to individuals. You can match a blood
transfusion to a blood type. That was an
important discovery. What if matching a cancer
cure to our genetic code was just as easy,
just as standard? What if figuring out the
right dose of medicine was as simple as taking
our temperature? And that’s the promise
of precision medicine — delivering the
right treatments, at the right time, every
time to the right person. And for a small
but growing number of patients, that
future is already here. Eight out of 10 people with
one type of leukemia saw white blood cell counts return
to normal with a new drug targeting a specific gene. Genetic testing for HIV
patients helps doctors determine who will be helped
by a new antiviral drug, and who will experience
harmful side effects. And advances in technology
means these breakthroughs could just be the beginning. The year Dr. Collins
helped sequence the first human genome, it cost about
$100 million dollars, and today it costs
less than $2,000. Wearable electronics make it
easier than ever to record vital signs from your blood
sugar to your heart rate. Electronic medical records let
doctors and researchers across the country collaborate more
closely than ever before. And more powerful computers
help us analyze data faster than ever before. So if we combine all these
emerging technologies, if we focus them and make sure
that the connections are made, then the possibility of
discovering new cures, the possibility of applying
medicines more efficiently and more effectively so
that the success rates are higher, so that there’s
less waste in the system, which then means more
resources to help more people — the possibilities
are boundless. So the time is right
to unleash a new wave of advances in this area,
in precision medicine, just like we did with
genetics 25 years ago. And the really good news —
this is how you know that the moment is right, is
there’s bipartisan support for the idea — (laughter) — here
in Washington. (applause) Which — Which makes me
very happy. (laughter) When I was
a senator back in 2005, I worked with Republican
Senator Richard Burr on a bill supporting
precision medicine. Newly elected Republican
Senator Bill Cassidy — who also happens to be a
gastroenterologist — recently called precision
medicine, “An incredible area of promise.” And that’s why the budget I
send this Congress on Monday will include a new Precision
Medicine Initiative that brings America closer to
curing diseases like cancer and diabetes, and gives all
of us access, potentially, to the personalized
information that we need to keep ourselves and
our families healthier. So let me just outline
the facets of this. First, we’re going to work with
the National Cancer Institute. We want to find the
genetic factors that can lead to cancer. And we want to use that
knowledge to develop new and more effective
approaches to help people beat this disease. Second, we’re going to work
with the FDA to develop new approaches for evaluating
next-generation genetic tests. The way we approve a new
gene-sequencing technology is going to be different
than the way we approve a new pacemaker or
prosthetic device. And we need to make
sure that our approach reflects the difference
in technology. Third, we’re going
to work with the National Institutes
of Health to create a research group of one
million volunteers. And just like analyzing our DNA
teaches us more about who we are than ever before, analyzing
data from one of the largest research populations ever
assembled will teach us more about the connections
between us than ever before. And this new information
will help doctors discover the causes, and
one day the cures, of some of the most deadly
diseases that we face. So if we have a big data set,
a big pool of people that’s varied, then that allows
us to really map out not only the genome of
one person, but now we can start seeing
connections what it is that we’re trying to do with
respect to treatment. And finally, we’re going to
make sure that protecting patient privacy is built into
our efforts from day one. And I’m proud we have
so many patients’ rights advocates with
us here today. They’re not going to
be on the sidelines. It’s not going to
be an afterthought. They’ll help us design this
initiative from the ground up, making sure that we
harness new technologies and opportunities in
a responsible way. So the Precision Medicine
Initiative we’re launching today will lay the foundation
for a new generation of lifesaving discoveries. But in order for us to
realize its potential, I’m asking more hospitals,
and researchers, and privacy experts to
join us in this effort. And I’m asking entrepreneurs
and non-profits to help us create tools that
give patients the chance to get involved as well. Because we want every
American ultimately to be able to securely
access and analyze their own health data, so that
they can make the best decisions for themselves
and for their families. And ultimately, this has
the possibility of not only helping us find new cures,
but it also helps us create a genuine health care
system as opposed to just a disease care system. Part of what we want to do is
to allow each of us to have sufficient information about
our particular quirks — (laughter) — that we can make
better life decisions. And that, ultimately, is one
of the most promising aspects about this — making sure
that we’ve got a system that focuses on prevention
and keeping healthy, not just on curing diseases
after they happen. Medical breakthroughs
take time, and this area of precision medicine
will be no different. But the patients with us
this morning are living proof that the dawn of a
new era has arrived. If we start today,
and seize this moment, and the focus and the
energy and the resources that it demands, there is
no telling how many lives we could change. And every single one
of those lives matter. Bill Elder was one
of Michelle’s guests at the State of the
Union last week. Where’s Bill? Here he is. Stand up, Bill. (applause) Bill is a
good-looking, young guy. (laughter) And about 20
years ago, Bill was diagnosed
with cystic fibrosis. But it turns out Bill is one of
4 percent of cystic fibrosis patients whose disease is
caused by a particular mutation in one gene. And a few years ago, the
FDA fast-tracked a new drug target specifically
targeting that mutation. And one night in 2012, Bill
tried it for the first time. Just a few hours
later he woke up, knowing something was
different, and finally he realized what it was:
He had never been able to breathe out of
his nose before. Think about that. So Bill is now 27. When he was born, 27
was the median age of survival for a cystic
fibrosis patient. Today, Bill is in his third
year of medical school. And “for the first time
in my life,” Bill said — (applause) for the first
time in his life, he says, “I truly believe that I
will live long enough to be a grandfather.” And one day Bill will be able
to tell his grandchildren about how he used the
miracle of his own life to not only serve as an
example, but also an inspiration and
ultimately a pathway for his own career to help save
the lives of other people. And that’s the spirit
of hope, and resilience, and community that’s always
carried America forward. And we may disagree sometimes,
especially here in Washington, but we do share a common
vision for our future. We want an economy
powered by the world’s best innovations,
the best ideas. We want a country that extends
its promise of opportunity to everybody who’s
willing to work for it. We want to have a nation
in which the accidents and circumstances of our birth
aren’t determining our fate, and therefore born with
a particular disease or a particular genetic
makeup that makes us more vulnerable to something;
that that’s not our destiny, that’s not our fate —
that we can remake it. That’s who we are as
Americans, and that’s the power of
scientific discovery. And we want Bill’s generation,
and the generations that come after, to inherit that most
extraordinary gift anybody can imagine, and that is not
just a chance to live a long, and happy, and healthy life in
this greatest country on Earth, but also the chance to remake
that world continuously, in ways that provide great
promise for future generations. So I’m very excited
about this. I hope you are, too. Thank you, everybody. God bless you. (applause) God bless
the United States. Let’s get to work.

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