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The White House
It changed my
life, it could change yours
Fibrolamellar hepatocellular carcinoma.
It's not a term that any kid typically knows, or should ever have to
learn first-hand. But when I turned 12 years old, that was my diagnosis
-- and it became a defining part of my life.
It's a specific kind of liver cancer that affects children. It's rare
-- you don't see it in your average patient. So I knew, even then, that
it would take something more than a generic treatment to cure this
unique disease.
So I got to work. And thanks to incredible technological advances and
the help of a community of scientists and fibrolamellar patients like
me, I was able to identify the change in the DNA that leads to this
kind of cancer. Rather than focusing broadly on all liver cancer, I
examined a precise patient group -- which allowed for such a precise
discovery.
Today, I'm 19 years old, in college, and in remission.
There's a name for the approach we used. It's called "Precision
Medicine" -- an approach that uses data-driven treatments that are
unique to your own body. It's a proven way to treat more difficult
diseases. And it's a field of medicine the President's 2016 budget is
investing in.
Think about it: If you need glasses, you aren't assigned a generic
pair. You get a prescription customized for your eyes. If you need a
blood transfusion, you get one that matches your precise blood type.
Treatments for diseases like cancer, cystic fibrosis, and diabetes
should be no different.
Thanks to the Precision Medicine approach, my colleagues and I are
developing the first diagnostics tests and new clinical trials for
fibrolamellar hepatocellular carcinoma. I showed the President our
progress when I attended the White House Science Fair last year. And I
was proud to stand with the President when he appealed to Congress to
help medical professionals translate the success of Precision Medicine
to a larger scale.
It will take all of us -- patients, hospitals, industry,
philanthropies, researchers, privacy experts, and congressional leaders
-- to take the lead in the future of medicine. The President's budget
investments in Precision Medicine is the first place to start.
Because this new way of looking at care -- and cures -- could change
your life. It certainly changed mine.
Thanks for listening,
Elana Simon
Cambridge, Massachusetts
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