miércoles, 4 de febrero de 2015

It changed my life, it could change yours [Elana Simon, Massachusetts]

The White House, Washington
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
Elana Simon
Cambridge, Massachusetts

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