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.
More about the President's Precision Medicine Initiative and why these tailored treatments are going to be more successful.
Watch Jo Handelsman, Associate Director for Science in the Office of
Science and Technology Policy, explain the Precision Medicine Initiative
and its significance.
The President's 2016 budget includes investments in an emerging field of medicine that takes into account individual differences in people's genes, microbiomes, environments, and lifestyles -- making possible more effective, targeted treatments for diseases like cancer and diabetes. That's incredibly significant, and this is why:
Precision Medicine is already leading to a handful of highly effective treatments tailored to individual patients. Here are a few Americans whose lives have already been changed by these treatments.
Take a look:
To push this effort forward, we’ll need all hands on deck, including patients, hospitals, industry, philanthropies, researchers, privacy experts, and others. Learn more about this exciting initiative here.
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.
Learn more about this exciting initiative and then share the news with your friends and families.
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
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.
More about the President's Precision Medicine Initiative and why these tailored treatments are going to be more successful.
The Precision Medicine Initiative: Data-Driven Treatments as Unique as Your Own Body
The President's 2016 budget includes investments in an emerging field of medicine that takes into account individual differences in people's genes, microbiomes, environments, and lifestyles -- making possible more effective, targeted treatments for diseases like cancer and diabetes. That's incredibly significant, and this is why:
Right now, most medical treatments are designed for the average patient.
But one size doesn't fit all, and treatments that are very successful for some patients don't work for others. Think about it:- If you need glasses, you aren't assigned a generic pair. You get a prescription customized for you.
- If you have an allergy, you get tested to determine exactly what you're allergic to.
- If you need a blood transfusion, it has to match your precise blood type.
Enter Precision Medicine: health care tailored to you.
Precision Medicine is already leading to a handful of highly effective treatments tailored to individual patients. Here are a few Americans whose lives have already been changed by these treatments.
Take a look:
- The drug ivacaftor treats the underlying cause -- not the symptoms -- of a particular genetic variation of cystic fibrosis.
- A variety of cancer patients are now routinely undergoing molecular testing as part of their care -- and their doctors are choosing treatments based on this information.
- Physicians at the University of Michigan 3D-printed a personalized tracheal splint that saved the life of a critically ill infant with a weak trachea.
Translating these successes to a larger scale will require a national effort.
And that's exactly what the President's budget invests in.To push this effort forward, we’ll need all hands on deck, including patients, hospitals, industry, philanthropies, researchers, privacy experts, and others. Learn more about this exciting initiative here.
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.
Learn more about this exciting initiative and then share the news with your friends and families.
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
No comments:
Post a Comment