A landmark day in the Movement: Patients in the Front Row

http://goo.gl/cn4O0K

Yesterday, 200 patients, advocates, scientists, doctors and researchers gathered at the White House to hear President Obama’s launch of the Precision Medicine Initiative. According to the President, precision medicine aims to tailor treatments to each individual. President Obama likened precision medicine to how we match blood transfusions to blood type – only now we should aim to match a wide range of treatments to a wide range of varying genetic and biounique markers.

The initiative begins with a budget request for $215 Million in new funds. The funds will be used, mainly at the NIH, to:

  • Develop a national cohort of a million volunteers who will donate their health-related data for open research.
  • Provide increased funding for research to identify genetic drivers of cancer.
  • Help the FDA speed up the regulatory process
  • Fund the development of data interoperability standards

But, was remarkable about the day —in addition to the announcement which means a great deal to a great many —was the composition of the room and the event.

After most of the invited guests were seated (and selfies of the presidential podium were taken), approximately 20 more VIPs were escorted in to the front rows of the East Room.

They were patients, or families of patients.

The President was introduced by Elana Simon, a 19 year old student who’s high school science fair project focused on a genetically identified treatment for her own liver cancer. In other words, the President of the United States was introduced by an ePatient.