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Precision Medicine, POTUS and T1D

February 29th, 2016

White House Precision Medicine Initiative Panel

Last Thursday I had the incredible opportunity to be on a panel discussion with President Barack Obama. The event marked one year of progress since the President kicked off the Precision Medicine Initiative in early 2015. It took place in the South Court Auditorium of the Eisenhower Executive Office Building, literally steps away from the West Wing.

Much of the discussion about Precision Medicine centered around our ability to sequence DNA and craft specific, personalized drugs and treatments for cancer and other diseases. There was also a wonderful amount of conversation about access to data and empowering patients. During the 40 minute panel session, the President himself said:

“One of the promises of Precision Medicine is not just giving researchers and medical practitioners tools to help cure people, it’s about empowering individuals to monitor and take a more active role in their health.” – President Barack Obama

These are powerful words, and I’m very proud that Tidepool and the entire #WeAreNotWaiting movement were chosen to represent them. I was honored to be joined at the event by Hugo Campos, a champion for access to data from medical devices. Also in the audience was Dana Lewis, one of the inventors of OpenAPS. Since my daughter is now using OpenAPS (I assembled it for her as a Geek Dad project, not a Tidepool project), I took the opportunity share with the President and the panel how access to device data had allowed projects like Nightscout, Bigfoot Biomedical and OpenAPS to emerge, empowering patients to achieve safer and more effective therapy than the usual standard of care.

The day also included a series of roundtable conversations. I was part of a meeting that included descendants of Henrietta Lacks. Her story, and their advocacy, permeated the discussions and were a reminder of how important patient ownership and access to data and informed consent are.

Precision Medicine Roundtable Discussion

Being at the White House, and especially sitting with the President, was an overwhelming experience, to say the least. Here are a few memorable “behind the scenes” moments:

  • Dad moment #1: While waiting in the “green room” to go on stage, I found myself standing shoulder to shoulder with President Obama. My wife Melissa had given me a great line: I said “If Malia ends up going to Stanford, you are welcome to stay at our place any time.” (We live close by.) He laughed and then we chatted briefly about the challenges of the college application and selection process, and how you just want the best for your kids.
  • I don’t think I’ve ever been more nervous in my life. I was wearing my FitBit and it shows that my heart was racing all day. (My resting heart rate is typically 68-74). The President was wearing a FitBit, too, so I took the opportunity during the panel to make the analogy that getting data from our diabetes devices should be as seamless as getting data from our FitBits. (One of my goals was to say the words “OAuth” and “REST APIs” while on the panel; I got “API” out… so close…).
    HL Heart Rate Thursday
  • Dad moment #2: At the end of the panel, while President Obama was shaking our hands, he said to me “There’s something about daughters. Dads will do anything for their daughters.” I just melted.

Many thanks to Claudia Williams, Fae Jencks, DJ Patil and others at the White House Office of Science and Technology Policy for inviting me to participate in the event and for having faith in my ability to coherently express my thoughts in the presence of the President (which wasn’t easy!).

This was an incredible milestone on what will surely be a very long journey. We’ve got a lot of work to do to make sure that everyone living with T1D has the tools they need to live safer, healthier and less burdensome lives. And all of this is just a bridge until we ultimately find a cure.

Extreme thanks to all of you, the many supporters of Tidepool, and to everyone in the #WeAreNotWaiting movement.

Now back to work…


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