Thursday, January 14, 2016

The Moonshot to Cure Cancer Embodies Basic Tenets of Patient Engagement

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During President Obama's final State of the Union Tuesday night, he charged Vice President Joe Biden with the task of curing cancer.
Last year, Vice President Biden said that with a new moonshot, America can cure cancer. Last month, he worked with this Congress to give scientists at the National Institutes of Health the strongest resources they’ve had in over a decade. Tonight, I’m announcing a new national effort to get it done. And because he’s gone to the mat for all of us, on so many issues over the past forty years, I’m putting Joe in charge of Mission Control. For the loved ones we’ve all lost, for the family we can still save, let’s make America the country that cures cancer once and for all. (Excerpt from the Daily Mail)
Mr. Biden will be in good company.

The Cancer Moonshot 2020 Initiative will be bringing together companies like GlaxoSmithKline, Amgen, and Celgene to accelerate immunotherapy researchIllumina also recently announced the creation of a new startup called GRAIL that will be working on a universal cancer detection blood test.

Biden published a piece on Medium, in which he asks citizens to share stories of how cancer has touched our lives. The plan he's laid out and the issues he sees with cancer treatment and research have been echoed by others living with all kinds of illnesses like Emily Kramer-Golinkoff and Matthew Might. Silos separate those who could help from those who need the help. Resources are lacking and research isn't being pushed out within enough time to really help people living now with these diseases.

As Biden points out in this piece,
Right now, only 5 percent of cancer patients in the U.S. end up in a clinical trial. Most aren’t given access to their own data. At the same time, community oncologists — who treat more than 75 percent of cancer patients — have more limited access to cutting-edge research and advances.
Patients having access to their own data has been a sticking point in the patient engagement world for the past several years. Hospitals and various companies can see our data, but often we cannot. We even have to pay for access to our medical records! The fees, even when reasonable, become unbearable for patients like myself who have multiple illnesses and issues.

You could easily purchase a nice car with that money

It's refreshing to see ideas that have been so integral to patient engagement in the last five years hit the national spotlight. I know I'll be writing to Vice President Biden regarding my husband's aunt, living on borrowed time with Metastatic Breast Cancer and, whether or not it goes anywhere, offering to do what I can to help with this initiative.


About the author:

Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.  

She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event.  ePharma will take place February 29 - March 2, 2016, in New York City.  As a reader of this blog, when you register to join us 
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