biden-cancer-summitI am just back from the anchor event for the Biden Cancer Summit in Washington, DC, and I want to share some personal reflections as someone who first received a cancer diagnosis 22 years ago at age 45. 

As of today, I have been treated for chronic lymphocytic leukemia (CLL) two .times; in 2000 during a Phase II clinical trial, and then again in 2017 after an end to remission. But I am walking around with a second cancertoo, myelofibrosis (scarring in my bone marrow). That diagnosis came in 2011, and the expensive little white pills continue to work.

Like anyone with cancer, even when medicines have knocked it back, we always worry about how long and whether there will be a new medicine to fill the breech, and will we be able to get access to it and afford it. 

So, with that in mind, I attended the Biden event and was thrilled to reconnect with several other patients I know, and several new ones—all of us with the same goal: how can all the cancer stakeholders work together to get us to cures or more effective, affordable, accessible care more quickly?

Joe Biden has been asking for 10 years of progress in five years. In 2016, he did that as Vice President with a remit from President Obama for a cancer “moonshot” and Joe and his wife, Jill, are just as committed now, out of government, with the Biden Cancer Initiative.

The day-long event was anchored from Washington with 450 satellite events at the same time. What was so cool is that many patients and caregivers were invited and showcased as full partners in the dialogue with government, researchers, hospitals and doctors to overcome the obstacles to beating cancer.

As you may recall, the Bidens took up the cancer cause after their grown son, Beau, died of glioblastoma (brain cancer).

Here are some brief comments Vice President Biden made on the eve of the event. 

While there, as I met other patients, friends old and new, I interviewed several and featured them in brief Facebook Live segments you may enjoy. 

  •      Click here to watch Facebook Live segment one, where I talk to two people living with lung cancer, Michael from Michigan and and Marisa from Louisville about their impressions of the Summit. 
  •      Click here to watch Facebook Live segment two, where I’m joined by George, a glioblastoma patient, from NYC, Lynn Fletcher O'Brien, a CLL patient from Washington and Cherie Rineker, a myeloma patient. 

We were all in agreement that we have a long road to go, and these are just some of the issues: 

  •      Getting more researchers, pharma companies and government to collaborate to accelerate new developments together
  •      Providing more resources and using innovative technology to raise awareness of cancer prevention and treatments for all segments of our population
  •      Overcoming obstacles to access to the most effective medicines and promising clinical trials
  •      Providing financial assistance so patients and their families can pursue quality care while keeping their home life in balance

We will keep you updated as we work together with the Bidens and the terrific people we met and invite you to help. To be sure, progress against cancer has been made, and some of the patients and their presence in Washington are shining examples of that, but none of us with cancer, if not cured, know what’s next and when.  

As I approach my 68thbirthday, living with two cancers but doing well, I am filled with gratitude about the progress that has led to my current result and gratitude for the people following the leadership of the Bidens. I truly feel this will produce more progress quicker and that will be life-extending and life-saving for so many!

Andrew Schorr
Patient Power Co-Founder, CLL and MPN Patient

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.