Our Voice…

While attending a conference in Arizona last year, I had the pleasure of hearing Shelley Nasso, Chief Executive Officer of the National Coalition For Cancer Survivorship (NCCS), speak. Her presentation was well done and I learned so much from her about how survivors can play a key role in public policy. I knew immediately that I wanted to know more. Therefore, when I learned that NCCS was doing a conference this year, I signed up. I’d like to share with you some areas that were highlights of the conference for me.

The conference was called the CPAT (Cancer Policy and Advocacy Team) Symposium. Don’t let that fancy name fool you. It was definitely a working conference from morning until evening, plus homework before we attended. The agenda was diverse and practical. The point of it was to help advocates understand the current healthcare system, what the pressing issues are for survivors, and to develop skills to be a part of changing it. Not an easy task, hey?

The priority for the conference was to learn the specifics of the Planning Actively for Cancer Treatment (PACT) Act currently being considered by the Senate and House. This bill will provide all Medicare recipients the option to jointly develop with their doctors a written plan of cancer care. Doctors would actually be reimbursed by Medicare to have this important discussion. Our hope is that other insurance companies would follow what Medicare does. (Did you know 60% of cancer patients are Medicare recipients)?

Our task was to go to visit respective Senators and Representatives on Capitol Hill and request they sponsor the bill. I was joined by another survivor and caregiver from NC and we were able to meet with all the offices and engage in important conversations. We are now following up with our senators and representatives. If you would like to join me, please go to http://www.canceradvocacy.org/cancer-policy/pact-act/write-congress.  It only takes 2 minutes. (I was told yesterday that hearing from constituents would definitely help in a specific request).

Some other highlights for me at the conference included the following:
*Why is Survivorship Advocacy really necessary? What is the real impact for individuals, including follow up care? How can we, as “cancer novices”, deal with a life threatening illness and add this role at the same time?
*Who decides what quality of care and shared decision making is and how can we measure it?
* How can we take charge of our cancer care and make sure our team listens to us?
* Learning about the economics of cancer care. Frankly, my head is still spinning on this one.

If you’d like to know more, go to http://www.canceradvocacy.org. I plan to make NCCS a priority in my volunteer advocacy work and would love for you to join me!

Have a great summer!


  1. Thank you so much for letting us know about this, Patsy, and for giving us something to actually do to help get this legislation passed. And thank you for all of your advocacy work that you do!!


  2. suznb1

    The link to follow up with Senators and Representatives is not an active link.


  3. Nice post…


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