Friday, May 9, 2014

Susan Allen: Reflecting on Day 3 of the LLS Symposium in Washington DC

Hello North Texas LLS,

Wednesday was the most important day of our trip. We were going to Capital Hill to make a difference for cancer patients. We as a group, had 352 visit’s scheduled to both senators and representatives in Congress. Each visit was important because we would  share information about two bills that impact cancer patients and their access to life-saving medication.

To start our day off we had the pleasure of hearing another amazing survivor story and how she was using her story to raise awareness about blood cancers.  Her name is Sadie Floyd and she battled ALL as a child and then went on to become a race car driver. She uses her status as a successful race car driver to display an LLS sticker on her car.  It became a platform for her to tell her story about the moment she heard the words, "you have cancer."

Congresswoman Anne Eshoo then spoke to us about the power of advocacy and how what we were about to do was important. Each year 25,000 bills are introduced into Congress and only 300 of them make it to become laws.  It drove home the fact that we needed lawmakers to hear our voices. We had been carefully trained by the LLS Office of Public Policy on exactly how the meeting structure would be and what an important role we each played at the meeting. I had the job of being both a patient and as an LLS Patient Access Manager.  I used my story and that of those who I've met in my position with LLS to talk about what resources and information patients need.  The other members of the group had the responsibility of sharing the data and importance of what our request was at each meeting. We needed these meetings to result in awareness and support of the bills that would directly effect our patients. 

We met with a lot of political staff member’s if the actual representative wasn’t available. These staff members were young people whose job it was to carry our message to their boss and it was refreshing to see them vitally interested and asking questions. We did have the pleasure of meeting with the oldest member of Congress, Ralph Hall, who happens to be my representative. He invited  all five of us into his office to sit on his blue leather furniture and make ourselves at home. He wanted to know what we needed from him and listened intently to Kim Brown and Tim Durst share our requests and without much hesitation he signed on to Co-Sponsor the bill. Thank you Ralph Hall, I always knew you were a good guy!!!!

The day started at “The Hill” with all 600 LLS advocates on the steps of the Capital taking a picture with our hands up stating “Cancer Ends With Me” and we ended with tired feet, from all the walking and a great sense of accomplishment. Let it be said that when LLS speaks, Congress listens.

Just like the last three days where we had the pleasure of hearing special survival stories, our last night there when we met at Union Station to celebrate the day, was no different. Chip Esten who stars in the TV series Nashville mingled with us, took pictures with us. He told us about his daughter Addie and how she had battled ALL as a two year old and LLS had been there for them. He and his family live in Nashville and are very connected to the Nashville Chapter.

The last three days have been an LLS whirlwind but an amazing look into the depths of LLS and what our mission “Finding a cure for Blood Cancers and improving the lives of Patients and their Families” really means.  LLS leaves no stone unturned from looking for the cures in laboratories to improving lives on the Hill and all the people working together in middle.

I want to savor the last three days and I want some of you to have the opportunity to experience and LLS Mission Day’s so you can tell your story. LLS takes paid employees and so many volunteers to make it all work. Consider using your voice, talent and skill to partner with us going forward, it takes us ALL to make it work.

Thank you for taking this trip with me and now I return to my office and welcome hearing from you all.


Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
(972) 996-5905

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