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:
Susan.Allen@lls.org
(972) 996-5905
Contact Susan:
Susan.Allen@lls.org
(972) 996-5905
