Susan Allen: Reflecting on Day 2 of the LLS Symposium in Washington DC

Good Morning North Texas LLS,

Wow, do I wish you could all be here to hear the information first hand but I am honored I get to bring it back to North Texas.  Day two in Washington DC started with Volunteer Leadership Training and, of course, our Texas volunteers were at the front table anxious to hear the latest strategies for recruitment and fundraising. It was like a think tank of all the best practices from our major campaigns that are currently used across the nation that volunteers could take back to their chapters. Without our major campaigns and their fundraising ability, our progress and future of LLS and finding a CURE would look much different.  Thank you to all of our North Texas volunteers and all you do to make LLS such a success in so many ways. Your dedication is admired and appreciated.

The lunch hour was spent listening to the story of a little boy Rhett Krawitt who was diagnosed with leukemia at age 2 and at age 6 stood on the stage yesterday and declared "Cancer Ends with Me." His father shared the story of their journey and the ups and downs of his battle.  The family relied on the statement "Gone with the Cancer", which was an obvious theme from the movie "Gone with the Wind."  (It's a family favorite as you can tell by the name Rhett.)  As his father wrapped up his portion of the program, Rhett's sister came to the stage and very proudly introduced her little brother to the stage.  Rhett, with true pride, stood before 600 of us in the audience and told us about his job of getting through the treatment and getting "the bad guys" out and finished his story by boldly stating, "Cancer, I give a DAMN!"  The audience jumped to its feet and gave him a standing ovation.

The day continued with House Majority Speaker Eric Cantor whose message was, "We cannot just be a country of good treatment, we have to be a country of CURES."  Wow, to see such an important person in our country's government speak so strongly in relation to the LLS mission was inspiring.  We spent the afternoon in preparation for our day tomorrow on the Hill.  We learned about telling our story.  As I sat at my table and listened to those around me tell theirs, I was just amazed.  There was a man who had CLL and he would not have been alive today unless he had been accepted into a three-person research study.  He was so grateful to be alive, to have his disease cured and to be in DC to tell his story to those who can make a difference for other cancer patients.

We are taking our crusade to Capital Hill and we are ready to storm the Hill!

Have a great day North Texas, I will be in touch soon.

You can read Susan's recap of the first day in DC here.

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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

Thankful Thursday: LLS Mission Days 2013

Texas Tuesday Coffee

This year more than 240 LLS staff and volunteers made their voices heard on capital hill in Washington DC on Tuesday, June 4, 2013 at the annual Leukemia & Lymphoma Society (LLS) Mission Days. With the amazing leadership of a new LLS public policy and advocacy team, LLS brought issues important to blood cancers patients to their legislatures. The goal was simple: LLS is focused on finding cures and ensuring access to quality, affordable, coordinated care. LLS has invested almost a billion dollars in research since its beginning and the recent advances in research and cancer treatment means we are living in very exciting times. However, these new and future treatments must be accessible to patients or the all the hard work will have been done in vain. That is where the work of public policy and advocacy comes in.

Specifically this year, LLS focused on making self-administered cancer treatments more accessible to patients through creating drug parity (HR 1801) and/or eliminating specialty tiers for prescriptions (HR460). What this means for patients is if their treatment is oral or self-injectable, it should be paid at the same rate as they would pay for an infusion in the clinic (parity) or they should pay the max prescription tier level of a brand name prescription, not at a specialty tier level.

How does the Cancer Drug Coverage Parity Act address the issue?

HR 1801 requires that health insurance carriers cover the cost of cancer treatments equally.  There cannot be higher costs (co-payments, co-insurances, deductibles) for prescribed medications than for therapies administered by a doctor.

How does the Patients Access to Treatments Act address the issue?

HR 460 would require insurers to charge no more than what they currently charge for non-specialty tier brand drugs.

For example, if an insurer is currently charging $30 for non-specialty tier brand drugs, and 50% for specialty drugs, HR 460 would require the insurer to charge no more than $30 for specialty drugs.

For example, Gleevec, an oral medication for CML that has changed the outcomes of this disease, is approximately $7,000 a month. 　The newly proposed legislation would protect these patients from having to pay co-insurance amounts of 30-50%, or more, which can make the drug inaccessible for many.

North Texas was proudly represented by North Texas Excutive Director Patricia Thomson of Congressman Joe Barton’s District; North Texas Patient Services Manager Kim Brown of Congressman Michael Burgess’ District; CML suvivor Britt Hemsell of Congressman Sam Johnson’s District and AML survivor Don Armstrong of Congresswoman Kay Granger’s District. This team made visits to each representative’s office. The goal was to help the representatives understand the importance of these issues and to become co-sponsors of these acts, or support them when it comes time to a vote. In addition, the North Texas team was joined by the South/Central and Gulf Coast teams in making visits to the Texas Senator’s offices. We got to meet each of the Senators, Ted Cruz and John Cornin, at the weekly Texas Tuesday coffee.

Mission Days is always inspiring and exciting. This year’s left the team even more energized in the work LLS is doing and provides hope for bridging the wonderful research that LLS is investing in with making these new treatments accessible for blood cancer patients.

You can make your voice heard by becoming an advocate for LLS. Go to

www.lls.org/advocacy