Thursday, June 20, 2013

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

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