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This is the inaugural post for a periodic blog by Louis J. DeGennaro, Ph.D., LLS chief mission officer

 

(photo: L-R - Brian Rosen, LLS senior vp public policy; John Walter, LLS CEO; Senator John Harkin (D-IA); Louis DeGennaro, Ph.D., LLS chief mission officer; Emily Shetty, LLS senior director, legislative affairs)

 

The Leukemia & Lymphoma Society is a voice for blood cancer patients, advocating for survivors and their families to make sure they have access to quality, affordable and coordinated care. LLS CEO John Walter and I joined our Office of Public Policy staff for a day of meetings on Capitol Hill Wednesday with key members of Congress involved in shaping healthcare policy for cancer patients. This was a great opportunity for us to talk to some  influential members of Congress and let them know about important issues facing blood cancer patients in order to effect change that will help save lives and improve the quality of life for patients and their families.

 

Here are some highlights from our visit:

 

We met with Rep. Dave Camp (R-MI), chair of the House Ways and Means committee, which has jurisdiction over Medicare and all tax issues. Mr. Camp is himself a non-Hodgkin lymphoma survivor, so he has experienced the cancer journey first-hand and is a strong supporter of LLS and our mission. We spoke with him about becoming a champion for blood cancer patients, the problem of drug shortages, and the importance of preserving charitable deductions for non-profits.

 

Our meeting with Rep. Fred Upton (R-MI), chair of the House Energy and Commerce committee, which has jurisdiction over almost all healthcare issues, focused on the importance of access to essential, life-saving therapies. We discussed two bills within his committee - the Patients Access to Treatments Act and the Cancer Drug Coverage Parity Act; both of these bills will help ensure better access to care for blood cancer patients.

 

Two incredible patient volunteers from LLS’s Central Pennsylvania Chapter, Chet Szczepanski and Rick Kirby, accompanied us on another visit. This time, we met with staff from the office of Rep. Joe Pitts (R-PA), chairman of the health subcommittee on the House Energy & Commerce committee. His subcommittee has primary jurisdiction over most healthcare issues before Congress. Chet and Rick shared their powerful stories and stressed the importance of the Patients Access to Treatments Act and the Cancer Drug Coverage Parity Act.

 

Sen. Tom Harkin (D-IA), is chairman of the Senate Health, Education, Labor and Pensions committee. We spoke with him about drug pricing, the need to support increased funding for the National Center for Advancing Translational Sciences (NCATS), on whose advisory board I am a member, implementation of the Affordable Care Act (and the LLS scorecard for impending healthcare exchanges), and the Cancer Drug Coverage Parity Act.

 

All in all, it was a great day for LLS to advocate on behalf of blood cancer patients, and I know that these members of Congress heard what we had to say and were very responsive.

 

To learn more about our Office of Public Policy and how you can get involved, click here.  You can also like their Facebook and follow their Twitter pages.

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