As the Bill Turns…Episode 6: Federal Addition

This summer, the Myeloma ACTION Team challenged themselves to meet with twenty federal legislators to ask for support of H.R. 1801, the Cancer Drug Coverage Parity Act. Halfway to our goal, we wanted to share with you our progress.

In California: Anthony Sibert met with Congressman Mark Takano’s aide in Riverside, California and shared the stories of his support group members who had unaffordable copays. We were pleased when two days later the Congressman not only co-sponsored H.R. 1801, but also agreed to speak at Anthony’s support group meeting.

Sen Kirk Meeting 2In Illinois: Kathie Thorne along with patient advocates from the Lymphoma Research Foundation and the National Brain Tumor Society met with Senator Mark Kirk’s aide Robert Johnson asking the Senator to be a lead sponsor for the Senate companion bill to H.R. 1801. “It was my first time in a meeting with a decision maker,” shares Kathie. “It was wonderful to hear passion for helping cancer patients have access to the treatments they need from a core member of Senator Kirk’s team. I hope Senator Kirk will be a powerful leader for this legislation and I was glad to be able to share my story and that of all myeloma patients to hopefully solidify his support.” We thank Kathie and the 200 Illinois advocates whose postcards of support she delivered in her meeting!


In Kansas: The team in Kansas did an amazing job collecting postcards, so when Cindy Ralston delivered them to Senator Moran’s health aide, he was very impressed with the number of folks who had taken a moment to share their support for equal access to treatment. Cindy says when speaking about this issue with legislators and staff that making them aware that this not just about today’s treatment, but those coming down the pipeline.

DIn Ohio: Advocacy Liaison Barb Sarbaugh from the Cincinnati support group has done an amazing job getting the whole group involved in advocacy. And when she asked for volunteers to conduct district visits, it was a wonderful surprise when two members of her group had personal relationships with their Representative. Hugh and Marie Schaffer’s neighbor just happens to be Representative Steve Chabot. He was receptive to the information they presented and took time to research the bill in advance of their meeting by speaking with lead sponsor Rep. Higgins the previous day in DC.

Judy Lewis and HusbandIn South Carolina: Judy and Jim Lewis had a great meeting with Rep. Mick Mulvaney where Jim shared about his myeloma and traded stories of his time in the Air Force with the Congressman. Rep. Mulvaney had never heard of myeloma and was interested to learn more about it and if Jim’s time in the military contributed to the myeloma.

Tom and JerryIn Virginia: The famous Tom and Jerry from the SEVA support group have volunteered to work with all support groups in Virginia to get the entire delegation to support H.R. 1801. They have spoken directly with both Congressman Scott Rigell and Bobby Scott to ask for support. Tom and Jerry have dedicated themselves to consistent follow up to make sure the Congressmen do not let H.R. 1801 fall off their radar.

Picture with Congressman Petri 9-5-2013In Wisconsin: West Bend support group members Dick Skalitzky and Emory and Doris Luger attended a town hall meeting with their Rep. Tom Petri to discuss H.R. 1801. This was a great opportunity to not only educate the Congressman on the issue, but also make everyone in attendance aware how this bill will help cancer patients. The three friends said they enjoyed helping out in this way and look forward to the next opportunity to lobby their legislators on behalf of myeloma patients.

You can help support these and more in district meetings by asking your representative to support H.R. 1801. Click here to take action now!

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