In response to IWMF members who have indicated an interest in advocacy work, the IWMF established a US advocacy program in 2014. Through this program, we assist our US members to become advocates by sending them email alerts to recommend that they respond to US Congressional bills of particular concern to WM patients and the IWMF. These could include items such as insurance coverage of chemotherapy in all forms – IV or pills, acceleration of drug approval for new WM therapies, and oral parity under Medicare for all forms of chemotherapy.
To implement this program, the IWMF has partnered with the Lymphoma Research Foundation (LRF), the Leukemia and Lymphoma Foundation (LLS), and the National Organization for Rare Diseases (NORD). These organizations have advocacy departments with staff who work in Washington, DC, and who monitor US House and Senate legislation needing support from cancer patients.
In addition, we have an IWMF Advocacy Committee that reviews all bills in Congress to select those of great importance to WM patients and the IWMF. The Committee tracks the progress of these selected bills, and when they appear on a Congressional Committee’s agenda for consideration, an alert is sent out from the IWMF Office to all US IWMF members. The alert asks members to push for passage of the bills through emails, letters, or phone calls to their individual House and Senate members. These alerts contain information about the particular bill under consideration and why it is important to us.
While our partner organizations cover advocacy for many different cancers, our alerts will focus specifically on those bills that would affect WM patients. We encourage you to take action when you receive IWMF Advocacy Alerts. Make sure your voice is heard!