In response to IWMF members who have indicated an interest in advocacy work, the IWMF established a new US advocacy plan in 2017. Through this plan, we recommend that our US members advocate and respond to US Congressional bills of particular concern to them, the WM patient community, and the IWMF. These could include, among others, bills dealing with insurance coverage of cancer therapy in all forms – intravenous, injectable, or oral; acceleration of drug approval for new therapies; and oral parity under Medicare for all forms of cancer therapy.
To implement this plan, the IWMF has partnered with the Leukemia & Lymphoma Society (LLS), the Lymphoma Research Foundation (LRF), and the National Organization for Rare Disorders (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. They all send out appropriate advocacy alerts that affect WMers. In addition, the IWMF may periodically post items of particular importance on IWMF Connect or the IWMF Facebook page.
You can sign up to receive advocacy alerts at any or all of our partners’ websites:
The Leukemia & Lymphoma Society advocates public policy positions that accelerate progress toward cures for leukemia, Hodgkin and non-Hodgkin lymphoma, and myeloma and that improve the quality of life of those with blood cancer, along with their friends and families.
Many people think that they must travel to Washington, DC, to make their voices heard by our lawmakers, but in reality, they are more concerned about what you are saying than where you are saying it. That is why the Lymphoma Research Foundation (LRF) Advocacy Program makes it simple for you to communicate with the people who set policy and make laws – all from the comfort of your home or office.
For more than 30 years, the National Organization for Rare Disorders (NORD) has led the way in voicing the needs of the rare disease community, driving supportive policies, advancing medical research, and providing patient and family services for those who need them most. NORD works closely with advocacy partners on the federal and state level to encourage policies that are supportive of the needs of rare disease patients and their families.
We encourage you to take timely action when you receive advocacy alerts from our partners. Make sure your voice is heard!