The International Myeloma Foundation (IMF) advocates on behalf of patients affected by multiple myeloma. We advocate to insure an increase in accessibility to high-quality diagnostics and treatments, for funding of myeloma-related research, and to end insurance coverage disparities for treatment. The IMF works with the entire myeloma community in these efforts and continues to expand its commitment to empower patients, families, and friends.
In 2014, the IMF strengthened a network of international advocates to address global advocacy issues; and in the US, made headway on legislation to increase myeloma patients’ accessibility to oral anticancer medication. This was accomplished through both federal- and state-level legislation, and increased legislators’ awareness of myeloma, while furthering the national dialogue on myeloma.
International Advocacy Efforts
The Global Myeloma Alliance Network brings together advocacy leaders in myeloma and blood cancer to mobilize the myeloma community to improve the lives of patients around the world. GMAN is a patient-driven collaboration of organizations and individuals active in the field of myeloma. GMAN members come together to share best practices, elevate global awareness of myeloma, and improve patient outcomes through earlier diagnosis. In addition, GMAN focuses on better access to treatment and advancing innovation in blood cancer through clinical trial engagement.
US Advocacy Efforts at the Federal Level
The Patients Equal Access Coalition (PEAC), founded by the IMF in 2010, is a partnership that has grown to 29 organizations representing patients, healthcare professionals, care centers, and industry, dedicated to the rights and care of cancer patients. During the 2014 fiscal year, this collaboration, which aims to ensure equal access to approved anticancer regimens nationally, supported introduction of the Cancer Treatment Parity Act (S. 1879) in the Senate.
Many patients have unmanageable out-of-pocket expenses for prescribed oral anticancer medication; S. 1879 and companion House bill H.R. 1801 will ensure patients have equal and appropriate access to all cancer treatments (both oral and intravenous), by equalizing the patient’s out-of-pocket cost. PEAC identified two Senate sponsors, Senator Al Franken (MN) and Senator Mark Kirk (IL), who introduced S. 1879. Prior to its introduction, the IMF led an effort to analyze the Senate bill, researched and drafted several substantive changes, and facilitated a process to reach consensus on each proposed change among PEAC coalition members.
US Advocacy Efforts at the State Level
The IMF formed the State Patients Equal Access Coalition (SPEAC) in 2012 to work collaboratively at the state level to ensure that cancer patients have appropriate access to a broad range of approved and medically accepted anticancer regimens. SPEAC includes 25 organizations representing patients, healthcare professionals, and cancer care centers. SPEAC has worked to ensure the passage of oral anticancer treatment legislation at the state level.