Join Us and Become an Advocate for the Myeloma Community!

By Danielle Doheny IMF Director, Public Policy & Advocacy

Advocacy is one of the International Myeloma Foundation’s four founding pillars, along with Research, Education, and Support. The IMF’s Advocacy program has helped fund cancer research that has led to new treatments, expanded access to therapies, and ensured that the perspective of the myeloma patient is considered by policymakers in their decision-making process. The IMF and our team of volunteer advocates have been leaders in the patient advocacy space for many years, and in this edition of Myeloma Today, we would like to share the achievements we have attained along the way and to invite you to join our efforts.

Affordable access to care

Throughout the history of the IMF’s Advocacy program, we have maintained a commitment to help ensure affordable access to care. The IMF launched the Patients Equal Access Coalition (PEAC) and the State Patients Equal Access Coalition (SPEAC) to bring together stakeholders in the advocacy community, including organizations representing patients across all cancer types, healthcare providers, and healthcare-focused industry partners. In the early 2000s, working in coalitions was still a novel approach to advocacy that today has become commonplace. Starting with Oregon in 2008 and most recently with Arkansas in 2017, these advocates were able to get laws on the books in 43 states that protect patients who are prescribed oral drugs instead of intravenous medication.

PEAC and SPEAC have evolved since the early days. These two coalitions are now combined into one – the Coalition to Improve Access to Cancer Care (CIACC) – and the IMF is working to pass a federal law to help individuals with federally regulated insurance and to address the remaining 7 states whose residents still do not have parity in coverage of their oral drugs.

Investment in myeloma research

Promoting investment in research is another top priority for the IMF Advocacy team. The IMF has long been a leader in efforts to increase funding for government programs that support cancer research, prevention, and awareness. In 2002, the IMF’s co-founder Susie Novis Durie testified in front of the Senate Appropriations Committee to advocate for cancer research funding. Susie’s inspirational testimony described the nature of myeloma, her husband’s journey with the disease, and the sense of community they were able to form with the founding of the IMF.

For decades, the IMF’s Chairman and Chief Scientific Officer, Dr. Brian G.M. Durie, has worked toward a cure for myeloma. The IMF’s Advocacy team continues to push for robust funding through the One Voice Against Cancer coalition, which advocates for increased funding for cancer research at the National Institutes of Health’s National Cancer Institute. Since myeloma is a service-connected illness, the IMF has also advocated for myeloma research to be included in the Department of Defense (DoD) Congressionally Directed Medical Research Program (CDMRP).

Increasing awareness of myeloma

The IMF also advocates for increased awareness of myeloma. Our efforts began with advocates working with their local governments to secure proclamations declaring March as “Myeloma Action Month,” and today we have expanded our awareness activities to include working with Congress and the Centers for Disease Control and Prevention (CDC).

Access to clinical trials

The IMF is also actively working to improve access to clinical trials, and to make the voices of myeloma patients and their care partners heard during important policy debates related to healthcare. From the passage of the Affordable Care Act, to the recently passed Inflation Reduction Act, which includes provisions that will help cap what Medicare patients pay out-ofpocket for their drugs, the IMF has been integral in influencing public policy on behalf of myeloma patients.

Join the Myeloma ACTION Team!

Together with our volunteer advocates, the IMF is committed to continuing to grow this strong legacy. The Myeloma ACTION Team – also known as “Advocates Committed to Inspiring Others Nationwide!” – works together to strengthen support for legislation, build strong grassroots networks, and raise awareness of issues that affect myeloma patients. Individuals like you have helped advocate for increases in cancer research funding, ensuring that myeloma-specific research continues, oral drug parity, access to clinical trials, healthcare parities, COVID-19-specific advocacy initiatives, and veterans’ issues. MT

To learn more about the IMF’s advocacy activities or to contact your legislators directly, visit advocacy.myeloma.org

To subscribe to the IMF Advocacy Newsletter, visit subscribe.myeloma.org . To learn more about how you can help, contact us at advocacy@myeloma.org . We welcome your engagement, questions, and ideas.