Myeloma ACTION Team Needs YOU!
Make a positive impact advocating for yourself and your loved ones
By Danielle Doheny, IMF Director, Public Policy & Advocacy
My father was diagnosed with myeloma in 2012. It is hard to describe the impact that his diagnosis had on our entire family. We were overwhelmed; we were changed forever. Thankfully, we quickly found the IMF website myeloma.org, and immersed ourselves in learning about myeloma, a disease we had never heard of before. The patient and care partner education provided by the IMF not only helped ease our fears, but it also restored some semblance of HOPE.
Gradually, our family found a new “normal,” but that was only the beginning of our myeloma journey. Both individually and as a family unit, we were asking ourselves how we could make a positive impact and be of service to the larger myeloma patient community. My recurring thought was, “How can I help my dad and also help other patients like him?” I’m not a doctor. I’m not a researcher. I felt so powerless and so uncertain about what I could do to help.
But there is a way for each of us to contribute toward the overall goal of all myeloma patients and their loved ones – a cure for myeloma. My opportunity to give back to the IMF, the organization that had been so helpful to our family since the very beginning of our myeloma journey, came when I joined the IMF and its Advocacy team. I felt so overjoyed to be able to apply my skill set in a way that benefits the myeloma community!
The IMF Advocacy program trains and supports concerned individuals to advocate on health issues that affect the myeloma community. Working at both the U.S. state and federal levels, the IMF supports legislation that betters the lives of patients with myeloma nationwide. We fight for patients’ rights to have access to affordable myeloma treatments, and we help equip the patient and care partner community with the tools to advocate on their own behalf.
Becoming an effective advocate is much easier than most people imagine, and it is extremely important to the IMF that you and your family members join our advocacy efforts to advance policy priorities that support the myeloma community. It can be as simple as sharing your story with the decision-makers in your state or on Capitol Hill in Washington, DC. The policy decisions being made have an impact on nearly every facet of care that myeloma patients receive, including access to therapies and clinical trials, what Medicare and private insurers will cover, drug prices, the levels of myeloma research funding levels, and more.
The IMF’s Myeloma ACTION Team is here to help train you through webinars, virtual meetings, and written materials. You will gain a deeper understanding of the current legislative issues that have the biggest impact on the myeloma community. Decision-makers want to hear from you, and the IMF can train you to communicate your story and explain the myeloma community’s advocacy priorities to your elected officials. You may have opportunities to raise your voice via the media and by responding to “Action alerts” from the IMF.
As a member of the Myeloma ACTION Team, you can make a positive impact on important policy issues, and advocating for yourself or for a loved one is so empowering. There are many opportunities for you to be involved, and the IMF will support you with the tools and information you need to be an effective advocate. Your voices matter!
What do Myeloma ACTION Team members do?
- Participate in quarterly team calls
- Share myeloma advocacy news and alerts with your community
- Share your personal myeloma experience with legislators
- Share your experience with the IMF to help shape our advocacy policies
- Build relationships with your elected officials – the IMF will help you!
YOU can make a difference!
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 [email protected]. We welcome your engagement, questions, and ideas.
(This article was published in the 2023 Spring Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)