Patient Advocates Meet with Legislators
YOU can help ensure that research of myeloma and other cancers receives adequate funding
By Emma Hatcher, IMF Global Vice President, Patient Engagement & Advocacy
Have you ever thought about how you can help ensure that cancer research will receive adequate funding? Every day, individuals and organizations across our country take on this crucial mission, including the International Myeloma Foundation (IMF) and our dedicated patient advocates. Daily, the IMF Advocacy team is working to represent you on Capitol Hill, but it’s your voices that truly make a difference. That’s why we’re asking people like you to join us.
In March 2024, myeloma patient advocates and IMF support group leaders Michael Riotto and Tony Newberne joined the IMF Advocacy team in Washington to present to legislators the need for increased cancer research funding. Before I dive into our advocacy experiences, let me provide some context on why this research is essential. Myeloma research is vital because it helps scientists and clinicians to understand this disease better and find improved treatments.
By studying myeloma, scientists can develop personalized treatments and enhance early detection methods. The more we learn, the better chance we have of developing effective therapies, improving the quality of life for myeloma patients, and ultimately finding a cure. However, if we are not vocal in asking for support, the government may not fund this critical research.
Advocating on Capitol Hill is a powerful and impactful experience. Walking through the historic corridors, there’s a sense of purpose and urgency as you engage with lawmakers to emphasize the critical need for cancer research funding. Our main goal as advocates is to humanize statistics for lawmakers and show them the real-world impact of cancer on individuals and their loved ones. The meetings with senators and representatives become a platform to articulate the importance of robust funding of cancer research, driving home the message that increased support is not just an investment but a lifeline for so many individuals.
The IMF often works on issues specific to myeloma patients, but we also collaborate with larger groups to increase cancer research funding overall. Collaborating with fellow advocates and organizations amplifies our impact, demonstrating the strength of a united front.
Tony and Michael joined the IMF Advocacy team as patient representatives for the One Voice Against Cancer (OVAC) Hill Day. OVAC is a coalition of more than 50 groups representing millions of cancer patients, researchers, providers, survivors, and their families. Together, we advocate for increased funding for the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and the National Cancer Institute (NCI). These organizations are crucial for myeloma patients as they provide essential research, surveillance, and resources to advance understanding, treatment, and management of this cancer.
Yes, your voice is already represented on Capitol Hill by the IMF Advocacy team. But you can get involved, too! Your voice is of vital importance. It is advocates like Tony and Michael who truly change the hearts and minds of legislators. The IMF is working to bring this opportunity to more people, and we would love to have you join us.
The more people who share their stories, the greater our chance will be to make positive changes. To make a difference, you don’t even have to come to Washington like Michael and Tony. You can make positive changes by sending emails to legislators or meeting with them locally or virtually. If you’re interested in joining us in our advocacy work as we continue to foster the engagement of myeloma patients and their loved ones, please email me at [email protected].
Visit advocacy.myeloma.org to read about the IMF’s advocacy activities and subscribe to the IMF Advocacy Newsletter at subscribe.myeloma.org.
(This article was published in the 2024 Spring Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)