IMF Grassroots Patient Advocacy
YOU can help drive meaningful change for patients with myeloma
By Emma Hatcher, IMF Global Vice President, Patient Engagement & Advocacy
Every day, critical healthcare issues are discussed on Capitol Hill, in the White House, within federal agencies, and by state and local decision-makers. The individual advocacy of our patients, family members, care partners – and collective advocacy of our community – is a critical mechanism to influence the actions of Congress and of other key decision-makers. Elected officials depend on hearing from voters to shape their policy perceptions. They also rely on subject-matter experts to know how policy will affect real patients.
In our democratic system, all citizens have the right to advocate. As constituents, the myeloma patient community is an indispensable part of this democratic system. This means that patients with myeloma and their care partners are uniquely qualified to speak to their elected officials about their experiences, challenges, and the impact that policy decisions have on them and the many others in the U.S. whose lives are touched by myeloma.
The power of grassroots advocacy
Patient advocates are more powerful than they realize when it comes to influencing members of Congress and other decision-makers. Patients and care partners carry more weight when it comes to the actions by an elected official because community advocates consist of actual constituents.
In 2015, a study by the Congressional Management Foundation (CMF) asked offices on Capitol Hill for the most meaningful ways to move the needle on an issue. Seven of the top 10 responses related specifically to hearing from their constituents.
The Congressional Communications Report found that congressional staff see constituents as the most “valuable source of information,” followed by white papers, lobbyists, inside-the-beltway publications, and survey and poll results.
The voices of individuals living with myeloma can have far-reaching positive impacts by providing policymakers with the information they need to make decisions and, in turn, influence legislation and regulations.
Your voice is needed
Even policymakers who want to do right by patients cannot do so without the right information. In 2011, Dr. Donald Berwick, former Director of the Centers for Medicare & Medicaid Services (CMS) said: “There are too many examples that show how our system can fail to meet patients’ needs. These problems are not a reflection on the many doctors, nurses, and other professionals who work tirelessly to deliver the highest quality care they can. Instead, they reflect a delivery system that’s not always designed with the patient in mind.”
Advocacy is crucial to the IMF’s mission to improve the quality of life of myeloma patients while working toward prevention and a cure. In the U.S., the IMF’s advocacy priorities fall into four major categories: (1) providing a voice for patients with myeloma, (2) ensuring access to care, (3) expanding screening and diagnosis, and (4) supporting research and emerging therapies.
In 2024, the IMF is focusing on our Grassroots Advocacy Program as a critical component to the success of our policy agenda. As myeloma advocates, we recognize the invaluable role of the patient voice in shaping policies and influencing change. Our comprehensive program will be comprised of an engaged, trained, and activated team of patient advocates.
These grassroots advocates will serve as the local voice to policymakers, play a crucial role in advocating for legislative and regulatory issues at both the state and federal levels, and ensure that the voice of myeloma patients is not just heard but holds the power to drive meaningful policy change.
Core activities
The IMF is connecting with the many local myeloma support groups across the U.S. for the following:
- Insights – Provide an ongoing, formalized cadence of listening sessions to gain feedback and insights on priorities, challenges, and a real-time understanding of myeloma patient experiences.
- Training – Recruit and train dedicated patient and care partner volunteers to become grassroots advocates. Develop and disseminate educational materials that explain key policy issues, legislative developments, and advocacy goals to community members.
- Engagement – Provide ongoing policy and advocacy-focused educational work shops and webinars to empower advocates with the knowledge and skills needed to effectively communicate their stories and concerns to policymakers.
- Interaction – Organize meetings between advocates and policymakers, includ ing visits to legislative offices, to share personal stories.
YOU can be part of the inaugural group of patient advocates who will help chart the future by advancing the IMF mission through advocacy. Contact us at [email protected]. We welcome your engagement, questions, and ideas. MT
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 Winter Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)