Advocacy: Building Relationships, Fostering Awareness, and Promoting Change

Heather Hylton, MS, PA-C

In September, ASCO held its 2018 Advocacy Summit on Capitol Hill. More than 100 advocates across 30 states joined forces to speak to Members of Congress and their staff on several key issues:

  • Clinical trials access for Medicaid patients

  • Removing barriers to providing patients with the right therapy at the right time

  • Mitigating administrative burdens for patients and clinicians

  • Robust funding support for the National Institutes of Health and the National Cancer Institute

Why is this work important?

Advocacy is about building relationships, providing the constituent’s perspective on proposed and existing policy, and speaking to the changes that we would like to see. Many organizations, including ASCO, have exceptional policy experts on staff who work diligently to advance legislative priorities and ensure members of these organizations have awareness of key policy issues affecting their patients and their practices.

Where we, as citizen advocates, can have our greatest impact is amplifying this work through focused conversations with our elected officials and their staff on how a particular issue is affecting or could affect their constituents. What resonates most is sharing specific examples—this narrative helps make an issue personal and tangible—and something the elected official should care about.

If not you, who?

 Lawmakers are responsible for having knowledge on an extensive range of subject matter areas. In Congress, few Members come from a healthcare background yet they are charged with the great responsibility of making sound decisions when it comes to healthcare-related policy matters.

With this being the case, what better resource could elected officials have than constituents working directly in the trenches of healthcare? There is no surrogate for this kind of expertise.

According to the Congressional Management Foundation, relationships are vital: 62% of congressional staff surveyed felt establishing a relationship with the District or State Director was important while nearly 80% felt advocates should establish a relationship with the legislative assistant who has jurisdiction over a specific issue area. Further, more than 90% of congressional staff surveyed reported that direct constituent interactions, either in the district office back home or in Washington, DC, have significant influence on lawmakers’ decisions. In fact, these direct interactions have been identified as being more influential than any other communications strategy.

The seat at the table

As with any kind of decision-making, we often feel challenged when we are not able to have a seat at the table or opportunity to provide input on a particular issue, especially when those making the decisions are far removed from the matter at hand.

Shirley Chisholm, former Member of Congress who made a presidential bid in 1972, once said, “If they don’t give you a seat at the table, bring a folding chair.” Advocacy work allows each of us to take a seat at the table in some way and serves as a tool to help move forward the change we want to see.

Advocacy work is something we can all do, and no experience in this area is required to have a meaningful impact. ASCO has resources available to assist advocates in preparing for conversations with elected officials and their staff at both the local and national level.

With the 116th Congress starting its work on January 3, 2019, there will be a great need to highlight issues affecting our patients and practices, and every voice will be essential to ensure our patients’ access to high-quality cancer care.

More information on ASCO’s Policy Priorities can be found here.

(L-R):  JOP  DAiS Editor Steve Lee, MD; Manish Shah, MD, FASCO;  JOP  DAiS Editor Heather Hylton, PA-C; Kristina Novick, MD; and Sanjay Goel, MD, are pictured at ASCO’s 2019 Advocacy Summit.

(L-R): JOP DAiS Editor Steve Lee, MD; Manish Shah, MD, FASCO; JOP DAiS Editor Heather Hylton, PA-C; Kristina Novick, MD; and Sanjay Goel, MD, are pictured at ASCO’s 2019 Advocacy Summit.