On June 13th, several leaders from Cancer Support Community (CSC) and Gilda’s Club (GC) affiliate locations across the United States joined the Cancer Policy Institute for a visit to Capitol Hill. The CPI team and visiting affiliates had dozens of meetings with legislators, staff, and committees to introduce them to the mission and impact of CSC/GC, and to emphasize the continued need for more focused efforts around incorporating social and emotional screening and support throughout the cancer care continuum.
The goal of these particular visits was to gain support for the Patient Experience in Research Act (PERA), or H.R. 2244, introduced by Reps. Diana DeGette (D-CO) and Leonard Lance (R-NJ) in April, 2017. The legislation would create a voluntary pilot study through the U.S. Food and Drug Administration (FDA) to incentivize up to three pharmaceutical manufacturers to incorporate distress screening and support services into the clinical trials process. Michelle Johnson, President of CSC Cincinnati/Northern Kentucky, Mirchelle Louis, CEO of CSC Northern Texas, and Sandy Obodzinski, President and CEO of Gilda’s Club Middle Tennessee, shared stories from their affiliate locations with Members and staff, and explained why their support for PERA and expanded social and emotional support matters.
Each of these leaders work with patients in a different state, come from different backgrounds, and have different experience, but all three work to effectively use their platform to advocate on behalf of the millions of cancer patients and survivors. Each took time after the day on the Hill to reflect on their experiences and lessons learned:
Q: What did you find most interesting/productive/helpful about your experience meeting with Representatives and Senators on Capitol Hill?
We have this incredible gift. Donors provide support so that we can bring researched based programming that changes people’s lives and to have the opportunity to share that impact so that change (for the better) can occur is powerful. It’s another way we can make a small difference in the big challenge we face – people are depending on us. Bringing together the program impact for people/families, research, legislation, and policies to improve the care delivery – it’s a collision of specific strengths helping push our common cause in the right direction.
You have to strike a chord with their staffers – they will be really important in making anything happen. The offices are very busy - you may get to have your meeting in the hallway outside the office!
I so appreciated the opportunity to illuminate the Gilda’s Club mission and our impact in the community. Through sharing our member stories, I made the concept of cancer support real and meaningful. That was very fulfilling.
Q: What is one tip or piece of advice you’d like to share with others who are interested in becoming an advocate?
Get to know the information and data and make it your story. The story that represents the community we serve. We have the passion, we have the data, we have the conviction and be open to ALL possibilities and opportunities that my happen when you get involved.
Enjoy the experience – you get a great look at how things happen (or don’t!). It’s great to get the information from our Policy folks ahead of time and to be able to rely on them to fill in the details so that you don’t feel overwhelmed.
Be assertive and prepared with the questions you want to ask and the information you want to share. This will help develop the relationship for the long term, beyond the policy issue at hand.
Each month, the Cancer Policy Insitute will be profiling advocates who have been engaged in advocacy in their home state, their community, with elected officials, and more. If you are interested in learning more about policy, advocacy, and ways to get involved, sign up to be a part of the Grassroots Network!