Stormin’ the Capitol: Advocacy Day on the Hill

I have never been very political, but I think I am a good citizen. Until recently, I did not think that I had enough expertise to advocate for a change in public policy. I did not think that politicians would want to hear anything that I had to say. Still, I knew that I wanted to promote change, especially because of my personal experiences.

Not Just a Number

I am a cancer patient. I was diagnosed with pancreatic cancer in 2004. Only 5% of pancreatic cancer patients survive five years after their diagnosis. I am one of the lucky ones.

We all know someone who has been affected by cancer. You may have a friend whose parent was diagnosed with cancer. You may have a parent who has been diagnosed with cancer, or you may know someone who has passed away from cancer. Many organizations provide valuable support and resources for patients and their families struggling with cancer issues.

Pancreatic cancer has had high visibility in the media, especially since Randy Pausch and Patrick Swayze made national headlines. Pausch, author of The Last Lecture, appeared on The Oprah Winfrey Show. He passed away from pancreatic cancer on July 25, 2008. Swayze, an actor best known for his role in the movie Dirty Dancing, was diagnosed with pancreatic cancer in March of 2008. Swayze also passed away on September 14, 2009.

Unfortunately, lack of federal funding has delayed the research needed to create early detection tests for pancreatic cancer. According to the Pancreatic Cancer Action Network (PANCAN), there has been “little change in the survival rates in the last 30 years and yet the National Cancer Institute (NCI) is currently spending just 2% of its budget on pancreatic cancer research.”

Why I Went to Washington

When my friend Carolyn, a fellow survivor, asked me to attend the Pancreatic Cancer Action Network’s Advocacy Day in Washington, D.C., I decided to go. I wanted to use my personal experience as a cancer patient to be involved and to change the statistics. Maybe I did have something to say!

Once I arrived in Washington, I knew that I was not alone. There were over 460 volunteers who came to storm Capitol Hill on March 31. Many had lost a loved one to pancreatic cancer. All of us had a story to tell. I finally realized why I was there—I needed to speak for all of those who couldn’t—those who did not survive this deadly illness.

Advocacy Day 101

The day before our scheduled appointments on Capitol Hill, we went through an intense day of training. We found out that during the course of one year, more than 10,000 advocacy groups try to promote bills or increase funding for their causes.  During the training, we were told to tell our story and ask for support or co-sponsorship of House Bill 745: Pancreatic Cancer Research and Education Act.

Stormin’ the Hill

On Tuesday, March 31, we boarded buses to take us to Capitol Hill. As we reached the Capitol, our purple buses got lost in a sea of buses. There were several groups besides ours on the hill that day.

Many people don’t realize that Capitol Hill includes several buildings. There are three House buildings on one side of the U.S. Capitol and three Senate buildings on the other side. It’s a good thing I wore my walking shoes! It is a 20-minute walk from one side to the other. It seemed as if we were running back and forth across the Capitol steps all day long!

In the House (and the Senate)

We went to the House side first. The buildings seemed old and the architecture was beautiful. Some offices were so small that it was difficult to cram all eight of us into them. The House buildings were connected by an underground hallway. We ate lunch in the House of Representatives cafeteria. (The food was very good.)

The Senate buildings were more modern. They looked very sleek. When we were on one of the top floors, you could look down into the lobby. It seemed that there were miles and miles of glass and marble. The Senate buildings were also connected by an underground tunnel. Every once in a while a buzzer would ring. That was when there was a vote, a quorum call, or committee activities. It sounded like a loading dock!

We were told the day before that we would probably meet with the legislative health assistant for each representative. As we met with assistants on both the House side and the Senate side, the assistants were very interested in our stories. They asked good questions about pancreatic cancer. They all took notes to share with their bosses. They seemed very willing to listen. After all, we were the constituents.

We Shouted and They Listened

Besides those of us who stormed Capitol Hill, PANCAN had organized a National Call-In Day. Before Advocacy Day, there were just over 45 co-sponsors of the bill. After an intense day when more than 1,000 people called in to their senators and representatives to support our requests, there are now close to 100 co-sponsors of Bill HR745!

I Did Make a Difference!

I still don’t consider myself very political. But I do feel empowered that I could tell my story and make a difference. As our advocacy trainers stated, “You will be writing history just because you showed up!”