Colorectal Cancer Advocacy Leads to Progress

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Advocacy Blog
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When Molly McDonnell, Fight CRC’s Director of Advocacy, sends you a note asking if you’ll testify before the New Jersey State Senate in support of legislation that would increase access to colorectal cancer screening, you don’t say no. You may want to. You may mentally come up with 10 reasons in less than 30 seconds why you can’t do it. 

Close your eyes. Believe in the power of your story. Just do it. 

Testifying was one of the most scary, yet tremendously gratifying, experiences I have ever had.

For real: I knew at the moment Molly asked me (with a quick check of my calendar) that I COULD attend the 11am Senate Committee Meeting. But immediately after saying I would, I had cold feet. I committed, but I was terrified. 

I am an unlikely – dare I say – reluctant advocate. I am completely unfamiliar with most political processes. I mean, who wants to admit their ignorance? It’s embarrassing. 

Nevertheless, I agreed to go before the New Jersey State Senate Commerce Committee to testify in support of S2305, legislation that requires health insurers to cover colorectal cancer screening beginning at age 45 (as recommended by United States Preventive Services Task Force) and removes out-of-pocket costs for people needing a colonoscopy after a positive noninvasive screening test.

Here’s why: When you tell your story to your elected officials, the impact is far greater than random facts and statistics read from a sheet of paper. Your testimony breathes life into those statistics and reminds our elected officials that the policies before them impact real people. 

Reluctant, yet excellent, advocate

My husband, Joe, has spent the past 27 years humoring me. Joe is quiet and doesn’t say much. He is the opposite of me. And four years ago, both of our worlds got turned upside down when he was diagnosed with rectal cancer. 

At first I just asked him to come with me – to help me figure out where I was going. When he agreed, I said, “Well, if you’re going, you really need to speak as well.” He should have seen that coming. 

I told him it didn’t need to be a long speech. We had three minutes each to speak. He just needed to tell his story. I was thrilled when he gave me the short draft of his speech. This is progress! Joe was diagnosed four years ago, and until Thursday, June 7, he had never told his story to anyone.

I wrote my draft. I read it out loud (I cried toward the end, and I was OK with that because I thought it was good to get the emotion and tears out of my system). I did not get them completely out apparently.

Later that morning, we drove to the State Capitol. Between finding parking, navigating to the building, floor, hall, and then room we needed to be, by the time we got there, I already needed a nap.

As I walked into the Senate Committee Meeting room, I felt insanely intimidated and like I didn’t belong there. I just wanted to go home.

But instead of running for the exit, I persisted. The meeting was late getting started and the colorectal cancer bill was the second to last to be considered. It was going to be a long day.

Telling our story

More than two hours later, the bloom far off my bud, and it was time for the committee to consider S2305. We were called up to the dais, and a representative from the American Cancer Society Cancer Action Network (who works closely with Fight CRC!) spoke first. Next, a gastroenterologist who lost his father to colorectal shared his story. 

Then it was my turn: my testimony was a sheet and a half of paper. I read it, but looked up every so often to make eye contact. Each time I looked up, I saw the Senate Committee Members looking back intently at me. I did a great job of reading my testimony, loudly, clearly, and expressively. I was so proud of myself. Until I got to the final paragraph:

“We respectfully request you pass this bill: If Joe had been screened at age 45, we could have had a completely different outcome. Again, while we are thankful that Joe is here today, every day is a struggle. Every day cancer is on his mind, my mind, and the minds of our kids. This battle never ends: even as he is cancer free today.”

That last sentence devastated me to say out loud. “The battle never ends.” It just doesn’t.
Joe was extremely emotional as he started to read his testimony. His face was red, and he could barely speak. His voice choked with emotion. I squeezed his fingers hard to encourage him to keep going. Before we knew it, our time at the dais was over. The senators thanked both me and Joe for our bravery and for sharing the most personal parts of our lives with them.

Advocacy and attitude of gratitude

I am so proud of Joe for telling his story – and this was just the beginning – he was recently interviewed by our local news station. I am so proud of myself because in those moments of Joe and I telling our stories, I could see empathy, compassion, and caring in the faces of the senators. At Fight Colorectal Cancer, we always say, “No one fights alone.” In that moment of testifying, I felt seen, heard, and supported. 

The Committee voted unanimously to approve the bill. In the fall, the bill will need to clear another Senate Committee and be approved by the full Senate. The same process will need to happen in the Assembly, after which it will be sent on to the Governor for signature. 

There aren’t a whole lot of things I have done that I am supremely gratified by, but appearing to testify in support of bill S2305 will always be one of my proudest moments.  

While it feels uncomfortable sharing such personal details of our lives, I am 100% sure that because we did, we made a difference – a difference that may be too late for Joe – but it will make a huge difference in the lives of those who can get a colonoscopy covered by insurance at age 45, or who won’t have out-of-pocket costs if they a colonoscopy after a positive, noninvasive test.

Our testimonies will save lives. Sharing your story helps others. And when you share your stories with elected officials, they feel the impact because they now have a face with your story. It becomes “real.” They learn details of your struggles that they would have never known about had you not shared your personal story.

Say "Yes!" to advocacy

Do the thing that scares you: Say “Yes!” when someone asks you to testify before your legislature. Share your story in your local community or even among friends and family. No one else is going to do this work if we don’t. Sharing your story may not be the easiest thing to do, but it does make a difference. Plus, it’s empowering! I promise you won’t regret it!

Pro tip: Become involved with the Fight CRC advocacy community. Sign up to be an advocate to get notified about opportunities to engage in your state. There are so many ways to support the colorectal cancer advocacy community. Take action or donate. We are stronger together. We will make progress faster together. No one fights alone. 

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