I started working for the American Cancer Society in February 2014. In September of that same year, I recall seeing photos of our National Lobby Day in Washington, D.C. on our Intranet and social media pages. I remember thinking how cool it was, and that I would want to attend that event one year.
At the time, I had a very basic level of knowledge around politics, but I had ZERO idea how lobbying worked. I don't know that I had any idea who my local or federal legislators were, but I doubt I did. But what I DID know was that my dad was in his battle with lung cancer, and I was very quickly learning how important it was to have access to healthcare, and for research to be funded.
Over the next ten years, though, I certainly had a deep dive into politics and lobbying. I learned that oral chemo was not equally covered by insurance compared to IV chemo. Since my dad was on an oral chemo drug that was saving his life, that became a fight I was not going to quit. I wrote letters and emails to my various reps over the years, made phone calls to their offices, and attended our local state wide Lobby Day where I spoke one on one to legislators about my dad's story. I shared my story on social media and with my health sytem accounts that I worked with, getting them to join me in the fight. In recent years, I even testified at committee hearings. Four of them, to be exact.
My dad passed away in 2018, and that just made my passion all that stronger. I was MAD that I lost him. I was MAD that our government had so much power over our healthcare, and I was ESPECIALLY MAD that they KNEW oral chemo parity would save lives but they weren't doing anything about it. (I'm getting mad just thinking about it).
Finally, in 2023, we passed the bill and it was signed by our Governor. It remains my proudest moment at work.
But oral chemo parity is not the only fight we're fighting for cancer patients. There are so many more- keeping the Affordable Care Act, insuring Biomarker testing is covered, increasing tobacco tax and the funding that goes to tobacco cessation, etc.
So, while I was passionately fighting for oral chemo over those ten years, every September I would see photos of our National Lobby Day. Volunteers from every single state gathered to talk to congressmen and congresswomen about protecting cancer patients. And every September, I felt that same ache of wanting to be there.
This year, I nudged my manager about it, and she wholeheartedly agreed that I should go. My leadership ensured I got a spot. I was so excited. But also, so scared. I knew I would be somewhat out of place. Even though I had been fighting alongside all the volunteers, I wasn't a volunteer. Plus, I had never stepped foot in Washington DC before.
But alas, I boarded a plane last Sunday and was on my way. And truly, it was one of the most incredible experiences I have had in my role at ACS. Our days were full of inspiration, and FUN. The night before our visit to Capitol Hill, we had a big ole dance party. And I was on the dance floor the entire time. I love to dance, but dancing in front of colleauges and volunteers is not something I ever thought I'd do. But I just did it. And had so much fun.
The next morning, we were off to Capitol Hill. We met with both the Senate and the House. We talked to legislators (primarily staff, because, you know, Congress is just a little busy) about two things: 1) Supporting the HIGHEST POSSIBLE funding for cancer research. 2) Supporting the passage of the Medicare Multi Cancer Early Detection Screening Coverage Act. The MCED is set to be approved by the FDA in 2028, and we want to ensure that when it's ready, Medicare will cover the test so that older Americans have access to this early detection screening blood test.
Our meetings were all successful- we got a little lucky that way that all of our legislators are supportive. We had some great conversations and each of us were able to share our stories with the office that is our District. (For example, I am in District 11, and my Congresswoman is Haley Stevens. We met with her Cheif of Staff, but I was able to share my story in this meeting since I am the constituent). Curious what I said? Since these meetings are quick, I had to cliff notes it, so I said
"My son, Zackary, never got to meet my dad. But I do hope that one day I can tell Zackary that my dad's story helped pass bills that saved lives. My dad died from stage 4 lung cancer in 2018, he lived nearly 5 years which is unheard of for his diagnosis. But he lived that long because of research. Research led to treatment which kept his cancer at bay for him to make memories with us. One of the last things my dad said to me was that he hopes the researchers find a cure for this. But they can't find a cure if they don't have the funding to do it. Lives are at stake".
It was wildly cool to see 750 volunteers and staff walking around Capitol Hill having very important meetings!
After our meetings were done for the day, we had a very short break (our only break in the four days) before a team dinner and then we headed off to Constiution Gardens for Lights of Hope. Lights of Hope is an event where the volunteers have white bags with candles inside. The bags are decorated with loved ones names on them. Some who we have lost, some who are still fighting. In the 10 years I have been waiting on the sidelines watching Lobby Day and Lights of Hope happen, I have had a bag with my dad's name at the event. I donate to someones campaign to get it there. This year, I raised $500 and friends and family could tell me the names THEY wanted. I also gave some $ to have my own bags.
There were 15,000 bags laid out on Tuesday night. Luckily they are divided by state which makes it easier to find your bags. I first found my moms, who has just finished kicking cancers butt. After a few more minutes of searching, I found my dads bag. It was especially ironic that he was right next to Matt, my brother in law's brother who passed away in 2021. I am certain they are together in Heaven.
And when I tell you I burst into tears, I am not exaggerating. I truly was not expecting that. I knew I would be emotional, but I did not know that I would be brought to my knees and be crying nonstop. I had volunteers hugging me while I just sat there, staring at his name with the Washington Monument in the background. My emotions were for a few reasons. One was deep, deep grief of missing him and wishing he was still here. The second was knowing that he is so proud of me. I know it's hard for those of you who know me in recent years to believe this, but I used to be terribly shy. Like, would avoid any and all conversation. That's not who I am anymore. I of course have moments but for the most part, I am far more chatty and confident than I ever have been.
And do you know why?
Advocacy.
Advocacy has helped me find my voice. It's pushed me to speak up even when I am terrified. Because I am speaking for people who can't speak for themselves.
And THAT is why I wanted to go to this event. For it to all come full circle. I remember my very first Michigan Lobby Day when I was sweating and shaking and barely said 2 words. I have come so far since then. My Legislators know who I am. They know who my dad was.
Oh- and I ain't done yet. For as long as I am alive, I will keep advocating. I am forever grateful I got to have this experience and it's something that will stay with me forever. I am also grateful that the team of Michigan volunteers embraced me and welcomed me. I have gained new friendships in each of them. They inspire me, and give me hope.
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