The last week of February, I was able to march on Capitol hill with 200 other advocates to tell the story of Cystic Fibrosis to our state’s elected officials in Washington D.C. Here I’ll tell the story of how everything went as it was a jammed packed two days of a roller coaster of emotions, new friends and a ton of new information for the future of CF.
On Wednesday during the lunch hour, we were able to network with other advocates from around the country before the actual conference began. Advocates included parents, aunts, uncles, grandparents, friends, CF nurses and everyone in between. Because CF’ers can’t be within 6 feet of each other, there was only one individual with CF at our conference. The kick off for the conference shared that there were 43 states represented and that were were 300 meeting scheduled. When looking at the State of WI, there were only two of us, Carolyn and myself. Mike Boyle, the new CEO of the CF Foundation shared the new era of the CF Foundation falls into 3 tiered approach, Cure, Care, and Community. He shared what is new on the advocacy side of the Foundation and other things the foundation is working.
As we kicked off the conference, the CF Advocacy team had a chance to introduce themselves and talk about different things they were working on while at the capitol. As they are continuously advocating at the Capitol, they were sharing stories of how they were seeing CF’er pictures in the offices and how impactful the stories and relationships have grown over the 14 years the Foundation has been marching. While we were there, there were three things we were asking for; continued support of the funding for FDA and NIH, understanding the impact of Pre-exisiting conditions coverages through the Affordable Care Act and for support for the future of antibiotics.
After learning what we were discussing the next day, we as a a team, then had break out sessions so that we could strategize our game plan when we were on the Hill the next day. Our game plan was to have Chris, a member of the CF Foundation legal team, introduce himself and then review what CF is to refresh/educate for those that don’t know. Then it was my turn and I told Maddox’s story (in a really fast and condensed version) by sharing how we found out about his diagnosis, and then what his ‘normal’ day looks like with his vest treatments, nebs and enzymes. I brought along a story book that had pictures of him and his vest, his nebs, enzymes, our team picture last year, a picture of his CF care team and ended with a picture in his Packer jersey. As I would tell his story, I would flip through the pictures so they were able to see what I was talking about and would leave it open to his Packer picture. From there we game planned to have Carolyn introduce herself and her CF connection and then segway into our topics. As we were going through our topics, I would be able to interject different stories or examples of the importance based on the follow up questions that they had. We would then open it up for any questions that they might have and then we would be out. Perfect plan!.
After we worked on our game plan, we then had a session break and came back for our dinner. Our Wednesday night meal and rest of the agenda for the day I feel was the most interesting as we were able to hear from a panel of doctors/scientists that are part of the Foundation. Here they were able to share their CF connections and what they were working on in their respective fields. For the team working on the modulators they are working on three different things. 1) working on the testing/trials for Trikafta for CF’ers from the ages of 6-11. 2) Working on different modulators for the other 10% that are not eligible to be on Trikafta. 3) Working to simplify what CF looks like for those on Trikafta already (how many vest treatments are needed, are the nebulizers still effective, etc.)
Katherine and her team working on the genetics side of the house, they are the ones that are truly working on the Cure. Trikafta is not the cure for CF, but it’s pretty darn close based on what was shared to me from other CF parents. The genetics side of the team would be looking how to fix or re edit the DNA/genes to correct CF.
Dara, the other doctor that attended is working on the antibiotics side of the house. Throughout our training sessions and listening to her speak, this is going to become a big concern. Drug makers are not in the market for antibiotics as there is no money in it. The general population along with CF’ers are becoming immune to certain antibiotics and the toolbox of antibiotics will continue to shrink. If there are no manufacturers working on the research for new antibiotics, what happens when the toolbox is empty.
Once the Panel discussions were over, I was able to meet with JP Clancey, the Vice President of Clinical Research and ask specifically about Trikafta and Maddox. In the conversation with JP he confirmed that Maddox will be eligible for this medication. He is hoping based on all their initiatives and goals that Maddox will have an amazing 6 year old birthday present. I had to wipe a tear or two and asked if I could get a picture. After all the emotions shared, it was time for bed as we had a very busy day the next day.
Day on the Hill
Thursday morning started with a breakfast and our guest speaker pumping us up to get our war faces on. We finished up eating and jumped into an Uber to head to capitol hill and I will never take another Uber in DC again, ask me about it sometime. We got to Capitol hill and we started our day of meeting with our elected officials. For the state of Wisconsin, we were able to meet with 7 of the 9 representing Wisconsin. We met with the team staff members, told our stories and presented our asks, just like we practiced. Most of the teams were open to what we had to say, took notes and asked follow up questions. Overall, it was very empowering to be able to be in Washington D.C. in the buildings of our Senators and House of Representatives and tell Maddox’s story. For them to hear of how far the journey of CF has come and what the future looks like while holding a picture of Maddox while telling the story was really cool.
In between our meetings, we were able to sneak in a quick tour of the library of Congress while we were on Capitol hill. We finished our day with our group picture on the steps of our Nation’s Capitol. When we got back to the conference center, we had dinner and the closing agenda was to hear how the day went for others. The microphone was being passed around for all the other advocates to tell their stories of the day. Stories of how receptive the elected officials were to our messages, relationships that had been created and the impact of all 200 marching at our nation’s capitol. The stories were funny, empowering, and emotional as the variety of advocates was very cool to be apart of. It is a night that I won’t forget as we came together as one to celebrate our day on the Hill.
The time I spent in D.C. was awesome. I met so many amazing people that have the same energy and drive as myself to find a cure for our CF’ers. We were able to share the same stories of treatments, calls to the insurance companies, share ideas and build a support network for ourselves. It was empowering to be able to walk into the offices and tell a story from Northeast Wisconsin. It was hopeful that walking away that Maddox will be able to take Trikafta and to have a glimpse of what his future will look like in the next 18 months or so. If asked to go again, I would say yes in a heart beat.
March on the Hill for my little CF’er. #myhero