The Alliance for Childhood Cancer Action Days in Washington, D.C., is an opportunity for members of the childhood cancer community – from kids and their families to health care professionals and volunteers – to advocate for childhood cancer issues before Congress.
St. Baldrick’s Honored Kid, Scott, a 10-year-old whose cancer is in remission, attended Action Days with his mom Nancy and has provided us with the following report on his experiences in Washington.
We started the morning by having breakfast with our state team members from North Carolina and receiving our schedule for the day’s meetings. I was also able to catch up for a few minutes with Kevin Mathis, St. Baldrick’s Senior Legislative Counsel, about the day ahead.
Our group of about 230 people then boarded buses and began our short journey to Capitol Hill. It was just long enough for me to review a few of my talking points for the day.
After getting off the buses, we took a group picture in front of the Capitol. The temperature was in the 30’s and it was cold outside!! I also took a few pictures holding signs of our three Action Days legislative requests: an increase in NIH funding, full funding for the STAR Act, and co-sponsorship of the Palliative Care and Hospice Education and Training Act (PCHETA).
We made our way to the Dirksen Senate Office Building and I took a few moments to do a final review of my key points before meeting with the office of Senator Thom Tillis (R-NC) – gotta be prepared and bring my A-game on Hill Day! Our team shared our childhood cancer stories, our reasons for coming all the way to Capitol Hill to discuss childhood cancer (including a HUGE thank you for passing the Childhood Cancer STAR Act), and we presented our requests. I gave my two cents throughout the meetings, but my official role was the “closer” who summarized our requests and directly asked if I could count on the senators and state representatives to grant our requests. It’s a really fun role to have.
In between our Senate meetings, St. Baldrick’s Honored Kid, Sean, and I took a few minutes to see what it was like to stand at the podium in one of the Senate Committee Meeting Rooms. It was awesome … I could get used to that!
While roaming the halls in search of Senator Richard Burr’s office (R-NC), we happened to run into Miss North Carolina USA – you never know who you’ll run into on Capitol Hill!
Capitol Hill is an awesome place with cool buildings everywhere and so much energy, so my mom took some pictures of me as we walked to our next meeting.
We then headed to the Longworth and Rayburn House Office Buildings to meet with the staff of Representatives Mark Walker (R-NC) and David Price (D-NC). Before concluding each meeting, we left behind a folder that included more details about our legislative requests, and also “Faces of Childhood Cancer” pages of kids with cancer from our state.
The Faces of Childhood Cancer helped our Members of Congress better understand the wide range of kids in their state/district who are affected by childhood cancer, the #1 disease killer of kids in the US. The stories we shared with the offices in person combined with the Faces of Childhood Cancer pages really made them realize that more can and should be done for kids with cancer.
Around 4 p.m., it was finally lunch time! After a day of meetings on the Hill, I was hungry. I was able to take the Metro back to the hotel, which was lots of fun. As we picked up our bags to head to the airport, we ran into St. Baldrick’s researcher Dr. Julie Wolfson and traded stories about our day. We took one final picture with St. Baldrick’s staff, and that was a wrap on Action Days 2019!
I was thankful that I could attend my fourth Action Days this year. Why? Because I know how lucky I am to still be here as I approach my four-year off-treatment anniversary from acute lymphoblastic leukemia (ALL) next month. I know other kids who were diagnosed at the same age with the same cancer, treated during the same time period, and at the same hospital as me who are no longer here. I don’t take that for granted. I’m fortunate that I’ve been able to rebuild my strength after treatment and do things that I didn’t get to do during my time on chemotherapy, like play basketball and compete in triathlons.
I wish this could be the case for all kids with cancer, but it’s not, and that’s why I go to Capitol Hill every year. We can’t improve the lives of kids with cancer without help from Congress, so it was important for me to ask them in person to provide $41.6 billion for the NIH, including $6.5 billion for the NCI; full funding ($30 million) for the STAR Act in FY 2020; and for them to sign on as cosponsors or original cosponsors of PCHETA.
I was happy to share my experience with my legislators and I like to think that it helped put a face on childhood cancer in a way that will remind them of the importance of research, palliative care, and survivorship issues for kids like me.
Until next time, Capitol Hill!
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