We spent the past few days in Washington D.C. and posted a few photos and updates on Facebook but wanted to give a more detailed account of our adventures here on the blog (for you and also for us to remember the whirlwind trip we just had!).
To briefly back up, a few weeks ago, a friend we met through the Ronald McDonald House and Cincinnati Children's reached out to us through Facebook. She works for the American Childhood Cancer Organization and does a lot of very cool things to further research and awareness. She is also active with the Alliance for Childhood Cancer and invited us to join them in D.C. for Childhood Cancer Action Days to help lobby for the S.T.A.R. Act. It sounded like a great opportunity for our family to be a part of so we scrambled to make it happen.
After a very long road trip, we arrived in Washington D.C. at about 11:00 p.m. Sunday night. We were staying at a hotel about 2 miles from the hotel that was hosting training and have never used public transportation with kids before. (Mama was a bit nervous about how the morning was going to go!) Luckily, our excitement got us all up and out quickly in the morning and there was a row of taxis in front of the hotel and we were easily able to hop in one and get across town.
Another family we know from Tennessee was also joining us for Action Days, Amanda Dean and Justin Steinmann. We have shared the story of their sweet son Owen with you in the past. He was diagnosed with an A.T.R.T. brain tumor at 3 months old and passed away at only 6 months old. There story is heartbreaking but not uncommon in the childhood cancer world and families like theirs drive us to want to fight even harder. It was such a blessing to have them on this journey with us and it was fun to get to spend the day in training with friends.
We dropped the kids off in a room next to the room for our training. The kids room was staffed with oncology nurses and child life specialists. There were crafts, toys, and all the medical supplies an oncology kid would want to play with! I found Tillery pretending to access ports once and later found her using syringes as water shooters. These people know what the kids like!
I'll give you the Cliffs Notes version of what we learned in our training...
- The S.T.A.R. Act (Survivorship. Treatment. Access. Research.) is the most comprehensive childhood cancer bill ever. You can learn more about it here or read the bill here .
- Big things this bill will do: Give a voice to childhood cancer patients by mandating a pediatric oncologist sit on the board that decides how government funded research dollars are allocated and create a database for childhood cancer so that across the country, doctors can compare cases they are seeing and work together on treatment plans.
- Big things this bill won't do: Directly give more money to childhood cancer research. I say this because a sort of rally cry in the childhood cancer world is "more than 4" referencing the NCI's allocation of around 4% of their research dollars to childhood cancers. While we would love more money allocated, that is what placing a pediatric oncologist at the table will hopefully accomplish. We learned that there is a group of individuals who represent the different types of cancer that comes together annually and asks Congress for one collective amount of money for research. Congress doesn't break out the allocations but leaves that to the medical professionals to sort out which research is deemed to be the most important. (Let's be honest, politicians should not be making the decisions on which cancers are priority or which research projects have merit.)
- In 2018, there is an increase of federal research funding to the NIH and NCI. We also learned that current plans for 2019 will decrease this amount but nothing is set on that yet so it can still change.
- We learned a little about some of the research that is being done with NCI funds through the Children's Oncology Group.
- We learned about another piece of legislation, the RACE Act, that recently passed and is focused on research to accelerate cures and equity for children.
Together, we were a group of 233 individuals directly impacted by childhood cancer. We came from 35 states and were set to attend 181 meetings on Capitol Hill in a single day. We all had the same message: Pass the S.T.A.R. Act.
The S.T.A.R. Act UNANIMOUSLY passed the Senate about 3 weeks ago and as of Monday, had the support of 85% of the House of Representatives. To the Senators we were meeting with, our message was "Thank you" and "Please fund the S.T.A.R. Act once it passes the House." To our Representatives, our message was, "Please help push the S.T.A.R. Act to a vote."
That was our Monday. It was long and exhausting but we were ready for action!
Along with our friends Amanda and Justin, we also had a few others from Tennessee to make up our Tennessee contingent. We had a researcher from Memphis who is focused on pediatric optic tumors, an area that is greatly underresearched and underfunded. We also had a mother and daughter from Chattanooga. Savannah is a strong, brave 11 year old osteosarcoma survivor who said in meetings, "I'm here so other kids don't have to go through what I went through." Just remembering her little voice saying it brings tears to my eyes!
As a group, our children have been treated at St. Jude, Vanderbilt, Erlanger Children's, and East Tennessee Children's. We represented 4 of 9 voting districts in the state and both Senator's hometowns.
Our first meeting was with Rep. John Duncan's office and it was just our family for this meeting. The Congressman wasn't available for the meeting but is already a co-sponsor of the S.T.A.R. Act and the staff member we met with let us know we have his full support. We spoke with her about the importance of pushing the bill to a vote and gave her a folder with information about the S.T.A.R. Act but more importantly, pages of stories of kids from the 2nd District who are cancer patients, survivors, and those who have passed away.
After our meeting with our district's office, we headed to meet with Senator Bob Corker's office. This meeting included our whole Tennessee group. This time we met with a staff member who handles healthcare related issues for the Senator. We went around the table and each told where we live and then our reason for being there. Savannah's mom told her story, we shared Tillery's story, our researcher shared the struggles of herself and her peers who want to find better treatments for our children but don't have the means to do it, and then Owen's parents wrapped up our meeting by telling the story of their perfect and healthy baby boy who was taken from them. Owen's mom walked around the table to sit beside the staff member and share pictures and stories of Owen. Again, a folder was left with information about the S.T.A.R. Act and with pages of stories of children from across the state. (For those who wonder what the Phillips children did during the meeting, they were given snacks by a nice staffer at the front desk and noisily ate potato chips and gulped water during the meeting until I finally had to take it away to keep them quiet.)
The other members of our Tennessee group met with a few other representatives and then we all met back up for a meeting with Senator Lamar Alexander's office. We were in a small conference room with 2 of the Senator's staff members and so Joe and the children sat off to the side since the table was small and the kids were tired. At one point in the meeting, I heard loud breathing and looked over to see that Tillery had fallen asleep on Joe! (Surely she's not the first person to fall asleep during a long day of meetings on Capitol Hill!)
Again, a long and exhausting but very productive day!
We are now pulling all of our notes and business cards together to send follow up correspondence. We will be following up directly with the people we met with but also encourage you to reach out to your representative's office to ask them to help us get the S.T.A.R. Act to a vote. Here is a map to help you identify your representative and get contact information for them. Let them know you are in their district and that the S.T.A.R. Act is important to you and you would like them to help push it to the floor for a vote. You can call or email them (or both).
Thanks for hanging with me for my super long post. Here are some photos from the trip.
Ready to learn!
Training with the Alliance for Childhood Cancer
There were a few walls plastered with stories of children with cancer.
The Tennessee group getting to know each other.
Luke said just a few weeks ago that if he ever went to Washington D.C., he would want to see the White House. It's nice to go ahead and check things off the list!
These helicopters flew right over our heads and then one landed on the lawn of the White House (see the above photo). We think this might have been the French President who was arriving that day.
The Washington Monument is 555 ft. tall. These kids do not care.
They really enjoyed sitting on this grassy hill.
Who's excited to go to the Capitol tomorrow? Apparently just Joe.
Tennessee Takes on D.C.
Meeting #1 at John Duncan's office. (Note: As soon as the meeting started, Tillery pulled her hairbow out.)
Meeting #2 Bob Corker's office. About 50 photos were taken here and this is the best we have to work with!
During a break between meetings, the kids found a sign promising "small kids" in the area and we went on a search. None were found so we decided they were the kids the sign referenced.
Meeting #3 Lamar Alexander's office.
Lamar Alexander wins for coolest office décor!
This is what being tired of meetings looks like.
This ridiculous selfie was taken while riding on a crazy tram thing that runs between buildings under the Capitol Building. We needed an escort to get on and had to go through extra security clearance.
This is the goal - Get the S.T.A.R. Act to The House of Representatives!
