DC Day Two of Lobbying!
By: Melissa Wiggins
This is our 4th time in DC and we return in September. We see a shift, an awareness and a more enlightened response than we ever have on our previous trips.
I must thank Smashing Walnuts, Kids v Cancer, St. Baldrick's and Live Like Bella - all of these foundations were named as people advocating for our kids. So from one pediatric cancer foundation to another - we thank you!! We thank you and we join you in this effort.
Today was another long day of talking about kids' cancer. All day my mind just took me to Emmi Grace and her fight! To her parents Monica and Ryan and their fight! To Trevor and his fight! To his parents Jody and Tim and their fight. The fight of parents, kids, siblings - the impact on ENTIRE families! So while I have moments that are hard being away from my kids and them snubbing me on FaceTime because they want me home or crying for me to come home... I'm quickly taken back to the reality that is pediatric cancer! It's a reality I never want anyone to endure - especially the kids! Yes, this is hard on parents - but the kids... the kids suffer. They suffer to live. They suffer so much more than I can ever put into words! I've watched it with my son! With other families! I've attended funerals! I've seen the open casket of an 18-month-old! I've watched a child in a coffin be lowered to the ground! I've seen it and NOW... NOW I can't unsee it and I plan to spend my living days, with others, fighting to change it!! It takes a team and we are part of a team!
Meeting with Senator Marco Rubio
We have met with their office before and it's amazing to see they remembered us. Emily Bouck, the Legislative Director in the office, actually got emotional and she wasn't the only one today. Often in politics you feel like you're just another cause in the door asking for your group. In essence you are - but some people receive you better! Rubio's office is one of those. Pediatric cancer is on their agenda. The Senate side had not supported the STAR Act like the House has, so we were so happy that on May 18th Rubio's office supported the STAR Act. There are currently only 18 who have done so. The fact that Marco Rubio has hopefully means others will follow, so this is great news.
Meeting with Senator Bill Cassidy
Senator Cassidy was a physician so he understands these issues. Their office had not heard of the STAR Act so we educated them and asked them to co-sponsor it! We met with Brenda Destro who is their Senior Public Health Policy Advisor. We loved speaking with her and have spent time with her before! She was a wealth of knowledge.
Meeting with Congressman Mike McCaul
I'm not sure anyone is more committed to the STAR Act than him. He Introduced the Star Act on the House side. He is Chairman of the Childhood Cancer Caucus. We met with Kelly Cotner and learned their office is really devoted to this cause and were on the same page and same team! They also introduced the Creating Hope Act and they are not giving up on it!
Meeting with Congressman Paul Tonko
He had tears in his eyes and choked up several times, especially when I shared about Emmi Grace. I could have spent the day with him! I just really enjoyed our chat and he commended us on our efforts. It's not why we do it but it was kind of him to say so! He has also supported the STAR Act.
Meeting with Congressman Mike Doyle
Congressman Doyle is another that we could have just spoken to all day!! He told us to never give up what we're doing, that many members don't know all the information we shared about pediatric cancer and that we must educate them to change it! We do! We will continue to! His office has also supported the STAR Act.
Meeting wth Congresswoman Diana DeGette
Degette is the co-author of 21st Century Cures Act along with Representative Fred Upton who we met with yesterday. Their office has also supported the STAR Act. We met with their Health Policy Director Polly Webster. They are definitely on our team and support pediatric cancer. They gave us some tips on places and people to target on our next trip - amazing advice!
Until next time, DC....
Back to my babies!!