Most of our meetings are with young people. This past week, though, we had a meeting with a Senior Legislative Assistant who happened to be a bit older. This was a nice change of pace; she opened up a whole different dialogue with us and offered a unique perspective. When we were done with our presentation, she asked us if we had a stance on the republican healthcare bill. We all glanced unknowingly at each other and then told her that our organization has not taken an official position on it. it.
We told her that we support whatever would give kids access to the life-saving drugs and treatments they need.
She said she agreed and proceeded to suggest that we start advocating for this (a.k.a. against the republican healthcare bill) in our meetings along with the RACE for Children Act. She looked us straight in the eyes and said that no matter how hard we push this bill, even if it gets passed, it will mean nothing if kids can’t afford their healthcare I could feel the floodgate of tears about to burst as I walked out of that meeting. This just hit me so hard. I am not super educated about the republican healthcare bill, but based on what this staffer and others in the pediatric cancer community have been saying, I’m scared. If RACE passes, it will lead to new research and clinical trials. This will lead to the development of new pediatric cancer drugs. This should lead to saving kids’ lives, but this won’t happen if kids don’t have access to the drugs through their insurance plans. I hope this is not the case and I intend to educate myself further on this issue rather than trust opinions.
The idea of all this work I’m doing here going straight down the drain truly hurts my heart.Now, not only am I hoping for RACE to pass, but I’m also praying that whatever healthcare bill is passed ensures children have access to the best treatments. As a lobbyist for a bipartisan bill, I’ve been told to not get too controversial on other issues, but I cannot sit back while kids’ lives hang in the balance of a piece of legislation that is being discussed behind closed doors. I won’t accept it, and neither should you; we all deserve to know the facts and make informed decisions.
I will fight to make sure that RACE is passed, and I will fight even harder to make sure that it is enacted both fairly and effectively
