Building Castles : fighting for the opportunity to live

It can be a difficult place to live in the present when it feels like the sands are always shifting beneath your feet. There’s a perpetual anxiety that dwells within me that pulls me deeper into the quicksands of CF. An anxiety that doesn’t come from an inability to fight or finding the tenacity from within to give life your all, but an anxiety that comes from being denied the opportunity to fully live. I don’t think there’s a day that goes by that I don’t think about healthcare, about how the fight to live gets more difficult, more expensive, and comes at a cost to all of those I love. I see how so many have sacrificed so much for me while I and so many like myself fight with everything we have at the chance for another beautiful breath.

This week, positive preliminary results were released for the clinical trial of the VX-445 Triple-Combination therapy that targets the underlying cause of CF. This drug has the potential to significantly impact the lives of over 90% of individuals with CF that have at least one copy of the mutation F508del. This is what I and so many like myself have been waiting for. This is the living hope not only for a single tomorrow but for a set of many. But, paired with that hope is a bubbling anxiety that it will come at a significant cost. I think about the potential to be given a future never imagined and the potential for it to never come to fruition because that future costs too much, is a burden to those I love, or is untouchable because of ever eroding protections for people like myself with high medical needs.

I know from the outside it can seem simple to believe that we are too expensive, that it shouldn’t be the responsibility of others to shoulder the expensive burden of such a disease. I understand that. But, I live on the other side of that. The side in which I’ve watched my husband take a second job to pay my ever-increasing medical bills - knowing deep down they’re only going to get more expensive and complex as CF itself progresses and any and all life-extending therapies will come at a rising significant cost. To live with an anxiety every day that there are people entrusted with power who don’t believe your life lived with a pre-existing condition is worth protecting is a very disheartening and crushing reality. It’s also crushing to watch those you love be willing to sacrifice everything for you. It’s an anxiety that makes thinking of today, let-alone tomorrow unsettling at times. Especially, when you know such shifting sands aren’t best for building castles. Love to you all.

GIVING VOICE

Today, close to 150 CF advocates are taking part in the Cystic Fibrosis Foundation's March on the Hill in Washington D.C. where they are telling their personal stories to elected officials about the importance of adequate, affordable, and accessible healthcare for those not only with chronic illnesses such as cystic fibrosis, but all those living with pre-existing conditions. While family, friends, and passionate advocates are marching on The Hill today, we can help them as well in this movement by sharing our voices online for this impactful day of action. Please take a quick moment and visit the link below to send a message to your representative(s) : Online CFF March on the Hill