The other day, my outlook on my future was drastically brightened. While at my study appointment, the subject of vx-770 an vx-809 came up. The researcher mentioned that they were beginning a phase 2 study on combining vx-770 and vx-809 for CFers with double delta F-508 mutations, and that I WOULD BE ELIGIBLE. For those of you who don’t know, these are two drugs on the pipeline that have the potential for “fixing” the protein transport that causes mucus production in CF patients….. something very promising given the fact that if they do in fact work, CF could be HIGHLY treatable and possibly (and I say this with THE UTMOST CAUTION)…. cured….
The excitement about these drugs within the community is very apparent as it gives hope to CFers and their families. However, as with any drug that still hasn’t been approved, it is always in the back of our minds that A) This could take a long time to get on the market and B) This might not even make it through all of the trials. Its great to be optimistic, but its important to be cautious in our optimism, as any drug that offers incredible potential could also be incredibly disappointing if it doesn’t make it to the market (harsh but true).
That being said, I was offered an opportunity at this appointment. Like I said, it turns out, that I am most likely eligible for this study. Meaning, I could potentially take the combination of active pills for a number of weeks and experience for myself the effects of the drugs. This opportunity is daunting. Though the study is only at phase 2 and thus is testing the safety of the drugs together…. for those weeks I could feel for myself if it actually works. This is exciting! But this is also scary!! Its exciting in the sense that I might be able to volunteer my time to be a part of something that could change the lives of my fellow CFers…. its scary in the sense that I don’t know quite what will happen when I take these drugs… could there be awful side effects? Or what if they don’t work and I am left disappointed? What if they do work, and I can’t take them again until they are approved? What if they aren’t approved, and I was only given a taste of the potential for success?
Regardless of my hesitations, I still feel incredible hope, whether I decide to participate or not. All of the sudden, something that has been talked about for a year or two now, is becoming REAL and that is an amazing feeling. The process of approval is in the works and though getting this drug to the market is a ways away, at the very least we can be THANKFUL that progress is being made now. Right now, all we can do is be patient, be hopeful, pray, and maybe, maaaayyyybe, in a few years, this drug will be a reality.
Imagine, something may be available in the near future to improve PFTs, decrease sweat chloride levels, and make us live longer more fulfilled lives. That excites me beyond explanation. To be honest, though I am very cautious, I am leaning more on the hopeful, expectant side. It feels good to be able to look ahead to a future where I may get healthier rather than sicker. Just having that hope to hold onto makes living life in the present all the more worth it than it already is. I have a little more hope which gives me a little more umph in wanting to keep fighting CF as hard as I can until a day where CF is history. And even if I don’t see that day come, at least the hope of a bright future was there to encourage me to keep living and breathing the best I possibly can. “Where there is life, there is hope.”And where there is hope, there is always the potential that things will be better some day. Until then, that hope gives us life and the will to keep pushing.
