Most of us have heard about the good news that Vertex released this month. They are seeking FDA approval for a drug that will drastically change the lives of about 4% of the CF population, those with the GD551D mutation. This is good news for a small percentage of people, but it offers hope for a large majority. Along with VX770, which works for the rare mutation, VX809 which works for double Delta F508 mutation (the one I and many other CFers have) is currently being researched both alone and in combination with VX770. The reason why the results have come out only for VX770 is simply because it was ahead of the research for 809, so I’m keeping my fingers crossed that promising results come out for us Deltaf508’s very soon!
Hearing this news was overwhelming. When I first heard about Vertex’s studies a year or two ago, I was very, very hopeful, but also very, very weary. However, now that it is having such good results, A SUSTAINED 11% INCREASE IN PFTS and decrease in the saltiness of sweat to intermediate levels (a high level of salty sweat is the indicator for CF), I am blown away. When I read that article, I was overjoyed. This was especially emotional for me, because before I went to bed the night before, I was pleading with God to please give us a cure or SOMETHING that makes this whole thing easier. I’m sick of hearing about people dying, about people who “had” CF (past tense because they have since passed), about more hospitalizations for my CF friends. I prayed to rid the world of this disease for the people who suffer when their children die before them, for the patients who suffer as they watch their lung function decrease, for that fear of the future which we all experience, for the fact that our lives are so beautiful but far too short. It’s horrible living with a chronic illness, that never goes away, that is always described as “incurable” in the first line of any paper about CF.
And now…. there’s hope.
After reading the news release, I took a shower and my tears mixed with the water. I was the happiest I have been in my life. No exaggeration. Imagine, you have something you were sure you would suffer with your whole life, and suddenly there is hope that it can be treated by something as simple as a pill. I have high hopes for Vertex, CF care has come a long way, and I am hoping that this will be its final chapter.
My joy was further heightened when I went to my final study appointment (for cayston with cepacia patients) only to learn that I will be able to participate in another study this summer: the study testing VX809 and VX770 in combination. It’s not even a question whether or not I will accept this offer now. If I can be involved in something that will change the lives of most CFers, then I will do whatever it takes. I am excited to be involved in this, and I am hopeful that this study will get the same incredible results as VX770 did. No matter how long it has taken for this stuff to finally start happening, I know that God is listening to our prayers and I can only pray that these simple pills become available for us within my lifetime, or at the very least, within the lifetime of the children younger than me who are growing up with this disease.
