Rumor mill churning re: Vertex drugs

Hi all! I have recently read a few somewhat concerning things on social media regarding Kalydeco, that I had not previously heard anything about. Instead of spending hours googling trying to glean info, I thought I'd ask y'all (I say y'all now) on here because we have so many super knowledgeable folks. Because I want to get correct info and not perpetuate what is, perhaps, false info, I want to clarify that these things I have read came from peoples' personal facebook posts about it. These aren't from news stories or journal articles etc. Anyway, the first thing I heard is that many people (men and women) on Kalydeco are having issues with very high testosterone levels? Also, whether related or unrelated, having a lot of hair loss issues? I had never heard of either of these until a couple days ago. Another thing that people are talking about is a carcinogen study (on Kalydeco I believe) that the results are about to be released soon. It seems almost as if people are expecting a negative outcome there? The third and final thing I read is that after being told by Vertex they would receive 2 year open-label drug after study participation, people are now being told that is no longer the case and they/their insurance will have to start paying. I'm not 100% sure to which study this was referring, but I believe it was the double-delta study. Anyway, really just hoping to see if anyone has any solid info on any of these issues. Autumn 34 w.CF
Source: Cystic Fibrosis Adults Forum - Category: Respiratory Medicine Authors: Tags: Adults Source Type: forums