Friday, January 7, 2011

Nothing but Notes - Denufosol, Pixel Award, AHCCCS

This week, it was announced that the drug from Inspire Pharmaceuticals, Denufosol, had failed. Hoping to achieve an increased FEV1 after a Phase 3 48 week trial, the increase in FEV1 ended up being negligible. This came as quite a shock because the Phase 2 study of the drug was hailed as a major success. I was personally surprised after speaking with multiple CFers about the drug and hearing that it was doing wonders for them, whether it was increased lung function, increased mucus production or just a "feeling better" response. I admit, I had a lot of hope for this drug and was shocked and saddened to hear the news. I'm left with more questions than answers on this one.

On the bright side, and completely unrelated, CysticLife won a website award (The Pixel Awards) for the People's Champ choice of Best Blog of 2010. That's quite a mouthful! Anyway, we're super happy about it and so thankful that we're able to get some more recognition for the CF community. Anytime that we can get people to hear the words Cystic Fibrosis is a victory for us. Get enough of those small victories and they'll really start to add up. If you haven't yet signed up for an account on, I would highly encourage you to do so. And, if you sign up before January 11th, you'll be eligible to win an iPad!

Locally, there is quite a storm brewing over the recent decision by the Arizona government to cut funding for transplants for people on AHCCCS. I know some of the people who are or will be affected by this personally, and I just can't wrap my head around this one. I'm all for tightening the budget, and I'm no math major, but I would bet my bottom dollar that cuts to the budget, that won't allow people to die, could be found. I mean, there are some people on the transplant list who have worked their whole lives, paid into the system, and when they need the system the most, it fails them. Cannot explain that one.