Last week we celebrated news out of the North American Cystic Fibrosis Conference that median age of survival (remember, the age beyond which we expect 50% of people with CF born today to live, under the assumption that recent age-specific mortality rates will hold for the rest of their lives) climbed to 50 years old,...
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Drug pricing reform is charging through congress, and like anything else in Washington, our lawmakers try to jam as many (or not enough depending on whom you ask…) nuances into individual bills. A lot of different dynamics come into play from out-of-pocket costs to insurance benefits and, of course, plain old drug pricing. Today, let’s...
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My timelines are on fire with the wonderful news out of the North American Cystic Fibrosis Conference that Median Predicted Survival in cystic fibrosis has been raised to 50 years old thanks to a hell of a lot of progress that our condition has made over the past several years. It’s not lost on me...
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Just this afternoon, much of the CF Community became aware of a cystic fibrosis and COVID-19 outcome study in Respiratory Medicine. The article was published back in September, but it’s making the rounds on social media today. This study is of serious interest for our patient community because, at its core, it is really the...
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It feels funny writing about this. Maybe it’s my new normal – hopefully it is! Last year I wrote about hitting the one year free of a pulmonary exacerbation milestone. It was the second time I hit it since starting Trikfata (the first came during the clinical trial, but was separated from the second time...
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With each day that goes by, it feels like we are heading straight towards the next chapter of our lives together. Darcy and I have officially started transforming one of the rooms in our home into a nursey (catch my DIY projects on Instagram). My clothes are getting moved out of the closet this week,...
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Venture Philanthropy in biotechnology is as close to a patient-centered investment thesis as there could be. It allows investors and non-profit disease associations working on behalf of patient populations to consider risk, outcome, exit, time horizon, deal sourcing, and non-financial intangibles differently than a traditional venture capitalist. When a non-profit organization engages in venture philanthropy...
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