The answer: A LOT. I decided to do some very rough back-of-the-napkin math to understand spending in the CF space because occasionally I come across a strange fundraising appeal that solicits donations for cystic fibrosis research on the basis that the US government does not fund research efforts for the condition. If you run in...
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Since the beginning of the COVID-19 vaccine development process, Moderna has sought to be incredibly transparent with the trial population – from age groupings, to racial identifiers and risk groups. Today’s release of data about their vaccine candidate has not been any different. Embedded in the FDA’s briefing document on the Moderna COVID-19 Vaccine, the...
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The FDA’s vaccine advisory meeting is today where it’s probably all but certain that the committee will vote to move Pfizer/BioNTech’s vaccine across the Emergency Use Authorization finish line to begin the largest mass vaccination campaign since polio vaccinations began in the mid 20th century. If you’re following me on Twitter, you know I have...
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Last week I celebrated one year free of IV antibiotics. Darcy and I took a stroll down main street in Woodstock, Vermont and grabbed coffee at one of our favorite cafés in the area. It’s a milestone that we always love to celebrate because memories of just the opposite still plague our thoughts. In the...
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With the calendar turning to October this week (thank God 2020 is coming to an end), we will be celebrating one year of Trikafta’s availability in the United States. It goes without saying that a lot has happened since then – the most significant thing to celebrate is the CF community’s seemingly overnight transformation. Not...
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One of the benefits of having cystic fibrosis (if there was ever such a thing…) is that it is quite easy for our clinics to report, collect and analyze patient data all over the world. The Cystic Fibrosis Patient Registry (despite some of my issues with it) has the ability to quickly collect data allowing...
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Last week I naively asked, “Will we fall victim to healthcare rationing?” This week it seems like that’s the question global experts are asking, too. The thing that scares me most about the coronavirus outbreak is the potential for an indefinite period of time where every day health services could be out of reach. Yes,...
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