The dumbest thing going is that mask wearing has devolved into a binary political issue. I have lived through years of severe respiratory illness, and if that counts for anything, then let me get on my soapbox and say that breathing through an N95 mask was (and still is) not an inconvenience whatsoever. I will...
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I write with good news! Our pleas have been heard and some of the discriminatory policies or proposed policies that explicitly list cystic fibrosis in triage guidance are being challenged or have been reviewed. I have updates from Wisconsin, Vermont and finally a national position from Cystic Fibrosis Foundation. It is CRITICAL we continue to...
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Are we living in a world that is not adequately valuing our lives? We might be. Within the context of triaging care, our society is discovering that some of the very worst policies imaginable are still on the books. “Policies and guidelines in five states — Alaska, Florida, Oklahoma, Vermont and Wisconsin — specify that...
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We are infection control experts. Don’t miss your opportunity to take a leadership position in your community as people start to adjust to the new normal. Yesterday I listened to Dr. Antony Fauci – the man who is proving to be our national hero when we need one – in an interview on the Wall...
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Medical security is one of the most fundamental rights offered to patients and the medical system. Patient privacy is why I often omit or generalize different medical details about my own life within these blogs. I don’t write about PFT scores, test results and things like that. It’s also why I never tried to track...
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It’s Rare Disease Week 2020, which ultimately culminates with Rare Disease Day on February 29th (the rarest of days!). In the United States, a rare disease is exactly what it sounds like, a disease that is…well… rare. Specifically, a rare disease is one that affects fewer than 200,000 people. The reason we care so much...
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The Institute for Clinical and Economic Review (ICER) is back at it again. Just last week, the not-so-independent watchdog for all things drug coverage in the United States released its draft report for “Modulator Treatment for Cystic Fibrosis: Effectiveness and Value.” As a refresher, ICER uses a mathematical model called Quality-Adjusted Life Years (QALY) to...
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