It’s conference szn, people! If you caught our Facebook Live earlier, you might know that we are LIVING on the CF Foundation’s live stream this week. Following along with us HERE. To be clear, I am NOT at NACFC because I value my health. I’m not going to dive into the middle of that petri...
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Amy is back with part two of her discussion concerning access for CFTR Modulators. Today we take a look at what’s preventing people with CF from gaining access to Orkambi in the United Kingdom I’m a DF508 heterozygote and therefore don’t have a CFTR modulator that will work for me (hopefully late 2019 it will...
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Standby for a poop blog! Yesterday I was at clinic for a routine visit, and part of that visit included a sonogram. Actually… believe it or not, October is Medical Ultrasound Awareness Month. Did you know that? I didn’t. Anywhoooo…I decided to make light of that part of my trip and play a little game....
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Is it a pain in the ass to find time do treatments? Is it annoying to spend hours each month on the phone with pharmacies and the insurance company? Have you stuck yourself far too many times with a syringe while trying to reconstitute a medication? Have you ever considered skipping a treatment just so...
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Happy #WorldMentalHealthDay!!! One of the best days of the year!! Gunnar likes to describe the three pillars of CF care as: Respiratory Care Gastrointestinal/Nutritional Care Mental Health Care If one of the three pillars are not being addressed, health as a whole suffers. But let me tell you, Gunnar did not always think this way....
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Monday was a holiday, so we’re talking about my Tuesday morning thoughts… Global Genes I was in California for the past week, which you’ll hopefully see as my reason for not blogging much. We’re a small time operation here. I can only do so much at once! I had the chance to join the Global...
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Amy talks about access in this week’s installment of Drug Development Wednesday. What is access, and why is it that nearly all American cystic fibrosis patients have access to CFTR Modulators, while access is limited internationally. When I was a junior in college I lived, studied and worked in Europe, and it was one of...
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