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Living With CFResearchRespiratory DiseaseTreatments

CFTR Function and Cigarette Smoke

Scientists are looking at how the CFTR (Cystic Fibrosis Transmembrane Conductance Regulator) potentiator, Ivacaftor, might be used in COPD, specifically chronic bronchitis. They found that cigarette smoking reduces CFTR activity in lung tissue, and that exposing the lung cells directly to a CFTR potentiator reverses this effect. While the vast …

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Living With CFTechnologyTreatments

(Cystic Fibrosis Diabetes) First FDA approved artificial pancreas and other 2016 Digital health highlights

The “What We Learnt in Digital Health in 2016” article (by Bertalan Meskó, MD, PhD) takes a look at the successes, failures and challenges in the field of digital health in 2016 and provides an interesting view on some current trends. The first FDA-approved artificial pancreas is mentioned (which may be of interest …

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Clinical TrialsLiving With CFTreatments

Lumacaftor/Ivacaftor longer trial on Heterozygous F508del Cystic Fibrosis Patients

At the end of November, the results of a clinical trial of Lumacaftor/Ivacaftor, also known as Orkambi, in CF patients with one F508Del mutation were published in the Annals of the American Thoracic Society. A past trial for Orkambi in this type of CF patient (heterozygous F508del) lasted 28 days …

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thinkinginsidethebox
AdheranceLiving With CFResourcesTreatments

Think INSIDE the box for easier inhaled treatments – cystic fibrosis treatment

It’s taken me a long time, but I finally have a ‘system’ that has made inhaled treatments easier to keep up with. Background In childhood, I was very compliant with the CF treatments, as my parents helped me. I didn’t need to think about it; it just happened. In my late …

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rx-redesign
AdheranceLiving With CFTreatments

Redesigning Prescription Medication Inserts

Six everyday items were re-imagined by designers in this week’s New York Times Magazine. A data visualization firm, Periscopic, and Thomas Goetz of Iodine, a health information website, created a more informative and easier to understand prescription medication insert that can be viewed here (scroll down the page to find …

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vertex
FinancialLiving With CFTreatments

Mom takes on Vertex CEO about pricey Cystic Fibrosis Treatment Drugs

In October, Oklahoma-based journalist and mom Juliana Keeping traveled to Boston with her son to confront Jeffrey Leiden, the CEO of Vertex Pharmaceuticals. Keeping’s son, Eli, has cystic fibrosis, and she’s not happy that Vertex’s two-drug combo, Orkambi, costs $259,000 a year. So Keeping, who gathered more than 124,700 signatures on …

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FinancialLiving With CFTreatments

How Much Do Orphan Drugs Cost?

The high cost of CFTR correctors and potentiators has been in the news since the drugs were approved by the FDA. Many people have been concerned that private insurers and the government might deny coverage based on the cost. However, recent research into healthcare spending indicates that the overall impact …

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pillsfuturicity
Living With CFSurveyTreatments

Survey Shows A Lot of People Save Leftover Painkillers

More than half of patients who get a prescription for opioid painkillers have leftover pills and keep them to use later, a practice that could potentially exacerbate the United States’ epidemic of painkiller addiction and overdoses. Researchers reporting in JAMA Internal Medicine also found that nearly half of those surveyed …

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Living With CFResearchRespiratory DiseaseTreatments

New Antibiotic Discovered in our Noses could help treat Staph and MRSA

Staphylococcus lugdunensis, a bacteria that kills staph and MRSA, could someday add to the arsenal of weapons that help people with Cystic Fibrosis. Why do some people carry Staphylococcus aureus bacteria in their noses and others don’t? Scientists at the University of Tübingen in Germany asked this question, and they found …

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vendanta
Gastrointestinal DiseaseLiving With CFTreatments

Bugs into Drugs: Beyond Fecal Transplants

Read about the drug company: Vedanta “Vedanta is a little different. It focuses on isolating specific bacterial strains that scientists believe can have a specific biological effect, and making those into “rationally defined” drugs. That’s different than a fecal transplant, in which physicians take feces loaded with incredibly diverse bacteria …

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