heart fibrosis
Living With CFResearchTreatments

Pulmozyme May Extend Lives of People Without CF

Pulmozyme might be able to extend the lives of people who don’t have CF according to a recent article in Science Daily, “Fighting age-related fibrosis to keep organs young.” Since it was approved by the FDA in 1993, Pulmozyme (dornase alpha or DNase) has been used by many people with …

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Living With CFTechnologyTreatments

A Day with Portable Genomics

  Using the Portable Genomics App   CFtechnology and Portable Genomics are proud to create a partnership using a new, customizable app! In the Digital Age, it is no surprise that apps are finding their way into the medical field. Technology is everywhere, so why not harness the power of …

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FinancialLiving With CFSupportTransplantsTreatments

Miracle Flights: free medically-related air travel for ill patients, including CF

Struggling to cover the cost of air travel to receive your medical care? Miracle Flights assists patients through free commercial air travel to obtain special medical care. Read more about this fantastic organization and how to apply below…   Blog article written in conjunction with Brooke Freeman, Community Outreach Officer …

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Living With CFResearchRespiratory DiseaseTreatments

CFTR Function and Cigarette Smoke

Scientists are looking at how the CFTR 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 majority of people with CF …

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Living With CFTechnologyTreatments

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. This is a medical device that …

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orkambi
Clinical TrialsLiving With CFTreatments

Lumacaftor/Ivacaftor longer trial on Heterozygous F508del 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 CFTreatments

Member post: Think INSIDE the box to make inhaled treatments easier

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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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 medication used to …

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vertex
FinancialLiving With CFTreatments

Mom takes on Vertex CEO about pricey CF 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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