Miracle Flights: free medically-related air travel for ill patients, including for Cystic Fibrosis treatment
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 …
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 …
(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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …