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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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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

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 that people without Staphylococcus Aureus (about 70% of the population) have a different bacteria — Staphylococcus lugdunensis — in their noses that kills …

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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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GeneticsLiving With CFTreatments

DNA ‘cages’ deliver drugs with zap of light

  Getting drugs to go just where you want them inside the human body is no easy task, and using high doses of chemicals that are carried by the bloodstream to the wrong tissues or organs can lead to toxic side effects. That’s why scientists have been working for years …

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patient assistance controversy
AdvocacyFinancialLiving With CFTreatments

Understanding Pharma Controversies in the News

Many people have heard of the company, Turing Pharmaceuticals, which last year raised the price of a drug by over 5,000%, but most people don’t understand how and why that was possible. Looking at the issues behind the Turing Pharmaceutical controversy of this past year is worthwhile even though the …

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ContestsLiving With CFTreatments

Wabi Baby Steam Sterilizer Contest

Photography Contest for Cystic Fibrosis Awareness MonthEnter to Win! Take a photograph of your system for cleaning CF respiratory or feeding tube equipment and enter to win a Wabi Baby Steam Sterilizer & Dryer – the only commercial steam sterilizer to be tested on CF pathogens. Cleaning nebulizer parts is an important part …

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sinuses
FAQsLiving With CFRespiratory DiseaseTreatments

Mayo Clinic and Chronic Sinusitis

From the Mayo Clinic: Treatments to relieve symptoms Your doctor may recommend treatments to help relieve sinusitis symptoms. These include: Saline nasal irrigation, which you spray into your nose to rinse your nasal passages. Nasal corticosteroids. These nasal sprays help prevent and treat inflammation. Examples include fluticasone (Flonase), budesonide (Rhinocort …

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