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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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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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

Very interesting article relating to drug delivery via ‘dna cages’. 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 …

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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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FAQsLiving With CFResourcesTransplantsTreatments

Cystic Fibrosis treatment: lung transplant facts and member experiences

Lung transplantation is something a person with Cystic Fibrosis might consider late in the progression of the disease, when life expectancy is about 1-2 more years and quality of life is severely compromised. It is a last resort in terms of Cystic Fibrosis treatment, but can be a life-saving procedure. …

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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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FAQsLiving With CFRespiratory DiseaseTreatments

Cystic Fibrosis symptoms: Mayo clinic’s sinusitis treatment suggestions

For many patients, chronic sinusitis is a part of their many Cystic Fibrosis symptoms. From the Mayo Clinic, about sinusitis: The goal of treating chronic sinusitis is to: Reduce sinus inflammation Keep your nasal passages draining Eliminate the underlying cause Reduce the number of sinusitis flare-ups Treatments to relieve symptoms …

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