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See below for a weekly digest of the latest Cystic Fibrosis news:

Orkambi Approved in Europe for Younger CF Patients with F508del Mutations

Jan 23, 2019 07:00 am | Alice Melão



label extension OrkambiThe European Commission has approved the label extension of Orkambi (lumacaftor/ivacaftor) for the treatment of children ages 2-5 with cystic fibrosis (CF) due to F508del mutations, Vertex Pharmaceuticals, the therapy’s manufacturer, announced. Orkambi was previously approved in Europe to treat CF patients 6 and older with the F508del mutation in the CFTR gene, the most […]

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What Storm Drain Adventures Taught Me About CF Treatments

Jan 22, 2019 09:00 am | Brad Dell



treatmentsI have a story for you. In my teens, I often ditched CF treatments to explore storm drains beneath my Hawaii suburban neighborhood. When entering the concrete tunnels (maybe 15 feet in height and width), they’re so dark it feels like you’re stepping into nothing, a vortex. Many of the drains end with a sheer drop-off […]

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CF Patients Navigate Increasingly Complex Health Insurance Quagmire

Jan 22, 2019 07:00 am | Larry Luxner



Scott GrosseFlorida resident Megan Willis has cystic fibrosis (CF), and she’s not getting better. But that didn’t stop authorities last March from deciding otherwise, and denying her access to Medicaid — which for years had been paying her more than $100,000 in annual healthcare expenses. “My health has only gotten worse in the past year,” Willis, […]

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Woman’s Lawsuit Put Emphasis on ‘Urgency’ in Deciding Organ Transplants in US

Jan 22, 2019 07:00 am | Emma Yasinski



Biomarker cystic fibrosisWaiting for a lung transplant in the intensive care unit at a New York hospital in November 2017, a 21-year-old pulmonary hypertension patient named Miriam Holman sued the U.S. Department of Health and Human Services. Her lawsuit accused the department of allocating organs based on a patient’s geographic location, rather than medical urgency — as […]

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