Cystic Fibrosis News Today Weekly Digest

Cystic Fibrosis Weekly Update Contents: Orkambi Approved in Europe for Younger CF Patients with F508del Mutations What Storm Drain Adventures Taught Me About CF Treatments CF Patients Navigate Increasingly Complex Health Insurance Quagmire Woman’s Lawsuit Put Emphasis on ‘Urgency’ in Deciding Organ Transplants in US Orkambi Approved in Europe for Younger CF Patients with F508del Mutations Jan 23, 2019 07:00 am | Alice Melão The 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 […] The post Orkambi Approved in Europe for Younger CF Patients with F508del Mutations appeared first on Cystic Fibrosis News Today. Read More What Storm Drain Adventures Taught Me About CF Treatments Jan 22, 2019 09:00 am | Brad Dell I 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 […] The post What Storm Drain Adventures Taught Me About CF Treatments appeared first on Cystic Fibrosis News Today. Read More CF Patients Navigate Increasingly Complex Health Insurance Quagmire Jan 22, 2019 07:00 am | Larry Luxner Florida 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, […] The post CF Patients Navigate Increasingly Complex Health Insurance Quagmire appeared first on Cystic Fibrosis News Today. Read More Woman’s Lawsuit Put Emphasis on ‘Urgency’ in Deciding Organ Transplants in US Jan 22, 2019 07:00 am | Emma Yasinski Waiting 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 […] The post Woman’s Lawsuit Put Emphasis on ‘Urgency’ in Deciding Organ Transplants in USappeared first on Cystic Fibrosis News Today. Read More   Recent News The Diverse Spectrum of Health Across the CF Community Non-invasive Ventilation Improves Lung Function in CF Patients But Not Survival, Study Finds My Search for Happier, Healthier Work Phase 2 Trial Testing SPI-1005 for Ototoxicity in CF Patients Moving Forward CFF’s Preston Campbell: 2019 is a ‘Pivotal Year’ for CF Therapies