Cystic Fibrosis News Today Weekly Digest

Cystic Fibrosis Weekly Update Contents: Grieving in an ‘Always Online’ World Vertex and Treating CF: 3 Disease-modifying Therapies Make Leap from Lab to Patients Reminders to Those Who Mourn Reimbursement Agreement Includes Orkambi in Public Health Plan for CF Patients in Australia Grieving in an ‘Always Online’ World Sep 10, 2018 09:00 am | Tré LaRosa “So right now we live on borrowed time, I don’t know how long or what is to come in the next few months.” My sister Alyssa posted this sentence in a Facebook update when we learned that no options remained for her chronic rejection after a second lung transplant. She would pass away less than […] The post Grieving in an ‘Always Online’ World appeared first on Cystic Fibrosis News Today. Read More Vertex and Treating CF: 3 Disease-modifying Therapies Make Leap from Lab to Patients Sep 10, 2018 07:00 am | Emma Yasinski Editor’s Note: This is the second of a four-part series looking at Vertex Pharmaceuticals and its “all in for CF” approach. Here, we detail the steps that made three disease-modifying oral treatments for cystic fibrosis possible. Kalydeco (ivacaftor), as Vertex‘s cystic fibrosis potentiator came to be known, was a small molecule compound that posed big questions upon its […] The post Vertex and Treating CF: 3 Disease-modifying Therapies Make Leap from Lab to Patients appeared first on Cystic Fibrosis News Today. Read More Reminders to Those Who Mourn Sep 07, 2018 02:02 pm | Luisa Palazola For many of us, being a part of the cystic fibrosis community is obligatory. No matter our degree of engagement, we have CF and therefore are part of a community larger than we are. Choosing to play a part in the community can be one of the most positive, powerful, and impactful experiences. Through it, […] The post Reminders to Those Who Mourn appeared first on Cystic Fibrosis News Today. Read More Reimbursement Agreement Includes Orkambi in Public Health Plan for CF Patients in Australia Sep 07, 2018 07:00 am | Alice Melão Beginning Oct. 1, the cystic fibrosis (CF) targeted therapy Orkambi (lumacaftor/ivacaftor) will be included on Australia’s Pharmaceutical Benefits Scheme. The Australian government’s decision resulted from the completion of an agreement with Orkambi’s manufacturer, Vertex Pharmaceuticals, and was supported by the recent positive recommendation from the Pharmaceutical Benefits Advisory Committee (PBAC). As part of Australia’s National Medicines Policy, […] The post Reimbursement Agreement Includes Orkambi in Public Health Plan for CF Patients in Australia appeared first on Cystic Fibrosis News Today. Read More Recent News Australian Museum Eureka Prize Given CF Research Team for Work on Bacteria’s Spread Among Patients Vertex, Genomics Team Up in Quest for Genetics-based, Precision Medicines Vertex and Treating CF: Stepping Out on Long Road to ‘Medical History’ My Hospital, That Torturous Refuge What People with Cystic Fibrosis Want Their Doctors to Know