title: Controversies with Kalydeco: Newspaper coverage in Canada and the United States of the cystic fibrosis "wonder drug".
abstract: The cystic fibrosis drug, Kalydeco, has attracted attention both for its effectiveness in particular CF patients and its substantial price tag. An analysis of newspaper portrayals of Kalydeco provides an opportunity to examine how policy issues associated with rare diseases and orphan drugs are being represented in the popular press.
  
  
  
  We conducted a content analysis of 203 newspaper articles in Canada and the U.S. that mention Kalydeco. Articles were analyzed for their main frame, discussion of Kalydeco, including issues of drug development, patient access, and reimbursement, and overall tone.
  
  
  
  In Canadian newspaper coverage, 77.4% of articles were framed as human interest stories featuring individual patients seeking public funding for Kalydeco, yet only 7.5% mentioned any budgetary limitations in doing so. In contrast, U.S. newspaper coverage was framed as a financial/economic story in 43.1% of articles and a medical/scientific story in 27.8%.
  
  
  
  Newspaper coverage varied significantly between Canada, where Kalydeco is predominantly a story about increasing patient access through full government funding, and the U.S., where Kalydeco is largely a financial story about the economic impact of Kalydeco. The difference in coverage may be due to differences in public funding between the healthcare systems of these two countries.
authors.affiliation: School of Linguistics and Language Studies, Carleton University, Paterson Hall 236, 1125 Colonel By Drive, Ottawa, ON K1S 5B6, Canada. Electronic address: christenrachul@cmail.carleton.ca.
authors.forename: Christen
authors.initials: C
authors.lastname: Rachul
authors.affiliation: Health Law Institute, Faculty of Law, University of Alberta, Edmonton, AB T6G 0H5, Canada. Electronic address: maeghan@ualberta.ca.
authors.forename: Maeghan
authors.initials: M
authors.lastname: Toews
authors.affiliation: Health Law Institute, Faculty of Law and School of Public Health, University of Alberta, Edmonton, AB T6G 0H5, Canada. Electronic address: caulfield@ualberta.ca.
authors.forename: Timothy
authors.initials: T
authors.lastname: Caulfield
mesh_terms: D000627:Aminophenols / Q000191:economics / Q000627:therapeutic use; D002170:Canada; D003431:Cross-Cultural Comparison; D003550:Cystic Fibrosis / Q000188:drug therapy / Q000191:economics; D016527:Drug Costs; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D006801:Humans; D009524:Newspapers as Topic / Q000706:statistics & numerical data; D009965:Orphan Drug Production / Q000191:economics*; D015363:Quinolones / Q000191:economics / Q000627:therapeutic use; D012051:Reimbursement Mechanisms / Q000706:statistics & numerical data; D014481:United States
chemical_list: D000627:Aminophenols; D015363:Quinolones; C545203:ivacaftor
keywords: Drug reimbursement; Kalydeco; Orphan drug; Patient access; Venture philanthropy