What does mainstream media say about enzyme replacement therapies?

INTRODUCTION: Enzyme replacement therapies (ERTs) are expensive drugs that can be used to treat certain inherited diseases. ERTs are not universally covered across provinces and costs are beyond the means of most patients. Media reports are commonly used to lobby for provincial ERT funding for specific patients. As physicians may be confronted with these media reports by patients, this study explored medical reporting regarding ERTs in print media.
METHODS: Canadian Newsstream database was searched for articles about three ERTs-Elaprase™, Naglazyme™ and Vimizim™. Articles meeting inclusion criteria were reviewed for data regarding efficacy and adverse events, mention of role of health care professionals and medical information sources. Thematic analysis explored how efficacy was described within the articles. Data from product monographs and recent meta-analyses served as a basis for comparison.
RESULTS: Of 57 articles retained for the study, 9% mentioned clinical trial data regarding drug efficacy; 7% mentioned adverse events. Only 23% of opinions about medical necessity or efficacy of the drug were from a physician. The majority were those of politicians. Information describing the condition was accurate in 90% of cases, although usually incompletely. DISCUSSION: Incomplete or inaccurate reporting about efficacy and safety may influence families that appear to be candidates for ERT. Poor reporting of medical information may also influence the social pressures placed on the government and affect funding approval for these drugs. Physicians should be aware that their patients may be exposed to misleading information.