What Does Mainstream Media say About Enzyme Replacement Therapies?
CPS ePoster Library. Assen K. Jun 1, 2017; 176635; 74
Katrina Assen
Katrina Assen
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Abstract
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Background: Enzyme replacement therapies (ERTs) can be used to treat certain inherited diseases, many of which present in childhood. ERT drug development costs are high, as are market prices. Many provinces have special programs that provide coverage for expensive drugs; however, coverage of ERTs is not universal and the costs are beyond most patients or their families. Because of this, ERTs are often the focus of media attention, commonly to obtain provincial ERT funding for a specific patient. Pediatricians may be presented with these media reports and asked to support those trying to obtain provincial funding.

Objectives: Given the increasing media pressure on those who approve funding for rare drugs, 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 fulfilling inclusion criteria were reviewed for: data regarding efficacy and adverse events, mention of role of health care professionals, and sources of medical information. Thematic analysis was used to explore how efficacy was described within the articles. Data was also extracted from product monographs, and recent meta-analyses, where possible to serve as a basis for comparison. Descriptive statistics were completed where appropriate.

Results: Of 101 articles reviewed, 57 articles were included in the study. Nine percent of articles alluded to or reported data from clinical trials about drug efficacy; 7% of articles mentioned adverse events. Where opinion was obtained on the medical necessity or efficacy of the drug, only 23% were quoted from a physician. Opinion was most commonly obtained from a politician. Physicians were mentioned in only 49% of the articles. Roles filled by physicians were reported to include patient care/diagnosis, approval of the drug, or advocating for due process.

Conclusion: Reporting about the efficacy and safety of ERTs was often incomplete or inaccurate. This study is of importance as mainstream media reporting may impact perceptions of families with rare diseases presenting to pediatricians, family doctors or genetics clinics who may be candidates for ERT. Additionally, incorrect reporting of medical information may influence the social pressures placed on the government and possibly the funding approval of these drugs. Physicians should be aware of the misleading information their patients are exposed to.

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