To the Editor:
We thank Dr. Cohen and colleagues for their interest1 in our article2 describing inequities in access to biologic treatments for juvenile idiopathic arthritis (JIA) in Canada. We agree with their comments regarding challenges in treating children with relatively rare diseases such as JIA under provincial-based drug funding programs. Unfortunately, as we have described in our article, access to treatment for children with JIA currently depends on where they live in Canada.
Dr. Cohen and colleagues refer to a number of misconceptions in our article that we would like to clarify. We appreciate their description of the collaborative process of biologics approval in Ontario, which has included input from the Ontario Rheumatology Association. However, case-by-case reviews for approval and ongoing renewals of biologic treatment for the hundreds of children with JIA across Canada come at a significant cost of pediatric rheumatologists’ time in preparing individual case letters and providing references, as well as the time of the health professionals and administrators to review each of these applications. We believe that it would be beneficial to have a specific mechanism by which pediatric rheumatologists across Canada would have input to the review of biologics for use in childhood rheumatic diseases, because the issues for children and youth are different from those for adults with rheumatic diseases.
Dr. Cohen and colleagues noted that the downloaded version of our article included an advertisement by a manufacturer of one of the biologic agents used to treat JIA, and raised the issue of potential conflict of interest. We emphasize that there was no pharmaceutical support or input for the article we published, and none of the authors had any conflicts of interest. The article was written purely to advocate for appropriate and equitable access to medications for our patients, in an effort to achieve the much-improved outcomes that are possible with current treatments.
A detailed discussion of whether biologic treatments should be approved for use in children with JIA was beyond the scope of our article. The issue of determining access to effective medications for children with rare chronic diseases based solely on econometric analysis is complex, and we agree that for JIA, there are few current data on which to base firm conclusions.
It is important to clarify some points regarding the study from the UK National Health Service quoted by Dr. Cohen and colleagues. The econometric conclusions of that report3 regarding the use of etanercept in JIA, published in 2001, were described as flawed by the authors. The assumptions upon which economic modeling was performed were that quality of life measurements, outcome measurements, and mortality figures were the same for JIA as for rheumatoid arthritis in adults. The final conclusions of the report were that etanercept is effective for the treatment of JIA and should be available.
We do agree that comparative cost-effectiveness research in JIA is an important goal, and our pediatric rheumatology research group, the Canadian Alliance for Pediatric Rheumatology Investigators, has a subgroup of pediatric rheumatology investigators focused on moving that agenda forward.
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