Courts, challenges, and cures: Legal avenues for patients with rare diseases to challenge health care coverage decisions

This paper examines the legal tools that may be available to patients with rare diseases seeking to compel Canadian governments to provide funding for required or desired treatments. In making health care coverage decisions, governments must decide whether to extend funding to cover potentially expensive treatments that benefit relatively few people, particularly when those treatments are experimental. If particular treatments are not covered by health insurance, patients with rare diseases may turn to the courts with claims based in constitutional, human rights, administrative, international or tort law, in an effort to compel the government to provide funding. Strategies that employ the courts in this way are unlikely to be successful, as courts tend to defer to government on these types of policy-driven decisions.