When Nine-Year-Old Charleigh’s Life Hangs on a Ministerial Decision
What happens when a child’s life depends on a medication that costs nearly a million dollars per year? In this eye-opening conversation with Michael Mulligan of Mulligan Defence Lawyers, we take a deep dive into the tragic case of nine-year-old Charleigh Pollock from Langford, who suffers from the rare genetic disorder: Batten disease.
Mulligan walks us through the complex web of legislation governing medication coverage in British Columbia, revealing the stark truth about how these life-or-death decisions are made. Despite common misconceptions about universal healthcare, the reality is that medication funding falls under provincial jurisdiction through the Pharmaceutical Services Act. For expensive drugs treating rare conditions, the process involves a Drug Benefits Council making recommendations, but final decisions rest with government ministers and are primarily financial rather than medical.
The most troubling aspect of Charleigh’s case is that she had been receiving the $844,000-per-year treatment for some time before funding was abruptly discontinued. This withdrawal of established treatment raises serious legal questions that distinguish her situation from initial denials of coverage. Mulligan discusses a current groundbreaking case moving through BC courts that might provide a legal pathway forward, exploring potential arguments around negligence, Charter rights regarding cruel and unusual treatment, and judicial review of administrative decisions.
What emerges from this discussion is a sobering reality: when politicians claim they “shouldn’t interfere with medical decisions,” they’re being disingenuous. The system is explicitly designed to make politicians the final arbiters of these treatments after doctors make their recommendations. The criteria for deciding which children receive life-saving medications are, at their core, about money, raising profound questions about how we value human life in our healthcare system. Listen in and consider what changes might be needed to create a more just approach to rare disease treatment in Canada.
Legally Speaking with Michael Mulligan is live on CFAX 1070 every Thursday at 12:30 p.m. It’s also available on Apple Podcasts or wherever you get your podcasts.