Nine-year-old Charleigh Pollock is terminally ill with a neurological disorder, called Batten Disease. A drug called Brineura stabilizes her condition, but it costs over $800,000 a year. British Columbia has been reconsidering whether it will continue to pay for this therapy.
Most pediatric treatment conflicts concern whether therapy is in the patient's best interest. But here the treatment team, the patient, and the family are all on the same page. The therapy is valued as a matter of shared decision making.
Money is rarely a central issue in these cases. But here the issue appears to be framed as whether the expensive drug is warranted. It can only slow but not stop Charleigh's continued decline. At some point, it becomes unclear whether the increasingly limited benefits are worth the cost.
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