Every year, pharmaceutical companies spend millions on “patient advocacy.” At its best, this supports families, advances science, and builds genuine partnerships. But too often, those dollars pay for glossy campaigns or photo-friendly projects that do little for the people they’re intended to help.
In my work advocating for people with rare diseases, I’ve seen this dynamic firsthand. It’s rarely driven by bad intentions; many industry professionals care deeply about the communities they serve. In my own collaborations, I’ve had more good experiences than bad.
Still, good intentions don’t always translate into respect. I once heard a patient advocacy leader at one of the world’s largest biopharmaceutical companies describe patient stories as “misery porn” — a remark starkly at odds with the patient-centric slogans on his company’s website.
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