Purple Canaries

Joyce Gould with Jill Gould

National Porphyria Awareness Week 2020 4/21


Why would intelligent, medically trained, oath-swearing physician-scientists (experts no less) allow such medical mockery to happen? One word—motive. And that’s what links APF et al and Hitler’s Big Lie Technique (BLT)—motive. On its face, “Make the lie big, make it simple, keep saying it and eventually they will believe it” was the launching point for both groups’ (albeit hugely different) motives. Hitler’s was to create a European “pure master race.” He openly (though falsely) attributed the BLT quote to the Jews he despised and boldly touted it to push his insane agenda. On the other hand, it appears APF et al adopted a more common motive—financial gain and power. Clearly, AIP rarity was key to that motive. To that end, APF et al established and has maintained a well-veiled, multi-faceted modus operandi geared toward insuring that AIP’s rarity would be upheld. Fronted with benevolent “talking the talk,” the modus operandi entails APF et al walking a very crooked walk built on deceptive narratives. These narratives are maintained to keep audiences e.g. physicians, pharmacists, medical researchers (in fact, the whole of the medical industry outside the porphyria expert “loop”), confirmed patients, prospective patients, media sources, public entities (including government agencies charged with overseeing porphyria) and others largely ignorant of the acute porphryias—and as such, more likely to stay in their own lanes. Pontificated for decades as dogma, many are convinced that these narratives are incontrovertible truths (“keep saying and eventually they will believe it”). They are not.

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