Purple Canaries

Joyce Gould with Jill Gould

PORPHYRIA EXPERTS: FOR SOCIETIES’ SAKE…STOP DISMISSING, GASLIGHTING AND ABANDONING DESPERATELY ILL ACUTE POPHYRIA PATIENTS! Day 1, Purple Canary 2021 National Porphyria Awareness Week Commentary

“What we have here is a failure to communicate.” This classic line from the American film Cool Hand Luke exemplifies the alarming and capacious disparity between information provided by certain acute porphyria experts and what doctors and patients need to know in order to make informed medical decisions. For decades, these experts have (willfully, it appears) spoon-fed select information to audiences (physicians, patients, society) and shrewdly excluded information they don’t want them to know. This has led to (and reinforced) an overabundance of withholding and/or revocation of acute porphyria diagnoses—a practice that continues to this day.

By denying diagnoses and not providing truthful, complete and inter-connected information about acute porphyria “rarity”; prevalence; chronicity; progression; the (unproved)diagnostic “gold standard”; latent and/or asymptomatic versus manifest presentations; heme deficiency and efficacious, safe  treatment options, such experts have–individually and collectively–needlessly contributed to steep, persistently burdening medical costs to (and anguish for) patients, their families, insurers and indeed, societies throughout the world. Interfering with physician/patient relationships by undermining medical professionals who are intent on doing the job they trained for is highly unethical—not to mention doing so raises the specter of potential manslaughter/murder charges. Seriously.

To that end, this year’s Purple Canary’s 2021 National Porphyria Awareness Week commentary takes a cue from American poet Maya Angelou’s “You shouldn’t go through life with a catcher’s mitt on both hands; you need to be able to throw something back”. Patient voices will provide clarification with highlights from hard-fought odysseys. Citations from peer-reviewed medical journals and/or textbooks will offer what amounts to court-worthy expert testimony. Finally, declarations proffered by certain experts will appear throughout the week and provide context for the state of affairs that has confused too many for far too long. In this way, patients and caregivers will “throw something back.” All readers (especially experts) are welcome and encouraged to respond.


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