Purple Canaries

Joyce Gould with Jill Gould

NPAW (National Porphyria Awareness Week) Caregiver OpinionThursday, April 11, 2019

 

 

If anyone has doubt about APF’s agenda to keep acute porphyria rare, here’s something from an 2018 Alnylam Pharmaceutical Earnings Call Transcript* in which an Alnylam executive assured a querying investor, “let me emphasize that porphyria will remain an ultra-rare disease…we’ve been working with the porphyria network to strengthen the next set of physicians….” Yup, train a gaggle of physicians in how to dismiss the huge and growing population of “atypical presentation” (decidedly NOT rare) acute porphyria patients; how to ignore (not build upon) the prior “greatest generations of Porphyria scientists/experts'” findings; how to gaslight patients, physicians and society; how to get away with HIPAA violations and so much more–but most important of all–how to keep acute porphyria in the “NIH rare and ultra-rare disease zone.

Leave a message at www.purplecanaries.com if you’d like the actual link.

 

*Q2 2018


3 comments

  1. Barbara Bradbury

    Is this god talking? How manipulative to predict this, when it’s a genetic disease and few porphyrics have no descendants. I take it that the porphyric population globally is increasing, at a similar rate as with the global increase of general population. Where are the WHO statistics on the porphyria incidence? As the disease has been known for at least 2000 years, there should be figures SOMEWHERE, but are they being hidden?
    Our porohyria historian and researcher in Australia, Dr Roderick McEwin, Directot of Health in New South Wales, had every state co-operate in urine testing psychiatric patients for porphyria, because he thought porphyrics were being wrongly placed in psychiatric hospitals. He was right ( 1973, 1975). Have heard no resounding applause from the self appointed parent organisation in America, about such extensive urine testing for porphyria. He was interestedin porphyrins, not in the precursors. Porphyrins are needed to make haeme. How history can be manipulated, as we have seen in totalitarian regimes throughout time.

    • goulds

      As always, wonderful critical analyses and questioning from a very wise woman. Might I have permission to quote from your post for my latest project? The current generation of self-appointed US “experts” chose long ago to pursue a golden path that would be abhorrent to the dedicated, honest scientists/doctors that came before them. They also know that first-line urine testing is not enough to identify every porphyria patient. At least Australian Dr. McEwin’s heart was in the right place. I’ve yet to figure out if US Dr. Tishler’s was when he participated in a similar endeavor. A very sad state of affairs all around.

  2. Barbara Bradbury

    Please acknowledge me when you do quote me, but do not be surprised if you see the same comments in my own writings.
    Keep up the good and very valuable challenge. Amanda’s phrase “self appointed” is what I have long thought and believe Freud would be so displeased to see the effect of advertising, based on the misuse his idea of the unconscious, introduced to America by a Viennese in law.

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