Purple Canaries

Joyce Gould with Jill Gould

Acute Hepatic Porphyria

National Porphyria Awareness Week 2020

Final 4/25 So there it is: “The number of patients” is APF et al’s ticket to the money train. For those who were lucky enough to have produced APF et al’s “gold standard” at one point or another and were granted an acute porphyria diagnosis, I understand, I really do, why some feel gratitude and […]

National Porphyria Awareness Week – 4/24

Continued… The month before givosiran received FDA approval, an investor analyst questioned AHP prevalence numbers, apparently seeking reassurance that market conditions would support financial expectations now and in the future as the potential for 5,000 patients had been mentioned before.  Alnylam’s president responded, “as we get really granular on the patients that have active disease […]

National Porphyria Awareness Week 2020 – 4/23

The sanctity of porphyria rareness permeates all that APF is about. Yet pinning down just how prevalent the acute porphyrias really are in the US has never been an easy task. APF’s website states, “taken together, all forms of Porphyria afflict fewer than 200,000 people in the United States.” “16 Shocking Porphyria Statistics” (APF-sponsored) claims, […]

National Porphyria Awareness Week 2020 – 4/22

Continued – 4/22 It took nearly three decades for APF to make its next big financially-driven motive-move—welcoming Alnylam Pharmaceuticals into the alliance (~2013). This was no doubt predicated on knowing that more governmental incentives were coming down the pike, namely Obama’s 2015 Precision Medicine Initiative and the 21st Century Cures Act (2016). By then Mount […]

ACUTE HEPATIC PORPHYRIA

National Porphyria Awareness Week, April 18-15, 2018 While telling me that her acute porphyria diagnosis, granted in her country of origin had just been revoked and the beneficial treatments she’d received there refused by the APF-connected US porphyria expert she’d approached for help, a desperately ill patient blurted out, “what they are doing to us […]