Good question HotcongoGiven the origins of Trofinetide, I would...

Good question Hotcongo

Given the origins of Trofinetide, I would like to think that scenario could only ever possibly play out if the local NZ Govt agency that negotiates supply arrangements with drug companies for NZ patients, Pharmac, is both chronically underfunded and incompetent ......... unfortunately, this excerpt from a New Zealand Herald article on 1 June 2022 sounds like that's exactly the case (depressingly familiar for those of us living in NZ.....!)

"A patient advocate says a newly-released investigation shows Pharmac needs a major culture overhaul. A review of Pharmac found the drug-buying agency secured some of the best prices possible but had contributed to health inequality for Māori and Pacific peoples. And people with rare disorders faced disproportionately bad health outcomes because of systemic failings, the independent review panel found. Patient advocate Malcolm Mulholland said people who'd lost loved ones after struggling to secure funding for treatment had been awaiting the release of findings. "Pharmac's governance has clearly been asleep at the wheel," he said after reading the panel report. He said the review found Pharmac decision-making had been seriously flawed." It leads you to the question: How many lives have been lost because of this?"

Let's hope that's not the case for Daybue...