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  "presentationDate": "2025-08-15 00:00:00",
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      "text": "when we write for diazoxide, we always write for a diuretic at the same time, because we've seen heart failure on this drug a whole bunch of times.",
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      "text": "Highly concerned about edema and heart failure with diazoxide\nQ: “I want to understand how you use diazoxide because one of the people who I asked about this cardiac risk uses it in infants, and this person said, look, it's a known risk for us to use diazoxide. I won't use it unless I do an echo. I'll do an Echo two weeks later?”\nA: “When we use it, those are kids that are on high rates of intravenous fluids already, because their blood sugar is not being stabilized on a normal amount of IV fluid that you might give someone, even a little baby size. Because they're on such high rates, when we write for diazoxide, we always write for a diuretic at the same time, because we've seen heart failure on this drug a whole bunch of times. We're definitely cautious about it.” – Pediatric oncologist, Children's Hospital of Philadelphia (CHOP), top center for pediatric endocrinology and diazoxide use in hyperinsulinism",
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      "text": "Stunned at the price\nQ: “The company's starting to market it at $500,000 to more than $1 million a year. That's $1,500 to $3,000 a day per pill.”\nA: “Say that slowly again, the cost.”\nQ: “It's $500,000 to $1 million or more per year per patient.”\nA: “Oh my God. I knew it was expensive. I didn't even know it was that expensive.” – Pediatric oncologist, Children's Hospital of Philadelphia (CHOP), top center for pediatric endocrinology and diazoxide use in hyperinsulinism",
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      "text": "Vykat is an afterthought with flimsy interest vs. drugs that are “more useful”; Vykat “sort of like came up”\n“I don't think people care unless it’s an absolute like enzyme replacement. The other drug we're dealing with, which I hear more about is Crenessity, which is the new drug for congenital adrenal hyperplasia. That one, to me, is more useful because it's attacking something in a very logical way. It's unique. There's no other preparation that we could exchange it with. And our kids with that condition, which I probably have about 20 of, they're on these two high doses of steroids in order to suppress their high levels of testosterone-like compounds, androgens. I look forward to starting someone on that. That Prader-Willi drug sort of like came up. We'll have a discussion about it. And, of course, we'll have to learn more before the patient comes in. I didn't know about the size of the pills and all that stuff...” – Pediatric oncologist, Children's Hospital of Philadelphia (CHOP), top center for pediatric endocrinology and diazoxide use in hyperinsulinism",
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      "text": "“When we use it, those are kids that are on high rates of intravenous fluids already, because their blood sugar is not being stabilized on a normal amount of IV fluid that you might give someone, even a little baby size. Because they're on such high rates, when we write for diazoxide, we always write for a diuretic at the same time, because we've seen heart failure on this drug a whole bunch of times. We're definitely cautious about it.” — Pediatric oncologist, Children's Hospital of Philadelphia (CHOP)",
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      "text": "Source: Scorpion Capital consultation calls with experts",
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      "text": "Endocrinologist #2 indicated “we’re definitely cautious about it” because of diazoxide’s known risks for edema and heart failure; stated that his and his colleagues’ interest in trialing a patient or two is flimsy at best; and expressed shock when we indicated the drug’s price, of which he was ignorant – “when we write for diazoxide, we always write for a diuretic at the same time, because we've seen heart failure on this drug a whole bunch of times”; “I don't think people care unless it’s an absolute...that Prader-Willi drug sort of like came up. We'll have a discussion about it. And, of course, we'll have to learn more; “say that slowly again, the cost...oh my God.”",
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