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Jwheel86

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  1. The 7 doses of Spinraza I've gotten (5 paid for by Medicaid at $135k each and 2 by BCBS at $250k each) have cost $1,175,000 since April 2018.
  2. Minor correction, this is not gene editing. It uses a virus to insert an artificial strand of DNA into your cells (specifically the missing SMN1 gene) which acts independently from your DNA creating RNA and then SMN Protein (which we SMA patients are not getting enough of) for the life of the cell, it does not carry over to new cells when it divides. The interesting thing isn't the price tag, it's actually significantly cheaper than what we were bracing for ($5m - $8m), it's the pricing model the CEO wants to implement in light of Zolgensma and other one and done treatments. Basically what it seems like he's advocating for is a system where the drug price is based off the cost of an untreated SMA patient and any SMA related care costs would result in Novartis refunding part of the drug cost. Not sure how I feel about that or if it even work since the bulk of SMA care is not covered by private insurance but Medicaid.
  3. It's cheaper than it's competitor Spinraza, which costs $125k a dose every 4 months for life, that's after 4 loading doses in the first 4 months.
  4. https://www.nbcnews.com/health/health-news/2-1-million-drug-treat-rare-genetic-disease-approved-fda-n1009956 Zolgensma is a one time (supposedly) $2.1 million IV infusion for children under 2 years old with Spinal Muscular Atrophy.
  5. "Which is why my complicated accept to fix the ACA has a 7 year implementation period"
  6. I'm already seeing "ableist" thrown around in a few disability facebook groups I'm in.
  7. @SFLUFAN as Jwheel86 the cripple I demand the d1p crown.
  8. He's gonna pick John Kasich as his running mate.
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